Among all the major diseases that kill people, Alzheimers alone has no treatment that slows its progress, there is no cure, and in recent studies, of the top ten diseases that kill people, ONLY Alzheimers was increasing
in the number of cases diagnosed.
It is often said, and with great accuracy, one dies WITH Alzheimers or FROM it. There are no known cases of spontaneous remission that I could find, in the face of the fact that there are documented spontaneous remissions of cancer.
I can recall that as a young man, I knew what Alzheimer’s disease WAS, but didn’t think much about it, believing it was just a nuisance that happened somewhere near the end of a person’s life, that even though it might cause some confusion in the person afflicted, it was not that big a deal.
When my Mother developed the disease, I soon learned how ignorant, how naive I was. I remember when she was first diagnosed, and an MRI of her brain showed some shrinkage. I was still in some denial that it would get bad with Mom. After all, she was perhaps the most intelligent woman I knew. She was self taught, and read the writings of Saint Augustus, and other classical writers, and was a great writer in her own right.
Mom was the rock in my life, the only nexus I had to my family history, and, though I loved my Mom and respected her with all that I am, I took her for granted. She was a kind of “take charge” person who could always fix any kind of problem. People who met her liked her instantly, and it was amazing to me that people trusted her from the moment they met her. They would share secrets with her they wouldn’t tell even their closest friends. I think they sensed she was someone they could trust, and she was.
She also treated everyone equally. Back in a time when here in the South, discrimination was not only legal, but expected of white folks, my Mother was never racist, and always taught me it was the heart that mattered, not the skin color. And, she wasn’t someone who just spouted such sayings but lived differently….she lived exactly as she taught me.
The Alzheimer’s started small…forgetfulness at times, but, I think I just chalked it up to normal human frailty, something most of us are prone to suffer from time to time. But, as time went by, I saw her getting worse and worse. When I saw this, I didn’t say much, I kept my outward composure,
but inside, I felt a creeping panic set in. She began thinking her home was not her home, that my Dad wasn’t dead, and started the attempts to wander. She would be adamant about her delusions and get upset at me when I tried to correct her.
The doctor treating her, a good friend of mine, was giving her the meds that were the standard protocol, but I could see this protocol was neither curing her, nor slowing her descent into the hell called Alzheimers. We tried pretty much all the alternative therapies out there, mostly nutritional , but with her, she reacted opposite to how she SHOULD have reacted. It was also true with some of the prescription medicines she was given…instead of helping her, they made her worse.
I got great hope from reading about Tumeric, and went to great trouble to find ways to introduce this into her food. As with other things, it seemed to make her more actively belligerent, more fixated in her delusions, and increased her tendency to try to wander, and owing to the latter, I had to stop.
It was like having a loved one hanging from a rope you are holding, but, by the second, they are sliding farther down the rope, farther away from you, and there is nothing you can do. An analogy I liked was, it was like seeing your loved one start to enter a forest, and daily, they go farther into that deep forest, and, farther away from you.
I’ve seen people die in different ways, from different diseases, from trauma…cancer especially, but, the difference is that those with cancer, or other terminal illness, you can continue to communicate, you can have them understand you, you can ask how they are, and this is the difference
to me between those diseases and Alzheimers. Alzheimers quite literally kidnaps the person you have known your whole life…taking a witty, loving, caring person, and transforming them into a shell , taking away the personality that you had loved so much.
What I had failed to understand as a young man was the Alzheimers, also affects their ability to follow commands, to do simple things to do simple tasks. As it progresses, especially if they are older, they may start losing the ability to walk unassisted, they may try to get up and fall, and eventually, lose bowel and bladder control, not even knowing when they have soiled themselves.
And then, there may come the day when they ask, kindly and politely, who you are, and as their son, or daughter, this is like a punch in the stomach.
Perhaps the worst part of it is that, if you fall into a 24/7 caretaker role, and getting very little help or respite, you can get frustrated with them,
short tempered…thinking that they COULD help what they do or say, but just don’t. This is so far from the truth. They CANNOT help it any more than you could help sneezing when you get a cold.
It is these acts when you were short tempered, when you scolded them for not eating, for the delusions they engage in, that can leave permanent scars on YOUR psyche, scars that linger long after they finally pass. The blame for being short with them, being impatient, becomes a shadow on your heart, and you cannot forgive yourself.
Perhaps the worst is that I was dealing with this alone (except for my wife’s help and understanding). I’ve never been much of a joiner of groups, be they support groups or whatever. I’ve always felt you should be able to stand on your own feet, “grow a pair”, and handle your problems alone. I hated to ask for help, and thus, I kept Mom at home, taking care of him as long as I physically and mentally could. Finally, one day, I realized that she deserved better care than I was able to provide. I was being worn out…usually getting only 3 hours of sleep a night.
One thing that also loved ones develop is anger, rage, basically saying “Why me, why her…we are good people, why is this curse visited on us?”.
One answer to that question, often addressed to a supernatural entity, the answer to “Why Me?” is “Why NOT You….are you so special you should be immune to the bad luck that befalls others?”
Another bad thing is that when they get sick, as with pneumonia, and get placed on a ventilator or life support, you cannot really communicate with them to get them to try to breathe deeper, to not let their inspiratory muscles get so weak, to not let themselves get 100% dependent on the breathing machine.
If they do not pass quietly in their sleep, you find yourself beset by doctors trying to force you to “pull the plug”, and you have to ask yourself, “Am I keeping them alive for my own selfish reasons…keeping them here because they are so important in your life?”. It brings even another level of guilt on you.
Some I have talked to, felt relief when their parent with Alzheimers passed. They felt bad, felt guilty about feeling that way, but it was a reaction to the stress, physical, psychology, and other ways, that having a loved one with Alzheimers brings.
I monitored myself to see if, when Mom passed, I had felt relief, if, for no other reason, that this long ordeal was over for us both. What I found was I had NO relief that Mom passed…just the deepest, most gut wrenching sadness, sorrow, that I had ever known, a sorrow that never leaves me.
I wrote this because, if you have a loved one with progressive Alzheimers, try to avoid getting frustrated with them, impatient with them, because, I promise you, they CANNOT help it. But, just give them as much love as you possibly can. Cherish every moment, even those moments when you feel like screaming….just look into their eyes and know that , if this is your parent, they took care of you a long time, and you owe them more than you can ever repay. Try NOT to feel guilty though if you do lapse into exasperation, impatience, even anger, perhaps not at them, but at the seeming unfairness of what has befallen you.
Ultimately, I know I did everything I possibly could for her, and thus, should not blame myself for not curing a disease that the best minds working on it, have not cured, have not even developed a decent treatment to slow progression.
Imagine them back in their “right mind” saying “Thank you for being there for me Darling. Thank you for taking care of me and for understanding I could not help what happened to me, how I acted, the hallucinations, or the other things, even the time I did not know you were my son. I am proud of you for who you are.”
I sincerely hope you never have a loved one with Dementia / Alzheimers, but if you do, remember that all you can do, is do all you can….and never stop telling them you love them, hugging them, and cherishing the time you have left with them.
Thanks for reading this.