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When my wife developed Alzheimer’s, the story of our marriage kept us connected

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Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#41

Post by baskethead »

It's a lovely story, but quite honestly, Alzheimer's/dementia is a shitshow. I wouldn't wish it on my worst enemy and there are many people I despise. There is nothing crueler than dementia.

My mom is suffering through dementia right now. We did something similar. We made photo albums, and went through them every day, until my mom stopped responding to them. Within a couple of years, she forgot who we were, or she would mix up my sister for her sister.

After 7 years from her diagnosis, she no longer talks and she no longer responds to me. My sister is taking full time care of her, and she is cleaning her several times a day because she's incontinent. My mom recently has stopped swallowing. She also seems to have contracted a mild case of COVID, and my sister has been self-flagellating herself because she felt guilty about it. I of course told my sister there's no reason to feel guilty, everyone is getting it and it's something everyone will deal with, especially my mom. I secretly wish it would take my mom's life to end her misery.

The worst part in the first few years were her lucid moments. During one of those moments she wrote a letter to God, asking to die, because she knew something was wrong but she didn't know what. We found the letter hidden in her dresser. Every time I think about it, I burst out in tears, even now. It's disgustingly cruel for someone who spend her entire life sacrificing her life for her kids and family, and asking nothing else.

So when articles like this come out, it is extremely difficult to contain my contempt at any stories that don't paint the picture exactly how it is: a complete and utter shitshow. It's unfair for the victim and it's unfair for the caretakers. And it's extremely expensive and almost impossible to keep your loved one living in a modicum of dignity.

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#42

Post by arcticfox »

dijonman2 wrote: post #37
pomian wrote: post #30

Earlier quoted context omitted.

I do not believe it is rare. I think that it is the same with bad news and tragedy, the news reports only those. Behind all the sad stories, the frustrated stories, and everything else that is loud, there is a quiet passion that supports the world. It quietly goes on, without disturbing the neighbors, or making headlines. It's not easy, it's not painful, but it perseveres. All around you. In the background.

I have heard about a man who remained unmarried his whole life, and when he was dying, ninety years old, somebody asked him, “You have remained unmarried your whole life, but you have never said what the reason was. Now you are dying, at least quench our curiosity. If there is any secret, now you can tell it, because you are dying; you will be gone. Even if the secret is known, it can’t harm you.” The man said, “Yes,…

Osho is just relating a fable here, but I love that guy's way with words. No surprise that his cult community (Rajneeshpuram) was a massive (albeit short-lived) success in my home state, he's just so fascinating to listen to. If anyone is curious, there are a lot of videos of him on Youtube.

From Wiki:

> Ultimately though, as an explicitly "self-parodying" guru, Rajneesh even deconstructed his own authority, declaring his teaching to be nothing more than a "game" or a joke.

Perhaps that's why, as an atheist, I find him so fascinating - he covers a lot of genuinely useful and interesting ground (meditation, philosophy) while never seeming to take it too seriously.

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#43

Post by Baeocystin »

baskethead wrote: post #41

It's a lovely story, but quite honestly, Alzheimer's/dementia is a shitshow. I wouldn't wish it on my worst enemy and there are many people I despise. There is nothing crueler than dementia. My mom is suffering through dementia right now. We did something similar. We made photo albums, and went through them every day, until my mom stopped responding to them. Within a couple of years, she forgot who we were, or she wo…

My mother went through the same, and my feelings echo your own.

There is absolutely nothing good about losing a loved one to dementia. It is constant pain, for years.

I still remember the first time my Mom flinched in fear as I went to give her a hug, as she didn't recognize me. Her greatest fear was losing her mind, and it happened, and there was nothing any of us could do about it. It was a mercy when her body passed, as everything she was had died, inch by inevitable inch, years before. It was cruel, horrible, everything.

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#44

Post by spoonjim »

srvmshr wrote: post #5

> It’s hard to accept the possibility that Judy may have completely forgotten about me, but a lifetime of living with disability has shown me how delicate human bodies and minds can be, how little it can take to dramatically, traumatically alter—or end—lives. Two rogue bones in my neck. Plaque on my beloved’s brain. Great love stories begin with such heady promise and end with such sadness and grief—but, at least in…

True love exists, but it’s something that’s made, not found.

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#45

Post by supperburg »

baskethead wrote: post #41

It's a lovely story, but quite honestly, Alzheimer's/dementia is a shitshow. I wouldn't wish it on my worst enemy and there are many people I despise. There is nothing crueler than dementia. My mom is suffering through dementia right now. We did something similar. We made photo albums, and went through them every day, until my mom stopped responding to them. Within a couple of years, she forgot who we were, or she wo…

Your contempt is absolutely justified. I went through something similar myself. These people, who have absolutely no voice, are the victims of the virtue signaling, moral crusading army of idiots who are very happy to tell people like us that it’s wrong to want to die or to help someone to die. They sell today for tomorrow. They trade in the suffering of thousands so that they don’t have to confront reality or say something unbecoming. It’s truly infuriating because this results in real and profound suffering. When someone is in need of death, and is writing letters to god for a merciful death, what societal/cultural mechanisms are there to fall on? None! It’s a fucking disgrace and a stain on the human race that such conditions are allowed to go on. Truly on a stain on us.

It just boggles my mind that the moral crusaders scream endlessly about ending the suffering of these people or those people… and yet they do nothing to end the suffering of millions who are right in their back yard and who’s suffering can be ended relatively quickly and easily through very simple legislation, awareness and education. It’s the lowest hanging fruit and yet it goes unpicked.

And there is a large skilled nursing industry that is very happy to profit from it all…

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#46

Post by [deleted] »

sam0x17 wrote: post #23
SketchySeaBeast wrote: post #20

Earlier quoted context omitted.

"Long term commitment" isn't a luxury though, it's dedicated effort on the part of both spouses.

OP's economic argument is pretty sound. 40-50 years ago you could buy a new house, get a solid blue collar job with a pension, and watch your house 5x in value over the next 50 years. Makes it very, very easy to settle down with someone and start a family. In today's economy, even for the relatively well-off, home ownership is essentially a pipe-dream and it is much harder to put down roots of any kind. The second th…

[deleted]

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#48

Post by nefitty »

srvmshr wrote: post #34
nefitty wrote: post #31

Earlier quoted context omitted.

I love my wife a lot. She's like my shadow, evidence that the sun is in the sky. If she got really sick I would stay with her and care for her. A huge chunk of that is because I'm attached to her, the little human pattern that the universe mumbles out. The other mind that looks at me and convinces me I actually exist. I personally think it's irresponsible to set up these weird transcendental expectations. If anyone r…

Very well put. My remark about 'true love' was this exact cynicism. And like you, I mirror the exact same feelings for my wife. The Mills & Boone type of romances do not exist in real life. Deep love is crafted incrementally each day of being together, like an old oak tree sinking its roots ever deeper. It is perhaps the gravitas and wordsmanship which makes the author's story remarkable. It exposed us to his thought…

Yes for sure. I hope I did not diminish those experiences. It is really awesome to be in love. I understand its sway.

I appreciate how we almost reflexively communicate about those emotions in bits of poetry. They splay out in so many directions, it's like we're picking fruits from an orchard and showing each other what we discover. It's really nice to get to be in the orchard.

Re: When my wife developed Alzheimer’s, the story of our marriage kept us connected

#50

Post by diskzero »

nefitty wrote: post #31
srvmshr wrote: post #5

> It’s hard to accept the possibility that Judy may have completely forgotten about me, but a lifetime of living with disability has shown me how delicate human bodies and minds can be, how little it can take to dramatically, traumatically alter—or end—lives. Two rogue bones in my neck. Plaque on my beloved’s brain. Great love stories begin with such heady promise and end with such sadness and grief—but, at least in…

I love my wife a lot. She's like my shadow, evidence that the sun is in the sky. If she got really sick I would stay with her and care for her. A huge chunk of that is because I'm attached to her, the little human pattern that the universe mumbles out. The other mind that looks at me and convinces me I actually exist. I personally think it's irresponsible to set up these weird transcendental expectations. If anyone r…

My wife was diagnosed with lymphoma and brain cancer last December and passed this October. I watched her weaken, spring back when a therapy worked, descend into near death when a therapy failed and eventually see her mind and body destroyed by cancer. I hated the illness, the workload, the stress and then unending anxiety of knowing there was little chance of a recovery.

I never thought of leaving or not caring for her, just as I am sure she would have never left me if I was in the same situation. Was this because of a deep love, a result of thirty years spent building a life and habits together, civic and marital duty or some combination of all of these? The thought of not caring for someone in her situation so close to me is anathema.

Concerning diseases that reduce ones mental acuity; every time she would lose the ability to speak or understand, it was crushing. She would often regain some functionality, but each time something was lost. In her final days, she would sometimes regain consciousness and speak to me, but couldn't understand what she was saying. This is/was one of the most distressing things for me to experience. I often sit and wonder what it was she wanted to tell me and how I will never know.

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