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.

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.

Where's Savita?

"Savita?!... Savitaaaaaaa..... here kitty!"  My mom called her cat yesterday.

Savita the cat has been with us since she was a little kitten.   A feisty black cat; I adopted her from a vet.  No one wanted Savita because she scratched.  She didn't like human hands and definitely will not tolerate any hand touching her to this day.

Feet?  Now feet are OK.  She will let you rub her with your foot.

I worried about my mom missing her cat.

Years ago I purchased a toy black kitten; it looked like Savita.  I sent it home with Brian as a joke so that he didn't miss Savita during the week.

The day after my mom was admitted to the nursing home, I thought of the stuffed black cat.  Maybe she'd like it if I could find it; maybe it would be a good stand in for the real Savita?  We searched the house and found it.

It worked!  Ma believes she has her cat Savita with her.

Savita travels around the home.  I never know where I'll find her but when I do and I give her back to my mom, mom smiles and says, "There you are?!"

Savita makes her way around the home... we never know where we will find her.

Better Days... Finally!

Yesterday, my morning visit with my mom was very good.  

"Ah, FINALLY!  Where's my coffee?"  I was stunned by her greeting.  

Sunday, my mom looked like she was ready for hospice.  Hollow eyes and an expressionless stare; Ma?  Where are you?

The nursing home that I found for my mom is very nice.  A five star facility; how on Earth did I find it?  Was it all the praying that I had done to Mother Mary?  

The last 2 years, I spent countless hours researching and visiting facilities.  I toured some of the saddest places on the planet; I left in tears.  The residents sat in chairs, lethargic, no one talking, no one communicating; folks were clumped in a room, together yet alone.  There was a smell in these homes, not of urine or human feces, it was different; I wonder if it was the smell of death?  I cried.  I worried that I would never find a home for my mom.

The five star nursing homes have wait lists, long lists of a year or more.  I prayed.  I visualized my mom in a nice home, one where staff smiled and were attentive to the needs of the residents.  I believed that I would find such a place, I knew they existed... I saw them!

I waited.  I called, "We're still interested, any beds open yet?"  I waited a long time for "the call" to come, telling me that they had a bed for Jo.  The call never came.  I teetered on the edge of depression.  I took a deep breath, pulled myself up and focused on the goal; finding a bed in a 5 star nursing facility.  

Time was running out; mom was declining rapidly, falling and needing 24 hour care.  I couldn't provide the care that my mom needed any longer.  Caring for my mom was killing me.

I prayed.  I prayed the Hail Mary prayer so much that I heard it in my head constantly.  I prayed.  I would close my eyes and see the Blessed Virgin Mary in my minds eye.  She glowed.  She became brighter and brighter as I recited her prayer; it was the mantra that kept me focused on hope.

Calling all the facilities that we are on wait lists; all homes gave me the same answer, "Oh, not yet my friend."  I cried.  I didn't want to do this care giving job any longer.  I didn't want to visit more nursing homes; I didn't have the strength.  Blood pressure rose as my patients dwindled; I was alone in my nightmare.  I had to make it stop or I was going to die before my mom.  

Few cared  or heard my cries; I was becoming seriously depressed.  It sucked.  I began to think about death every day, my death.  Death felt like it was the only way out of this hell that I had been living for the last 3 years.  

I prayed.   My mom needed a home.  She was falling every day and forgot how to walk up the stairs.  It was not safe for her or me.  I turned to the internet.

Google helped me find my mom's facility.  I began searching homes that were outside of my mom's insurance "network."  One call led to another as I asked the same questions, "Do you have any beds available?  How about short term beds?"

"Yes, as a matter of fact we are discharging someone tomorrow.  We will have a bed for your mom tomorrow.  Can you come tomorrow morning for a visit?"  My prayers were answered.

Chirping birds greeted me the next morning; my heart skipped a beat... I FOUND IT!  The facility was perfect, it had everything that I had hoped to find for my mom.  

My mom was smiling yesterday as she held her "baby," Savita the cat.

Natural Treatments and Lewy Bodies Dementia: My Opinion

My mom had been on all natural remedies to treat all of her health conditions and symptoms from Lewy Bodies Dementia; Mom had a lot of good days.

I was ridiculed; to my face and behind my back.  Folks thought I was insane because I didn't have my mom on pharmaceutical drugs.  I was accused of having Bipolar Disorder because I refused to follow the leader.  Instead, I stood tall and I became the leader.

Fighting for what I believed was right, to give my mom the best end of life that I could; I bucked the system.  It was difficult and very stressful.  Traditional doctors added to my stress.

I learned a lot about traditional medicine and natural medicine.  I witnessed and documented everything; most of it is here within the pages of my blog.

Natural medicine works better than pharmaceuticals.  My mom was ambulatory right up to the day I brought her to the nursing home; she was on all natural remedies.

2 weeks ago, my mom and I took a walk in my back yard.

She began not eating well and falling every day.  I was able to get her to take the liquid medicines from a teaspoon and the powder supplements were mixed in applesauce.  She was feeding herself once I showed her how to use the spoon.  The natural remedies kept her alert.; they allowed me to wait for a bed in a nice home to open for her.

She walked herself into the nursing home; mad as can be, struggling to run away.  I felt horrible.  I couldn't believe that I was literally dragging my mom in to the place where she was going to die.  I was exhausted.  I couldn't care for her any longer; it wasn't safe... it hurt.  I didn't cry.

There was never a happy ending to this story with my mom and me; she would die no matter how many natural remedies she took, acupuncture, special foods, Reiki and hypnosis; all methods that we used consistently to help my mom.  However, I witnessed mom having lots of good days before we reached this pinnacle of our journey.

I learned.  I am wiser.

I believe in Natural Medicine first and pharmaceutical as the last resort.  Witnessing first hand the gentle power of natures medicine cabinet.

Today, my mom is on pharmaceuticals.  She is a vegetable.  She has no idea who I am anymore.  The decline was sudden.

It is difficult to watch my mom die, no matter how much I know that death is inevitable for all of us.  It's the cycle of life. I know this truth; it doesn't make it any easier.

We are born, we grow, we live, we learn, we love and then ... we die.

.

How Did I Do It?

Mom... just before she started falling down all the time.

There is a life out there for my husband and me!

Care Giving for my mom... how did I do it?  How did I function, day in and day out with minimal sleep?  How did I clean up my mom's poo?

The anxiety that I felt every minute of every day... holy crap, HOW DID I DO IT!

How did I wake up every day, knowing that I could have to clean up a mountain of human feces before I even had a cup of coffee?

How did I answer all of my mom's questions about my dead relatives?  How did I make up stories to calm my mom when her hallucinations frightened her?

How did I do it?

How did I manage, caring for my mom when my mother-in-law was so nasty and mean toward me?

How did I care for my mom when she fought my assistance, assistance that she needed but didn't understand?

How did I do it?

How did I do all that I did by myself without much support from my family?

How did I overcome my anger and grief?

How did I do it?

I have given this question some considerable thought and the only answer I have is... LOVE.

The power of love allowed me to keep going, every day, facing one challenge after another.  Love is how I did it.  It's how all Care Giver's do what we do for the people in our care.

Love is what guided me toward placing my mom in a home.  I couldn't care for her any longer.  I needed a crew, 24 hours a day, 7 days a week.  It was hard to bring my mom to the home.  I was forced to face one of my greatest fears, putting my mom in a nursing home.

Now that the first week is behind us, every day is easier.  I am more relaxed, sleeping through the night without my heart racing from fear; fear of what I'd find when I got to my mom.  Blood pressure has normalized.  I feel terrific.

How did I do it?  Love.

Transitioning to a Nursing Home

Mom, drinking her Dunkin Donuts coffee with "Savita" on her lap

Change is never easy.  Human's enjoy routine.  Folks with Lewy Bodies Dementia or any dementia for that matter, need a sense of familiarity; it allows them to feel safe.  Feeling safe prevents wandering.

Caring for Mom became too hard; way too hard.  I felt like my head was going to explode.  Serious health issues were beginning to show symptoms in my life; I felt sick.  My blood pressure was reminesce of a children's cartoons from the 1960's where the cartoons head turned beet red after becoming upset.

I was crying way too much; it had to stop.  My tears and my emotions were negatively affecting my mom.  Exhaustion consumed me.  I had trouble pulling myself up and out of the hole like I had done so many times over the last 3 years.  My feet, stuck in the muck, unable to move; I was trapped.

My mom's illness was beginning to kill me.  A slow death that could possibly take me before my mom.  Survival.  I had to survive my mom.  Keeping her home was the cause of my troubles; mom had to go.

I prayed a lot.  Lots of my readers and friends prayed.  I needed a miracle.  I believed one would manifest and in the 11th hour, a bed opened for my mom.  Hallelujah!

The transition is hard for both my mom and me.  Letting go.  Allowing traditional medicine to take over has been tough for me.  I see that it's not working as well as the natural remedies.  My mom's new doctor at the home isn't open to the natural route.  She immediately discredited me when I suggested food as medicine.  She even told me to stop giving my mom vitamins!  Of course I won't; they have helped my mom to have better days.

My mom isn't eating at all.  She isn't talking either.  My mom's mad.  She hates being there at the hospital, but it's the best place for her.  People around all the time.  Activities all day.  New friends.  A bit overwhelming for her but she'll adjust.

The nurses at the home are super.  I like all of them very much; they are loving and gentle with my mom.

Yesterday, she participated in the activities in the dementia unit; the place she will one day have a bed.  Of all the dementia units that I've visited, this is the nicest one I've ever seen.  My mom saw the unit yesterday, she saw the nurse she had over the weekend; one she liked a lot.

I'll see her this morning.  I'll bring her a Dunkin Donuts coffee and take her for a ride outside before she goes to her new "school."

Time does make it better.  I've learned through this whole ordeal that it's harder for me to move her out of my home than it is for my mom being in a new place.  Visiting her is important; it reassures her that she's not forgotten.

The transitioning to a home is hard.  Care Givers, you do need to think of yourself or you will get sick and die before your ward.  Suck it up.  Take a deep breath and do it.  I do recommend doing your homework.  Visit places, see what you think.  Ask yourself if you could live there... if you could, you found the place.  It's a lot of work to find the right place.  Even after you find it, you will second guess yourself... I did.

I had a melt down.  I cried.  I felt so bad.  My mom was unhappy and pissed with me.  My emotions were all over the place.  Now that my mom is out of my environment, I realize that there is no way I could ever care for her again like I had been... how on Earth did I do it?

We are transitioning.  I am waiting for the day that my mom tells me that she's "too busy" to go out with me.  Everyone tells me it will happen; now I wait.