When my wife developed Alzheimer’s, the story of our marriage kept us connected (opens in new tab)

True love is something that takes work. Sure some people mesh better than others, and if you picked your mate mostly on aesthetics you may realize that having someone you like to look at is not the way to sustain a multi decade relationship. I think when it comes to a partner, you have to just decide that you are always willing to meet them where they are. Its not always where you want them to be either. The flipside of course is that your partner should feel the same way and be willing to endure your ups and downs

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 reading this has yet to fall in love or be in a long term relationship, it's all flowery and cute and lovey at first and then one day you fart for the first time in front of her. There's like, non-subjectively evident demands that you agree to impose on yourself when becoming a union. Physical. Social. Emotional.

I would not leave my wife if her mind was gone. Besides my irrational human attachment, I can't imagine putting my family, her family, our friends, through the experience of seeing her be abandoned by her life partner. Of having them experience evil unmask itself through the act of relegating her to a meat body, which we all are.

I don't know why I felt such a strong urge to express my cynicism. I don't believe in souls, I guess is part of it. I also don't like when people get hyped into expecting the universe from others. My wife loves me deeply, I feel it when she randomly puts her head on my shoulder or I catch her staring at me. She would also yell at me in embarrassment if I farted loudly next to her at the grocery store.

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.

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

I lost a loved one to dementia, and articles like this one make me want to scream.

Every experience is different. But most people think "oh, they just start getting forgetful", but as the mind decays, everything, everything, goes. Imagine your parent screaming at you in rage because they are hungry, but they've also decided that they hate every food you put in front of them, and they have refused to eat for two days. They are quite literally starving. "What do you want, I'll literally make you anything!", and they scream back "JUST BRING ME SOME FOOD!" Your life is falling apart trying to take care of them. And your parent tells you they hate you, and that you must hate them, since you aren't helping them. They can't shower, they can't brush their teeth, they can't use the bathroom without help. You start to need to take care of them like they are a baby, but babies are tiny and weak, your parent is large and while they're not "strong" anymore, they're still able to fight you in a way a baby cannot. They're in constant physical pain, but they can't describe where, and they lash out both physically and verbally.

They'll forget how to speak, or maybe they just stop trying. Then, they'll forget how to chew, and then once you move to a liquid diet, they'll eventually forget how to swallow.

Fuck this article.

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.

Irrespective of whether you think the most of the years of her being in a nursing home are a waste, the entirety of it is a touching story to me. Society has prescribed keeping her alive by tending to the extensive requirements in order for her to stay alive (such as helping her swallow and sit up and get around), and the author and his daughter are making the best of it. Reading the book and telling his story are not keeping her alive and making her suffer longer, being in the nursing home likely is. So IMO it can only help, not hurt. He isn't putting forth the argument that his love poem practice has helped her up to this day, but that it at least helped her early on in the progression of Alzheimer's, and I think it did help her early on in Alzheimer's because I think she still had capacity to experience life for some time after her diagnosis. I also think it is a good father-daughter experience, given the circumstances. I think he leaves it an open question as to whether it was helping her in the later stages of it, or if Alzheimer's is nothing but an utter shitshow at this point, so while I see how the article pours salt on wounds, I'm not going to fault the author for it.

Thanks for this. I had the same series of thoughts after reading the article, and struggled to feel more charitable about it. "Shitshow" is a kind description.

On my father's increasingly rare good days, I often think of Stanislaw Lem's "Solaris" — "I persisted in the faith that the time of cruel miracles was not past."

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…

It’s beautiful to read even as someone older who hasn’t experienced it. I’m terribly jealous.

My sympathies.

My wife of 11 years left me this year (I still don't know why). I think about the same thing... I still (probably) have time to find out what it's like to be married 30 years, but I (probably) no longer have the time to experience a 60-year marriage. And that was, honestly, the only serious goal I had for my life, so that sucks.

But, you know, once upon a time a girlfriend of 7 years left me, and I was sad that I'd have to start again. But my mom told me, and she was right, that when the next go-round happened, it's not really like starting again in many ways. Much of the maturation that happens in a relationship is actually carried within to the next relationship. So, although I still envy those who get to stay married, and those who are still married and so might yet stay married, maybe I don't need to believe that my dream is completely dead. If it's not too pretentious, maybe I can hope that I can make kintsugi of myself.

I started this message hoping to commiserate and perhaps encourage, but actually I guess I'm just wallowing. Dealing with grief is still tough, what a surprise.

Thanks for the info. However, getting a 403 on the link?

but then, you would never have had a chance to experience love. that, is, something worth experiencing, even once, even just for a moment.

Well, you only feel in the present, so he did feel things even though he may not have been who he used to be. We all are shifting and changing anyway, and our memories give us a sense of coherency, but the present is who we are most readily.

And, it can be terrifying to not know where you are or who you are for some people in those moments. So maybe he found some comfort in those moments with that one sister. That's how I think about it.

Deep love is practiced, not an accident.

I've found that when I'm honest about my feelings, even the messy ones, honest about my thoughts, even if they don't paint me in a good light, my spouse hears me and eventually, accepts me. And it makes me fall in love all over again.

It frees up my consciousness. I don't have to do the mental dance of "oh, you can say this, but don't say that. Say it this way, not that way. Don't mention this."

And I have to do my best to afford her the same.

You have the choice of either a 10 minute, awkward conversation, putting everything in on the table. But having your conscious cleared. Zero parallel threads running in the back of your mind. :)

Or keep these thoughts in the back of your head for months/years, where you expend mental energy suppressing them, sacrificing your creativity, closeness, and vitality. You'll find yourself getting mad at seemingly superficial stuff when the honest truth is because you're seething or ashamed or afraid, with so much to say.

Your choice. Choose the courageous path. Surrender the outcome.

- Learning to Speak the Microscopic Truth

https://hendricks.com/newwp/wp-content/uploads/2020/07/Micro...

- Great story from Michael Brody, SAAS entrepreneur, ex-addict

(1. Practice Rigorous Authenticity, 2. Surrender the Outcome, 3. Do the Uncomfortable Work)

https://www.ted.com/talks/michael_brody_waite_great_leaders_...

I wonder why people downvoted you. Maybe they don't agree and it is fine, but why try to silence?

It takes GUTS to be in love

It's still possible. There are plenty of religions that insist it should be the default among marriages.