7 ms·

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

401 points by rmbryan 5y ago

smoyer 5y ago
For those of you who are younger and perhaps haven't experienced it, forget the movie version of true love. This story is a much better example - it's imperfect, illogical, sometimes downright gritty and yet it persists (with bouquets of flowers spread throughout).
- kgin 5y ago
  It’s beautiful to read even as someone older who hasn’t experienced it. I’m terribly jealous.
mastazi 5y ago
The page is currently down but it's archived here https://web.archive.org/web/20220119171102/https://thewalrus.ca/when-my-wife-developed-alzheimers-the-story-of-our-marriage-kept-us-connected/ https://web.archive.org/web/20220119171102/https://thewalrus...
intrasight 5y ago
I am recently divorced from my wife of 30 years. I have a girlfriend now, but I am not sure if I'll have sufficient time to develop such stories. It's something that I think about.
- jholman 5y ago
  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.
  - mensetmanusman 5y ago
    Sorry to hear, know that you carry something like a stab wound now, and that will take time to heal.
  - intrasight 5y ago
    My wife also left without reason. But if you think about it, it's probably common that this happens without any one standout reason. My point is that I'll never develop the depth of stories that I had with my ex-wife. Fortunately she and I are still friends (strange after trying to destroy each other for several years), so we get to keep our stories alive.
xwdv 5y ago
Having such a marriage in this day and age is truly a luxury, reserved only for the deepest of lovers.
- elzbardico 5y ago
  I wonder why people downvoted you. Maybe they don't agree and it is fine, but why try to silence?
  - tokai 5y ago
    It's a shallow comment that doesn't add anything of value.
  - mpmpmpmp 5y ago
    The word luxury in this context usually implies some kind of privilege. Which is a strange thing to say.
    - frenchy 5y ago
      To be fair, it is a bit of a privilege. Like most things, it requires a lot of work too, but people learn humility and kindness from each other. Those who grow up with loving parents are a lot more likely to become loving parents.
  - coldpie 5y ago
    I didn't downvote, but I always find "this day and age" kind of sentiments extremely eye-rolly, like things were better in some mythic past.
    - mensetmanusman 5y ago
      Life is complicated with many facets, a charitable interpretation is that they are comparing one facet from the past with the present and have found it lacking. It’s entirely possible that some facets of the past were much better, e.g. today almost half of the US is obese, that certainly is a large change in 50 years…
debdut 5y ago
You made me smile today :)
srvmshr 5y ago
> 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 my case, also with memories of immense joy throughout a muscular marriage of two strong, supportive partners with challenges aplenty. So poignantly expressed. I am usually skeptical of 'true love', but these kind of stories remind me I could be so utterly wrong. It is rare to find people as committed to each other as Judy & Steve.
- S_A_P 5y ago
  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
  - wnolens 5y ago
    > 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 Wise, thanks. That very concisely captures what I've been coming around to understanding about having relationships with anyone. I've had it easy with best friends that were so similar (because we grew up together), but life is long(ish) and people change and grow apart. Even if you have a a relationship that is on easy-mode, it will change for a sufficiently long time-horizon (marriage).
  - bmj 5y ago
    The Christian theologian Stanley Hauerwas put it this way: When couples come to ministers to talk about their marriage ceremonies, ministers think it’s interesting to ask if they love one another. What a stupid question! How would they know? A Christian marriage isn’t about whether you’re in love. Christian marriage is giving you the practice of fidelity over a lifetime in which you can look back upon the marriage and call it love. It is a hard discipline over many years.
mrpf1ster 5y ago
I guess I’m gonna be a little teary eyed this morning. Fantastic writing.
baskethead 5y ago
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.
- Baeocystin 5y ago
  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.
  - hypertele-Xii 5y ago
gioele 5y ago
Related to this topic (spouse with Alzheimer), there is a touching story by Alice Munro: "The Bear Came Over the Mountain", the closing story of the book "Hateship, Friendship, Courtship, Loveship, Marriage".
arrty88 5y ago
Please look at the new treatment options in clinical trials. https://www.linkedin.com/posts/scott-whitt-9b1261_cassava-sciences-initiates-a-phase-3-efficacy-activity-6888579354759045120-bLJl https://www.linkedin.com/posts/scott-whitt-9b1261_cassava-sc...
ncmncm 5y ago
This may be a good place to mention that a huge study [0] conducted over 6 years with tens of thousands of US Veterans Administration patients found that having a recent Tdap vaccination predicted a 40% lower incidence of dementia. This was confirmed with an independent cohort. You hardly need any reason to go get your Tdap booster. Any faint possibility that it might stave off dementia ought to be enough by itself. Get your shingles vaccine, too, while you're there. And, get prescribed some valacyclovir: studies in Asia have shown that had a desirable effect, with no risk. [0] doi:10.1093/gerona/glab115, https://sci-hub.se/10.1093/gerona/glab115 https://sci-hub.se/10.1093/gerona/glab115
- reasonabl_human 5y ago
  Thanks for the info. However, getting a 403 on the link?
  - ncmncm 5y ago
    Some internet service providers, particularly in UK, fail to provide service where Sci-hub is involved. You may need a VPN. Or, contact someone at a university (library staff are usually eager to help) and get them to retrieve the article by the usual means. Or, a regular internet search on the DOI gets you to the regular publisher, who will be little help, but e-mailing an author identified there will likely get you a PDF. Academic journal publishers are the scum of the earth.
Shamii 5y ago
My grandpa had dementia due to his age. When I visited him for the last time he knew who I was. But he clearly repeated very similar behavior patterns. He also showed clear signs of not remembering 'state'. Like time or location. It was very hard for me because that gave me the feeling that he as a person was gone. I cried after that for a while and it was basically me saying good bye . My sister didn't see it like that. She didn't mind doing a sleepover and having her daughter with her. My mother also glanced over that. My other sister agreed on my thoughts. I liked that she didn't see it like that and spend time with him but I could not do that. Of course I might be wrong. I don't assume I know how he thought but what else to assume? I don't think I could do that if my wife started to show similar pattern.
- snapcore 5y ago
  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.
71a54xd 5y ago
Situations like this are why I'm afraid to get married. Maybe I'm a coward but I'd like to avoid strife like this if possible.
- pomian 5y ago
  but then, you would never have had a chance to experience love. that, is, something worth experiencing, even once, even just for a moment.
austinjp 5y ago
Dementia is in the future for many of us. If not you then your parents or children, or friends, colleagues, whatever. You'll see someone with it, one day, and it's truly horrible. Donate to your nation's dementia or Alzheimer's research foundations.
jeremy3o966 5y ago
IMAYousaf 5y ago
I fear mental deterioration and degradation more than physical. They're quite connected though.

401 points by rmbryan 5y ago

For those of you who are younger and perhaps haven't experienced it, forget the movie version of true love. This story is a much better example - it's imperfect, illogical, sometimes downright gritty and yet it persists (with bouquets of flowers spread throughout).

kgin 5y ago
It’s beautiful to read even as someone older who hasn’t experienced it. I’m terribly jealous.

mastazi 5y ago

The page is currently down but it's archived here https://web.archive.org/web/20220119171102/https://thewalrus.ca/when-my-wife-developed-alzheimers-the-story-of-our-marriage-kept-us-connected/ https://web.archive.org/web/20220119171102/https://thewalrus...

intrasight 5y ago

I am recently divorced from my wife of 30 years. I have a girlfriend now, but I am not sure if I'll have sufficient time to develop such stories. It's something that I think about.

jholman 5y ago
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.
- mensetmanusman 5y ago
  Sorry to hear, know that you carry something like a stab wound now, and that will take time to heal.
- intrasight 5y ago
  My wife also left without reason. But if you think about it, it's probably common that this happens without any one standout reason. My point is that I'll never develop the depth of stories that I had with my ex-wife. Fortunately she and I are still friends (strange after trying to destroy each other for several years), so we get to keep our stories alive.

xwdv 5y ago

Having such a marriage in this day and age is truly a luxury, reserved only for the deepest of lovers.

elzbardico 5y ago
I wonder why people downvoted you. Maybe they don't agree and it is fine, but why try to silence?
- tokai 5y ago
  It's a shallow comment that doesn't add anything of value.
- mpmpmpmp 5y ago
  The word luxury in this context usually implies some kind of privilege. Which is a strange thing to say.
  - frenchy 5y ago
    To be fair, it is a bit of a privilege. Like most things, it requires a lot of work too, but people learn humility and kindness from each other. Those who grow up with loving parents are a lot more likely to become loving parents.
- coldpie 5y ago
  I didn't downvote, but I always find "this day and age" kind of sentiments extremely eye-rolly, like things were better in some mythic past.
  - mensetmanusman 5y ago
    Life is complicated with many facets, a charitable interpretation is that they are comparing one facet from the past with the present and have found it lacking. It’s entirely possible that some facets of the past were much better, e.g. today almost half of the US is obese, that certainly is a large change in 50 years…

debdut 5y ago

You made me smile today :)

srvmshr 5y ago

> 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 my case, also with memories of immense joy throughout a muscular marriage of two strong, supportive partners with challenges aplenty. So poignantly expressed. I am usually skeptical of 'true love', but these kind of stories remind me I could be so utterly wrong. It is rare to find people as committed to each other as Judy & Steve.

S_A_P 5y ago
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
- wnolens 5y ago
  > 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 Wise, thanks. That very concisely captures what I've been coming around to understanding about having relationships with anyone. I've had it easy with best friends that were so similar (because we grew up together), but life is long(ish) and people change and grow apart. Even if you have a a relationship that is on easy-mode, it will change for a sufficiently long time-horizon (marriage).
- bmj 5y ago
  The Christian theologian Stanley Hauerwas put it this way: When couples come to ministers to talk about their marriage ceremonies, ministers think it’s interesting to ask if they love one another. What a stupid question! How would they know? A Christian marriage isn’t about whether you’re in love. Christian marriage is giving you the practice of fidelity over a lifetime in which you can look back upon the marriage and call it love. It is a hard discipline over many years.

mrpf1ster 5y ago

I guess I’m gonna be a little teary eyed this morning. Fantastic writing.

baskethead 5y ago

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.

Baeocystin 5y ago
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.
- hypertele-Xii 5y ago

gioele 5y ago

Related to this topic (spouse with Alzheimer), there is a touching story by Alice Munro: "The Bear Came Over the Mountain", the closing story of the book "Hateship, Friendship, Courtship, Loveship, Marriage".

arrty88 5y ago

Please look at the new treatment options in clinical trials. https://www.linkedin.com/posts/scott-whitt-9b1261_cassava-sciences-initiates-a-phase-3-efficacy-activity-6888579354759045120-bLJl https://www.linkedin.com/posts/scott-whitt-9b1261_cassava-sc...

ncmncm 5y ago

This may be a good place to mention that a huge study [0] conducted over 6 years with tens of thousands of US Veterans Administration patients found that having a recent Tdap vaccination predicted a 40% lower incidence of dementia. This was confirmed with an independent cohort. You hardly need any reason to go get your Tdap booster. Any faint possibility that it might stave off dementia ought to be enough by itself. Get your shingles vaccine, too, while you're there. And, get prescribed some valacyclovir: studies in Asia have shown that had a desirable effect, with no risk. [0] doi:10.1093/gerona/glab115, https://sci-hub.se/10.1093/gerona/glab115 https://sci-hub.se/10.1093/gerona/glab115

reasonabl_human 5y ago
Thanks for the info. However, getting a 403 on the link?
- ncmncm 5y ago
  Some internet service providers, particularly in UK, fail to provide service where Sci-hub is involved. You may need a VPN. Or, contact someone at a university (library staff are usually eager to help) and get them to retrieve the article by the usual means. Or, a regular internet search on the DOI gets you to the regular publisher, who will be little help, but e-mailing an author identified there will likely get you a PDF. Academic journal publishers are the scum of the earth.

Shamii 5y ago

My grandpa had dementia due to his age. When I visited him for the last time he knew who I was. But he clearly repeated very similar behavior patterns. He also showed clear signs of not remembering 'state'. Like time or location. It was very hard for me because that gave me the feeling that he as a person was gone. I cried after that for a while and it was basically me saying good bye . My sister didn't see it like that. She didn't mind doing a sleepover and having her daughter with her. My mother also glanced over that. My other sister agreed on my thoughts. I liked that she didn't see it like that and spend time with him but I could not do that. Of course I might be wrong. I don't assume I know how he thought but what else to assume? I don't think I could do that if my wife started to show similar pattern.

snapcore 5y ago
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.

71a54xd 5y ago

Situations like this are why I'm afraid to get married. Maybe I'm a coward but I'd like to avoid strife like this if possible.

pomian 5y ago
but then, you would never have had a chance to experience love. that, is, something worth experiencing, even once, even just for a moment.

austinjp 5y ago

Dementia is in the future for many of us. If not you then your parents or children, or friends, colleagues, whatever. You'll see someone with it, one day, and it's truly horrible. Donate to your nation's dementia or Alzheimer's research foundations.

jeremy3o966 5y ago

IMAYousaf 5y ago

I fear mental deterioration and degradation more than physical. They're quite connected though.