posted on Jul, 6 2015 @ 03:08 PM
Rather personal rant. Perhaps not the best forum but who gives a crap. This is part venting part educational. Anyhow, this disease is brutal. I had no
idea. I always thought it was just a slow process where the person loses their memory, like a "part of being old" or in a manner that's rather
gentle over time. I was wrong.
My mother was diagnosed 2 years ago. Today she can't speak, feed herself, use the restroom, recognize anyone or basically function as a human being.
In need of 24/7 care. I'm 35 years old, she's 62. One day we were living "normal" lives then all of the sudden this...
The last few weeks she lost the ability to communicate and no longer recognizes me. I've been there for her throughout this process but it's
becoming...heavy. The decline was rapid. It's literally like watching someone die in front of you, with nothing you can do about it. Minimal
treatments, no cure, no nothing but progressively worsening conditions.
We moved her into a nice "memory care" facility, many people can't afford this so I should be grateful for that but it doesn't change her
circumstances- it makes it easier on me and my father but even that opens up feelings of guilt, like we're passing off responsibility to other
people. Strangers. That's my own issue. Whatever.
Anyhow, the disease itself is, in my opinion, worse than cancer, worse than AIDS, worse than diabetes and or most of the diseases/afflictions that
kill millions of people. It's not a "gentle" process. Dying from Alzhiemer's. It's fatal 100% of the time. The body shuts down, along with the
mind. They end up being living skeletons, in bed, moaning in pain, or as some strange fading function of the mind. Shells of human beings. I see this
in the more advanced patients at the care facility. The last stage of Alzhiemers.
The pathway to that death is full of worsening issues. Starting off with slipping cognitive abilities in the early stage. Simple math problems might
be confusing. Reading a clock, writing down a grocery list etc. Then behavioral changes set in. Their personality changes, subtlety at first. Then
paranoia sets in. Hallucinations. Many times very frightening hallucinations. Anxiety. Insomnia. "Roaming", prolonged inability to understand the
changing world around them. I would imagine it's like being on a bad '___' trip. One that doesn't go away. They prescribe antipsychotic medication
for Alzheimer's patients. It helps a little bit.
In the mid stage everyone began to abandon her. Her "friends". Her long time co-workers. Her church group. Even my siblings. It's odd. I guess
people don't know what to do or how to react. She had cancer years ago and had a non stop stream of visitors. People bringing meals and cards and
balloons. Phone calls from out of country relatives on a routine basis. None of that has been taking place with her advancing Alzhiemers. It's like
the person ceaces to exist. The way most people treat mental illness is baffling. I don't think this is uncommon. I've had friends laugh at her
condition. Make jokes. One person literally pointed and laughed when she was eating with her hands at a restaurant. You eventually can't even go into
most public spaces or situations because of the way people treat them. The looks, the whispers, the laughing and finger pointing. There's no
dignity. None. Someone with stage 4 cancer would never be treated this way.
Before we moved her into a care facility I had to move into my mother/fathers house. She couldn't be left alone. I had to "child proof" the oven,
the electrical outlets, had to put double sided locks on all the doors. She'd get up at 3am and leave the house. Wondering the street banging on
people's doors and windows. One time completly nude. The police picked her up- that's when I moved in with them. Months later we made the move to a
care facility. I couldn't do it. Change her diapers, bath her, feed her, constantly attempt to console her when the paranoia and agitation set in. I
also had to work. The lack of sleep...the emotional toll is hard to explain. I suppose it may help if one is "comfortable" with death, but even then
the decline is heartbreaking and life consuming for caregivers.
I feel for family/caregivers who don't have the money for memory care facilities. Alzhiemer's is brutal, not only for the person suffering from the
disease but also for family or primary caregivers at home. It completely consumes your life. You grieve the loss of your loved one as you watch them
fade. It just gets worse and worse but there are moments of joy/happiness. Odd moments where a lucid thought comes through, or a few hours of calm.
Quiet. Almost normalcy. Think of "babysitting" a frightened child that never sleeps. Maybe it's like that. Worse when the person loses interest in
everything. No gardening, no watching TV, no reading...just, for lack of a better term, madness. Many people with advancing Alzhiemers literally go
insaine. It's different for different people though.
Part of my point is, we, as a nation, need to throw a lot more time, money and human resources at Alzhiemer's treatment, care and awareness. Millions
of people are going to suffer from this. Even more when we consider family members and caregivers. My own initial misunderstanding may be common. How
I previously viewed the disease. I didn't really think about it much. I now know its probably the worse way one can die. Emotionally,
financially...the whole ball of wax is grossly misunderstood or "unappreciated ". I don't think I've even done a good job of explaining the
intricate details. One has to experience it first hand I suppose.
There are millions of people who need help. People not as "fortunate" as my family (we can afford a good care facility). My heart goes out to these
families. They need our help. We've been abandoning millions of people. With millions more to come in the future. This should change, but probably
won't. Donating to reputable Alzhiemers organizations may help. Reading about the disease may help. Visiting family or friends who suffer from
Alzhiemer's WILL help. Being there for people. It takes effort. Funding for families suffering from Alzhiemer's is needed. Funding for care
facilities or in home caregivers. More research (R&D) is needed. There always seems to be a promising "cure" just around the corner that never
materializes. I think we're generally "dropping the ball" as a nation when it comes to Alzhiemer's. Even many care facilities approach
"treatment" in wrong ways. That's a whole other issue. It doesn't just impact people in their 80's/90's. It's not a "graceful death".
There's not much help at all unless one has a lot of money or top of the line health insurance. There are families/cargivers out there right now that
need our help. Not just the Alzhiemer's patient themselves.
It's not being handled properly. Generally speaking. We can an should do better as a nation. Despite your political views. If you know anyone
suffering from Alzhiemer's please help them and their family. In any way you can. No matter how small. It doesn't have to be money. Just be there.