The Slippery Slope

“Dementia is a broad category of brain diseases that cause a long-term and often gradual decrease in the ability to think and remember things; such that a person’s daily functioning is affected. Other common symptoms include emotional problems, problems with language, and a decrease in motivation.   A person’s consciousness is not affected”.(Wikipedia) Coldly clinical, but it doesn’t state the devastating effects on the lives and the families of those afflicted.
My mom had dementia.  It scares the shit out of me!  I find myself getting defense every time I misplace something, forget something, or struggle to find a word.  It is even worse if someone casually compares me to my mom.  I am terrified I will develop this curse.  I know we don’t really have this in my family history at least on moms’ side; I don’t know so much about dads’ side since they all die young.  Lord! So how did we get to this place.

Mom and I had a love/hate relationship forever. She was for most of my life a domineering and negative influence. In my later life, I have come to understand her motivations a bit better but at the time, whew!   She had a hard life, I will grant. So have others and they don’t have the “why, Me?” attitude but that was her.   Yes, she had bad crap happen! She developed polio at a very young age.  She had it all on her left side. Her parents took her to a home for crippled children for treatment.    As best as I can figure out, she was about 3 years old.   Previous treatment for polio consisted of immobilization of muscles, often by strapping the afflicted person onto a board for months at a time. However, Mom was treated by Sister Kenny in a new and controversial method. She often told me that she remembers being wrapped in steaming hot, wool cloths that itched horribly and had intensive exercise routines. This method was developed by a nurse from Australia. Sister Kenny   Mom said that she was “dropped off” there by her parents, who only visited once a month.   She said that she was there for about three years with other children having the same problems.   This has been an reoccurring theme in her life–the feeling of abandonment.   It probably was the root cause of her need for control throughout her life.   She was treated by Sister Kenny and Jonas Salk and eventually made progress.

However, with polio being what it is–destroyer of cells–she had one leg that grew normally and her afflicted leg that did not. Over the course of many years in her childhood, she had many operations on her legs to basically force a more equal growth. I wish I knew more about the details but I know she had surgery on both her legs–her right leg to stunt its growth a bit and her left to support the muscles and bones. Her left foot was twisted so the doctors fused the bones in that foot to allow it to have strength to support walking. She used high-top, heavy leather shoes and braces on her legs until she reached a point that she could to walk unsupported. She always had a limp of sorts but she never let her stop her. I admired that!   I remember her saying her whole life that all she wanted  was to have a pair a pretty red shoes like other girls could.  I wish we could have found a way to make that happen.

Because Polio is an environmental disease, her parents were encouraged to move to the country.  They had lived in the city before that but moved to what, Mom said, was a three room shack.  There were four sisters, with mom being the oldest. They all slept in the same room. They gardened for food and lived VERY cheaply.   She remembers having to help her father build walls on the house and shovel coal for heat. She must not have had a lot of food regularly because she was a food hoarder.  Her cupboards were ALWAYS full (overfull). I have seen that her sisters do the same thing.   I feel this is one of the reasons for her diabetes later in life.  We’ll come back to that.

In her teens, other problems in the family occurred. I don’t know everything because she was private about a lot but I know it was one of the reasons mom left home so young. She just picked up after graduating high school and moved to Florida.

In Florida, she worked and lived behind her cousin’s house in a little studio apartment. She was about 21 when she met my father. He was a sailor and had been married before. I’m sure she would have made a different choice if she could go back in time. They dated and got married. When she became pregnant with me, my dad dragged her up to his home town to live. That’s were I was born. After my birth, they moved back down to Florida. I am not sure why, but it would have been great if they had just stayed in Florida.  Anyway, mom gets pregnant with brother number one and we all get dragged back to his hometown again. He must have just wanted us all to be born there is all I can figure. This time we stayed.  Dad worked at a fiberglass boat company and mom got nurses aide training and worked at the local hospital.

We must have had financial issues because I remember moving a lot. Mom told me later that dad gambled away most of his checks.  He would give her money for the household budget but kept the rest for himself. If that had been the only thing it might have been better but he cheated on her too. I really don’t know why she stayed with him. Maybe it had to do with her childhood abandonment issues and the breaking up of her own family.   I wish she would have just left but …spilled milk. Over the course of their 24 years of marriage she became quite a large woman. She was quite domineering (probably had to) and God help if you disagreed with her. I will say she had a lot to put up with but she chose to stay.

Dad died in a car accident with two other men as they were driving to work.  There were many factors, none of which were his fault, for the accident. They were hit by an unregistered oil truck driven by a man whose license was expired. The road had had many complaints due to how it was banked. It was all very sad and unnecessary. Three families were torn apart. There was, of course, a law suit which was settled. The money was split between the three wives and it left my mom enough to set up for her retirement. She was only 45 when this happened and had enough health issues to know she needed to plan ahead.  Smart!  I have to say, even though it may be cruel sounding, that it was the best thing dad ever did for her.

So how did we end up here–dementia. She worked in the hospital doing nursing work, office work and then accounts payable.  In her late 50s, she started having problems with numbers. I remember her being so mad and feeling like her bosses had it out for her.   I thought, then, the guy must have just thought she was old and figured a real accountant would be better but maybe, in hindsight, they were seeing the start of real problems.

Now, mom was stubborn. She did not take care of herself and was at her heaviest about 250 pounds. She ate all kinds of junk food and never watched how much sugar she ate. She would hide food or claim that it was in the house for the kids to eat when they came to visit. Twenty years of that! Hence, diabetes. Now, I started noticing her having trouble remembering things. She would ask me the same question over and over. She put things in weird places and would forget where she was going.  I saw this stuff but my brothers just thought it was normal aging.  She had to have a hip replacement in 2008. Osteoarthritis and the bone rubbing on bone in her right hip were so painful for her.   She had the surgery and suddenly things became really clear to all of us.   Sundowner’s! Sundown Syndrome   Every evening, after the surgery, the nurses would call me to say she was out of control.   People were finally seeing what I had been noticing for a while. She, eventually, got back to a slightly diminished normal but it took about a month and a half. We had already moved her to a senior apartment and she went back there. At this point I had a job offer to move to AZ. We decided to move and my brother was left to watch over her.

I had been here for about six months when I got the panicked call–Mom almost burned her apartment down—we needed to do something. Her friends had been telling me that she needed more help and was really becoming dangerously forgetful.  However, she was very defensive and stubborn. After that incident though, we moved her down here, kicking and screaming. Her medical problems and drug needs outweighed her ability to cover it up.  So during the years 2012 to 2015 her slide into dementia progressed so fast. Open-heart surgery and left hip surgery didn’t help and caused even more confusion. Finally, she was diagnosed with vascular dementia–secondary to her unregulated diabetes and post polio syndrome. Aging post polio  I didn’t know a lot about that but it makes sense now. Her cells were already compromised from the polio on her left side but she learned to compensate without even thinking about it. Although, thinking back,  she did tell me she hadn’t been a great student.  However, the aging progress and her diabetes really deteriorated what function she had.  She told me many times that she never wanted to live in a home and “lose her mind” but there we were. She lived in constant confusion, different places and times, but at least she wasn’t angry at us anymore toward the end. She couldn’t remember what it was like before.

There are only a couple states that either have death with dignity laws or are thinking about them. I know I am going to be thinking ahead–with fear. I have seen what this awful disease has done to mom and her family. I don’t want that for my family and I live in abject terror that my future is before my eyes. So yes, I do get upset and a bit defensive when I get teased by my husband and the kids about my (quite normal) forgetfulness at times. I hope they understand because we all lived with the reality in my mom. Granted, I don’t have her triggers (polio and diabetes) and we don’t have any Alzheimer’s in our family that I know of, but it still scares the shit out of me. I told him that if I get like that, unless laws are enacted in AZ….yeah, right….he is to take me out to the desert without water and just let me wander around till I fall asleep. Harsh, maybe, but we don’t have many options that wouldn’t put family members in jail. We need to find the compassion to allow dignified death in this country.

Lost
I don’t know really, because
I’m really
Lost.

It scares me to hell
I don’t know what to do—
I’m scared

It was so disgusting—I just sat there, doing
Nothing
I thought I was
In an asylum I was
Ashamed that I
Sit there

These people were people who, well they are
Old age pensioners. They made me an
Old
Age
Pensioner. I was
Really annoyed—terrible isn’t it
There’s nothing wrong with me—
I just don’t do
Anything.

I feel
Lost—that’s all I can say, because
I’ve never felt
Lost—this is
Just hell
So you now have the whole thing.
I can’t say it myself.
The saddest thing.

Contact me at:  taketimetolivelife@outlook.com