The Pain Has Begun

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

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?

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....

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

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

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

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?

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

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

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

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?

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

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

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!

(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

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

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

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

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

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

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?

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!

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

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!

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,

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!

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!