Why Visiting Nursing Homes Is Crucial

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

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

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

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.

1. Listen
2. Agree
3. Control
4. 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?

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

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?

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

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!

"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

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

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

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!

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

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

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!

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

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

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

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

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.