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...

Raising Mom

Who knew that I'd end up parenting my mother, as I usher her toward her death day?

It's no secret.  I have NEVER wanted children.  The thought of wiping poop off another human's behind was never on my "bucket list."  I was a new teenager of 13 when my first nephew was born; he showed me that having a baby is way over rated.  Way too much poo and pewk!  Definitely not for me; I chose to have a career.

Thank you Joe and Drew (my 2nd nephew, born when I was 15.)

Instead of children, I befriended seniors.  Somehow I always managed to have one in my life; I always welcomed aging friends.  Looking back, seniors were the few people who seemed to accept me for who I am... they filled my cup with approval. 

First there was Walter, then Aggie and Tommy; folks who I believe prepared me to be Care Giver for my mother with Lewy Bodies Dementia.

Countless co-workers along my journey of life, warned me about the burden of caring for an aging parent.  I will never forget my friend Mary Lou's reaction when I told her in 1998 that I was buying a house; one big enough for me to move my mom in with me... "Sue!?  Are you out of your mind?!"

Yes Lu, I am.

Blinded by my desire for approval, I willingly entered into what would later become my personal Twilight Zone; raising Mom.

Here I am, 50 something and I have a baby that weighs 140 pounds; too heavy to lift.  Poop happens daily.  It's gross.  I'm sick.  My throat is always sore; my gag reflexes are definitely working.  Life has become more difficult for us, especially me.

My mom is fading like the tulips.  Once, magnificent and beautiful, the tulips and my mom are withering back into the Earth. 

"Where's my brother?"  My mom pleads with me for an answer. 

Diapers and drool fill my life.  Loss of balance and falls frighten me.  In abilities, new ones showing themselves daily.  Blank stares at her oatmeal bowl and spoon; no understanding of how to operate the spoon in order to feed herself. 

"Here Ma, open up... yup, that's it.  Open your mouth and try this..."  Every day I have to coach my mom, remind her how to eat.  Once I get her started she can do it herself.

Every day I have no idea what will greet me.  Will it be a trail of poo smeared into the carpet?  My mom laying on the floor?  Will she remember how to get out of bed?  Will she be alive?

Raising Mom is sad.  She can't learn, she forgets.  Every day, she requires more when my emotional and physical well of life is running on empty.   Yesterday, she forgot how to walk up the stairs at the top with only one more stair to climb.  Instead, she pushed backward... nearly sending both of us topling down the stairs.

"Ma!  You have just one more step... step up!  Just one more.... please, I am losing my grip and we will both fall.  Please!  Just take one more step up."  I pleaded with her yesterday when she got home from the day program.

Out of breath, holding on for my own life; I found the strength to lift my mom up the last step.  It was frightening for me.

My mom NEEDS a bed to open sooner than later.  I call every week, checking and reminding the admissions people that we are anxiously waiting.  I am gracious when I call, even though my mind is spinning with questions that could help give me an indication as to how much longer we need to wait.

I bite my tongue, wanting to ask... "So, is there anyone dying?  How far along in hospice are they?  Any ETD's (estimated time of death) that you can share with me?"

Raising Mom is no fun.  I need help, not just the day program help but help on the weekends.  Weekends are the hardest for me.  My mother gets bored.  She requires 24 hour care, care that is overwhelming.   Loss of balance, chasing hallucinations and pulling her pants down wherever she stands when she needs to use the toilet. 

My mother fights me. "No!  The bathroom isn't there... hurry!  Come on."  My mom will scream at me when I try to escort her to her toilet.  She plants her feet and pushes back, refusing to move forward and demanding to use the toilet that she believes exists.

It is stressful.  My mission in life is to get my mom's waste to land in the toilet.  Wiping her ass is the least of my worries these days.  I never wanted children and now, I don't think I want a mother anymore either!

My mom is having difficulty at the day program.  Sent home early on Monday because she was wandering and difficult.  I needed Monday to chill out because the weekends are extremely difficult with caring for mom.  My mom can't handle going to the supermarket with me anymore.  It's too much stimulation and it sends her into weird states of being.

Raising Mom is challenging and heart wrenching.  I can't help but feel alone in this nightmare... because I am. Watching my mother die a slow and confusing death, I wish for good health for myself or to die before I get an illness that scares people away.

The Man... He's Gone for NOW!

The Man, the scary man that began disappearing yesterday, is now completely gone.

I asked my mom this morning, "So Ma, did you see the man last night?"

"No!  I didn't even see any dead relatives."  As she let out a laugh that would make the saddest person turn a frown upside down.

My mom appears to be having a good day, even after her fall last night.

Her muscles are a little sore in her duppa, but for the most part she's fine.  Nothing a little Arnica homeopathy won't fix.

Today is a GREAT DAY!

Last night we all got a great nights sleep. It was awesome sleeping with the windows open a little and having the fresh night air fill the room.

5am the cat came into our room and took a leap to run up my body. Savita is my little alarm to let me know that my mom is out of bed or having a problem. Every time, like a little alarm that was triggered, the cat comes to get me.

I went downstairs and my mom had woken up but wasn't out of bed. I asked her how she was this morning and she said "Great! I feel so good today. I love sleeping in the morning." I took the opportunity and told her to roll over and sleep on her left side. Years ago I had learned from a nurse that if you lay on your left side, it gets your intestines in the right position so that it's easier for your stool to move. She needs a good movement today.

Mom rolled over on her left side with her head nestled in her pillow and a smile on her face. I rubbed her head like she used to do to me and her mother used to do to her. She drifted off to sleep in seconds.

I went back to sleep too. It really felt good to sleep and feel peace.

8am, Cat alarm... Savita made her flying leap on the bed and landed on my legs. Last vet visit she weighed 11.5 lbs. It hurst when she lands. No claws are out, it's just sheer body weight. She's learned the higher she jumps the harder she lands. Of course she doesn't try this trick on Brian, just me. It's almost like she's getting back at me for all those times I rub her belly with my hand, she hates hands.

I got up as I remembered to say the phrase outloud, "Today will be a GREAT DAY!" I declared a great day for myself today. Saying this phrase outloud works as you get out of bed in the morning. Enthusiasm and strong emotion puts power behind the words. I always have a great day when I start it with a grand declaration as this phrase embodies.

My mom was half awake. The squeeky stairs woke her as I walked down them. She felt really good. Her blood pressure was 143/63 - a very good reading for her. Her blood sugar was 104, higher than usual but it's probably because she forgot to brush her teeth last night.

I had coffee with my mom this morning as she took her little dish of supplements. She was excited to tell me that she remembered a dream. That the dream woke her but she realized that it was just a dream.

She told me that she dreampt that the UPS guy came with a package. She described other sounds and things that were going on. At one point she heard someone shoveling snow... then she said to herself, "snow? this must be a dream." She did eventually get up and see if there was a package at the door and snow on the ground. When there wasn't a package or snow, she was became pleased with herself for being able to distinguish between a dream and reality. She tucked herself back in and went back to sleep.

Brian and I are noticing a pattern with my mom. She has 1 good day after a solid night sleep and then the next 2 nights she sleeps less and wakes up frightened by hallucinations. I read that eggplant and tomatoes can cause a problem for folks with Lewy Bodies. The days my mom eats eggplant or tomatoes, she doesn't seem to sleep. No more eggplant and tomatoes for my mom, not until I can see if these foods are the triggers for her sleepless nights.

I can't find the article that I had read that discusses the deadly nightshade family of plants and how the active ingredient in the plants fruit is bad for people with Lewy Bodies. However, I did find a Psychiatrist MD with Lewy Bodies writing about the disease from a personal perspective. I am thrilled to have found his blog.

Mom is a light sleeper. She lives on the basement level of our home currently, where you can hear all the house sounds. Today, we are moving her upstairs and giving her our Master Suite. It's more remenesce of her bedroom set up in the house I had owned in Groveland.

Brian and I will take over the downstairs. We will have the entire floor to ourselves. I won't need to walk by my mother in law every time I want to go outside or out for a drive. Maybe it's my own paranoia but I always felt like I was under her watchful eye.

I love my mother in law, we've become closer because of my mom's condition. I was frightened of my ML for so long, she scared the snot out of me. She has a mean streak that you don't want to cross. I crossed her when I married her son and moved my mom, our cat and myself into Brian's house. I got the impression that she viewed me as a jesabell or something.

Remembering my dad's wise words, "Susie, wait a minute, things will change", I waited. I was as patient as I could be. I changed my mind. I changed how I approached her. I replaced my fear with love.

I'm a pretty good cook, although my husband calls me a gourmet chef. I began cooking my heart out, making everything fresh and from scratch. My mother in law never tasted food so good and just last night she told me that my cooking is better than the finest restaurant. She's so sweet, especially when she likes you.

My Mother in Law watches me still, all day. Only now she watches me care for my mom. She sees that I'm doing everything possible to help our little Jo, Rachel's only friend. Rachel loves my mom and was upset when she heard the news about my mom's dementia. Rachel wants my mom to continue living here with us, she would worry about her in a home, like I would.

Moving my mom upstairs, Rachel and Jo will share the main floor of the house. We feel it will help my mom a lot and Rachel too. They both need to socialize and neither of them are very social, they never have been.

Side note: If you are young, make sure you keep friends and socialize, they will be very important people when you are all old together. Maybe one of them will help you find your lost mind when you need it the most.

Anyway, today IS a GREAT DAY. No more tomatoes, eggplant, potatoes and peppers for my mom.