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Gone through this a couple times with family unfortunately. To be honest the prolonged degradation of these diseases twisting your loved one into a mockery of their former selves makes their actual death come almost as a relief. With Alzheimer's, pretend the victim's normal personality and mindset is like a radio station one is driving away from.
At first, it's all fine. Then there are occasional static bursts in the signal, small things you can dismiss as a fluke. She'd forget what year it was or not recognize an old friend. Then bursts of static interrupting the song you know and love. She started occasionally calling me the name of her cousin who was killed during D-Day.
You realize that this is really happening, and the signal is failing. She put dirty dishes in the microwave to clean them. The further out, the more static and less signal. She tried to plug an electrical cord into a water faucet. Eventually it's almost all static and you just hear some pieces of the song coming through. She could not remember her husband's existence and would repeat the same words over and over in a loop.
Then just a roar of static with an occasional pop that might be caused by the original song. She recognized almost no one and was near comatose, just had a vague sense we were connected and called us all by the names of the dead. It's like a perverse ship of Theseus where at some point so much has rotted away that the person you knew is gone. She would lay silent, glassy eyed and drooling for hours.
My other close relative who died from it had a quicker progression, but it made him act out of character in a very aggressive and violent manner to the point he had to be institutionalized because he kept trying to kill my aunt and caretakers. It can degrade people unevenly; his body stayed strong for a long time after his mind was destroyed, while the first person I described lost both simultaneously.
Somebody dropping dead of a heart attack is something you deal with the sharp pain of, but the mind can switch to categorizing them as gone, it doesn't consume the lives of multiple relatives taking care of them, and memories of the dead aren't tainted by a cruel decline. With these degenerative diseases attacking the mind, it's like your loved one becomes an animate corpse with just enough scattered fragments of their old self resurfacing to torment everyone around them but not enough to comfort them or bring the victim happiness. The death process takes ages and drags out everyone's pain. When they finally die, there is grief but also relief that their suffering is over.
With cancer, usually their mind is intact but they get twisted into a miserable, pessimistic version of themselves from all the pain and drugs for a couple years until giving up. Opioids help greatly with pain but make them zombie-like. I am not a doctor, but from what I observed marijuana edibles and tinctures are very helpful for mitigating low-medium level pain and delaying when the cancer patient has to start taking opioids. It made the difference between them being unable to sleep well due to itching sensations from the cancer and reducing that enough to sleep through the night.
If diagnosed with Alzheimer's, dementia or an incurable cancer I would strongly recommend writing up some memoirs, recording tapes for your family and friends then committing suicide.
If someone you know is in the early stages of Alzheimer's or dementia, I'd recommend surreptitiously recording your conversations with them and asking them a lot of autobiographical questions. How they met their spouse, their favorite songs, their first job, travels, funny stories, etc. The audio will be of great comfort to you and other relatives later. People remember to take pictures but almost always forget to preserve someone's voice. Also, with degenerative brain diseases IME older memories endure the longest, and you can have almost lucid conversations with them pretty far along by sticking to topics from decades ago. Playing their favorite songs also tends to bring their mind back together for a little bit.
I appreciate you writing this. My grandfather is rotting away due to Alzheimers - the last time I saw him was three years ago, after which his health rarely allowed visitors and flying down to see him was nearly impossible plan due to personal health issues. When I was a little boy, he was the strongest man I knew. I love my grandmother as well, but going down to see him was a special joy.
I never knew my father, but my grandfather would toss me up in his arms and get me to feel his sweat 'any sweat?' and then whiskers 'any whiskers?'. He'd always be in from a hard day's work (after retiring he renovated houses and repaired cars until his health no longer allowed it, after which he went from a joyful strong man to perpetually grouchy and frustrated) and there'd always be sweat on his brow. Whiskers sometimes. He'd laugh and he'd put me down and make me lemon cordial with milk, a combination I've never seen anyone else like. You had to drink it quick to stop it curdling, and I'd always have my own milk whiskers afterwards.
All throughout my life he was taciturn and showed his love physically or by building or fixing something. He fixed cars of mine a few times when I couldn't afford a mechanic, and loaned me his ute when my car broke down and I couldn't afford a new one for some months. But he had a biting sense of wit as well, and loved to tease. I once found a giant novelty wooden spoon at a car boot sale, and painstakingly carved the words 'biggest shit-stirrer' into it for a Christmas present. He laughed at the time - but later I found out he hated it and felt put on the spot, only keeping it because he appreciated a gift from his grandson more than his own pride.
Now the only thing he can remember about me is that I owe him fifty dollars. It makes him apoplectic with rage that I haven't paid him back for the money, and if I were to go visit him in hospice all I could bring what remains of him is grief and rage. I'm his favorite grandson (I was given his name which I think gave me an unfair head start) and now all I do is ring my grandmother once a week and hear about how he's degrading, how another little piece of him is being taken away. How his legs and fingers are rotting and he only recognises my grandmother sometimes.
Nobody in my family has ever died since I was four years old and too young to remember it, but every time I think of him I hope it comes soon.
I tried to sit down with him and record something when I last saw him, but he hated the notion of his life being recorded, as his own father was an undisputed monster and I think he wants the man to go unlamented and unremembered. I thought foolishly I had time to convince him, time to sit down and talk and record and write so I'd get some record of his life and the man he was.
I didn't, and there's not enough of him left to piece it together.
Thank you for writing this. I'm going to find a time later this year, take a week off work, sit down with my grandmother and record whatever she'll give me.
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I appreciate your writing this post.
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