Back Door Logic

Letters To My Family

2012-01-27T16:03:00.001-05:00

I've been sorting and organizing all of my mom's papers; files that date back as far as 1958 when my parents bought their home.

Today, I found an envelope in my mom's hand writing dated February 25, 2003. Inside were letters that my mom wrote to me, my siblings, my Aunt Jay, her brother and sister (now deceased) and my two oldest nephews.

Hands shaking, I opened the envelope.

Feb 25, 2003 - 3AM

To Susan,

I just had a dream Eddie came to me. He looked angry and was pointing to me. It woke me up. I think he meant for me to take better care of myself.

Just in case, I want you to find who my beneficiary is on my SBLI and change it to you. Also, my bank book at BCU. And change name on my car to yours.

I don't want to be a burden to you. I know you can make it on your own.

Love Always,

Ma

++++++++

To Donna, 2/25/3

Help Susan as much as you can. I know your the strongest. Pray for me.

Take care of Amy and Scott. I love them both and they will make you proud.

Make sure Brad takes better care of himself.

Love you all,

Ma

+++++++

To Marty, 2/25/3

Take care of Eileen and Mother. Don't forget yourself also. Health is very important. I hope you will always be happy. I think of you often and pray for you.

Help Susan if she needs you.

Love and kisses,

Your Mom.

+++++++

To Ann and Steve,

Wish I could of seen you both. I'm not well and I don't want you to worry.

See if you can get to see John Edward and I'll be able to send you a message from the other side.

Love you both and I know I can count on you to help Susan through this ordeal.

Love forever,

Ma

++++++

To Jay,

Thank you for all your prayers through the years. Sorry I won;t be able to take you out. I know you will be OK. You've always been their for me and I want you to know how I appreciate you. God will listen to you so ask him and He will help you.

You have made it possible for me to come this far by your prayers.

Love
Your Sister in Law,
Friend,
Chum,
Bingo Partner

++++++

To Joe and Andy, 2/25/3

Haven't got to see you much lately and I want you both to know how proud I am of the both of you.

Time is precious so don't waste it. Take care of your health, it is most important. Get to see your mother as often as you can.

Joe take care of Melinda, she is a wonderful girl.

Andy I will be watching your progress from above.

Love you all,

Gram

++++++

To Flo and Al, 2/25/3

Sorry I was unable to see you. If I get past this feeling, I'll come to see you both. I wish I was able to see you more often. I will pray for you. Don't be sad. I will be with my family who has crossed over already.

Take care of yourself and keep in better shape than I did.

Love you both,

Your sister Jo.

(** Flo passed in 2006, Al passed in 2011 - neither got to see this note.)

++++++

2/25/3

To Whom it may concern,

If I forgot to say bye to someone I'm sorry. My memory is slowly dying.

I give Susan all my assets if I have any left, and don't forget my Walmart Stock.

I give Susan the right to turn off any life support system if I have any.

Thank you

(signed her name)

+++++++++++

Today, mom is still alive in a nursing home. She has declined a lot since 2003 when she wrote these notes to all of us.

Finding these letters were bitter sweet.

Seeing my mom's handwriting, so pretty and neat made me miss the days when we could carry a meaningful conversation. I miss my mom's advice. I miss her telling me that everything is going to be OK.

My mom, she has always loved her family and we will always love her!

Why The New England Patriots Won Tonight

2012-01-22T21:29:00.003-05:00

Mary in the garden, 2011

My mom, she love the New England Patriots; they won a lot, she loves winning. She would be giddy while watching them play when she was of sound mind.

Today, she isn't mentally capable to enjoy her favorite sport, American Football.

I'm not a big football fan. I can take it or leave it. I don't hate it. If I had the choice to watch an episode of "Chopped" or football, I'd choose "Chopped."

I visited my mom today. I restocked all her favorite treats and drinks. We went for a walk. She talked to her baby and it made my heart smile.

My visit with mom was pleasant. When I was leaving, I told her I was off to work at the phone company.

"Ok, Dear. What time will you be home?" She asked. A question she always asked me back when I did work as an Operator. Mom remembers me working all night as an Operator.

"I'll be home on Tuesday at 10:30 in the morning." I answered.

"Ok. That's good. But why so long?" She replied

"Ma! You saw the snow. There are lots of emergencies." I answered as though it was 1983 when I did work as a telephone operator for the phone company.

"Ok. Bring me cookies. I like those cookies you make." She said with a sweet tone in her voice.

I love it when my mother shows herself.

My drive home was uneventful.

I arrived home.

My husband was watching the game. The Patriots were fighting for a chance for a spot in the Super Bowl 2012. The Ravens were fighting for the win. I believed they were going to take it. We needed a Hail Mary.

It was the end of the 3rd quarter when I sat down with a glass of wine.

The Pats were winning.

The Pats were losing.

Fumbles.

Turnovers.

Interceptions.

"OH SHIT!"

I started to feel my heart racing.

The Pats MUST WIN!

Tonight, I am the reason the Pats won.

I used a Hail Mary.

You are welcome, New England Patriots. I saw the look of aww on your faces.

The Baltimore Ravens were giving the Pats a run for their money.

I prayed out loud. I didn't care that my husband was sitting next to me, looking at me like I was a loon. I apologized to Mary for using her for such a frivolous request, but this needed to be an exception.

I prayed with my heart and soul.

"Hail Mary, Full of Grace, the lord is with you. Blessed art though, among women, and blessed is the fruit of thy womb, Jesus. Holy Mary Mother of God, Pray for our sins, now and at the hour of our death. Amen."

"Mary, I am sorry I am pray for a miracle to win this football game, but please make him miss that field goal!"

Voila!

The rookie for the Ravens seemed to magically choke. He missed the field goal! I saw the faces on the team that believed that they had already won. A punt that should not have been missed... did Mary goose him? Hmmmm. Yay, Mary!

It was over.

The Patriots won!

Thank you Mary.

And that is why the New England Patriots won tonight.

Homeopathics: Agitation, Insomnia and LBD

2012-01-20T08:12:00.004-05:00

Homeopathic Medicine helps give my mom more good days than not so good ones

The nurses who care for my mom have been asking me to write a post about homeopathic medicine; they see how well the remedies work on my mom when she's agitated or having a bout of insomnia.

Homeopathics have been around for 200 years; it's a "whole medical system" approach unlike the traditional allotropic medicines.

"Like treats like."

Homeopathy was discovered by a German doctor who recognized the principle of similar, where "like treats like." The principle states that a disease can be treated by a similar substance that causes the symptoms in healthy people.

For example: To treat daytime agitation, my mom takes the homeopathic remedy, Hyoscyamus Niger; Henbane.

If a healthy person ate some of the raw henbane plant, they would become agitated and hallucinate scary scenes that seem real. My mom has these behaviors without eating the raw plant. Giving her a small dose of homeopathic medicine, her symptoms go away.

Our Naturopath Doctor recommended Hyoscyamus for my mom because of her natural disposition; she has a sense of humor. Hyoscyamus Niger 12 C does the trick to ease mom's agitation and fidgeting.

There are over 2000 homeopathic remedies to choose from; it's the reason why I recommend finding a Naturopath Doctor who can help navigate which to use. If the remedy doesn't work, it isn't the right remedy for the patient. Remedies are selected using the whole person; mind, body and spirit.

You can find your own remedies here using an online remedy finder.

Homeopathy is FDA approved, it has been for over 100 years. It is safe, effective and has no contraindications with anything.

Mom suffers from insomnia, a symptom of her illness, Lewy Bodies Dementia. Stramonium, also a member of the deadly night shade family of plants, solves my mom's problem with insomnia. Our ND selected this remedy because my mom would jump out of bed worrying about children. She would lunge forward in her chair and become super agitated.

Stramonium calms my mom and helps her to sleep.

When my mom sleeps at night, the following day is a good day where she's calm and happy.

If my mom eats the wrong food, like wheat gluten or white potatoes, she will become super agitated and begin trying to jump out of her chair or grab for things in the air. A little dose of Stramonium calms her and seems to counter the effect of the wrong food that she ingested.

Homeopathy, it works. It triggers a response in the body so that ones system can take over and heal itself.

Remedies are diluted forms of the plant. The higher the number, which is symbolized in Roman Numerals (C, X, M), the weaker the dose and the stronger the medicine.

There are remedies for everything that ails the human body; medicines which can be tailored specifically to an individual while taking into consideration the whole person... mind, body and spirit.

More information about homeopathy can be found here:

Good explanation of homeopathy: http://nccam.nih.gov/health/homeopathy/
My favorite homeopathy site: http://www.abchomeopathy.com/

Everyday Is A Good Day

2012-01-19T07:27:00.000-05:00

Mom, her "car" and her babies
January 14, 2012

"Okay, Dear." Mom sang to me in her happy voice yesterday when I was leaving the home. She was holding her babies; we had just gone for a long walk which always tires her out.

Mom's doing awesome. I expect that she'll be discharged from Hospice soon. Everyday is a good day for her; she feels safe and secure. She has her babies, a car and her life is complete. My dream for her has come true.

The scoot chair that mom sits in when she's not resting in bed, has become a car in mom's mind. She "drives" it up and down the halls, self propelling herself as she patrols and makes sure everyone is safe. I am grateful that the facility set mom up in the scoot chair, the Hospice chair was not as comfortable and seemed to trigger agitation.

I visited the home yesterday. I had not been to the facility since Saturday. Mom didn't miss me. She barely stayed with me, she was on patrol. I hung her cloths, cleaned up her closet and dresser drawers and talked to other residents who were happy to visit with me.

"Oh... it's you... Come here!" One of my resident friends said as she smiled and waved to me. "I need to use the bathroom!" I rushed her down the hall to her Care Aide. I ask my mom this question so much that all the residents associate me with the toilet. Great.

At one point during my visit, I was chasing my mom down the hall.

"Jo! Come here, I have a cup of coffee for you." I called to her. I had just made her a cup of coffee using her Keurig one cup coffee maker. Mom ignored me and drove herself into the dinning room.

"Forget about Jo! I want you to stay with me. I need you over here!" Mom's roommate answered back.

Difficult not to laugh out loud, I answered Mom's roommate. "But you look so good!" I attempted to change the subject, It didn't work.

"I know it.... but that still doesn't do me any good." Another answer that made me want to buckle over in a fit of laughter; I didn't.

I'm enjoying time with my mom and the folks at the home where she lives. The nurses who care for my mom have become my friends. I trust a few more than others; they've earned my trust.

I can't help but think about the day when mom dies. My routine will change again. Daily morning calls to West 2 will stop, only to be replaced by another family member calling them to check on the next new resident.

Over the last 8 months since mom's been living in a nursing home, I have made friends with some of the staff. We've been through a lot, many of them even survived the "Wrath of Sue"; some of it documented in the pages of this blog while other stories remain locked up in my private writing for publishing at a much later date, long after my mom is dead.

Right now... life is good. Mom's happy, so I'm happy. I worry less, especially on days when my "A Team" are working. This weekend, the "A Team" is on duty both day and night. I have the weekend off. No need for me to rush to the facility to keep an eye out for mom and enlighten staff who don't understand how to communicate with her.

Thank you Georgia, Stephen, Kathy and Cheryl, because of you, everyday is a good day!

Somewhere Over the Rainbow

2012-01-09T07:05:00.000-05:00

Mom, happy with her baby
January 6, 2012

Mom's doing awesome since I signed the waiver to give mom homeopathic's. The nurses give Mom the homeopathic medicine on a schedule, something that has stopped her agitation and insomnia.

Visiting my mom has become fun. I look forward to our visits. A dream come true, one that I never imagined would manifest for us. Mom smiles and laughs. She talks in complete sentences on her good days about what's going on in her world.

Seeing Mom at peace in her mind, makes all the hardship and pain that I suffered for her worthwhile. All I ever wanted for my mom was to give her a happy end of life.

I am grateful.

The facility where mom lives brought in a new Executive Director and Director of Nursing; leaders who listen. Leaders who believe that our folks worked all of their lives and deserve to be cared for with love, dignity and respect. Their compassion is contagious... outstanding role models.

Alleluia!

The energy in the nursing home is brighter; no longer do I walk through the door and see dark energy around the residents. Folks seem happier through out the building, both patients and staff.

Because of all the positive changes going on where Mom lives, I feel that my life is becoming my life again. Thank you, everyone who has helped us.

I can breath.

I can relax a little bit more; my soul has longed for peace.

Thank you. I feel peace.

Mom, she's always loved the song "Somewhere Over the Rainbow." Often she'd sing the song as we drove along, while looking out the window as though she was looking for the rainbow.

Mom's doing great; she's happy, she seems to have made it over the rainbow, where skies are blue.

A Day Out

2012-01-08T09:00:00.001-05:00

Ma sitting on the shopping cart bench at Whole Foods
August 2011

"Hi, Ma!" I greeted mom as I walked into the dinning room where she was sitting.

"Oh. Hi!!!!!" She replied back. "Come on. Let's go." She added before I could speak another word.

"Would you like to go out for a ride?" I asked.

"Yes. I haven't been out in a long time. Come on!" Mom answered back as she began to try and get up out of her chair.

Mom was having a very good day. The weather has been unseasonably warm; a good day to go out. Who knows if it would be her last day out in the regular world before she leaves this life?

Mom walked well yesterday. She was standing upright and walking strong. She wasn't leaning to the right like she had been over the last several weeks. Walking with her when she is leaning heavy toward one side is physically challenging for me. I've learned, going out is not an option when she is leaning. Mom was sharp. She needed a day out.

Off Mom and I went, she remembered how to get into the car. She recognized my husband's car and remembered his license plate number.

"189. Yup, that's right!" She said as we approached the car.

"Do you have enough gas?" She asked as soon as I buckled her in for safety.

"Yup, plenty of gas." I answered with a cheery tone.

In the car, I opened the sunroof. The sun shone on Mom's face. Her eyes were closed as she put her face toward the sun. Smiling softly, creases in her cheeks, mom reminded me of a happy dog sticking its head out the window of a moving car.

"I hope you don't mind. I used your car." Mom said in a matter of fact way.

"You did?! Where did you go?" I asked.

"Oh, I went here and there. I drove all over the place. Eddie! I saw Eddie. Are you sure you have enough gas? I drove a lot. Hey, where's Marty?" My mom was a chatter box.

"Marty's working." I answered.

"Oh, that's right. I want to see him." Mom added.

It was fun to hear her talk in complete sentences, even if it was about the reality of her hallucinations.

We went to Whole Foods, of course. Mom always feels at home in the market. She sat on the bench that is attached to the shopping cart. I forgot her bingo seat cushion. She didn't complain. She got on the bench without any trouble and didn't need any coaching.

"I need bananas." Mom said as I pushed her through the door. She remembered that bananas are around the corner!

Pushing the cart close enough to the bananas, Mom picked up a bunch as she said, "Oh, these are nice. That's good. Come on, let's go." Handing me the bananas to place in the shopping cart.

We tried the cheese and olive samples. Mom loved them. We tried raw coconut water; mom hated it. I bought two bottles for my husband and me. I liked it! Coconut is very good for cognition.

Mom had a great day out. We had so much fun, I forgot to take pictures! The picture on this post is from August of last year when I had remembered to take a few pictures; it was the day we discovered the bench attached to the cart.

Here are a couple more from that same day in August.

A Good Visit With Ma and Baby

2012-01-06T17:57:00.000-05:00

Mom and Baby
January 6, 2012

"I have five, you know." My mom said to me as she held her baby.

"...they're all around here somewhere." She continued as she looked around for her children. My mom's world revolved around her children and caring for all of us.

Mom is content.

She's happy.

The homeopathic remedies are working.

Mom was having a great day. She has been sleeping through the night; all of her days have been great.

She bounced back from her UTI.

She recovered from a cold.

I had one more day to see her happy and laughing!

The nurses and aides are taking good care of my mom; stress free visits are the best. My mom has excellent nurses, compassionate carers who help put my mind at ease.

Mom was feisty during our visit, she stuck out her tongue at her baby twice and then at me.

"Watch this!" She exclaimed to me and then she stuck out her tongue at her baby.

Mom was amused with everything going on around her. She was mocking residents crying out in pain. Mom was super happy and laughing.

Mom and I, we went for a walk. She did very well; she was able to walk the long distance around the unit. She greeted other residents as we walked by. "Hello." Nodding her head and smiling at them, not missing a step as we walked the hall.

One more day I had the opportunity to enjoy my mom; I feel fortunate.

I gave Mom a favorite treat. She looked like a little girl, holding her baby while she ate her ice cream bar; a precious moment.

An unexpected surprise to see Mom alert and walking upright; I was there... I didn't miss it.

A good visit with Ma and baby; I feel like I won the lottery.

Don't Worry... Everything Is Gonna Be Alright

2012-01-03T07:58:00.001-05:00

Mom and her baby
December 2011

Happy New Year!

I began this blog post on the morning of New Year's Day.

I woke up, put my iPad down on the table and immediately the Pandora Radio app opened. Bob Marley was singing, "Don't Worry.... Everything is gonna to be alright..."

The first words that I had heard at the onset of 2012.

So far, 2012 has been terrific.

Mom's doing well. She bounced back a bit. Death doesn't seem to be knocking on her door as I had originally thought; we have more time.

Mom loves her baby; it has taken her back to her child rearing days. Mom is happy.

Mom with her baby
New Year's Day 2012

I signed a waiver; the nurses can give mom homeopathic remedies for agitation and insomnia. Remedies that have worked to calm her LBD symptoms successfully over the last several years.

I am grateful.

Mom is having more good days. My visits with her are finally fun. We play with "the baby", we walk and we talk about my dead relatives as though it's 1968 again.

Mom is weaker. She also has a cold.

I gave her Oscillococcinum yesterday when I visited. A homeopathic remedy that always seems to ease symptoms of a cold or flu.

Ma, loving her baby
January 2012

"Don't worry.... everything is gonna be alright...."

The Pain Has Begun

2011-12-29T11:54:00.000-05:00

Ma and her baby
after our short walk
December 28, 2011

My visit with Mom yesterday was the best one I've had in over a week. She was awake and sitting up straight in her chair when I had arrived.

"Hi Ma!" I greeted her when I saw her.

"Come on!" She said to me. A phrase that usually means that she has to go to the toilet.

"Do you need the toilet?" I asked.

"Come on!" She repeated.

I shut off the chair alarm, detached the safety belt and helped her get up for a short walk to her toilet.

She wanted to walk. We walked.

She got tired very fast, only able to walk about 100 ft before she started to lean on the rail that lines the walls of the halls.

"A little further Ma, you can do it." I encouraged her.

We walked about 10 ft and she needed to sit. She couldn't stand after a short rest; something she was able to do just under two weeks ago.

"Ma, do you have any pain?" I asked her.

"Yes. My back hurts." She leaned forward to allow me to gently massage her sore lower back, something that I've done for her over the last 13 plus years that she's lived with me.

"Ah, that feels good." Mom said as I began to give her a little Reiki with the massage.

"What about your belly, Ma? Does your belly hurt?" I asked as I gently began to rub her belly with Reiki hands fully charged with soothing energy.

"Oooo. Yes, my belly hurts." Mom offered, as she sat back in the chair and allowed me to provide her a little comfort with Reiki.

Mom was not able to walk again yesterday, she told me that she was too tired. One of the CNA's ran to get Mom's chair that we had left behind in the dinning room.

Lunch was served. Mom was asleep. I couldn't rouse her to let her know I was leaving. I took a picture and left.

Before leaving I spoke with the hospice nurse. I told her about my mom's pain. I agreed to have her order a small dose of morphine to help ease mom's pain on an as needed basis. So far, mom hasn't needed any pain medication; I want the home to be prepared with all approvals. The pain has begun.

The Waiting Is The Hardest Part

2011-12-28T07:03:00.000-05:00

Shopping with Ma at Whole Foods
October 28, 2011

Walking is more difficult; mom's weak. The battle with chronic urinary tract infections appears to be winning the war on my mom's life. After the last round of antibiotics ended on Monday, Mom didn't bounce back as she has in the past.

Mom's got kidney disease, she's had it for years because she didn't manage her blood sugar and blood pressure. I know I'm not a doctor, but I think Mom's kidneys are beginning to fail. I checked the symptoms of Renal Failure ; Mom's got several symptoms. Will she fall into a coma like my friend Aggie who died of kidney failure?

I like to believe that I'm ready for Mom to die, but am I? It's inevitable, mom will die... I have to be ready!

Seeing her leaning to the right, hanging over the side of her chair, fixated on hallucinations she sees on the floor, not able to communicate; her end appears to be closer than ever.

Mom's latest decline, happened in a blink of an eye. Like a shot, similar to when Lewy first arrived into our lives nearly four years ago, mom's condition has changed dramatically.

Two weeks ago, she was walking, talking, laughing and enjoying her babies. Truly precious moments that warmed my heart.

We made the best of the life we had to live with Lewy,what other option did we have? The struggles and challenges were numerous, but the laughter and joy we were able to create, helped get us through the tough days.

The waiting is the hardest part of this journey with my mom and Lewy. Waiting for the end and watching, I find myself praying for a peaceful end for Mom.

The Last Christmas?

2011-12-25T09:14:00.000-05:00

Mom and one of her babies
December 2011

No one ever really knows when we will see the people we love for the last time. Death is part of life; like Ben Franklin wrote hundreds of years ago, the only certainty in life is death and taxes.

It's Christmas 2011. Mom is still alive. She believes that she has a baby named Joseph. She is lost in a life that only exists in her mind. The key to keeping her calm is often hidden, which is part of the challenge of caring for her.

"Hurry! He needs food." Mom was frantic as she spoke into the phone last night.

"Look. I got to go." She continued.

"Where are you going? Can I help?" I replied, hoping to understand what she was trying to express in fragmented phrases.

"Where's the key?!" Verbalizing a thought that made total sense to her.

"I have it." I answered.

"Don't you understand?!" Mom spoke through clenched teeth with a stern tone. A tone I remembered well; I was not a model child.

"How should I proceed? I need your help to understand." Calmly I asked for her opinion, a technique I use to figure out what is bothering her in order to redirect her attention to something more pleasant.

Our conversation ended as quickly as it began. Mom lost interest and rushed off to chase her hallucinations.

Today is Christmas; is it the last Christmas?

And The Baby's Name Is....

2011-12-23T07:43:00.001-05:00

Ma with her babies and Basil from Activities
December 2011

"Where's the baby?" My mom asked frantically.

"Oh, don't worry, Marte is babysitting." I reply in an attempt to put her worry at ease.

"That's right." Mom answers, allowing me to help her use the toilet. Redirecting only works once mom's question has been answered satisfactorily.

"I can't wait to go out and buy him some new cloths and things." Mom said to me yesterday as she cuddled her sweet little baby doll. A doll I bought because it resembled my nephew's face when he was an infant.

"He's such a good baby." I commented.

"Yes, he is!" Mom answers back, laughing as she gently stroked her babies cute little face.

"Sometimes he cries, but not for very long." Mom said in a matter of fact tone. When other residents cry out, mom thinks it's her baby; she cuddles him to settle his tears.

It's beautiful seeing mom with her baby. She named him Joseph.

Passion Never Dies

2011-12-19T18:54:00.001-05:00

Ma and her adopted babies
December 2011

"Oh, how did this happen?!" My mom exclaimed to me today when I gave her another baby to look after.

"Really Ma? You have to ask?" I replied in shock.

Laughing, she covered her face and said, "Oh! That's right." My mom laughed and laughed.

"Isn't she cute? Look at her eyes." My mom continued as she gently brushed her babies face.

Another resident yelped.

Mom, laughed again, believing that she had heard her baby had spoken to her.

"Did you hear that?" Mom laughed as she cuddled her baby.

"What's the babies name?" I asked.

Mom stammered and stuttered, trying to say the babies name. "I can't say it." She tried again, literally trying to spit out the new babies name.

"I adopted these two. I love babies." My mom said to me in a matter of fact way as she held her two babies.

"This one is a day and a half." My mom told Basil, the young man who does activities for the folks. She continued on to say, "Tomorrow, I am getting another one."

Mom, she loves her babies; passion never dies.

She Was My Doll

2011-12-10T09:01:00.001-05:00

Mom's reverting backward in time; gone are her care giving days to all her children and grandchildren. No longer can we call Ma and tell her our good news or bad news. She can't fix our problems anymore. She can't really express her love for us in words. To me, this is the part of her illness that hurts the most; seeing her body but her mind is no where near what it once had been.

I miss my Ma even though I see her every other day.

Yesterday I visited and mom filled my heart with joy. Who the hell would have thought that Ma could bring me peace when she can't communicate very well?

"Oh... You are so cute!" My mom held up her baby Susie and gushed. She hugged Susie the doll, put her forehead to the dolls forehead and fussed like a young mom. Smiles and baby talk; real beauty.

It was so darn special to witness when I walked through the door and saw my mom loving her baby. Was she reliving her time as a mom? Is this how she was with all of her children and grandchildren?

Returning from acupuncture yesterday, mom and I were standing in the elevator, waiting for it to ascend to her locked ward. Mom, stepped toward me, nestled her head into my chest while she put her arms around me, a real hug, the type of hugs she gave me before she got sick.

"Oh, my little Mommy, I love you." I said to her like I always did; returning the hug.

My heart was full at that moment, her warm embrace washed away all the pain that I have held from losing my mom to Lewy Bodies Dementia. For a split second, mom was back, she hugged me; once again, I was mom's daughter.

The elevator doors opened. We were pulled back in to the insanity that has consumed our lives over the last 4 plus years.

Leaving mom yesterday, I heard my dad's voice in my head, "She was my doll."

Weathering the Storms

2011-11-30T07:54:00.001-05:00

Ma, Thanksgiving 2011

Life is full of challenges for all of us. Each of us has some struggle that goes unknown to most people. Often I forget this fact when I am swimming in self-pity, worrying about things that I can not control or change.

Have you ever sat on a park bench and "people watched?"

Wondering about someone's life, looking at them and imagining their untold story has always been a favorite past time of mine. This activity seems to connect me to the individual in my sight. I feel more compassionate toward strangers; shifting my focus away from myself opens my heart.

Visiting the nursing home, I have met many folks; all of them with a life that is just as special as mine. All of them experienced love at one time in their lives. Success, failures, heartaches, loss... every one of the people I see sitting in wheelchairs in the lobby of the home have experienced life.

Compassion flows through my veins, it's the essence of my spiritual life. I believe that we are all connected and we all need each other to remind us about the importance of love. Why do we forget in the first place?

Ignorance is bliss.

Like you, I too have been ignorant to your thoughts and feelings. I was bathing myself in sadness, bringing with it more sadness. Pulling the shades of my heart, I shut you out. I cried. It felt wrong. I began to visualize us all together, happy and sharing our lives. The good times and the not so good times. I sucked it up and opened my heart to you. Like magic, healing began with a single hug... Thank you. No one ever said that weathering the storm would be easy!

Thanksgiving 2011

How Many Months?

2011-11-20T10:22:00.001-05:00

Life is short.

We all get only so much time to experience the living aspect of life. Reaching the mid-century mark of my existence on Earth, I realize how much more living I have to do.

Time goes by quickly. No longer are the days drawn out like those from my childhood. Drawn out days which felt like eternity; especially when I was waiting for a specific date to arrive like my birthday, Christmas or a school field trip.

Time. We can't see it but we can experience it. The beauty of living is we have choice, we have free-will; we can spend our time any way we chose.

Have you ever wondered how much time you have to do all that you want to do? Have you ever thought of your life in months? If you multiply 12 by the number of years you are, you will be able to determine the approximate number of months you have lived on Earth as the person you are right now.

Me? I'm about 614 months old at the writing of this post. 614 is not a very big number, especially if you look at it in the form of currency... $614 USD is not much money; it's not much time to make your life count.

My mom, she's lived about 986 months.

How many months are you?

Coping With Family

2011-11-12T08:44:00.000-05:00

The last several nights, I have been woken with my tears. Gut wrenching sadness fills me. Upon awakening, my mom immediately comes to mind as do all of my siblings, nieces and nephews.

In my waking nightmare, I see my mom laying out dead in her bed; I witness her end. I am awake. I can't wake up. I am alone. I begin to sob. I don't know where to turn.

Every day I see my mom and I know that she's dying. I am reminded by her fading existence that I need to call an undertaker STAT. Instead, I have day-mares that are paralyzing. Unable to move, another day passes and I still haven't contacted a funeral home to arrange for them to pick up my mom's dead body.

The Hospice Bereavement person I spoke with was great. The help provided allows me to better understand why my siblings are behaving the way they are toward me. It was explained to me that everyone has a role, both good and bad; it's part of the family balance.

I thought of each of my brothers and sisters. I replayed in my mind how everyone behaved when we were children. The bully, the carer, the comedian, the dreamer and the emotionally needy. Our own little model of the systems theory, my family was balanced. Unfortunately, my brother died several years ago; we are unbalanced as a family without him. (Today was Ed's birthday... he would have been 55.)

Family dynamics is wild; the root cause of my angst of Care Giving for my mom. I had a life long belief which was full of expectation, thanks to my dad. Unrealistic expectations of my surviving brother and sisters.

Nothing would make me happier to have my sisters and brother near for support. However, their individual family roles that they played when we were younger has taken precedence. Old childhood behaviors surface. Weaknesses are known, blows to the gut are delivered and excuses are answers. No wonder families are destroyed when tragedy strikes its tepid blow.

Understanding how my family works doesn't make it any easier to get through the sadness that I am feeling. Watching mom slowly fade is the most difficult experience of my life. Fortunately, Mom has no idea who is or isn't coming to see her, thank God she hallucinates.

I am tired. I wonder where I will find the strength to see my mom's dead body when the time arrives. Do I call my siblings right away and give them an opportunity to see her? If I do, I run the risk of an abusive exchange that will make coping even more difficult for me.

I pray for my mom's end to come. I pray that I will make the right choices. I pray for peace to be restored in my life.

Intense Daze

2011-11-11T09:01:00.000-05:00

October 2011
Ma with Grover, the Cookie Monster

It's been difficult having my mom in hospice, mostly because I know that our days together are limited. Living for her good days; I arrange my life. Mom's still inside her frail body, sometimes she comes out and makes me laugh. I live for the sound of her laughter, soothing to my broken heart, as mom exits this life for whatever comes next.

We live in a "me first" society, caring for family seems to be classified as having a touch of insanity; what's in it for me? A question that fills the lines of so many faces for the world to read.

What happened to the Old World family values, the real family love that I witnessed growing up with my Polish Grandmother and Aunt?

Family love is now an ideal... when did this happen? How did it happen? Why did we all let it happen?

Cope outs. The easy way out. Convincing one's self this or that, forming a belief to ease the pain of loss. There is no easy way out of this life. We all live. We all die. It's what we do in between the biggest events of our life that matters. People matter. Stuff doesn't. Money doesn't. In the end, all we have is each other.

Mom, she won't be a living and breathing person forever, her days are numbered. I choose to enjoy Mom, even though she can barely string more than 3 coherent words together. Sometimes she recognizes me ... sort of; at any given time I am any one of her 3 daughters. Hallucinations about her absent family brings her peace. "Marty, Joey and Andy came to see me" Mom exclaims with joy. "Eddie, he moved in with me!" She adds about my dead brother who she believes is alive and well.

Mom knows her family's energy and it calms her, even if the only in the flesh visitors she gets regularly are my sister and me.

Mom, she will live forever in my heart. I have few regrets. I am grateful for all the memories that I shared with her, memories that will comfort me for years to come. I gave Care Giving my all and I am left in an intense daze.

Have Your Cake and Eat it Too! How integrative medicine is the best of both worlds

2011-11-04T10:46:00.001-04:00

Guest Post: Allison Brooks

Nature and Life. These are two words that should be easy to define, but in today’s culture, the definitions become convoluted. With technology interfering, it is hard to figure out where life begins or ends, and where nature loses its place with civilization.

For example, Death should be the easiest thing to describe about life, but when technology is added, everything changes and the definition becomes foggy. With life-support technology, a machine can do the work the body can’t. This makes one think, that if the machine were not on, then that person would be dead, so what makes him living now? Do the actions of breathing make one living or does the vision of that person’s soul? In many cultures, like in Japan and Taiwan, life-support is shunned upon because when the soul leaves the body, that person is gone.

This interference of technology is what makes the definition of nature just as tricky. The use of life-support is hindering nature from doing her job. It is sad that when someone thinks of nature, a forest scene comes to mind, and not humans. This should not be the case, humans are nature, and should embrace it.

This lost sense of being a part of nature, actually has people doubting the laws and effectiveness of nature. For example, more people would chose to listen to a “white-coat” doctor prescribe a plethora of medications, before ever going to a naturopathic practitioner. What is so attractive about chemicals and medications that can barely be pronounced? Herbal teas and homeopathic cures sound friendlier. Natural remedies also, aid the body in healing; actually curing ailments, instead of just treating symptoms. This is not the case with conventional treatments.

This is why integrative medicine is such a miracle practice. It combines the best of the conventional and alternative treatments to produce a rewarding effect. Basically, “you can have your cake and eat it too”. While powerful drugs or therapies, like chemo and radiation, do their job on a specific location, alternative treatments heal the body as a whole, making it more receptive to treatment. Therapies, like Reiki, acupuncture, and massage, have proven to reduce negative symptoms, promote immune system function, and increase the overall well-being of the individual.

There have been many studies conducted over the years on the successfulness of integrative medicine with many different ailments and diseases. Many doctors recommend patients diagnosed with a low-survivability rate cancer to adopt a complimentary therapy while undergoing conventional treatments. Patients with aggressive cancers, like non-hodgkin’s lymphoma, pleural mesothelioma, and higher-stage breast cancers have shown positive results when using integrative therapies.

Allison Brooks is a recent graduate of the University of Mississippi where she had earned a B.S. in Biomedical Anthropology.

Allison is currently engaged in research within the study of Ethnography, a branch of Anthropology which compares and analyzes different cultures. Her focus is on the effects of Biomedicalization with a vast interest in numerous branches of Anthropology.

Hospice... Is It The End?

2011-10-21T17:44:00.000-04:00

Mom's in Hospice care as of today. I signed all of the papers and met with a Hospice Social Worker. I met Mom's Hospice nurse, he is awesome. His energy is so calm, even while I felt like I was on the verge of falling apart, Mom's nurse helped me hold it together in front of my mom.

Comfort measures only. No heroics to keep mom alive, just keep her comfortable until the end arrives. It's all I ever wanted for my mother.

Mom could pass within six months, she could improve and be discharged from Hospice Care. No one really knows. All I know is that I'm grateful for the extra help to care for my mom. I may get to take more time off from visiting the nursing home ever single day.

For three days, my heart has been in my throat. I haven't been able to write, my words wouldn't come as easily as they do when I typically sit down and write. During a rare moment, I was speechless; words choked and unable to come out. Tears. Few flowed but so many more remained bottled up inside, holding them in, fearful to grieve; I believed that I needed to stay strong.

Hospice will help not only my mom but me and my family too. Any of us in my family who may need to talk to someone about our mom, her illness and her impending death; we have someone to reach out for counsel.

Today, mom was out of it when I arrived. She was sleepy and slept during my entire visit from 10:30 until 2:30. She barely recognized me. I couldn't get her to wake up. Driving home, I cried a little. It's starting to set in. Mom's declining, her days are limited.

Already I miss my mom. I miss shopping with her. I miss fighting with her like we did when I was a teenager. I miss her shaking a wooden spoon at me. I miss her hugs. I especially miss her making me soup when I don't feel well. Today would be a day that Mom would have made me soup.

Thank God for Hospice. Mom's end days will be more comfortable because of Hospice. I am grateful. The reality is, the end is coming for my mom, me and this extremely long journey down the road of Lewy Bodies Dementia.

Life Decisions

2011-10-18T08:56:00.001-04:00

Who knew what it would mean to be my mom's Healthcare Proxy? I sure didn't have any idea that over and over again I'd have to make a decision to either extend my mom's life or let nature take its course to her demise.

Lewy Bodies Dementia is cruel, a true slow death with peaks and valleys of good days and not so good ones. One day Mom is alert and dancing, the next day she is agitated, confused and hallucinating about my dead brother.

"Eddie's here! See him?! Where are you going? What time will you be home?" She asked my dead brother yesterday with closed eyes. I don't know what she was seeing, but I can tell you, my brother was with her. Ed's visits always calm her and make her feel that she's not alone. Friendly hallucinations have become her comfort and help get her through her days.

Last week, my husband told me about an article that he had read about Defibrillators (read the American Journal of Nursing article here); patients who don't have them shut off will be repeatedly shocked, even after they die. I can't imagine what it is like for someone in hospice, waiting for ones last breath to occur, heart ready to let go but the Defibrillator causes the demented senior to be shocked repeatedly in order to keep the heart beating.

The night I read this article, I didn't sleep all night, worrying if my mom had a Defibrillator or a Pacemaker. I never really paid attention to the type of device she had implanted back in 2005.

I called the Pacemaker clinic first thing in the morning and left a message, "Hi, I read an article about Defibrillators and want to schedule an appointment to shut my mom's device off..." I became choked up, I was literally giving the order to pull Mom's plug. It sucked to do it but I had to, prolonging her life with a Lewy Bodies Dementia prognosis is not going to happen as long as I am alive.

The clinic returned my call and assured me that mom has a Pacemaker which does not give electric shocks and are not shut off; we will wait for Mom's battery to die.

Yesterday, while visiting my mom, she suddenly was running a high fever of 102. She was shivering and shaking, eyes closed, hallucinating about all of her family both dead and alive. She sort of knew that I was there with her, although I can't be sure she didn't think I was my sister Donna.

The life decisions for my mom that I need to make over and over again are emotionally difficult. I keep reminding myself that my mom is suffering, trapped in her mind with a body that is declining. Telling the nursing home not to do anything extraordinary to keep her alive is a challenge. "Comfort measures only," is my repeated request while I dance with mom and wait for her final day on Earth to come.

It would be so much easier if my mom hadn't lost her mind and could communicate her wish about life or death herself. It would be so much easier if she had a terminal illness like Cancer that would take her quickly. The long and slow drawn out end of life that comes with Lewy Bodies Dementia is brutal for everyone.

Lewy Bodies has ripped my life apart. Few family members in site; I get angry. I have trouble understanding why my Mom and I were left alone to face this horrible illness. I needed to understand so I formed my own conclusion to give myself some peace. I am now of the belief that my family doesn't know what to do or say; heads in the sand like an ostrich is easier than facing the long and slow death of our Mom. I often wonder if I too would be scarce if one of my siblings was caring for our mom instead of me.

I have learned something through this heartbreaking journey with no happy ending, it takes courage to drop ones ego and replace it with compassion. Compassion for others is possible, it can be done... I am doing it. Me! The girl with the ego the size of Texas.

Bittersweet, I wait for my mom's end to finally arrive while I cherish her good days; days that make her life decisions much more challenging for me.

Boss: New TV Series Where the Protagonist Has Lewy Bodies

2011-10-14T16:48:00.002-04:00

MUST SEE!

New TV Series on Starz beginning October 21st at 10PM.

Kelsey Grammer is a high powered Mayor who learns in the first episode that he has Lewy Bodies. I watched the first 5 minutes of this episode and immediately began to cry.

Hearing the words, what it is and what potentially is coming for my mom, was difficult to hear even though I've been living the nightmare with her.

But...

People need to be aware of this illness; it could happen to any of us at any time. I do have an opinion about how this illness should be treated based on my experiences with my mom. There isn't a cure but I do believe there are natural remedies people can take to lessen the scary effects. Food, exercise, acupuncture, hypnosis, Reiki and homeopathic remedies have worked well for my mom. I highly recommend seeking out a Naturopath Doctor who understands how to use natural remedies. The results we've had with my mom have been amazing.

This blog is dedicated to my journey with our personal journey with LBD...

Sorry... No Beds!

2011-10-12T08:02:00.003-04:00

(Previous title of this post - "Nursing Home Placement Discrimination", I like the new title better.)

My head has been spinning this last week.

I've been waiting to move my mom out of the facility where she currently lives to one that I had thoroughly checked out.

I did my homework where nursing homes are concerned. My husband and I have check lists, lists that we used to prioritized our choices for Mom's final living quarters. It was a grueling process while caring for my mom at home.

Who knows if I am the reason that mom isn't getting into facilities that we've been waiting for over a year and a half. Every time I call, I'm told the same thing, "no beds." Even when I've walked through facilities and saw empty beds, I was still told, "Sorry, no beds."

Last week, one of the facilities that we had been waiting on, set up a site visit to see my mom. Mom was out with me when the nursing home arrived to "see" her. Mom's day nurse told me that she gave my mom a good report. She also told the nurse who arrived that I am very involved with mom's care, that I come and help out every day. Mom's regular nurses like when I come because they have more time to help other residents. One would think this was a good thing, family that pitched in, right?

WRONG!

I called the facility after they had "seen" my mom. The admin person was nasty, her tone changed when she heard it was me and then said, "We don't have an appropriate bed."

When I had called, I didn't know they had not seen my mother; I would have asked how they had made their decision. Mom's nurse told me that my mom was out with me when the nurse arrived.

Not sure if I'm being paranoid or if my suspicions are true; nursing homes don't want family snooping around and causing their ratings to go down because of reported violations.

Makes me start to wonder about the damn rating system. Have nursing facilities figured out how to circumvent the rating system by refusing potential residents who have involved families? Involved families are encouraged to report neglect and abuse as indicated by signs posted around the home. How else can it stop if we don't tell someone what we see?

I did think that it's because my mom has LBD and it's a difficult illness to manage. Even the nursing facility that is supposedly very good with Lewy Bodies Dementia, keeps telling me that mom needs to wait 6 more months. I've been waiting 6 more months for a year and a half.

Personally, I've come to the conclusion, nursing facilities with higher ratings on paper, may not be the best choice after all. I can see the loop hole that the "so called good homes" use, discrimination that can not be proven.

No Problem.

I don't want my mom in a home where families are not welcomed.

Today, I look at my mom's facility with new eyes. Although the place where my mom lives has it's downfalls, they didn't discriminate against my mom and me. The facility is willing to work with me to make life better for all the residents. Albeit slow progress, I do see a light at the end of this long dark Care Giver road that I've been traveling for so many years.

If I had to do the exercise over again, to find a home for mom, I would not have waited as long as I did. I would have talked to my mom years ago when she was more mentally with it and explain to her that she needed to move in to an assisted living facility.

I have discovered that it's easier to get someone placed in a facility if they are not crazy with Lewy. Lewy seems to be a big skull and cross bones, a label that scares the be-jesus out of facilities that know the face of this illness.

Something has to be done to help Lewy Bodies sufferers and their primary Care Givers. The system isn't working. Could I be right? Are nursing homes secretly discriminating against potential residents because of their illness and or their Care Givers?

Taking Rides From Strangers

2011-10-10T23:44:00.000-04:00

Mom's Great Grandson
... looks a lot like dad.

It was March 1977 and I was 16. I had two nephews, one was about a year old, the other was 3 years old. I will always love my nephews, Joe and Drew. We grew up together.

It's because of the boys that I had learned the responsibility tied to children; children are forever; not in my cards. I am grateful for my nephews Joe and Drew for being a guidepost on my life's journey. I love them.

Tonight, I was thinking of the seniors at the home where Mom lives. I began to reminisce for all the old folks that left an impression on me... there were so many; most never told me their names.

One freezing cold day in March, I was babysitting for my nephews. I was bored with their house and decided to hop the bus from the side of town where they lived to City Hall Square in Lynn where I lived.

I bundled the kids up as best that I knew how at age 16. Andy (now Drew) was about a year old, barely walking and cute as a button. His massively big blue eyes got him lots of action figures when he was older. Joe was 3 years old and my little buddy; Joe was my first 'real' doll who looked like a little cherub with his pudgy cheeks.

Waiting at the bus stop, it was freezing cold. The wind was horrible and the kids were crying. An old man pulled up to the bus stop and asked us if we wanted a rid. He saw how cold it was and worried that we would freeze waiting for the bus. It was wicked cold so I said, "OK." My nephews and I hopped into this strangers car and he drove us to my home.

No problem. No issue. Just a sweet old man who helped me. No wonder I love seniors.

My entire life, seniors have been my guardian angels... now, I get to pay it forward and become the guardian angel for a senior.

Isn't life grand?

Taking a ride from a stranger isn't always bad... it is more than likely dangerous and thinking about it now at the age of 51, it's freaking scary that I even did that with the kids. I don't even know if my sister knows... well, she does now.

The lesson I hope to teach is sometimes it's OK to take a chance.

Lately, life at the nursing home feels like I'm taking a ride from a stranger...

Change Your Thoughts... Change Your Life

2011-10-09T10:56:00.003-04:00

Mom and me at Whole Foods
September 2011

The collective mind of many individuals tends to either create or solve problems. It takes one person to start any thought, birthing an idea that permeates other minds.

The mind is simple, emotions make it complicated.

People are followers by nature, no one wants to be singled out and viewed as a freak. It's why it's so easy for one negative person to spoil life for everyone. It's easier to talk badly about ourselves than it is to build ourselves up. I feel that fear of being different is the root cause to our personal flagellation.

Why follow when you can lead?

Based on my observations, a follower is someone with a low self-esteem. Armed with a sour view of the world around them, folks wonder why their lives are miserable. It's easy to fall into negative thinking, it seems to be everywhere. Sadness prevails and more of the same is ushered into lives that are already stuck in a ditch.

Being down and troubled clouds our thoughts, keeping us captive in a belief system that just doesn't work to bring us happiness. Negativity is everywhere and it's our choice to either bath in it or take a daily emotional shower.

Visiting Mom's home, I have observed the behaviors of all the employees from the top down. Like an ocean tide, the emotions of one will suck in everyone in it's path; negative and positive. Knowing what I know about the mind and how to create my own personal happiness when the world around me seems to be crumbling; I find it painful to watch.

Initially, I too was sucked in to the madness of the wild emotions that fly around Mom's home. I found myself sad every single day; crying... again! I began asking myself how having my mom in a facility was good if I was crying every day and beginning to get physically sick again?

I had to do something to change how I was feeling. I began to use self-hypnosis on myself. It works. I know how to change my mood. I know how to make myself happy, after all only I can make myself happy.

I began practicing a simple technique that I had learned while studying hypnosis. Each morning, I throw the bed covers off as I jump out of bed and exclaimed to the world around me, "Today WILL BE A GREAT DAY!"

The mind is suggestible. Whatever we hear, whatever we hear ourselves say repeatedly, our subconscious mind hears. It's the basic principle behind why bad things seem to happen to good people. I believe in the subconscious mind. I believe that I hold the power within myself to change my circumstances in life. You do too.

My belief comes from my personal experiences using this simple self-hypnosis technique; using one's voice to create the belief that transforms your life into a paradise. It's possible, even when the proverbial poo is hitting the fan.

I could explain in detail how this works but instead, I'm going to show you HOW to do the simple self hypnosis technique, so that you can experience the explanation.

It takes strong emotion and feeling to help manifest a thought into reality. That's why it's so easy to manifest crap in our life. When we worry about something with strong emotion and feeling, when we fuel the idea with thought; we are creating the very thing we want to avoid.

Think about the stuff you are worrying about right now? Is it helping to make your life any better or is your greatest fear manifesting?

My personal example:

My greatest fear in life was putting my mom in a nursing home. I worried for decades about the day that I would need to take her to the place where she'd probably die. I thought of all the guilt trips that she had inadvertently placed on me.

You see, Mom worried about the crazy gene, the inherited gene that seemed to make everyone in her immediate family, nuts. Mom worried so much that she gave me her worry, her fear was implanted in my impressionable mind. The result? I became my mom's Care Giver and worried about nursing home placement.

My thoughts became obsessive with worry as she became more ill; strong emotion and feeling made my worst nightmare become my new reality. I cried. I sobbed. I created my own misery with the thoughts that I had chosen to hold.

I knew how to solve my problem.

I was burned out, I couldn't get myself out of my own personal hell. Something had to change...

I chose to change myself.

I took slow deep breaths. I practiced breathing again and was conscious not to take shallow breaths. I filled my lungs with as much air as I could hold. It felt good to expand my chest cavity with fresh oxygen. My thoughts began to calm. I began repeating positive affirmations that created a good feeling within. I felt like I was coming home.

EVERYTHING IS GOING MY WAY!

I repeated this phrase out loud and with strong feeling. I am passionate with my belief in this phrase. Every day on my drive to visit my mom at the nursing home, I drive and repeat my affirmation. On days when I'm feeling a bit blue, I have to make an effort to do this exercise.

Something amazing happens ... everything begins to go my way. It feels good.

EVERYTHING IS GOING MY WAY!!!

It works. Try it. Believe in the power within YOU and YOU can transform your life. Happiness is looking for you. Change your thoughts and you will change your life in so many ways and on so many levels. Repeating positive affirmations will keep your thoughts from drifting into the weeds. You deserve to be happy, everyone does.

Visiting the Nut House

2011-10-03T08:48:00.001-04:00

Dr. Clown

It's never easy to visit the Nut House, people screaming and attempting to communicate; sounds that blend together like it's own symphony of insanity. On the surface, it is down right frightening to enter the Unit where my mom lives.

Why do I go everyday?

Over the hundreds of hours that I have spent at the nursing home since my mom has been admitted, I've gotten to know my mom's friends. I have a few favorites; they've got personality even in their demented state of mind.

The most rewarding aspect of visiting the Nursing Home is seeing the folks smile. My mom is usually happy to see me. Occasionally, she is pissed off and declares her disdain for me.

Recently, I spent the entire day with her, took her out for a drive, bought her a coffee and had a few good laughs. Only later did I get reprimanded for not being with her; she believed she was with my sister Ann. I can't win with my mom, she redirects her anger meant for my siblings, toward me.

Mom feels better thinking that she's not been abandoned by her children. I'm glad I can fill the void. I fill the void for a lot of the residents. It gives them better days and keeps the Nut House a bit more peaceful.

I love the Nut House, I love all the residents and seeing their smiling faces. It's easy to make a difference in someone's life. I am on a mission to teach the world how to embrace a senior. A little goes a long way in the Nut House!

I Want To Be A Singer

2011-09-28T22:09:00.003-04:00

Mom dancing with her favorite activities person, Kathy
Kathy is awesome!

So many people think that they can sing; heck, watch the first few shows of American Idol. My ears!

I love singing. I sing a lot, especially when I'm happy because it makes me happier. I sing Frank Sinatra songs; I know some of the words and all of the melody. I sing out loud in stores when I'm with my mother.

"Somewhere.... beyond the sea... somewhere, waiting for meeeeeeeeeeeeeeeeeee!"

My mom likes it when I sing. Sometimes I wonder if she thinks it's my dad singing to her... he had an amazing voice.

Last weekend at the home, a few residents were in the hall waiting to be put in their beds. I was walking with my mom. I started to sing. My mom started to have a spring in her step.. bouncing more with each foot forward. I took her in my arms and we started to dance in front of the residents while I sang. I was cheered on!

"Beautiful!" My little friend shouted out as she tapped her foot and hands, smiling as she watched me dance with my mom.

Egged on... I sang more, with feeling and emotion as I danced with my mom.

My other little friend, she started to sing along and tap her foot too. It was fun to entertain the folks in the hall. Now, I want to be a singer.

So... I'm going to sing.

I gathered all the happy Frank Sinatra tune lyrics and memorized the words... come this weekend, I will begin to perform for my mom and her friends.

Why I Quit Facebook

2011-09-27T07:21:00.004-04:00

I am not mad at anyone. I am just done with the social madness where folks hide behind a computer screen, playing silly games and sharing way too much information voluntarily.

To me, Facebook seems like a data mining application, one that everyone lines up to be a part of something that doesn't exist while feeding data bases somewhere with information about your political party preference, religious beliefs, purchase and social habits.

Information is being gathered on all of us, every minute of every day there are databases being updated with data on each of us. Even this blog post will be put into a database somewhere to be used at a later date to possibly sell me something.

Why make it easy for someone to buy information about ourselves and then use it to market to us and sell us things. All the LIKE'ing for businesses, products and services, has turned Facebook into just another place for me to get harassed to buy this or that or to believe in this or that.

I've noticed that if anyone thinks different than the group, the group turns on the individual in an attempt to discredit them. Facebook ... who needs it? NOT ME!

I quit Facebook.

I am tired of reading posts that piss me off. I am tired of watching all the hours people piss away, wasting precious time that can be used to make ones life better instead of complaining about it publicly for the entire world to see. Who cares?

I am done with being "sold to." I don't want to LIKE your products or services anymore. I don't care how good they may be... I am sick of being bombarded with Ads.

My inbox is full of junk mail. My email is being sold. My information is being sold. All of us... everything that we do on any social media site is gathered to form an intelligence on us so that we can be the next victim to someone somewhere trying to sell us something.

I quit Facebook and it feels good.

Please don't be offended. I still like all of my friends and family but I am now only going to talk to you in real life. No more Facebook. I'm done with it. It's creepy and scary to me. It's morphing into something that is out of "1984", a book written by George Orwell about Big Brother watching.

Big Brother is doing more than watching us... it's gathering information on us, valuable intelligence so that how we think or how we vote can be manipulated.

People are suggestible. Once your magic buttons of life are known, you can easily be made to believe something that will help someone else have personal gain, even if it causes you pain.

For me, I am not playing anymore. Yes, the machines in the clouds will continue to gather information on me but I am making a choice; no longer am I going to make it easy. I am using my power of "NO" and no longer will I willingly give valuable data away about myself.

So long Facebook. You were a great tool to reconnect me with friends that I had made throughout my life. You even were instrumental in helping to reunite my cousin and me; just in time for Uncle Al to witness before he passed.

Facebook... thanks for the memories. I am ending our relationship. It's YOU, not me...

Haste Makes Waste

2011-09-25T11:58:00.002-04:00

Now if I only put the laundry away instead of waiting, I wouldn't need to re-wash the load! Thanks Sammy.

What Was That Jay?

2011-09-22T12:07:00.001-04:00

Mom at Mann's Apple Orchard
September 2011

People love stories; something about hearing a story, true or not, will create a belief. Story telling has been how we've communicated as a race since the beginning of time. Everyone has a story, some of us are better at it than others.

I notice when I'm at the nursing home that the residents listen to EVERYTHING that is being said. It doesn't matter who you are, if you are talking in their home, they will listen. Eavesdropping is all these folks who live in a home have going on for themselves, it's how they gather information.

Earlier in the week, I was talking to one of my mom's nurses that I like very much. She is good to my mom.; I appreciate her; I don't tell her enough. We were chatting at the nurses station before I was leaving. Mom and a few of her friends were gathered around in a semi-circle, listening.

I was telling a story about one of my adventures with my mom before she became ill. I noticed some of Mom's friends laughing, they were interested in hearing what I was saying. Then one of the nurses asked if we had seen the news about the baby who was left in a school van accidentally and died. All my mom heard was a baby was dead; immediately she began asking questions. Her friends also began to have a concerned look on their faces, "what happened to the baby?" Mom asked.

"It's OK. The baby is with it's mother." I answered. Gazing at mom's nurse, raising my eyebrows, I tried to give her a look to tell her to stop talking about the dead baby. She didn't read my face, she continued talking about the news story. I abruptly changed the subject. I worried that the talk of the dead baby would stay with my mom and cause her to go searching for it at a later time.

What I've discovered with seniors is that they all love to eavesdrop. It seems to be how the folks entertain themselves at the home, listening to folks talking and gathering information that is later filtered through a demented mind. Rarely is the remembered story true to the original.

Who knows if mom's sleep disturbances are related to what she over hears? I hear lots of unhappy talk going on. I'd have a hard time staying positive too if I had to work in a place where I was not respected or valued for a job that I was doing.

Care Giving is one of the hardest jobs on the planet.

Unwanted behaviors become apparent with my mom when she's heard something unpleasant; often she will hallucinate and search for whatever is on her mind. Typically, she's looking for a baby that needs help.

Unfortunately, one of the residents cries like a baby and Mom wants to help her. It's why she frequently goes into the woman's room, she hears her cry and her mother instinct jumps into action. Mom's entire adult life was devoted to her children and protecting us from harm. No wonder she is frantic when she hears "the baby" cry.

"Where's the baby?"

I wonder how the aides and nurses handle the situation when Mom goes in this residents room? Do they answer her question and tell her the baby is going to be OK, that her mom is coming to help? All my mom wants to know is that the child is being looked after, once this question is answered she is easily redirected.

If any of my mom's questions go unanswered and she feels bullied or pushed, she will turn into Josie the Super Bitch. A side of my mom that is miserable for everyone.

My mom needs to feel like she's got control of her life, even if it's perceived control. A successful caregiver for my mom will go with her questions. They'll ask her when she is anxious in her seat, "Do you need the toilet?" If the answer is no, ask her "Well, show me where you are trying to go." Let her up and allow her to lead. Ask her what she thinks would be a good way for you to proceed in order to help. It's pretty easy once you leave logic out of any conversation or communication with my mom, she is demented, she doesn't have the ability to reason very well.

Mom doesn't often remember the initial cause of her upset but she seems to hang on to the emotion; emotions that seem to trigger not so good days and nights.

I wonder... is my mom having upsets because of what she overhears folks talking about around her?

Mom hears my name being spoken and it makes her nervous. She manages to spit out a few words that tell me she's concerned for my safety. She's worried that folks are attempting to hurt me. It could be why she seemed frantic yesterday, wheeling herself in her wheelchair, crashing into people and being difficult. "NO!" was the only word she could say yesterday, even when she meant YES.

Mom hears well, she knows everyone is upset. She's a mom and wants folks to be happy. She is one who always tried to solve everyone's problems. Hearing folks complain, she searches for a solution; no wonder she's going mad some days.

It's hard to remember that we are in a nursing home with residents who are memory impaired. It's scary for each of these people, they are in a strange world that no one really understands, not even themselves.

Yesterday, I was talking to one of the resident's daughter. I was telling her a story about my mom and her brother. I told her that Al passed in April from the same illness that mom's been diagnosed. Suddenly, I hear the good Sister calling to me down the hall, "Jay? Jay? What was that Jay? I'm so sorry, did your husband die?"

Sister heard me talking, she was eaves dropping while she waited in the hall to be brought to the activities room. I explain to her that everything was fine, my husband is alive and well. "He is not good with housework, that's all." I offered as an off the wall answer in an attempt to change any potential fixation on death. I don't know if it worked to change her mind. She could have already gotten stuck on a disturbing thought that will surface at a later time.

The moral of this blog post... we have to ALL be careful what we say around the residents in nursing homes. Even though they may not be able to speak, it does not mean that they are all deaf. The residents hear what we say, every word is heard.

From my experience with my mom, I do know that anything upsetting, like TV news or stories that are unpleasant will morph into a hallucination or a belief. It will become her reality and then all bets are off for keeping her in a happy place. The main reason I stopped having my mom watch TV is because it triggers hallucinations and difficult behaviors.

"What was that Jay?" A question that I will ask anyone who starts speaking words that could frighten my mom and her friends. A friendly reminder is all it will be. We all need to be reminded, even me. The next time I forget and I start dishing out negativity, ask me the question... "What was that Jay?"

Today Will Be A Great Day!

2011-09-17T09:27:00.000-04:00

Sour faces and attitudes, regardless what you do for a living, will make your job seem to suck way more than you think it should. Feeling trapped, needing money to survive, people stay in their job; a job that becomes a drudgery day in and day out.

Many of us start out in a new job, excited and ready to make a difference. Our passion and our positive attitude, untainted by office politics gets us jumping out of bed with excitement.

Remember how good it felt to start your new job? Why not keep that feeling alive the entire time you work for whatever organization that saw the good qualities that you possess?

It's not impossible to be happy when the world around us appears to be tumbling down like a house of cards. I've said it before, I'll say it again... Change begins with you.

Living through the most difficult time of my life as my mom's Care Giver, I often felt like I would lose my mind. I have experienced a deep heaviness and sadness. Emotions born from my lack luster attitude easily took root like weeds in a garden. I didn't tend to my "happiness within garden." I began to feel hopeless and asked myself, "will I ever see happy times again?"

Looking outside of myself for answers, I came up empty. No solution could change how sad I felt; only I could change how I viewed my situation.

Glass Half full or half empty?

I had to change. My upset energy, my negative emotions and sadness were making everything in my world turn upside down. Rapidly, like a massive hurricane every ounce of hope was lifted away, far away. How was I going to change?

How did I change? What do I do every day to keep positive energy flowing from me to everyone around me?

I chose to be positive. Every morning when I get out of bed, I jump up and exclaim, "TODAY WILL BE A GREAT DAY!" Saying this aloud and with feeling sets the mood. I expect my day to be great and it is.

I believe that I hold the power to create my own personal happiness. Using the power of my mind, I am able to transform my life. We all deserve to be happy and only YOU can chose to feel happy or miserable.

The ABC's of life... attitude, belief and choice. What's your choice?

Our attitudes are like magnets. If you chose to be sad and forlorn, you will attract more of the same. It's possible to rise above the stinging nettles of life, the choice begins with you. Believe in yourself, believe that you can be happy all the time. Make a choice to have a positive attitude; your glass will be full and you will be able to share it with others. Together we can make a difference in each others life. People need people. We need each other to lift us up when we are down.

To me....

Today will be a great day!

United We Stand.... Divided We Fall

2011-09-14T08:22:00.001-04:00

I have spent countless hours at mom’s nursing home in an attempt to get my head around the reason for the neglect and abuse that I’ve witnessed.

Everyday, I observe and document the type of care my mom and her friends receive. I became extremely pissed off; how dare these people hurt my mom and her friends?

Initially, I was apprehensive to complain. Dr. Zucker, mom’s Geriatrician, frequently reminded me to be good to the nurses; "they’re overworked," he sympathetically offers.

Because of Dr. Zucker, I made every effort to visit mom during meal times. I wanted to make a difference and let the staff know that I am there to help. It has been exhausting. I go every day with little time off. I gave my time away for free; it was unappreciated. I was not respected. I felt like an intruder; how dare I question the care mom was receiving?

The day I walked into the nursing home and saw my mom restrained against her will, shirt half off, too small compression socks which had rolled down to her mid-calf and cutting her circulation, causing a weird bulbous vein to form on her ankle; I took my gloves off like a hockey player pissed because he was hit illegally by the opponent.

Enough is enough!

Watching the staff, I became angry. I felt as though my good nature was being taken advantage of by the care givers. “Oh, Sue’s here, we can all go on break together.” WRONG! I was left with patients, lots of patients who require lots of care while paid employees cajouled with eachother in their native language. My confidence diminished. I began to wonder what goes on when I am not around. I spent more time at the facility. I became more stressed out and wondering how to get my mother out of the hell hole I had inadvertently placed her.

No longer was I going to wait for more abuse and neglect to transpire. I began my new career as a complainer; mom and her friends needed the power of my voice.

I have a voice and I am not afraid to use it.

Initially, I did put all the blame on the staff. It’s what all concerned family will do, after all these are the people who have our loved ones in their charge. However, through the magic of complaining, I discovered something; a fish rots from the head.

Management doesn’t do much to help solve the problems. Knee jerk reactions from managers are exasperating the situation. Do this. Do that. Don’t do this. Don’t do that. Barking orders is futile. It’s akin to a conversation between two people who don’t speak the same language. Talking slower or louder is not an effective method to communicate necessary change.

Nursing facilities need leaders who respect their subordinates. Mangers need to be willing to get input from everyone, especially the staff who are working in the trenches. Why not take advantage of the intelligence these folks have gathered and possess? It doesn't cost anything to listen. Listening, from my professional experience is a skill that leads to cost effective solutions to big problems. Why reinvent the wheel when your staff has lots of wheels to share with you?

Nursing home leaders need to adopt a team work culture; it’s the only way the abuse and neglect will stop. In my opinion, team work is a step toward stopping the complaints of concerned family and friends. It's not hard to build teams; people want to do a good job.

Employees need to feel empowered. It’s proven that an empowered worker, one who is recognized for their good work, is a better employee. It feels good to be noticed for a job well done. It doesn’t need to be in the form of money, although money is always a nice reward for a job well done.

Respect. Respect begets respect. When management respects their employees, employees will naturally begin to have respect for everyone, including themselves. The care that they provide will naturally improve because their attitudes will be better.

Nursing home care workers are important and need to be honored and valued for what they do every day. Families need to lighten up a little on the care workers and raise concerns with the Administrators of the home. There's always a root cause to every problem; from what I've observed, a troubled staff is a by-product of poor management and the desire for increased profits at all costs.

I have witnessed the negative affects of Corporate's desire to increase profits off the backs of frail residents. It is an autrocity. Cutting hours and hiring cheap help is demoralizing to the dedicated healthcare professionals who are employed in nursing homes everywhere.

Nursing home care needs to be consistent. Changing the Care Giver faces is confusing to the demented mind; familiarity eases the patients stress. Less stress leads to better management of patient care. It cuts down on employee burn out; burn out is a sure way to open the door for a potential lawsuit.

Today I wonder, how will I fight this battle alone? I need a posse. Will you join my cause? Will you stand up and speak for those who can’t speak for themselves any longer?

United we stand. Divided we Fall. Together we can all make a difference in each others lives.

Touche!

2011-09-11T11:53:00.002-04:00

Mom picking out her peaches... just like old times!

Yesterday, I visited Mom at lunchtime.

My plan was to help her with lunch and then take her to Mann's Apple Orchard; a trip we often took together before she lost her mind. Familiarity helps her to have better days. I do all that I can to make her days as "normal" as possible. Shopping has always been her favorite past-time, especially shopping for food.

I walked into the dining room and Mom was already seated at a table with one of her friends. Mom had a bib on and was dancing in her seat. I asked Mom, "Do you need the toilet?"

"YES! Oh thank you." Mom answered. I took her to the restroom and she settled back down in her wheelchair, ready for lunch and then a trip to the farm.

"Stay here Ma, I'll get your tray." I said to her with enthusiasm. She was having a good day; she slept through the night in her bed. She was not left to sit in her wheelchair in the hall all night in front of the nurses station.

I asked an aide for her tray and he told me that my mom now eats over in the area next to the nurses station. He told me that her tray was there and that's where she is now assigned to eat.

Confused, I wheeled my mom to her new designated area. An area away from all of her friends; so much for socializing.

The aide assigned to the residents was in the dark room; it smelled like a toilet. A strong urine smell that began to turn my stomach, reminisce of the Boston Subway that I rode when I was a kid. How on Earth are people expected to eat food in an area that smells like pee? I couldn't sit in the room. I asked the nurse supervisor where we could sit and have lunch because the room smelled very bad.

Immediately she picked up the phone and paged maintenance. I told her that it was going to take a lot more than maintenance to clean the area in time for my mom to have lunch in that room. The carpet needed a steam cleaning or better, remove the carpet all together.

I've seen a resident pull out his wiener and arch a stream of pee all over the floor next to his chair; in the very room that my mom was now assigned to have her meals.

I asked the nurse supervisor, "Where can my mom have lunch?"

She replied, "Well, she can eat downstairs in the main dining room but the elevator is broken. You could also chose to have lunch in her room."

I was taken aback. I had no explanation why mom and I were no longer welcomed in the dining room to have meals with her friends.

I picked up mom's tray and went to her room. Her bed tray was missing. I asked the aide in the dining room for one and then I told him that the room smelled like urine and it was not a pleasant place for lunch. He told me that he was sorry, the order came down from the big boss that my mom needs to eat in that other area. He couldn't look at me when he spoke.

He said, "Well, you can come in and find a place." Always helpful, this aide is one of the quality folks that the home has employed.

"I better not. I don't want to get you into trouble. I'll take my mom to her room and then we'll go out to the farm. Thank you anyway." I said to the aide as I pushed the tray table into my mom's room where I was going to serve her lunch.

My feelings were hurt. I couldn't understand why my mom was being segregated from her friends and forced to eat in an area that smelled like a septic tank. I feel like this is some sort of retaliation because I'm voicing my concerns to the Ombudsman with the care my mom and her friends are receiving.

Mom went to the farm and enjoyed herself. She walked around pushing the cart and picking out fruit and vegetables like days gone by when she was feeding her family. My heart was full of joy for her, another good day, another day where she's still out in the world; one more day where she feels that she has some control over her life.

Mom's friends were happy to see us return, especially one patient who jumped out of her seat to chase me. She needed to talk to me. Twice she did this and finally she said, "Please, come here, I need to talk to you!"

Excited while she tried to find her words, she obviously overheard conversations which appeared to involve my mom and me. She pointed to the room that smelled like urine and told me "The maintenance man, he came." She struggled more to find the right words, whatever she had to say to me was extremely important to her."

"It's OK. Relax. Everything is going to be alright. You are safe." I offered in hope to ease her mind. Something that she had overheard completely set her off. She was not going to stop until she voiced her concern to me.

Next thing I heard her say to me is, "They don't want you here. They don't want you. YOU!" She said to me in disbelief. "You my dear. Don't stop, please. It's good." On that last word, she reached her hands out and embraced me.

Touche!

Dear Nursing Home Care Workers Everywhere,

2011-09-05T08:13:00.002-04:00

Ma and her cat, Savita
June 2011

I am tired. I am sick hearing you complain, day in and day out. Whining, bitching, spewing your crap all over the innocent residents of the home where you are working is wrong. Through your venting, you are bathing demented residents in your vile energy. No wonder they are all agitated and upset most of the time when you are working in their home.

How would you feel if someone like you came into YOUR home and bitched nonstop about things out of your control? Would you tolerate people filling your house with negativity? Why do you do it in my mom's home?

Why do you walk down the halls after all the residents are in bed and talk as though it's 2 in the afternoon? Really? No wonder my mom isn't sleeping very well when you are on duty.

Your speaking in your foreign language, hollering down the hall for one of your friends, laughing and joking, is extremely disrespectful; it wakes my mom, it scares her and makes her hallucinate about something that she can not verbalize. Mom lost her ability to communicate, she can't tell you to shut the hell up anymore. So, I am telling you... 'SHUT THE HELL UP!'

Please help me to understand why my mom will struggle in her seat, doing the pee-pee or poo-poo dance in her seat, while you ignore her because "she's not your responsibility" or "it's not your job." Where's the team work? Where's your respect for each other? No wonder your work environment is like a living hell on Earth, you are part of the problem.

Look in the mirror, please, see your face and be honest with yourself. What are you doing to contribute to your own misery? Why aren't you taking responsibility for your own actions? Why are you trying to convince yourself that it isn't you, it's THEM? Why are you listening to the bullshit of others? Their negativity is contagious, it's easy to get sucked in. I have a question for you, "how is this benefiting you?"

Does complaining make you feel better? Maybe while you're talking but when you are on the listening end, it makes you feel worse. Negative talk spreads like a cancer. Misery loves company; a phrase that holds volumes of truth.

Why are you wasting a crap load of valuable time bitching. Time that you could use more effectively helping the residents that you were hired to assist with their daily living.

Why do you disrespect yourself and fall into the complaining pit?

Take control. Refuse to listen to the complaining. Hold up your hand and say, "Thanks but no thanks, if you don't have something positive to say, shut the hell up." Ask the complaining people what they can do to change the situation? If they can't do anything, they have no reason to bitch. If you are going to bitch, have a solution and take action to make a change.

Change begins with each of us. We all have free will, no one can make us do anything, not even listen to their complaints. It's not hard to change, you just have to make the decision and do it. First, chose to stop listening to the gossiper, they really have nothing to say. I doubt their words are based on facts.

So... how do you change? Begin by changing what you say, it's not hard.

Start everyday expecting greatness. Jump out of bed and say out loud with enthusiasm, "TODAY WILL BE A GREAT DAY!" Expect a great day and it will find you.

Please stop and think. Use your mind, the power to change is within you. Lots of moms, dads, aunts, uncles, cousins and friends depend on you every day, please don't let them down because you are choosing to walk with a rain cloud over your head.

Thank you in advance.

A concerned Care Giver.

Create the Change... It All Begins With You!

2011-09-01T07:43:00.000-04:00

Throughout my professional career, the TEAM APPROACH has always been front and center to any discussion about increasing productivity and morale without more resources being provided by "Big Pappa Corporation."

The bottom line being most important to any for-profit organization; money is what makes a businesses world go round. A business is not a person, but for some sick reason elected officials changed the game by giving an unfair advantage to non-carbon entities.

For what reason?

Money and power.

Compassion is non-existent in the business world today. Instead, it's exchanged with fear and people are forced to work longer hours with little respect for their human dignity. People in the work force, the lucky ones with jobs, are mistreated and beaten down for one thing, profitability. No wonder nursing homes all seem to have the SAME problem, regardless how much one pays to live under their roof.

How do we get back to basics of caring, where's the compassion?

People are capable of having compassion, it's what makes us human. It's born in our hearts and I believe it's what drives people to become nurses and aides in nursing facilities. We all need compassionate nurses and aides, without these unsung heroes, life would be unbearable for those of us who find ourselves in a long term care facility.

Unfortunately, mixing profit and basic human needs seems to be perverted; each is on the opposite spectrum of life. Profiting on the backs of the most dependent and helpless is sick and goes against the grain of caring individuals who want to make a difference.

How can a for profit business expect employees to do more with less if they are not given the tools to get the job done?

No wonder nursing homes are such sad places to visit. The energy in healthcare facilities is heavy with illness, add to this the sad energy of staff caused by intense demands; dangerous environments spawn.

How can we allow this to happen?

How can we change it? One person at a time. Begin with yourself and re-remember why you became a healthcare professional in the first place. Empower yourself, open your eyes and listen with your heart.

It may sound like a fairy tale, an ideal that is unattainable, but it's not. It's possible to change, people have the ability to make change. Change begins with you and you and you.

Teams. Working as a team, using our collective minds to solve problems, is smart. It's cost effective and when done right, happy work environments manifest even when the world seems to be falling apart at the seams outside. The team approach allows all of us to do more with less. The old cliche, "no man is an island" holds volumes of truth.

Respect eachother. Roll up your sleeves and work together even if it’s not your job. Be patient. Check your baggage at the door and find the joy in your work; there’s always a silver lining even in the most undesirable job.

Caring for seniors who have lost control and are incontinent is a “crappy” job that literally stinks. It’s not glamorous but it’s something that caring folks do every minute of every day in nursing homes around the globe. The people that are helped are helpless, unable to do simple daily living activities like wipe their own asses.

Compassionate care. I’ve witnessed it. It’s possible. Team work. Working together with egos set aside creates peace among all residents. The best way to know that your team is working like a well oiled machine is to listen for the silence.

Raise the bar on yourself. Challenge yourself to be the best nurse or aide that you can be. Feel compassion. Feel good about yourself knowing that you made a difference in someone’s life. After all, isn't this WHY you chose this career path in the first place?

Smile, laugh and give warm hugs; you will be rewarded with a full heart. Smiles and laughter are contagious, it’s not difficult, it requires one element… you. It all begins with you.

How will you approach your day at your care facility? It’s up to you to create the change that you wish to become. Ghandi was right… change begins at the center of your heart. We all hold the power to have a good day; chose to be positive and make a difference in every life that you encounter.

I am challenging you, create the change... it all begins with you!

It Made A Difference

2011-08-22T07:28:00.000-04:00

Yesterday, my sister visited our mom; it made a difference in Ma's happiness.

Arriving at 6:30 PM to help get mom ready for bed, walk with her and give her a little bit of a homeopathic remedy that helps her sleep, I noticed a different mom.

She was calm.

She ate her dinner.

Her cognition was clear and she was able to talk to me.

I brought a new treat stash for my mom and her friends that brought a big smile to my friend Ruthie's face. Mom enjoyed the zucchini fritters that I had made special for her. "Oh, can I have one?" She asked as I opened the container to show her the contents.

Bob was alert too. He didn't want any treats, he ate his dinner and was talking up a storm. Mom and Bob were on the move, ready to get somewhere. My left hand held Bob's hand and my right hand held my mom's hand as we walked down the hall of the nursing home.

Bob was talking on and on, not making much sense except for every so often I'd understand a name so I'd ask a generic question. Generic questions are how I converse with Bob and my mom; they work to keep them calm.

Mom had a good day yesterday.

My resident friends told me that my sister visited. Bob commented how we look alike. Ruthie told me that my sister's voice fooled her because when she heard it, she started to look for me. Mom, she was at peace, she saw one of her children that wasn't me.

Thank you for visiting, it made a difference.

Do You Need The Toilet?

2011-08-18T07:09:00.000-04:00

Anna is one of my friends at the home; she doesn't speak English. Greek is her native tongue; she seems to speak louder and slower hoping that I'll understand what she's saying. How many times have I done the same thing throughout my life, even though I know it doesn't elicit understanding.

Tuesday afternoon when I was visiting my mom, Anna stopped me in the hall. Looking up at me with tired eyes, she grabbed my hand and began to speak in Greek to me. She was anxious as she tried like hell to get me to understand her. I didn't.

Suddenly, it dawned on me.

Holding Anna's hand I said to her, "Ah, I bet my Italian grandmother had the same communication problem. It must have been so frustrating and scary for her."

My mom's mom never spoke English, just like Anna.

I want to talk to Anna. I want to have a conversation with her because she can... only her voice is Greek.

I thought, "How can I talk to her? There's got to be an answer."

Of course! My iPad. If I could find a translation app it could possibly open up Anna's world of jumbled sounds. We'd be able to converse. The Tower of Babble would be torn down between us.

Yesterday, I got an app working on my iPad. I couldn't wait to get to the home to see Anna and try to talk to her. Mom was in a good place after her nap, so I had her sit with Anna and me as I tried to make the idea work.

Reminisce of days gone by when we used to use dial up to connect to the internet, the connection was turtle slow. It made it difficult to keep Anna and Mom's attention while my iPad seemed to spin through the translator.

I followed Anna around with my iPad, determined to speak to her. Mom and I found her and she looked like she needed the toilet. Of course she didn't know what I was asking her no matter how loud or slow I spoke in English.

"Ah, let me see if the translator will work." I said to my mom who had no idea what I was trying to accomplish, she was happy to be with me.

I typed on my iPad, "Do you need the toilet?" and pressed the button. It worked. It spoke the phrase in Greek to Anna.

She looked up and busted out laughing as she put her face in her hands. She laughed hard, finding the humor in the first phrase I got my device to speak. Anna said, "Yes." She laughed more.

I ran to get the aide to help her. It worked. Unfortunately, she already went to the toilet by the time the aide got to her room.

Why doesn't the home use today's technology to communicate with their residents? It's not difficult, it's not expensive. Imagine how much happier folks will be if they can communicate and answer the important questions like, "Do you need the toilet?"

Hey, What Time Is The Train Coming?

2011-08-17T07:55:00.001-04:00

Every day visiting the home is a new adventure into the unknown; bravely I open the door to the locked dementia unit.

Tuesday, mom was sleepy so I tucked her in bed for a nap. No sense having her sleep in a wheelchair; it didn't look very comfortable for her.

I sat with Bob, the man who worked with my dad 33+ years ago when dad drove airport limousines for a living. Bob was the dispatcher; he liked my dad a lot, they were friends. I remember Bob when I was a kid and I'd pick dad up at the bus station after work. I would wait for Dad to arrive sometimes and Bob would talk to me.

How wild is it that he is in the same facility as my mom?

During my visit with Bob, he spoke about a winning ticket and that he won $42 dollars playing a number. He was excited and talking about his hallucinations; oblivious to everything going on around him.

Sitting across from Bob was a woman resident who was the first person I have seen pleasure herself in a public place. It was shocking the first time I saw her going at it, looking at me as she said, "It feels so good honey."

Yikes! I made a mental note to never smile at her or make eye contact. It was working out well for me until yesterday, I smiled at her while she sat across the table from us. Immediately she began to rub private part as she flicked her pointed tongue at me as though she was ready to give oral sex. It was like the start of a senior porn horror movie, what was next?

"It's comingggggggggggggg honeyyyyy!" She screamed in delight as her pleasure mission finished successfully.

I glanced at Bob. He had no idea that this woman was masturbating in front of him, he was busy telling me about his trip to New York the night before and how he won $42 bucks on a number. He was fixated on his winning hallucination.

Ignoring the woman across from us, doing my best not to make eye contact, she reached her hand toward Bob and said, "I LOVE HIM! I WANT HIM! Come on honeyyyyyyyy. It feels so good." Rocking and bouncing in her chair, she continued to rub herself, anxious for another successful launch.

Bob was oblivious to the amorous advances; his only concern was, "Hey, what time is the train coming?"

We Had A Good Time

2011-08-16T09:37:00.000-04:00

Bob. There are a couple of Bob's on the unit where my mom is currently living. They both answer when I walk in the home and say, "HI Bob!"

"Why, hello there!" I am greeted by Bob that seems to have been a resident for quite some time now. I don't know much about Bob except that he is a pleasant old man who gets few visitors.

Sunday, he had a phone call. I saw him sitting outside the nurses station as he held the phone away from his ear.

"Bob. Are you done talking?" I asked as my mom and I walked toward him.

He handed me the phone. I said, "Hello?"

A elderly woman's voice was on the other end, "Hello. I was telling Bob a story."

"Well, he's not listening to your story, he's holding the phone far away from his ear. Let's try again." I offered.

"Bob. Phone's for you." I said as I handed him the phone and put it to his ear.

"Hello? Why, Hello!" He answered the phone like it was a new call. Bob made me smile with this exchange.

There were no activities this past weekend for the residents up in my mom's dementia unit. It made for a pretty boring couple of days for all of them. Ruthie sat in the activities area on Saturday afternoon... I asked, "Ruthie what are you doing?"

"I'm waiting." She answered.

"For what? Activities?" I replied.

"Yes, activities." She said as she nodded her head yes.

"No activities today Ruthie. Let's go make our own and have a walking parade." I said to her with enthusiasm in my voice.

"Walking Parade!" She returned.

Saturday, we had a walking parade. I hold my mom's hand in one hand, the hand of another resident in the other and we walk. Other residents who can propel themselves, follow behind, all of them moving forward in a long train. The scene is akin to the childhood story, "The Pied Piper"; it makes me smile.

Sunday, another boring day for the residents. No activities. Instead, the folks were all lined up in the hall; sitting facing forward against the wall as though they were passengers on a train. No wonder Bob and my mom believe that they are on a train or waiting for the train.

I baked cookies and blueberry muffins on Sunday morning to share with my little friends.

I arrived and mom was doing pretty well. She was struggling with her wheelchair, trying to move forward but having a little difficulty; she was stuck.

"Hi Ma!" I exclaimed when I saw her. "Want to go for a cup of coffee?"

"Where are you?!" She answered back, not seeing me standing in front of her because she was looking down at the floor; legs and arms flailing to help her move.

Mom and I went out for coffee, bringing a few extra cups back with us to share with a couple of her friends.

Ruthie, Anna, mom and me sat around a little bed tray, drank coffee, ate muffins and cookies. We had a nice visit. We laughed and smiled while we drank coffee and enjoyed one of my homemade treats.

Like Ruthie always says to me when she sees me, "We had a good time."

A Gift From The Heart

2011-08-15T07:18:00.000-04:00

Ruthie. She's the resident who lives on the same unit as my mom. She never has visitors, ever. Her daughter sends her a card every day; shaky handwriting indicating that her daughter is unable to make the trips to the home to see her mom.

Ruthie was the first resident that I got to know. She would wheel herself over to me and my mom every time I visited; she is now one of my friends. I visit Ruthie every day, we have our alone time and she loves it.

Ruthie talks. I never knew that she spoke until one day, with a big smile on her face, pointing at me, she said, "Ice cream!" I do my best to keep in the freezer, fudge ice cream bars made from coconut milk and agave nectar for my mom and her friends

One day last week, after I had tucked my mom in bed, I visited with Ruthie in the dining room.

"We had a good time." She said to me as she smiled and laughed, reaching out to hold my hand. Earlier in the day, I danced with Ruthie. We had fun. It is awesome to see her laugh and enjoy herself even if she is confined to her wheelchair.

Friday, when the State Surveyor's were in the home doing a review of the nursing facility, I was sitting next to Ruthie and my mom. Ruthie pointed to the State worker and said to me, "Now they are all paying attention." She began to laugh, finding it very funny that the staff was tripping over themselves to help the residents. Help that we never witness during a regular day when no one is watching except resident's family members who visit frequently.

I love Ruthie. I love visiting with her, she always says something to make me laugh.

Another night last week when I visited with Ruthie after tucking my mom into bed, she said to me; "People say I'm crazy." She laughed and twirled her index finger in circles around the temple of her right eye.

"Who says they are not the crazy ones? Aren't we all crazy to someone... who's right?" I replied.

Ruthie busted out laughing. She is not crazy. She just has difficulty speaking and has learned how to make the words she says count.

I visited with Ruthie on Thursday night and before I left she said to me, "I used to be sad all the time... then I met you."

A true gift from the heart, words that filled my being with love. I hugged my little friend. I thanked her for touching my heart and making me laugh. I promised to bring her more cookies and ice cream.

Time to get those cookies in the oven... I need to give Ruthie a gift from the heart.

I Pray For My Family

2011-08-14T07:29:00.000-04:00

Everyday, I see an 87 year old Greek man sitting outside his wife's bedroom at the facility; she appears to be at the end of her days. She lays in bed, lifeless.

Little prayer book in his hands, the Greek Madonna portrait on the cover; he sits and prays.

He is a sweet old man. Every day he arrives around the same time by "The Ride"; a service provided to seniors by the Massachusetts Transportation Authority. Every day, he sits outside of his wife's bedroom and he prays.

He greets my mom and me as we walk by during our exercise time. In broken English, he tells my mom that she has a nice family. Mom smiles proudly with a shy spoken "Thank you."

I've observed this old man for the last 2 months. He seems to forage for crumbs in the kitchen area. Crackers are always available; he puts them on a bed tray, covered with a napkin as he uses the bed tray as a walker. I never see him eating real food.

Yesterday, I saw him and I asked him if I could share some of my food with him. He said, "YES!" as his eyes filled with tears. "God bless you." He said to me as he kissed my hand.

Today, I brought him a bowl of my Gluten Free American Chop Suey; loaded with ground turkey and fresh vegetables and herbs from the garden. Mom and I walked down the hall to where he was sitting; his eyes filled with tears and once more he blessed me and kissed my hands. "Thank you. God will bless you. Thank you."

"How many children?" He asked me as he pointed to my mom.

"Five." I replied.

"You the only one who come?" He asked in broken English as tears began to stream down his cheek.

I couldn't answer. I didn't want to upset my mom because if I spoke the answer, I would cry. I said my so long for now to my little friend and I took my mom out to the supermarket.

Mom and I got back from our outing and the little Greek man was walking down the hall toward my mom's room. He was pushing the bed tray with the cleaned food container on top.

"Did you taste it? Did you like my food?" I asked.

"Tank you... tank you. Did I taste it? I ate all!" He said to me in broken English. "I give you someting." He handed me my cleaned container with 3 Greek cookies that he had made. I think the cookies were his lunch for the day.

I tried one immediately. "Mmmmmmmmm... delicious. I love Greek cookies; thank you!" I gave my new friend a big hug and a kiss on his cheek.

"God bless you. I pray for you and your mother. I pray for all people here, but I pray for my family last." He continued with a tear soaked face. He took my hand and kissed it while he repeated, "God will bless you."

Forgotten by his children, he is left alone to face the impending demise of his beloved wife. Watching. Waiting. He sits and he prays.

How can we as a society allow this to happen?

A Great Nurse

2011-08-13T07:50:00.000-04:00

It's been difficult having my mom in a nursing home. I am ready to have others take over the heavy lifting involved with caring for her. I have been ready since May 27th when she was admitted to the facility. However, her care has been less than stellar; Mom's been abused.

Abuse in nursing homes is real. The atmosphere is prison-like; where seniors who have done no crime except get old are held. It's sickening and frightening.

How can we as a society abandon senior citizens and dump them in nursing homes? Where's the dignity? Where's the respect?

Based on my observations, not all nurses are alike; the special ones have nursing in their heart and soul.

I'm grateful that Mom's got a great nurse, Stephen. He was on a well deserved two week vacation. Boy, was he missed.

The home is always brighter when Stephen is on duty. The home is peaceful. People are quiet. No one screams out in distress; folks in the home are naturally calm. Stephen is compassionate.

Yesterday, Stephen returned and I witnessed something that made my eyes well up with tears; happy tears.

Stephen walked around to EVERY resident and said hello. He spoke with them and greeted all of them individually with a caring touch. "How are you?! How have you been?" He was treating everyone with dignity and respect. In my opinion, this is a sign of a GREAT NURSE.

Last night, because of Stephen, I took the night off. I didn't feel the need to rush to the home to check on my mom and the other residents that I've befriended. I was confident that they were all safe.

At last, a little peace... One of Mom's human angels was watching over her; first time in two weeks I have been able to relax at night and laugh with my husband. Mom... she slept through the night!

Thank you Stephen... in my opinion you are a great nurse and I'm relieved when you are caring for my mom and her friends. I wish all nurses were like you, Norma and Mini.

Sweet Moments

2011-08-08T07:26:00.000-04:00

Mom and her Great Niece during a visit last week

Even though my mom is in a facility, she still has good days. It's not easy to do, but with a bit of effort on my part, she is happy most days. Visits matter. Walking with her every day matters more than I had realized initially.

Last Friday was my birthday. Happy Birthday to me.

I made a batch of gluten free chocolate cupcakes with ingredients that I had in my cupboard; I shared them with the residents at the home.

My mom loved them; so did Harvey. "I want a cupcake!" He would holler from wherever he sat.

I didn't visit her Friday night; too many cocktails at my birthday lunch.

The nurse on duty gave folks cupcakes Friday after dinner. Mom, she sat with the cupcake in front of her as she sang "Happy Birthday to you...." She was singing to me and I missed it!

A sweet moment; a priceless gift from my mom that came from her heart.

Creating Happier Days Through Time and Love

2011-08-03T07:06:00.000-04:00

Mom walking unassisted in Whole Foods

My mom's doing better since I've been visiting her twice a day; getting her up and out of the wheelchair to walk seems to help a lot. She is happy most days.

Mom's ankles had been swollen something horrible from sitting too long in a chair and not being allowed to exercise. Moving. Walking. In my opinion, it's the best remedy for edema. I've been vigilant to walk with her in order to help give her the best end of life possible. I am exhausted.

I worry about my mom more while she's in the nursing home than when she was home with me. I am losing sleep again, becoming an insomniac as I lay awake at night wondering if mom is being treated with dignity and not being abused. I worry about all of my little friends in the home.

I am nearly ready to bring my mom back home with me until the bed opens in a home where her Primary Care Physician would be her doctor. I am not happy. I should NOT feel that I need to be at the nursing home every day, twice a day. My confidence has been shot because of incidents that I've witnessed.

What have I done?! How could I have put my mom in danger?

People are dumped in nursing homes; no one really seems to care. Left to be looked after by people who appear robotic with little time to do anything extra like walk with my mom.

Residents with few or no visitors, seem depressed as they cry out the names of those that had abandoned them when they were needed the most. The screaming is ignored as nurses and aides have become desensitized to the crying residents.

It break my heart to witness the sadness. Sadness that could be avoided if their families took even an hour out of their lives once a week to stop in and visit with a cup of coffee or a big hug. How busy can people be that they can't give a little time every week to someone who loves them and misses seeing their face? I need to understand so that I can answer questions when asked. Today, I don't know what to say.

Monday, my mom was doing terrific; she slept through the previous night. Sleep always puts her in a good place.

She walked in to Dr. Barton's office for acupuncture; a session she has every week to help her have better days. Mom walked a lot yesterday. She even pushed the cart at Whole Foods while we shopped for a few items. It was like the sweet days before she was admitted to the nursing home over 2 months ago.

Eyes welling with tears of joy, I pulled out my camera and captured the memory. Mom's not dead. She's doing better than she had been. Visits, hugs, smiles, laughter and time have made a difference to create happier days. It's not hard to put a smile on a residents face, all you need to do is give the gift of time.

Mom shopping, pushing the cart and walking... Acupuncture works!

Why Visiting Nursing Homes Is Crucial

2011-07-30T08:39:00.000-04:00

One thing that I noticed while visiting my mom at the nursing home every day; few people have visitors. It's sad. These folks have been abandoned, put into a holding pen while they wait for their turn with the Grim Reaper.

I noticed something else while visiting; the people in the nursing home are far from dead. I've gotten to know the residents. Those who can ambulate on their own, follow me; I wonder if it's because I always come with ice cream or cookies. Treats put a smile on their faces and gives them something to look forward to every day.

I listen.

Rarely do I understand what the resident is chattering about but I make believe I know. I give general answers. I use expression. A smile or laughter is the sign that the memory challenged individual feels satisfied. Someone listened to them, someone answered their cry; it was easy with the only cost being time.

I love all the residents where my mom is living. I have my favorites; Bob, Ruth, Jean, Mary and Caroline are the tops. Bob worked with my dad, they were work friends. Ruth reminds me of a little girl; she listens to everything and laughs at the right times. Jean is a joy, she loves to jump up and dance. Mary, she is sweet, always telling me not to worry about all of them so much because it will end up killing me. She worries that I'll die and not be able to visit. Carol is my mom's roommate, she doesn't talk much. I give her a little Reiki every day to help ease her pain. She rewards me with a smile or a big "God Bless You!"

Nursing homes are understaffed. I'm learning the hard way what it means to have sufficient care hours for each patient. Care hours is what to look for when searching for a nursing home for someone that you love. I didn't find a home with enough care hours; my biggest regret.

I visit the home twice a day in the morning and in the evening. I walk my mom. I listen to her hallucinations and give her answers. Sometimes on a good day I take her out for a ride to Whole Foods. I wheel her around in her chair, she holds a little basket in her lap for the items that she selects. Shopping makes her happy; greetings by the store employees makes her smile.

Once folks go to a home, it's not the end; they need their families and friends more than ever. Someone needs to watch out for them from the outside. Someone needs to make sure that the individual isn't a victim of abuse. It takes vigilance and it's the main reason why visiting nursing homes is crucial to the health and safety of the people we love.

Have you visited a nursing home lately or are you full of excuses why you can't?

Jay's First Day At Day Care

2011-07-15T17:53:00.002-04:00

Jay and the Day Program nurse
Jay started to enjoy herself with in 5 minutes of entering the building

I have an awesome Aunt... her name is Jay. Jay has always been a part of our lives. She never married; she spoiled all of her nieces and nephews. Jay was a Care Giver to my Bacci; she was the one who taught me the importance of caring for seniors, especially my mother.

If you talked to Jay before today she would often say, "I'm a lost soul." She was displaced from her home because of black mold. My brother Marty and my favorite Sister-in-law Patricia moved her in to their house to live.

It's been tough for Jay this last year. She's been away from her neighborhood, her church and all things familiar.

Life happens.

Jay's friends are passing and she's found herself with no friends. She was a social butterfly, trapped in a net; until today!

I found an awesome Day Program for Jay to attend not far from her home. Nurses, a staff of people to wait on her and a room full of happy seniors was exactly what Jay needed. Our challenge was convincing her that this was the place for her, not the senior center in town.

On the drive, Jay thought I was taking her to a nursing home. She was peeved off at me. I said, "Jay, give it a chance... I know you are going to LOVE this place that I found for you."

She wouldn't believe me; instead she coped an attitude. One excuse after another she offered; all reasons for her not needing to go.

"Oh, Marty will miss me." Jay said.

"No he won't because you will be home for dinner." I replied.

"Well, the dogs. I can't leave the dogs home all day alone. The dogs will miss me." Jay softly interjected.

"Aw, the dogs will be fine; dogs can't tell time... when you get home they'll be happy to see you... " I shot back an answer, anything to debunk her fear.

Convinced that Jay would love the place I said, "Ok, so when you love the place will you say, Susan, you were right!" I asked.

Clutching her purse she seemed nervous as she agreed to my request.

The unexpected road detour didn't help, all of a sudden the road that the navigation system told me to take had ended. Now what?! Is all I could think to myself.

Turning left and right, this way and that way; I was lost and the trip to the Day Program was taking 3 times longer than expected. Jay was becoming more anxious because it seemed so far away.

"Patricia is wonderful. She's like my sister." Jay began an attempt to change the subject to calm her thoughts.

I agreed. I love Patricia.

Finally, we arrived.

We were greeted by the owner with a warm welcome. Immediately, she put Jay at ease. She showed us around. Jay looked at me with wide eyes and a big smile as she said, "I thought you were taking me to a nursing home!"

Jay met a new friend named Betty a firecracker of a woman about the same age. Immediately they began to chat.

Jay's new friend... Betty

"I'm so light headed." Jay said to her new friend.

"I get that way too." She said. "But, what I do is take a little salt in the palm of my hand and lick it and the lightheaded feeling goes away." Betty added.

Before long, Jay was asking for salt to lick out of her hand; she instantly liked her new friend. Jay loves remedies that are simple.

Music to my ears.

32 Years

2011-07-09T09:12:00.000-04:00

1976
Ma and Dad
25th Wedding Anniversary Party

Today is the 32nd anniversary of my dad's passing; he was 49.

I was 18 going on 19 when one of my childhood nightmares manifested. Dad's illness came on suddenly. The cancer in his body took over and he was dead within 7 months.

Pancreatic cancer was my dad's killer.

Dad was my biggest fan. He encouraged my creativity and listened to my dreams. I was fortunate to have him as my father; he taught me lessons that have carried me through life.

Thanks Dad!

Today, dad is in my thoughts as I wonder what life would have been like for my family and me if he had lived to be an old man.

32 years... it seems like yesterday.

If the spirit of those we love can hear us, I have a message for my dad...

I love you dad! Please help me with Ma.

Managing Hallucinations

2011-07-07T08:49:00.000-04:00

My mom's in a nursing home. She's not sleeping at night. She's hallucinating. She's disagreeable. She's getting lots of skin tears.

Unfortunately, her illness is misunderstood. I am on a mission to help everyone who cares for her to understand how to manage my mom's hallucinations without drugs.

What I've observed is those who listen to her, have the most success with keeping her calm and with fewer hallucinations. Discrediting her and her hallucinations does nothing but agitate her more.

Acknowledging her hallucinations and entering her world, help her to release the thought. Once she's got an answer, she is easily redirected. If she is not given an opportunity to resolve the hallucination or thought, she will obsess on it and become more agitated. Agitation leads to behavior issues and night disturbances.

Following are 4 actions that I have taken with good results.

Listen
Agree
Control
Creative thinking

Listen

Ask simple questions, one at a time. Wait. Let the person talk. Sometimes with my mom she gets so excited that I can only hear every couple of words. I listen for clues.

Agree

I agree with my mom. Even when her hallucinations are off the wall and scaring her, I do an action that shows her that she’s “not crazy.” Agreeing with her seems to allow her to perceive that she has control of her mind when she doesn't.

Control.

Ask the individual, “What do we need to do? How do you think we should solve this problem?”

Taking the cues from the person with the hallucination allows the care giver to make up a story that is believable to the person, giving the patient a sense of control and helps calm them down so they can be redirected.

No way can an LBD patient be redirected if their hallucination isn’t addressed first.

Often, my mom will want to get up and look out the window at a hallucination. Allowing her to lead, answering her questions (even if it's a wild story) is the best way to help her remain calm without the use of any drugs.

Creative Thinking

After listening to the person ramble on about their hallucinations, answer their question. Be creative. Use your imagination and always use the imagery in your stories and actions that the patient described initially. Logic is out the window. Personal experience has taught me that fantasy and far fetched concepts work best.

Use props like a phone not plugged in to call Dream Master.

The original person who used Dream Master concept was brilliant. I found her solution and used it with great success. The woman’s husband was hallucinating one night and got out of bed. His wife said to him, "Why are you up?" The husband said, "I can't sleep in that bed, there's a man in that bed and I'm not gay!"

The wife went into the room and picked up the phone and pretend called "The Dream Master." How I remember the story...

Wife: "Hi Dream Master? (brief pause like she's listening.) Yes, I'm calling to cancel all of Henry's nightmares. (pause.) (excited voice) "OH, YOU CAN! Well that is great. Super. Thank you Dream Master, I'll tell him."

The husband went back to sleep, the hallucination of the man in bed went away.

I used the Dream Master concept on my mom when she began to wake up at 12 and again at 2am. I told her that I called the Dream Master and cancelled all of her nightmares from now on, only happy dreams. My mom, upon hearing the news said, "Oh Good... now I can get some sleep."

Dream Master is the one I call to solve all of her hallucination troubles… it works.

Do You Have the Courage?

2011-07-03T08:25:00.000-04:00

Acupuncture seemed to cure my mom's insomnia for 2 nights.

Last night, mom was up all night.

I expected it.

Mom was wild yesterday. Eyes closed, hallucinations as real as life and words strung together that made no sense at all. Lifting her legs, attempting to climb out of any chair that she's belted into; mom reminded me of a very big two year old.

Several of the folks were agitated yesterday. I wonder if emotions are contagious between residents?

"Help me. Please help me." A frail old lady cried to me; reminisce of a haunted house on Halloween. The resident is scary looking and her voice is just as frightening.

"Take me with you. I love you. I love you." The old woman cried as she took my hand and kissed it.

I had to take my mom out for awhile, maybe a ride in the car would help calm her down.

It didn't.

It seemed to make her more agitated.

I took her to Mann Orchard for a cup of coffee; often I'd take her there for a coffee while I shopped for fresh fruit and vegetables. Yesterday, we just had a cup of coffee because I couldn't leave my mom unattended.

The visit to the farm triggered a memory of my sister.

"Where's Donna? I haven't seen her in awhile." Mom asked.

How do I answer?

Mom became more agitated as she said, "Looks like it's just you and me."

Her day began to take a nose dive. She felt my anxiety that I feel when she asks about her other children. Mom can read my emotions, she feels them; I was not helping her have a good day.

I walked away. I cried on the drive home and selfishly wished for my mom's end to come soon.

Visiting mom can range from difficult to extremely rewarding. It takes courage to visit a nursing home; to fearlessly walk into the unknown world of the demented.

I have one question...

Do you have the courage?

On the Move

2011-07-02T09:05:00.000-04:00

Acupuncture worked very well for my mom.

She was a total basket case before her session; hallucinations, unable to stand and words that made no sense.

Mom was not able to get on the table in the doctor's office. She wouldn't lay down. Her treatment was done while she sat in her wheelchair. I held her hands to help keep her from removing the pins.

Mom was calmer. On the drive back to the home, she was tapping her feet and singing along to the music that filled the car.

Mom allowed me to wheel her back inside the nursing home. She lifted her feet, she remembered how!

Mom was able to walk. She walked up and down the hall with me.

She slept through the night. Alleluia!!!!

Yesterday, she was talking and walking. She was on the move. She slept through the night again.

Acupuncture seems to have reset her internal clock, thank God!

Acupuncture... the Insomnia Cure?

2011-07-01T07:03:00.000-04:00

Mom, Nikki and me visiting Ma the day after a sleepless night

Sleep has escaped my mom's grip for a few weeks. It was hard to see her flailing arms, wildly looking for something, propelling herself in her wheelchair; searching with her eyes closed.

"Where is it? Come on! Come here! Where's the little girl?" Mom has been frantic and confused during the days following her sleepless nights.

Walking is out of the question when she has not had rest. Mom's care givers and I find ourselves in a catch-22 situation; no walking leads to agitation and more sleepless nights. Nocturnal wakefulness causes her more confusion and her state of being is worse than the day before.

It's been a difficult week.

What can we do? A question that consumed my thoughts, unable to think of any thing else, I took a deep breath and cleared my mind.

ACUPUNCTURE! Of course... I set my mom up with an appointment to have acupuncture with Dr. Barton, our favorite Naturopath Doctor and Acupuncturist. He has helped my mom in the past to have better days, why couldn't he help her now?

Yesterday afternoon was mom's appointment with our Naturopath. She was super insane; one minute she was agitated, the next she was in a state of bliss. Getting her into the car was easy; getting her to walk into the doctor's office was nearly impossible. She started out walking well and then suddenly as we were walking up the ramp, she decided it was time to sit.

"No! Not here Ma! Please, stand. A few more steps and you can sit on the bench." I pleaded with her.

My words fell on deaf ears, she decided to sit. I bent my leg, supporting her fanny as I held her up. No one could see us because of where we were on the ramp. What was I going to do? Why didn't I take her wheelchair out of the trunk and use it? Why did I think she could walk 20 feet up a ramp?

Taking a deep breath, I put my arms under my mom's and I lifted her. I carried her up the ramp and into the office; we made it.

Mom couldn't get on the table as she had been able to do in the past. She couldn't lay down flat when I did get her on the table. Her treatment was done while she sat in her wheelchair.

Dr. Barton gave her a one time drink of a homeopathic remedy; something to calm her.

It worked!

On the drive back to the nursing home, mom was settled down. She tapped her foot to the music that played; her favorite Frank Sinatra crooned "I"ve got the world on a string... sitting on a rainbow..."

Pushing her wheelchair, she lifted her feet. She didn't try to put the breaks on, confused with what to do with her feet or where she needed to go. Mom was noticeably more calm.

I called her night nurse this morning; mom slept through the night. She was still sleeping at 6 AM this morning; mom should have a very good day today.

Acupuncture, is it an insomnia cure? If you ask me, YES!

It's Been Ten Years

2011-06-30T08:07:00.000-04:00

Ed's portrait
He wanted to be remembered

Ten Years ago today, my brother Ed died in a white water rafting accident.

Mom believes that he's still alive. The other day she overheard me telling an old neighbor who works at the home that Ed passed.

"No he isn't!" My mom answered from the other side of the room.

"Oh, that's right... he's here." I answered.

Ed is alive in my mom's mind and my heart. Every day Ed's name comes up in conversation between my mom and me.

"Where's Eddie? He was just here a minute ago." My mom asks when I visit her at the home.

"Oh, he's working with Dad." I find myself answering her.

I miss Ed.

I often wonder how Care Giving for my mom would have been different if Ed didn't die on June 30, 2001. Would Ed have helped me? I like to believe that he would have; Ed believed in family loyalty.

Wherever you are Ed... you will always be alive in my heart.

Don't Blink!

2011-06-29T06:57:00.000-04:00

"Hello Sue? Your mom is off the wall!" The voice on the other end of the phone exclaimed.

"I'll be there as soon as I can." I assured Mom's nurse.

My mom has another UTI. I believe it's because she isn't taking the same probiotic that she had been taking at home; 50 Billion Critical Care with Cystex (Proantinox) is what worked to keep her UTI insanity free.

Mom's not sleeping. She's awake all night and all day. It's like she's stuck in the on position. How long can she last like this without falling over from exhaustion?

She crapped her pants yesterday when I had arrived to see her. My plan was to take her out for a ride. With the poo in her pants, I needed to shift gears and go to Whole Foods without her in tow. No way could I handle her in the supermarket; I was looking for trouble if I took her out.

It's a "crap shoot" with my mom these days; don't blink or you'll miss a good day. I never know how she's going to be when I arrive at the home. One day she's running down the hall; next day she is shitting her pants.

Why?

I believe the underlying cause is she's not eating enough vegetables. Everything that the residents are served for food is white. Where are all the vegetables? Where's the soup with nutritious herbs, spices and vegetables? No wonder the folks are fidgety and anxious. Why don't medical facilities understand food as medicine? Why do the trained professionals not understand simple solutions to solve big health problems?

My new goal? To see if I can influence the nutritionist enough to get her to add more colorful vegetables to the menu.

In the meantime, I will bring my mom more home cooked soups and salad.

Race to Dance

2011-06-28T08:01:00.000-04:00

Mom, exercising her arms... she did it for about 5 minutes!

Mom gets physical therapy 3 times a week and I walk with her every day. I do the exercises with her that her physical therapist at the home showed to us; exercises that are strengthening her legs.

Yesterday, I went to her PT session and we were all amazed. My mom was nearly running down the hall with the walker. She was moving... moving fast.

"Was that Josephine?" A nurse came out of a room when she saw my mom zip by the doorway.

Mom's walking. She's moving. Soon, I look forward to seeing her dancing to her music that streams through the headphones that rest on her ears. Mom is now in a race to dance again; she wants to dance.

Wild Days and Nights with Lewy and Jo

2011-06-27T07:37:00.000-04:00

Mom's sleep cycles are reversed

Mom has been in the home a month and 2 days. She has good days and not so good days; sleep contributes to her good days.

Lately, she has not been sleeping at night. Insomnia has taken hold of her again, leaving her exhausted and in a state of total confusion. We think she may have another UTI, too.

Talking to the air, "Where's Eddie?"

"Come here, come on." She will say as she snaps her fingers, pointing to a corner of the room.

"The little boy. He's over there. See him. Tell him to come here." My mom demanded yesterday when I visited.

Wild with her eyes closed, talking and talking to someone that only she could see in her mind; vivid hallucinations became her reality.

Walking with her yesterday, it was difficult to get her to maneuver her walker. She forgot how to use it. Mom was over tired, she needs to sleep at night.

I am not keen on giving her drugs to knock her out at night; the drugs take her deeper into the between world. She becomes a vegetable; tongue sticking out, slumped in her chair, unable to speak, walk and feed herself. It's hard to see her like this; I insist on no drugs.

Mom's nurse, God love her, thought she'd walk my mom to the toilet yesterday when she saw her fidgeting in her chair. Mom thought the chair was the toilet. She began pulling her pants down as she walked and tried to sit on the chair to poo.

"Oh my God, Sue! How did you do it by yourself?" Georgia the nurse said to me as I walked in yesterday morning to visit my mom. It took two of them to get my mom on the REAL toilet.

I remembered the feeling of stress that I experienced every day over my mom and her poo. A sick pit in my stomach accompanied the flood of memories while my only reply was, "Thank God she's here."

My mom is walking. She is feeding herself. She has good days where she believes that she's WINNING and then she has days where she's looking for my dead brother Ed or trying to poo on a chair.

My Reward Has Manifested

2011-06-26T08:44:00.000-04:00

It took vigilance on my part to get my mom up out of the wheelchair and walking again. Initially, she didn't trust anyone to walk with her; she was scared.

Two weeks in a wheelchair began to weaken her legs; unable to hold up her weight on standing, she was becoming more agitated. Agitation is never a good thing when it comes to Lewy Bodies Dementia.

Two days ago, Mom's nurse told me that I created a monster. Mom walks a lot. She frequently tries to get up when the home wants her to sit because no one is available to walk with her. I walk with her as much as I can every day to help strengthen her legs and tire her out so that she sleeps at night.

I'll start working again soon; the job is waiting for me to start. I'm ready. I'm excited to join the world of paychecks again... it's been way too long.

Making money will allow me to pay someone to walk with my mom every day and set up an account with the home to pay for the hairdresser; every 2 weeks my mom is scheduled to get her hair done. Mom has always enjoyed having her hair look nice.

Friday, I took her out to lunch. She ate everything on her plate. I couldn't believe how much she ate! She ate unassisted without shaking as she picked up her coffee cup. It was an awesome outing. She was alert and talking full sentences to me. We had a conversation; a true gift.

Mom is settled. Her Care Giver during the day is a peach; Olga reminds us of Belkis. My mom likes her a lot. She likes all the people who help her.

I laugh when one of the residents who can't speak, squawks like a turkey when she sees me; my mom has begun to say with a snarky tone, "Awww, shud-up!"

It's great to see her doing so well in the home. My reward for all of my efforts has manifested. I am able to see her happy and smiling; big smiles every day.

I love visiting my mother. We are having fun, just like I promised her we would. I don't cry over the stress of caring for her; there's no need. She's in a great place; I am living again. My reward for caring for her has manifested, we made it through the storm.

I'm Winning!

2011-06-23T08:02:00.000-04:00

Mom, coloring like mad the other day... I'm winning!

Mom likes the people who take care of her. She is settled and into a routine.

Tuesday, I walked in to see her. The Activities woman smiled and said, "Oh, she's quite busy." I looked and saw my mom coloring fast and furious. It warmed my heart.

"Hi Ma, how are you?" I said as I came close to her.

"I'm winning!" She exclaimed as she continued to color orange all over a picture of an image of Strawberry Shortcake.

It's been warm these last few days. The home is very sunny, which is perfect for folks like my mom with dementia; downside? The rooms warm up fast.

Mom's not been sleeping in her room because it's too hot. She'll only sleep when she is sitting in the hall in a recliner where it's cool. Yesterday, I brought her an air conditioner for her bedroom window; it will be installed today. Tonight she should sleep well in her room.

I am holding off giving her Trazadone to help her sleep because the next day when I see her she is a zombie; no fun to visit.

Tuesday, she was hot in the afternoon and took off her shirt. The activity lady said, "Jo, there are men in here, you need to keep your shirt on."

My mom's reply? "I don't give a shit!"

Sitting in her bra, not caring one bit; just like a kid. The activities lady waited a few minutes and helped her put her shirt back on.

Ma is doing good... she likes where she lives and best of all, she's "WINNING!" just like Charlie Sheen.

First Outting

2011-06-21T10:05:00.000-04:00

It takes 3 weeks to form a habit or get comfortable with a change. Last Friday was 3 weeks that my mom had moved in to the nursing home.

On Friday, I made sure to set things up with the home so that I could safely take my mom out for a couple of hours. She hadn't been sleeping; maybe getting her out moving around will tire her out enough to sleep at night?

Portable wheelchair... check.
Permission from her doctor ... check.
Ma, able to walk and get in and out of the car... check.

Off we went to Whole Foods; where else would I have taken her? She loved food shopping.

She didn't want to use the wheel chair. We parked where we typically parked; she walked up the hill to the store as she pushed a cart.

The sun was hot and my mom decided she had enough. We had about 200 feet before we entered the cool store. I had to get her out of the sun! I put my arms under hers and pushed the cart as I held her up. We made it!

Walking in the store was not going to happen.

One of the workers from Whole Foods got my mom a chair. Here she is sitting in it and telling me that she wasn't walking anymore.

Another worker went out to the trunk of the car and got her wheelchair; we finished our shopping trip.

Walking with her, pushing the wheel chair was challenging; she dug her heels in the floor every time she saw a sample station of something. The cheese and olives have always been her favorite part of Whole Foods.

"Lift your feet Ma. Please... it's impossible to push you when you put the brakes on!" I pleaded with her.

"Well, get me a piece of that cheese!" She demanded.

I had my mom hold her stash of treats to keep at the home. Fresh peanut butter, concord jelly and her favorite ice cream. She was happy.

On the way back to the home, I stopped in Dunkin Donuts so that my mom could have a cup of coffee. She enjoyed it.

She was ready to go back to the home at the end of our 2 hours out. I was ready for her to go back too!

Sue's Pressure Cooker Radish Green Soup

2011-06-20T17:53:00.000-04:00

Today's harvest... radishes!

My radishes, grown from little seeds were ready to be picked. I had NO idea how to prepare these little red peppery roots; I searched the internet.

I found a recipe that used the radish greens. Hmmmmm.... interesting.

I started preparing the soup, I started to think about other things that I had in my garden that the recipe didn't call for... fresh herbs. I also couldn't bring myself to puree the soup mixture after it cooked. I've been watching people eat too many pureed meals since my mom moved to the nursing home.

Instead, I chose to eat it solid... it was fantastic.

Sue's Pressure Cooker Radish Green Soup

1 Tablespoons organic butter
2 Tablespoons Extra Virgin Olive Oil
4 cups radish greens - stems removed
2 medium potatoes - peeled and sliced
1 large Vidalia onion, coarsely chopped
2 radish sliced thin
2 sprigs of oregano (2-3" in length)
2 sprigs of Tarragon (2-3" in length)
2 sprigs of Thyme "
2 sprigs of Marjoram
4 cups organic chicken broth
salt and pepper to taste

Heat the butter and oil together in the pressure cooker. Add the onions, potatoes and herbs; no need to remove the leaves off the stems, you can pull the stems out after the soup is cooked.

Stir to mix the butter and oil mixture evenly over the onions, potato and herbs.

After about 2 minutes, add the radish greens and mix to coat with the butter and oil.

Add the chicken broth and stir.

Pressure cook on medium high until the pan hisses. Shut off the heat and cool pan under running cold water to depressurize the pan so that it opens.

Add a few slices of radish on the soup and salt and pepper to taste.

Insomnia Strikes!

2011-06-18T08:03:00.000-04:00

Yesterday wasn't a good day for my mom; she was up all night the night before. Insomnia is back, robbing her of good days.

Natural remedies and avoiding certain foods helped my mom to sleep through the night. At the nursing home, natural remedies are not allowed; food is not recognized as medicine.

My mom's nurses are awesome; they have open minds. They are new to the Team Jo Caregiving crew; learning the nuances to her needs is akin to learning how to play a musical instrument. Time and practice will improve everything, it always does.

Things that have caused my mom to have bouts of insomnia at home are:

1. Lack of exercise... I go every day and make sure she gets up and walks. Now we need to get her to trust the staff to walk with her. "I don't want to die!" She will exclaim at the suggestion to walk with someone other than family.

2. Dairy. If she has dairy products before bed, she will not sleep.

3. Anything white. Eating potatoes or white rice causes her sleep disturbances.

4. Room temperature. If it's too hot, she won't sleep. On warm nights, mom is awake... wide awake. I brought her a fan yesterday to keep the air moving in the room.

When my mom sleeps at night, her days are better. She will eat her food and be able to talk to her new friends. She likes the Sister; they fold my mom's scarf collection.

It's a process to get someone acclimated to a home without much anxiety. My mom is doing pretty well. Nothing is going to change how her mind reacts to change; it's part of her illness. She has a team of people to help her. Any visits she gets from anyone are bonuses and help her to have a good day.

Finally, I am able to do the fun stuff with my mom. Yesterday... I even got her to dance!

A Typical Visit With Ma

2011-06-17T07:21:00.000-04:00

Mom, listening to music while she holds Savita the Cat.

Mom's starting to enjoy herself at the home.

"Where have you been?" My mom said to me when I arrived at dinner time last night.

"I went to Nikki's graduation from pre-school. She was so cute." I answered.

Nikki, the little bumble bee holding her diploma from Pre-school.

"Well, OK." Mom replied.

The activities person told me that my mom was smiling and having fun. She was coloring and doing stuff with colored paper. I saw pictures; we have proof.

Fortunately, the activities person reminds my mom of me so when she sees her, she relaxes and thinks I'm there; thank God for the little miracles.

I believe that one of the residents is a former nun, the staff call her "Sister." Sister reads cookbooks all day long.... out loud and with feeling. I'm going to bring her my cookbook when it's completed.

Mom was squirming in her chair. "Ma, do you need the toilet?" A question that has become automatic when she fidgets.

"Yes." She said as she tried to move her wheelchair with locked wheels.

Sister... she answered too; "Oh dear, when you are done with her can you help me too? I got to go too."

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

I didn't know how to answer the sweet Sister. I'm sure my face said, "NO F-ing way!" The activities person looked at me and held back a laugh; what a predicament. I wheeled my mom off and the activities person got someone to help the Sister.

Mom feeding herself with Savita the Cat on her shoulder.

My mom is feeding herself again.

She's walking longer distances before needing to sit. She won't walk with any of the staff, not yet. It's my goal to get her to trust the folks who are there to help her when I can't be with her. I think we are making progress.

Mom sitting outside, drinking a cup of coffee after she took a little walk. Savita is watching her.

The more my mom walks, the happier she seems to be with where she's living. Sitting in the wheelchair all day long is not her idea of a good time. She likes to move; she needs to move.

Nursing Homes and the Transition

2011-06-16T08:10:00.001-04:00

Transitioning to a nursing home has not been as difficult as I had expected for my mom. Placing her in a home was one of my greatest fears in life; never did I want to disappoint my mother and put her in a facility.

My Mom's mother and sister lived their lives in different facilities, neither got many visitors, both were abandoned. My mom unintentionally abandoned her sister and mother in her attempt to survive in a world with her own family.

I always wondered about my Grandmother. I wanted to know her but she had dementia; the crazy gene. I will never forget the visit in 1968 to the mental institution. Like I've said before, this visit is what sealed the deal for my mom having me as her Caregiver when she became old like her mom.

Nursing homes do have a lousy stigma to this day, they can be sad places. What makes homes more pleasant are the visitors; lots of visitors give patients hope.

My mom's home is a sad place for some of the residents; no one visits them. Day in and day out they sit and wait, most have no idea what's going on but I have witnessed that these folks react to human interaction. A smile and add a warm, "HI! How are you today?" I get a smile.

I visit the home every day. It's the right thing to do for my mother to help her get acclimated and for the nurses and aides to learn how I had been managing my mom when she was home. The nurses thank me for my time; it's helping my mom's transition go more smoothly.

The home is a little understaffed so I make sure to arrive at meal time to help my mom eat. I get her started, feeding her one spoonful and before I know it she is taking the utensil from me and feeding herself. She's messy; thank God for cleaning people.

My mom had a mad rash on her fanny. She had diarrhea from the antibiotics to cure her UTI. The Probiotic that she was prescribed wasn't doing the trick so I have been giving her the 50 Billion, Critical Care probiotic. She is feeling better. No more runs. The rash is going away.

Sitting too long in the wheelchair and not walking contributed to her latest issue with the rash and a UTI. Mom wouldn't walk. She was scared; frightened that she would fall.

Every day I coached her. First, I got her to stand up; when she was too scared, she sat down. The next day, she took a few steps to the toilet. Followed by a day where she shocked everyone, walking with me down the hall.

"She can walk?!" The staff was pleasantly surprised.

"Just wait until she starts dancing." I added.

Yesterday I took her outside for a walk on the grounds of the facility. I played Frank Sinatra on my iPad and we walked.

"Oh, I need to sit." My mom exclaimed.

"OK. Just a few more steps, let's walk to that chair over there." I encouraged my mom.

She did it. She was so proud of herself. She sat and crossed her legs and drank her coffee. "Ah, the sun feels good."

Visiting every day is helping my mom to adjust. The staff are learning more quickly how to help my mom. She isn't drugged.

Sleeping has been an issue for my mom so I have been going every night after dinner and giving her the homeopathic remedy that I always gave her to help her sleep. It works great.

Unfortunately, the nurses can't give it to my mom because the doctor didn't order it. I will ask the doctor to allow the nurses to give my mom the harmless homeopathic remedy. I will need to put on my best sales hat to sell the home's traditional doctor on the benefit. I am my mom's Healthcare Proxy; she has to listen to me.

Mom's making friends. She is starting to talk; folks are seeing her humorous side. One day I brought her some food and the nurse gave it to her. My mom wouldn't eat it. The nurse said, "But your daughter brought this for you." My mom's reply, "I don't care!" That's my mom.

Visits make a difference to folks in a nursing home. Even though you may THINK that they don't know you are there, the person really does know. They may not be able to speak to you to acknowledge your presence, but your visit matters and makes a difference in the quality of their day.

Savita the Cat is becoming a celebrity. She still travels around the home with different residents. Yesterday, I walked my mom around the floor looking for Savita. One of the staff found her with one of the residents, Helen. She had her hidden in her lap. When Savita was returned to my mom, her face was stained with milk... someone was trying to "feed her" and give her a little bit of their milk.

The nursing home transition is important; families and friends are what make it easier for the person we love.

Ass-U-Me

2011-06-13T08:36:00.001-04:00

Assumptions. We all make them at one time or another so that we can come to a conclusion in our mind. People don't seem to like lose ends; we want a beginning, middle and end. It's probably why we like fairy tales.

Human nature seems to embrace labeling people and things; tie them up neatly in a bow and tuck them in a box once a conclusion has been formed.

I am guilty of labeling; I'm human. I am sorry for my ignorance.

One never really understands the destructive power of assumptions; created from a conclusion based on insufficient facts. We are all guilty of assuming.

I have been a victim of assumptions. It sucks when it comes from ones family; ones perceived support system.

"It's your choice."

"It's your journey."

"You are holding on... you've got to let go."

All sentences that I've heard over and over again; all have added to Caregiver stress... people know jack. Really? You honestly believed that I enjoyed wiping my mom's ass and cleaning shit every single day for the last 8 months?

I have one question for anyone who has made similar statements to another Caregiver... How on Earth can ANYONE tell us what they KNOW about us and our situation if they have not taken the time to gather ALL THE FACTS?

Let me give you some facts.

1. Doing the paperwork to get my mom on Medicare/Medicaid was daunting. I still can't believe I did it. It was hard. She couldn't get on any wait lists without the insurance in place... period. I did this early in the process, starting over 2 years ago.

2. I searched and visited nursing facilities - ALONE. It was difficult to look for the place where I knew I would take my mom to die.

I searched for a home that could accommodate my mom and Lewy Bodies Dementia. Witnessing the illness through my mom, I knew in my heart that I had to stand by her until I found the right place. It was hard. Well meaning comments by misinformed family and friends made it harder for me to cope and reach my goal; finding a place for my mom.

3. We waited and waited. I called nursing homes every week and checked on the availability of a bed for my mom. "Not today my friend." Discouraging words as I continued to clean up human feces off walls and floors. I waited.

I panicked. How could I keep caring for my mom when she started fecal incontinence and falling every day?

I asked for help. I heard crickets. I was on my own. Depression was setting in and my time was running out. How was I going to find my mom a bed on my own?

Calling out for help, I got help from strangers. No one tells a Caregiver how to do anything. If you don't ask the right questions, you will never get the answers. Exhaustion makes the task of caring and finding a nursing home extremely difficult. This is where I could have used my siblings support and help; finding a place for our mother.

I did it. I did it alone. I am sane. I feel good about myself for fulfilling a promise that I had made to my mom in 1979 at my fathers wake. Once my mom does pass, I will rest easy knowing in my heart that I did all that I could to help her.

It was a journey and it was my choice to keep my mom home with me until I found her the right facility. Why? Because visiting her in a shit hole is not something that I wanted for either my mom or me.

One more thought: Before you make another assumption, remember that no one can KNOW anything about another individual... you can only KNOW things about yourself.

Assumptions allow you to reach the wrong conclusion. Please gather all of the facts to any issue before coming to a wrong conclusion that makes life more difficult for the person being judged. It's easy to be a judge for others but how about judging yourself and coming to a conclusion about your own actions.

Tell me something... why do you want to make an Ass out of U and Me?

Everyday Is Better and Better

2011-06-12T09:47:00.002-04:00

I have been visiting my mom every day at different times of the day so that I can check on the level of care that she is receiving.

I show up unannounced.

The facility where I placed my mom is providing care, awesome care. No matter what time of day I arrive, Mom's comfortable and has lots of people around.

Typically at 5pm, when my mom was living with me, she would not be able to function. Hallucinations, falling, aggressive behaviors, agitation, extreme confusion and sleepiness became part of a normal day for us. It was tough to handle day in and day out.

Yesterday, I visited my mom at 5pm. I walked into the dinning room and witnessed a small miracle. My mom was sitting at the table with her tray in front of her. She was holding a ham sandwich, munching away, enjoying her food. Mom was FEEDING HERSELF! She had needed assistance eating for several weeks, yesterday she fed herself.

Mom saw me and she greeted me with a big smile and a "HIIIIIIIIIII!!!!!!!!!!!!" I brought her a coffee from Dunkin Donuts. She held the cup and drank it unassisted. She didn't need a straw. Unbelievable. Mom is getting better. I also brought her an ice cream, her favorite chocolate covered coconut ice cream bar.

Confined to a wheelchair, unable to stand and walk; Mom continues to try to stand, she forgets. Everyday I visit, I attempt to get her to walk. Yesterday, she stood but was scared; "I'm scared." She said as I encouraged her to stand tall, to trust me... "I won't let you fall. You can do it."

Thursday, my mom had her hair done at the hairdresser that visits the home every week. It surely made her feel good. Every week mom will have her hair done; something for her to look forward to.

Mom's doing better, every day she is better than the day before. Unfortunately, she has a UTI; I didn't expect the doctor to listen to me with how we prevent them from occurring. Part of me wonders if the doctor wanted to "see for herself."

Today I'll visit and bring her a coffee. I'll also bring one for Ruth, a friendly resident who wheels herself around in her wheelchair. She always sits with my mom and me when I arrive. She loves Savita the Cat and laughs her head off when I make Savita "talk" to her. Yesterday, Ruth spoke to me for the first time. I didn't know that she could talk. She's sweet.

Everyday Is Better and Better

2011-06-12T09:46:00.000-04:00

Where's Savita?

2011-06-09T08:04:00.000-04:00

"Savita?!... Savitaaaaaaa..... here kitty!" My mom called her cat yesterday.

Savita the cat has been with us since she was a little kitten. A feisty black cat; I adopted her from a vet. No one wanted Savita because she scratched. She didn't like human hands and definitely will not tolerate any hand touching her to this day.

Feet? Now feet are OK. She will let you rub her with your foot.

I worried about my mom missing her cat.

Years ago I purchased a toy black kitten; it looked like Savita. I sent it home with Brian as a joke so that he didn't miss Savita during the week.

The day after my mom was admitted to the nursing home, I thought of the stuffed black cat. Maybe she'd like it if I could find it; maybe it would be a good stand in for the real Savita? We searched the house and found it.

It worked! Ma believes she has her cat Savita with her.

Savita travels around the home. I never know where I'll find her but when I do and I give her back to my mom, mom smiles and says, "There you are?!"

Savita makes her way around the home... we never know where we will find her.

Better Days... Finally!

2011-06-07T07:01:00.000-04:00

Yesterday, my morning visit with my mom was very good.

"Ah, FINALLY! Where's my coffee?" I was stunned by her greeting.

Sunday, my mom looked like she was ready for hospice. Hollow eyes and an expressionless stare; Ma? Where are you?

The nursing home that I found for my mom is very nice. A five star facility; how on Earth did I find it? Was it all the praying that I had done to Mother Mary?

The last 2 years, I spent countless hours researching and visiting facilities. I toured some of the saddest places on the planet; I left in tears. The residents sat in chairs, lethargic, no one talking, no one communicating; folks were clumped in a room, together yet alone. There was a smell in these homes, not of urine or human feces, it was different; I wonder if it was the smell of death? I cried. I worried that I would never find a home for my mom.

The five star nursing homes have wait lists, long lists of a year or more. I prayed. I visualized my mom in a nice home, one where staff smiled and were attentive to the needs of the residents. I believed that I would find such a place, I knew they existed... I saw them!

I waited. I called, "We're still interested, any beds open yet?" I waited a long time for "the call" to come, telling me that they had a bed for Jo. The call never came. I teetered on the edge of depression. I took a deep breath, pulled myself up and focused on the goal; finding a bed in a 5 star nursing facility.

Time was running out; mom was declining rapidly, falling and needing 24 hour care. I couldn't provide the care that my mom needed any longer. Caring for my mom was killing me.

I prayed. I prayed the Hail Mary prayer so much that I heard it in my head constantly. I prayed. I would close my eyes and see the Blessed Virgin Mary in my minds eye. She glowed. She became brighter and brighter as I recited her prayer; it was the mantra that kept me focused on hope.

Calling all the facilities that we are on wait lists; all homes gave me the same answer, "Oh, not yet my friend." I cried. I didn't want to do this care giving job any longer. I didn't want to visit more nursing homes; I didn't have the strength. Blood pressure rose as my patients dwindled; I was alone in my nightmare. I had to make it stop or I was going to die before my mom.

Few cared or heard my cries; I was becoming seriously depressed. It sucked. I began to think about death every day, my death. Death felt like it was the only way out of this hell that I had been living for the last 3 years.

I prayed. My mom needed a home. She was falling every day and forgot how to walk up the stairs. It was not safe for her or me. I turned to the internet.

Google helped me find my mom's facility. I began searching homes that were outside of my mom's insurance "network." One call led to another as I asked the same questions, "Do you have any beds available? How about short term beds?"

"Yes, as a matter of fact we are discharging someone tomorrow. We will have a bed for your mom tomorrow. Can you come tomorrow morning for a visit?" My prayers were answered.

Chirping birds greeted me the next morning; my heart skipped a beat... I FOUND IT! The facility was perfect, it had everything that I had hoped to find for my mom.

My mom was smiling yesterday as she held her "baby," Savita the cat.

Natural Treatments and Lewy Bodies Dementia: My Opinion

2011-06-05T17:57:00.000-04:00

My mom had been on all natural remedies to treat all of her health conditions and symptoms from Lewy Bodies Dementia; Mom had a lot of good days.

I was ridiculed; to my face and behind my back. Folks thought I was insane because I didn't have my mom on pharmaceutical drugs. I was accused of having Bipolar Disorder because I refused to follow the leader. Instead, I stood tall and I became the leader.

Fighting for what I believed was right, to give my mom the best end of life that I could; I bucked the system. It was difficult and very stressful. Traditional doctors added to my stress.

I learned a lot about traditional medicine and natural medicine. I witnessed and documented everything; most of it is here within the pages of my blog.

Natural medicine works better than pharmaceuticals. My mom was ambulatory right up to the day I brought her to the nursing home; she was on all natural remedies.

2 weeks ago, my mom and I took a walk in my back yard.

She began not eating well and falling every day. I was able to get her to take the liquid medicines from a teaspoon and the powder supplements were mixed in applesauce. She was feeding herself once I showed her how to use the spoon. The natural remedies kept her alert.; they allowed me to wait for a bed in a nice home to open for her.

She walked herself into the nursing home; mad as can be, struggling to run away. I felt horrible. I couldn't believe that I was literally dragging my mom in to the place where she was going to die. I was exhausted. I couldn't care for her any longer; it wasn't safe... it hurt. I didn't cry.

There was never a happy ending to this story with my mom and me; she would die no matter how many natural remedies she took, acupuncture, special foods, Reiki and hypnosis; all methods that we used consistently to help my mom. However, I witnessed mom having lots of good days before we reached this pinnacle of our journey.

I learned. I am wiser.

I believe in Natural Medicine first and pharmaceutical as the last resort. Witnessing first hand the gentle power of natures medicine cabinet.

Today, my mom is on pharmaceuticals. She is a vegetable. She has no idea who I am anymore. The decline was sudden.

It is difficult to watch my mom die, no matter how much I know that death is inevitable for all of us. It's the cycle of life. I know this truth; it doesn't make it any easier.

We are born, we grow, we live, we learn, we love and then ... we die.

.

How Did I Do It?

2011-06-04T06:42:00.003-04:00

Mom... just before she started falling down all the time.

There is a life out there for my husband and me!

Care Giving for my mom... how did I do it? How did I function, day in and day out with minimal sleep? How did I clean up my mom's poo?

The anxiety that I felt every minute of every day... holy crap, HOW DID I DO IT!

How did I wake up every day, knowing that I could have to clean up a mountain of human feces before I even had a cup of coffee?

How did I answer all of my mom's questions about my dead relatives? How did I make up stories to calm my mom when her hallucinations frightened her?

How did I do it?

How did I manage, caring for my mom when my mother-in-law was so nasty and mean toward me?

How did I care for my mom when she fought my assistance, assistance that she needed but didn't understand?

How did I do it?

How did I do all that I did by myself without much support from my family?

How did I overcome my anger and grief?

How did I do it?

I have given this question some considerable thought and the only answer I have is... LOVE.

The power of love allowed me to keep going, every day, facing one challenge after another. Love is how I did it. It's how all Care Giver's do what we do for the people in our care.

Love is what guided me toward placing my mom in a home. I couldn't care for her any longer. I needed a crew, 24 hours a day, 7 days a week. It was hard to bring my mom to the home. I was forced to face one of my greatest fears, putting my mom in a nursing home.

Now that the first week is behind us, every day is easier. I am more relaxed, sleeping through the night without my heart racing from fear; fear of what I'd find when I got to my mom. Blood pressure has normalized. I feel terrific.

How did I do it? Love.

Transitioning to a Nursing Home

2011-06-02T06:56:00.000-04:00

Mom, drinking her Dunkin Donuts coffee with "Savita" on her lap

Change is never easy. Human's enjoy routine. Folks with Lewy Bodies Dementia or any dementia for that matter, need a sense of familiarity; it allows them to feel safe. Feeling safe prevents wandering.

Caring for Mom became too hard; way too hard. I felt like my head was going to explode. Serious health issues were beginning to show symptoms in my life; I felt sick. My blood pressure was reminesce of a children's cartoons from the 1960's where the cartoons head turned beet red after becoming upset.

I was crying way too much; it had to stop. My tears and my emotions were negatively affecting my mom. Exhaustion consumed me. I had trouble pulling myself up and out of the hole like I had done so many times over the last 3 years. My feet, stuck in the muck, unable to move; I was trapped.

My mom's illness was beginning to kill me. A slow death that could possibly take me before my mom. Survival. I had to survive my mom. Keeping her home was the cause of my troubles; mom had to go.

I prayed a lot. Lots of my readers and friends prayed. I needed a miracle. I believed one would manifest and in the 11th hour, a bed opened for my mom. Hallelujah!

The transition is hard for both my mom and me. Letting go. Allowing traditional medicine to take over has been tough for me. I see that it's not working as well as the natural remedies. My mom's new doctor at the home isn't open to the natural route. She immediately discredited me when I suggested food as medicine. She even told me to stop giving my mom vitamins! Of course I won't; they have helped my mom to have better days.

My mom isn't eating at all. She isn't talking either. My mom's mad. She hates being there at the hospital, but it's the best place for her. People around all the time. Activities all day. New friends. A bit overwhelming for her but she'll adjust.

The nurses at the home are super. I like all of them very much; they are loving and gentle with my mom.

Yesterday, she participated in the activities in the dementia unit; the place she will one day have a bed. Of all the dementia units that I've visited, this is the nicest one I've ever seen. My mom saw the unit yesterday, she saw the nurse she had over the weekend; one she liked a lot.

I'll see her this morning. I'll bring her a Dunkin Donuts coffee and take her for a ride outside before she goes to her new "school."

Time does make it better. I've learned through this whole ordeal that it's harder for me to move her out of my home than it is for my mom being in a new place. Visiting her is important; it reassures her that she's not forgotten.

The transitioning to a home is hard. Care Givers, you do need to think of yourself or you will get sick and die before your ward. Suck it up. Take a deep breath and do it. I do recommend doing your homework. Visit places, see what you think. Ask yourself if you could live there... if you could, you found the place. It's a lot of work to find the right place. Even after you find it, you will second guess yourself... I did.

I had a melt down. I cried. I felt so bad. My mom was unhappy and pissed with me. My emotions were all over the place. Now that my mom is out of my environment, I realize that there is no way I could ever care for her again like I had been... how on Earth did I do it?

We are transitioning. I am waiting for the day that my mom tells me that she's "too busy" to go out with me. Everyone tells me it will happen; now I wait.

The Freedom Buzz

2011-05-30T07:24:00.000-04:00

Care Giving for my mom with LBD had become oppressive; especially when she started falling all the time. Every day, she would fall. She needed someone watching her 24 hours a day, 7 days a week. Even with help from the MassHealth Community Based Program, it wasn't enough to allow me to keep her at home with me any longer.

It was not safe for my mom or me. She was a heavy 136 pound woman. Lifting her off the floor was challenging, but I managed every time.

The stairs were becoming more and more frightening; I worried that she'd fall down the stairs when she was chasing her hallucinations. Helping her up the stairs, I never knew when she'd freak out and try to push us both down the stairs.

Life as a LBD Care Giver is not for the weak of heart. We lose our freedom to live. Our lives are slowly consumed by Lewy, waiting to wreck havoc in any life that it can touch. I was beginning to feel as though I was losing my mind.

Sleep deprivation. I have it. Sleeping with one ear open, always listening; never able to rest. Falls. Odd behaviors and exit seeking, add to the stress of a Care Giver. Lots of tears are shed.

Care Givers, we feel forgotten in this battle with Lewy. No one understands the needs of the Care Giver, doctors rarely ask how WE are... health care professionals seem to not even know that treating the patient and Care Giver jointly is beneficial to the overall health of both.

When our loved ones start to fall, Care Givers are initially looked upon with suspicion because of bruises. False accusations come to a head like a big zit on your nose. Investigation by Protective Services, all add to the stress of a Care Giver... I know, it happened to me when my mom began to fall and get bruised.

I was a prisoner in my own home. All that I was doing to help my mom was going unnoticed by everyone. My heart was heavy. I was left here alone, forgotten, left to carry my mom. I cried. I got mad at my family, again. I was beginning to feel resentful. I wanted to run away and even began to think that if I died, it would be OK. I didn't want to live.

I heard my dad's voice, "Susie, wait. Time heals all. You will never fail unless you quit. Wait."

I waited.

I sucked it up and found some strength. I called everyone. I cried. I begged and pleaded for help. Elder Services Case Manager asked me why I couldn't watch my mom for 24 hours, why did I need more help. I couldn't believe I was hearing these words... are you kidding me? My reply, "I can't do this for another second."

"God! Please HELP me. PLEASE! I beg of you... please help this nightmare stop." Looking up to the Heavens above, hands in the prayer Mudra, I pleaded.

I prayed to Mother Mary. I had repeated the "Hail Mary" so many times, that I can still hear the prayer in my head. It's like a record on replay, over and over, I hear her prayer. I see her image when I close my eyes.

My mom is in a safe place. I'm grateful that she isn't able to speak right now, she'd surely say something that would hurt my feelings.

We have the Freedom Buzz, all of us in our home. All 3 of us can't stay awake past 9pm. The house is quiet. We are enjoying going out when we want, not worrying about finding someone to stay with Jo. I can go out in the back yard, I can sit on the patio and drink a cup of coffee or a glass of wine. No jumping up every second that I think I hear my mom.

Brian and I can have conversations again, full conversations that are uninterrupted by my need to check on Jo. We can watch an entire episode of American Pickers or Top Gear together. We haven't been able to watch TV together, an entire show that we both enjoy for a very long time.

Laughter is returning. Brian makes me laugh, he's so funny. I don't have to cook every day. We can have just a salad or go out for ethnic food to spice up our lives.

Yesterday, we had Indian food. I never liked the smell of curry. Cooking with cumin and coriander over the last few years, it helps cognition; helped me to acquire a taste for curry. Oh my God... the food was amazing. I LOVE Indian food.

We are free, sort of. Freer than we had been. I still visit my mom every day. I'm off to visit her now and help her eat breakfast. I'll bring all her nutrients that I had been giving her. Maybe it will help her to find her ability to communicate.

The freedom buzz is amazing. The relief is like nothing we've ever experienced. We did it. I did it. I learned a lot about myself. I also learned that everything is possible if we keep our eye on the goal and ignore all the buzzing bees around our head.

I am grateful for my freedom. Thank you God, Mother Mary and any other supreme being that answered my cries for help.

Mom Settling In

2011-05-29T21:30:00.000-04:00

It's been surreal. My mom is in a facility. I was unable to care for her another minute; I was spent.

Blood pressure through the roof; a weird headache that I've never experienced was the tell tale sign that there was something wrong. I cried every day for months and on and off for the last 3 years. This journey with my mom has been intense.

Relief from care giving; exhaustion leaving my being as sleep restores my inner battery to keep on keeping on. I feel more alive. Life was difficult this last few weeks. My mom was falling repeatedly. Her balance was way off, jumping up to chase hallucinations, with agitation from her inability to speak.

Just in the knick of time, a bed opened for my mom. Friday, she started exit seeking at "work"; the indicator that she had outgrown the day program. I picked her up from the program and drove her to the nursing home.

Knowing that external emotions affect my mom, I decided to go alone to the nursing home with her. I held it together, I had to. I didn't shed one tear, even though my mom gave me the old Italian "Stink Eye." She is mad at me.

Abandonment issues from her childhood are prevalent, she is depressed. I have visited her every day since she was admitted. Yesterday, we brought her an iPod radio with our old iPod so that she could listen to Frank Sinatra. Music calms her and blocks the noise of sirens going off in other patient rooms.

Today, I visited Mom and fed her applesauce with all her vitamins.. B12, Applpoly, Vitamin D3 and a 50 Billion probiotic. She loved the applesauce. I think it helped her to realize that I wasn't leaving her alone in this place.

I drove her around the grounds in a wheelchair. She couldn't speak to me. I showed her where the cows and horses had once grazed. Her nursing facility was built on old farm land. It's very pretty outside.

The breeze was nice this morning. I could tell that my mom enjoyed getting out. She held her little stuffed black cat; a toy I had bought years ago when her cat, Savita was a baby. I couldn't help myself, it looked just like my mom's cat. She was patting the cat this morning and when we went for a ride, she held her stuffed black cat like a little girl.

I had met a few other residents. I introduced them to my mom. Angelina is my favorite. "Do you like Italian food? Come to my house! I'll make you a nice Italian dinner when I get home." Every day, she says the same thing.

My mom enjoyed meeting Angelina; she looked like her cousin Angie, her favorite cousin that has been dead for years. Angelina invited my mom to her house and said, "Would you like that, Josephine?" My mom smiled and nodded to Angelina.

Mom spoke for the first time today. I asked her what she needed and she said, "toilet." Wooo hooo! I raced her back in to the home and 2 aides helped her. I didn't have to do it.

Off we went when her business was done. I took her to the dinning room where they were having donuts and coffee. My mom and I sat with Angelina and her friends. They were funny. One lady, Anna was such a bitch toward me... it made my mom laugh.

Our new found freedom is like nothing I have ever experienced. Silence. We finally have silence. I can hear myself think. I can relax knowing that someone is taking care of my mom, someone way more capable than me.

Thank God

2011-05-27T11:46:00.000-04:00

Today I got the call. My mom's insurance approved the out of network home that I found for her.

Placement is all in the works RIGHT NOW!

I'll bring my mom to the nursing home at 2:30 today after I pick her up from the Day Program.

Tonight... I will get to sleep without a baby monitor.

Thank you everyone who prayed or sent positive thoughts out to the Universe... IT WORKED!

Thank God!

Found A Bed, But....

2011-05-26T14:22:00.000-04:00

It's been hell on Earth. I am sick again; exhaustion has captured my being. I cry more than I don't cry.

Yesterday, my mom nearly pulled both of us down the stairs. I was attempting to help her walk up the stairs when she got home. One stair from the top, she had some sort of hallucination. Suddenly, she straightened her legs, stood on her tippy toes and bent forward as she pushed backward.

"Ma! We're going to fall. Stop. Please, stop!!!" I screamed as I hung on for our lives.

Out of breath, I managed to get us off the stairs. My Polish Grandmother was right, I am "strong likem' bull."

My mom's paper thin skin got a tear on the top of her hand. My blood pressure shot up and my head began to pound.

"How am I going to do this?" I cried.

I called everyone yesterday. I tried to get her in on a short term bed somewhere. No one would take her because of her condition. Then, I started searching Google, looking in areas that I didn't look before... I found a place where someone was being discharged today and a bed would open TODAY.

9AM, I visited the home and met the admissions person. The facility is beautiful and perfect for my mom. She will be in the rehabilitation unit and moved once a bed opens in the dementia unit. She'll have physical therapy and speech therapy. She'll have someone watching her round the clock.

I was excited. The admissions person was checking with my mom's insurance to get her admission approved; I jumped in my car and drove home.

"I can see clearly now, the rain has gone..."

The radio had an appropriate song on the radio when I started up my truck. I opened the windows and sang along, out loud and with feeling. I had hope.

Little glitches. Phone calls all day. I sit and wait for my mom to come home, hoping that today is the day I can move her somewhere safer. It's not safe for her or me any longer. Mom's way, way, way too much for one person to manage.

No more day care for my mom. She's too much for them to handle too; they are afraid she'll be hurt.

I am praying.

Care Giver Sentence... Almost Over?

2011-05-24T08:55:00.002-04:00

Caring for my mom is the greatest burden I've ever carried alone. No word can describe it; if you want to know, live the life of a Dementia Care Giver. It's heavy.

Mom has no idea who I am, needs assistance with everything, hates living in this house, wants to go with my brother Ed (who's dead.) She fights anyone who tries to guide her; pushing back, digging her heels in the ground and making it impossible to direct her anywhere, especially toward the toilet.

Lewy Bodies Dementia is nasty. No matter how much reading and research that I did on my own over the last 3 years, nothing has prepared me for this leg of the journey with my mother.

My one hope is that my experiences helps someone someday to prepare themselves emotionally for what is coming. It's not pretty.

Mom has a new behavior; whenever she has to use the bathroom she pulls her pants down and proceeds to "find a toilet" ... wherever she stands.

Cleaning shit off the floor is horrible; seeing my mom prepare to relieve herself in an inappropriate place is akin to living ones worst nightmare. I am stressed.

My mom needs a bed to open. Sorry to sound like a broken record; I can't think of anything else that we need more.

I have NO idea how I am caring for my mom with one hand. I'm amazed that I haven't ripped my stitches.

I'm grateful for the Day Program Director acting as our advocate; doing what she can to get my mom placed or get more hours of in home help while we wait for a bed to become available.

Mom is back to half days at the day program, returning home at 2pm every afternoon. I am not ready for her to come home early. I need more respite, not LESS!

I sob.

Will my prayers be answered? Will I ever be released from the Lewy Bodies Dementia prison? Hello Universe? Hello? ... Please help end this horrid dream. Is my Care Giver Sentence almost over? Please send reinforcements!

The Mary Statue Mystery

2011-05-23T09:45:00.001-04:00

Mother Mary in my garden.

I love Mother Mary. I pray to her when I need help. In the past, she has always come. However, I have felt abandoned lately, even by Mary.

Mary hasn't visited me in years. Her signs, if she's been leaving them for me, have gone unnoticed. Care Giving seems to dim my sixth sense. Typically, Mary visits me in dreams. I haven't been dreaming.

My mom is super challenging, often interrupting my sleep. Cognition fluctuations are more and more frequent with greater intensity. Hallucinations are back with a vengeance; scary hallucinations that require me to pick up the phone and dial Dream Master.

Talking into the air at my Mom's hallucinations help calm her, but sometimes not even my acting impresses her enough where she relaxes and can be redirected.

Most times I have no idea what my mom is asking me and often she answers questions opposite of what she intends. The most important question that is often answered incorrectly is, "Ma, do you need to use the toilet?"

Today was challenging.

I cried after my mom left on the van this morning. The pressure of caring for her while we wait for a bed to open in a home that is LBD qualified is indescribable. My heart bleeds for Care Givers of LBD patients; we are often forgotten even by health care professionals. No wonder so many of us get sick.

Saturday was a beautiful day. I took my mom outside in the backyard and we walked. My goal was to wear her out so that she'd sleep at night. I need to dream. I need to solve my problems and dreaming is one of my most successful methods.

While we walked, I stopped in front of my new $16 find, a cement Blessed Virgin Mary statue. My mom had her arm around me and rested her head on my chest, just like a little girl.

Bowing my head in reverence, arm around my mom, I recited Mary's prayer; taught to me when I was a very small child.

Hail Mary, full of grace, the Lord is with you.
Blessed art thou, among woman
and blessed is the fruit of thy womb, Jesus.
Holy Mary, Mother of God,Pray for our sins, now and at the hour of our death...
Amen

"Thank you." My mom said as she bowed her head. We continued our walk.

I begged Mother Mary in my thoughts to help me and my mom. I told her that I am scared. I asked her for a sign.

The Mary Statue Mystery
... my sign

This morning, I looked out the back window and got my sign. My Magic Mary had turned around and was facing the window. I had her looking over the backyard. I didn't turn her. Brian didn't. Who did? Was it Mary?

I got my sign. Mary hasn't abandoned my mom and me. I believe that relief will come for us soon.

"Thank you, Mary!"

Who Knew?

2011-05-22T08:57:00.000-04:00

Mom, exhausted one morning... waiting for Martha to drive her to "work."

Lewy Bodies Dementia is cruel, not only for the patient but the Care Giver.

My personal goal over the last 3 years was to help my mom have more good days. It's required vigilance on my part, watching and observing how everything from food to environmental changes affect my mom's mental state.

Constantly, we need to modify our treatment plan. It changes like the wind. One day something will work and the next day, it won't. It's becoming more and more difficult; fighting the battle with Lewy Bodies Dementia has compromised my health.

I'm not feeling great. I don't know if it's my fight with depression, lack of sleep or if I have something going wrong inside my body. It's a little scary. I do find myself saying when I am worn out, "So what if I die... at least I won't have to worry about Lewy coming for me one day."

It's horrible to lose hope.

Exhaustion did get the best of me. The changes that Lewy brought with my mom's latest decline have begun to interupt my sleep once more. I can't live without sleep and rest; it causes me to lose hope.

One of the Day Program workers recommended that we get a baby monitor so that I could hear my mom at night and know when she woke up. My brilliant husband suggested that we check the 2nd hand children's store in our town. We stopped in yesterday during our 3 hours of respite and low and behold, one sat on the shelf for $10!

Yesterday was a rough day for my mom. She hallucinated a lot. She was sleepy and slept most of the day. When I got home at 2:30, I had her get up and get dressed. I knew that I needed to tire her out. My plan was to take her outside for a walk.

She wasn't able to walk in the sun, it seemed to make her stand frozen in place. We walked around in the shaded part of the back yard. I carried my music player around the yard with us so that we had background music to go along with all the birds chirping. I sang and danced while we walked.

My mom even started to dance on the patio! Her frown was turning upward into a smile. She remembered the back yard. We sat outside for a few hours, walking and sitting in chairs that we placed around the yard for resting spots.

Last night, it was tough to get my mom to go to sleep. She was looking for Al, her brother who passed last month from his long battle with this horrible illness. We didn't tell her that Al died, we kept it a secret because I worried that she couldn't process the news. It is amazing to me that she sees Al all the time now, like she does my brother and father.

The baby monitor worked great. I slept very well and actually woke up feeling rested today. I'm sure this will help lower my blood pressure, a health issue that has recently made it's way into my life.

Listening to my mom's light snore, I drifted off into a deep sleep. At one point, I felt like I was sleeping in my childhood home with my mom in the other room snoring; such a soothing sound.

Mom didn't wake up all night. My heart didn't pound and race in the middle of the night with every sound that I heard above my head. No wonder my blood pressure is high these days.

My husband got to enjoy a snoring concert between my mom and me. We snored softly in unison and more importantly, we slept and I woke up feeling rested for the first time in way too long.

I highly recommend Care Giver's get a baby monitor, it will help ease the night time worry so that you can sleep.

Who knew? I wonder why no doctor has ever recommended a simple device like this baby monitor to help me with my sleep disturbances?

Patience Is A Virtue

2011-05-21T16:26:00.000-04:00

Waiting for the van

Just when I adjust and settle in to new behaviors that come with Lewy Bodies Dementia, the proverbial rug is pulled from under me. The stress caused by the uncertainty of this horrible illness is beyond overwhelming.

Dementia feels like it's contagious at times.

Am I NUTS?

When will this nightmare stop?

We deserve to live a better life. We deserve to have happiness and fun. We deserve peace. My problem these days is how do Brian and I get from where we are right now to the freedom land?

Mom's declining more and at a faster pace. She could not eat last night. She was agitated. Nothing worked to calm her, not even the homeopathic remedy, Hyoscamous... this always worked in the past.

2:39 AM... I woke up. I didn't hear anything but I had a feeling. Opened the door... night gown on the floor. "Oh NO!" I thought it was my mother. It was just her night gown. Mom, was laying at the foot of her bed, naked and curled up in the fetal position, shivering. All I could ask myself is, how long has she been laying here like this?

The day program called me twice this week. "Sue? Mum's having a bit of trouble. Can we send her home early?" A call that I received on Monday which created a pool of tears large enough to fill an ocean.

Only one good day this week; Tuesday.

Yesterday, I was exhausted from the episode with my hand wound. I laid down for a nap while my mom was gone and being looked after by a team of professionals. Just as I was drifting off into a deep sleep, the phone rang...

"Hello, Sue? This is Denise. I was thinking, your mum is having difficulty more and more often... maybe we should cut down her hours. I'm calling transportation to see if we can arrange it to start next week." A message that took a few minutes to register. Was I still dreaming is all that I could think initially.

I have always known this day was coming, where the Day Program wouldn't be able to care for my mom. It's not a dementia specific Day Program. The dementia program that she had attended initially was a lock down type places which my mother hated. The program that she attends currently, is awesome with outstanding aides and nurses that my mother has grown to love... they are not trained in dementia.

We need a bed to open NOW, Universe... do you hear me?

Patience has never been my virtue.

Multiple Lacerations

2011-05-20T11:34:00.001-04:00

Yesterday was one of those days that I didn't think could get any worse... but it did.

My mom had a doctor appointment; I picked her up after lunch from the day program. She was having depth perception and balance issues, picking at something in the air with hallucinations making frequent appearances.

Like getting a cat into a cat carrier to take to the vet, my mom planted her feet spread out her arms and screamed at the top of her lungs..."NOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"

Standing at the door to the office building, my mom was in a full blown panic. I didn't know what to do so I started talking.

"Ma, I promise you, I will take you home... we are just seeing your doctor. It's a routine visit. Come on. Please, Ma. I'm begging you. I promise you, I will take you home with me." I reassured her in the calmest voice that I could muster out of my mouth.

Mom walked through the door... sort of. I guided her, locking my arm under hers as I reassured her that she was coming home with me.

Fighting me all the way, my mom was difficult to move. My pleading didn't really help much. We got to the doctor's office door and she wouldn't go in. She kept mumbling something and then saying, "Oh, no... you aren't getting me in there."

The doctor visit was uneventful; he agrees that it's time for my mom to go to a home.

Leaving the doctor's office, my mom now didn't want to walk out the door. She had fixated on a door in the doctor's office, she wanted to know what was in there but I wouldn't let her open the door. I guided her to the exit. My mom was unhappy and mad.

In the parking lot, she wouldn't walk. She planted her feet. I told her that we were going to the truck so that we could go home and see Belkis, her Care Attendant. She didn't believe me. I moved her along, getting her out of the way of traffic. My mom got madder and started to scream..."YOU ARE GOING TO BE ARRESTED! Don't touch me!"

By now, we had people looking at us and I was expecting the police to show up. Hurriedly, I got my mom in the truck and drove away.  Driving for several miles, I found myself looking in the rearview mirror for blue flashing lights of a police cruiser.

My mom was OK when she got home. She had poor balance and wouldn't sit still. She kept jumping up and bending over to pick up an imaginary item. My mom fell again. I left her for 1 minute and BANG!... down on the floor.

Finally, with Mom tucked into bed, I headed downstairs to have a glass of wine and some sushi. I left the sushi in the garage refrigerator earlier in the day; it was a special treat dinner for Brian and me.  The garage was dimly lit by the dusky sky. I didn't turn on the light.

Walking toward the fridge, I tripped on something and flew through the air. I put my right hand out to break my fall. As luck would have it, there was a broken bottle on the floor of the garage. The base of the bottle, with it's jagged edges was in the right place to slice my hand open.

"Oh no!!!!!! Brian! I gashed my hand!" I exclaimed as I rushed into our room.

Blood gushed out of my hand. Two slices. It was gross. I freaked. I worried about my mom. She hadn't had a bowel movement in two days and was due to have one any minute. After not going for 2 days, her bowels are usually explosive... SHIT! How was I going to go to the hospital for stitches? I began spinning out and started to cry. I was panicking.

"It will be OK Sweetie. Rachel will stay with Jo. It will be OK." My husband comforted me with his steady confidence.

Rachel left in charge to listen for my mom waking up, Brian rushed me to the ER.

Thank God it was a slow night; the hospital was able to take me right away. One hour and 4 stitches later, we were heading back home to have that sushi and the glass of wine that I had poured before I cut my hand open.

The doctor told me that alcohol would slow down the healing process and recommended that I not drink wine (alcohol.) I got home and drank the glass of wine, screw it!

My mom never woke up. She slept through the night. Sometime during the night she even woke up and used the toilet unassisted. I love it when poo makes it in the bowl... it did.

Mom was alert this morning and having a good day. I didn't have to help her out of bed like I have had to do days previous to today. She was steady on her feet. She remembered how to use a spoon. She ate with out any coaching. She had a massive dump that landed in the toilet, just before her ride arrived.

Not sure how I'm going to cook food or clean up after my mom, but I'll cross that bridge when I get to it. Thinking about it is very worrisome.

Looking back at yesterday, it wasn't all that bad.  We were in and out of the hospital within an hour, my mom never woke up, Rachel proved to be a fabulous Mom-sitter and I was able to eat sushi with chop sticks, washing it down with a nice glass of Pinot Noir.

Raising Mom

2011-05-19T08:44:00.000-04:00

Who knew that I'd end up parenting my mother, as I usher her toward her death day?

It's no secret. I have NEVER wanted children. The thought of wiping poop off another human's behind was never on my "bucket list." I was a new teenager of 13 when my first nephew was born; he showed me that having a baby is way over rated. Way too much poo and pewk! Definitely not for me; I chose to have a career.

Thank you Joe and Drew (my 2nd nephew, born when I was 15.)

Instead of children, I befriended seniors. Somehow I always managed to have one in my life; I always welcomed aging friends. Looking back, seniors were the few people who seemed to accept me for who I am... they filled my cup with approval.

First there was Walter, then Aggie and Tommy; folks who I believe prepared me to be Care Giver for my mother with Lewy Bodies Dementia.

Countless co-workers along my journey of life, warned me about the burden of caring for an aging parent. I will never forget my friend Mary Lou's reaction when I told her in 1998 that I was buying a house; one big enough for me to move my mom in with me... "Sue!? Are you out of your mind?!"

Yes Lu, I am.

Blinded by my desire for approval, I willingly entered into what would later become my personal Twilight Zone; raising Mom.

Here I am, 50 something and I have a baby that weighs 140 pounds; too heavy to lift. Poop happens daily. It's gross. I'm sick. My throat is always sore; my gag reflexes are definitely working. Life has become more difficult for us, especially me.

My mom is fading like the tulips. Once, magnificent and beautiful, the tulips and my mom are withering back into the Earth.

"Where's my brother?" My mom pleads with me for an answer.

Diapers and drool fill my life. Loss of balance and falls frighten me. In abilities, new ones showing themselves daily. Blank stares at her oatmeal bowl and spoon; no understanding of how to operate the spoon in order to feed herself.

"Here Ma, open up... yup, that's it. Open your mouth and try this..." Every day I have to coach my mom, remind her how to eat. Once I get her started she can do it herself.

Every day I have no idea what will greet me. Will it be a trail of poo smeared into the carpet? My mom laying on the floor? Will she remember how to get out of bed? Will she be alive?

Raising Mom is sad. She can't learn, she forgets. Every day, she requires more when my emotional and physical well of life is running on empty. Yesterday, she forgot how to walk up the stairs at the top with only one more stair to climb. Instead, she pushed backward... nearly sending both of us topling down the stairs.

"Ma! You have just one more step... step up! Just one more.... please, I am losing my grip and we will both fall. Please! Just take one more step up." I pleaded with her yesterday when she got home from the day program.

Out of breath, holding on for my own life; I found the strength to lift my mom up the last step. It was frightening for me.

My mom NEEDS a bed to open sooner than later. I call every week, checking and reminding the admissions people that we are anxiously waiting. I am gracious when I call, even though my mind is spinning with questions that could help give me an indication as to how much longer we need to wait.

I bite my tongue, wanting to ask... "So, is there anyone dying? How far along in hospice are they? Any ETD's (estimated time of death) that you can share with me?"

Raising Mom is no fun. I need help, not just the day program help but help on the weekends. Weekends are the hardest for me. My mother gets bored. She requires 24 hour care, care that is overwhelming. Loss of balance, chasing hallucinations and pulling her pants down wherever she stands when she needs to use the toilet.

My mother fights me. "No! The bathroom isn't there... hurry! Come on." My mom will scream at me when I try to escort her to her toilet. She plants her feet and pushes back, refusing to move forward and demanding to use the toilet that she believes exists.

It is stressful. My mission in life is to get my mom's waste to land in the toilet. Wiping her ass is the least of my worries these days. I never wanted children and now, I don't think I want a mother anymore either!

My mom is having difficulty at the day program. Sent home early on Monday because she was wandering and difficult. I needed Monday to chill out because the weekends are extremely difficult with caring for mom. My mom can't handle going to the supermarket with me anymore. It's too much stimulation and it sends her into weird states of being.

Raising Mom is challenging and heart wrenching. I can't help but feel alone in this nightmare... because I am. Watching my mother die a slow and confusing death, I wish for good health for myself or to die before I get an illness that scares people away.

Time Passes By

2011-05-16T08:50:00.001-04:00

My Mom when she was 18, her favorite time of her life.

It's been quite some time that I've sat down and wrote a blog post.

Life has been insane for me. Cautious to avoid sounding like a broken record to all my readers, I opted to not write. What can anyone do for me? Not much these days, so what's the point of writing about my emotional pain?

I have learned that Care giving does not get easier when raising a demented parent as it seems to get when raising a child.

With children, they are inquisitive and learn... seniors with dementia, they are inquisitive and they are unable to learn. Seniors move backward, children move forward. Frustration becomes a regular part of the lives of both the demented patient and the Care Giver.

Each day becomes an adventure, never knowing what new behaviors will become part of our daily routine. Fluctuation of cognition, loss of balance, poop, pee and diapers, is now our new normal way of life. It is challenging. Will I survive my mom?

"Ma, do you need to use the toilet?" A statement that is asked often in an attempt to avoid a hazardous waste clean up off the floor. Making my mom's poo my business is unpleasant... how did this happen?

Time passes by quickly, thank God.

How much longer do I need to endure caring for my mom? I pray every day for a bed to open in a home.

Today, I do feel like I am living a prison sentence. I am not free to enjoy my life and do things that I want to do. It's a struggle to stay happy and positive.

Life is short and can end at any time for any of us. Care Giving for my mom with Lewy Bodies is sucking the life out of me; I fear that Care Giving is making my life shorter. I beg the Universe to end this lesson of my life; I'm done and I need to live before my end comes.

Time, it passes by quickly!

I have been forcing myself to do things that normally bring me joy.

Gardening!

I have been weeding, digging in the dirt and building gardens that are beginning to come to life. For the first time since my mom went nuts, I'm starting all of my plants from seed. The rewards and the good feelings that the garden will bring me during harvest time, will surely lift my spirits; an infusion of life into my tired soul.

Uncle Al and Mom
February 2009

Mom's been seeing Uncle Al a lot. Last night, she started to cry, "Where's Al? Where did he go? I miss my brother; I want to know where he went. I love him, you know."

"I'm going to die." My mom exclaims repeatedly.

"If I'm here tomorrow..." Another statement that my mom makes often.

I wonder if she can sense death coming? I wonder if it's why she's always looking for doorways that don't exist? She wants to be with her brother Al, but she's scared to die.

"It's OK Ma. When you do leave your body, you will begin an eternal life; you will look like you did when you were 18 and had a 22 inch waist. Your body will be healed and free of all pain. Everything will make sense to you and you will more than likely want to come and tell us what you've discovered. I promise to pay attention and see you when you come to me." I hoped that my mom would be happy to know that in the afterlife, she will appear how she looked during her favorite time of her life on Earth.

Time passes by and brings new beginnings with each end. I am anxiously waiting for the end because I am beyond ready for a new beginning.

I'm worn out and need a miracle today.