[HN Gopher] When my wife developed Alzheimer's, the story of our... ___________________________________________________________________ When my wife developed Alzheimer's, the story of our marriage kept us connected Author : rmbryan Score : 295 points Date : 2022-01-19 12:46 UTC (10 hours ago) (HTM) web link (thewalrus.ca) (TXT) w3m dump (thewalrus.ca) | mastazi wrote: | The page is currently down but it's archived here | https://web.archive.org/web/20220119171102/https://thewalrus... | ncmncm wrote: | 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 | gioele wrote: | 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". | xwdv wrote: | Having such a marriage in this day and age is truly a luxury, | reserved only for the deepest of lovers. | aantix wrote: | 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_... | aantix wrote: | "When a person realizes they have been deeply heard, their | eyes moisten. I think in some real sense they are weeping for | joy. It is as though they were saying, "Thank God, somebody | heard me. Someone knows what it's like to be me." | | -- Carl R. Rogers | nvarsj wrote: | But what you describe _is_ rare like the OP points out. For | two people to be so honest and open and direct with each | other requires large amounts of maturity and mutual respect | and selflessness. Which, to be honest, is rare enough in a | single human these days, let alone two that manage to find | themselves together. If you have that, I'm truly envious. | aantix wrote: | I was addressing this statement from OP | | >reserved only for the deepest of lovers | | For some reason I interpreted this as deep love being | random. Maybe that wasn't the intent, after re-reading it. | | Just wanted to demonstrate what had worked for me to | rekindle intimacy. And that it was teachable. | | The book "Conscious Loving" by Gay and Kaitlyn Hendricks is | the book that talks about telling the Microscopic Truth. | It's helped me tremendously. | | I enjoy their newsletter a lot. They discuss in detail many | of the concepts in their books. And it's free. | | Relevant to this conversation - | | _Here 's Why Sharing Your Emotions - Even The Messy, Angry | Ones - Is Critical For A Great, Intimate Relationship_ | | https://www.heartsintrueharmony.com/m/email/ar/truth-our- | emo... | granshaw wrote: | Be honest about your feelings, but still strive to be | deserving of her, that's what I try to practice :) | chillacy wrote: | > - Learning to Speak the Microscopic Truth | | I first encountered this idea from the Conscious Leadership | Group (Gay Hendricks works with them), and now I can't help | but notice that it seems to apply to HN comments (and the | result of a given thread), as choices in the words and | grammar of each statement. | aantix wrote: | Jealous that you've got to attend one of their groups. | That's so awesome. | | Their work has helped my second marriage to be 10x what my | first one was. | | Them teaching me to tell the difficult truths was a big | part of that. | bongothrowaway wrote: | Hear, hear. I've found the same. Love, like any sort of | relationship, takes work and compromise, but when you do it | with honesty and candidly, it grows far more easily. | whateveracct wrote: | It takes GUTS to be in love | mbg721 wrote: | It's still possible. There are plenty of religions that insist | it should be the default among marriages. | iancmceachern wrote: | Religion has nothing to do with it. | mbg721 wrote: | It can have something to do with it, although it doesn't | have to. | elzbardico wrote: | I wonder why people downvoted you. Maybe they don't agree and | it is fine, but why try to silence? | coldpie wrote: | 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. | microtherion wrote: | Right. The comment implies that this kind of emotional | commitment used to be the norm, which is very much a | [citation needed] kind of claim. | | A bit of family lore had it that when some distant | ancestors of mine no longer could live independently in old | age, one child took in the husband to live with them, and | another child, quite distant from the first one, the wife. | My mother, upon learning of that arrangement, exclaimed how | hard it must have been for that couple to be separated in | their final years, only to hear "Quite the opposite! They | couldn't stand each other for the longest time." | keiferski wrote: | Unless you think that things are _always_ getting better, | it is necessarily implied that _some_ things were better in | the past. | [deleted] | coldpie wrote: | Compare these two sentences: | | > Having such a marriage in this day and age is truly a | luxury, reserved only for the deepest of lovers. | | > Having such a marriage is truly a luxury, reserved only | for the deepest of lovers. | | One contains a positive claim that something is worse now | than it was before, which I think invites dispute and is | entirely unnecessary anyway. It's a fine sentiment | without the judgement. | mlyle wrote: | > like things were better in some mythic past. | | It doesn't need to mean this. | | We've got so much choice in how we structure our lives now. | | Choice mostly makes things better. Lots of bad outcomes | become less prevalent. | | But some good outcomes become harder to find, and one can | rationally have nostalgia for them. | ChrisMarshallNY wrote: | _> I always find "this day and age" kind of sentiments | extremely eye-rolly, like things were better in some mythic | past._ | | I've encountered this sentiment, several times, lately. In | my experience, _any_ mention of a time before now, | especially, when they find out that I am "chronologically- | challenged," is met by a "Don't tell me about the 'good old | days,' Grandpa!". | | This day and age, seems to have established a culture of | real, nasty, institutionalized, anger at previous | generations. It is unlike what I experienced. Younger folks | have railed against their seniors for all of human history, | but now, it's _personal_. | | I think I understand where a lot of the anger comes from. | My generation has caused a lot of damage, and has exhibited | almost awe-inspiring levels of selfishness. I'm pretty | pissed, and I'm one of them. | | But that ain't me. I have lived a long-ish life, and have | developed a lot of experience and PoV, as a result. I'm a | kind, unselfish person, looking forward to the future, and | making the world a better place, for my having lived in it. | Not all that is old, is bad. Much is not _directly_ | applicable to today 's world, but should not be discarded, | wholesale. In many cases, only minor adjustments need to be | done, in order to make a viewpoint, technique, or | philosophy applicable to today's world. | | The story is a heart-wrenching one. I have many peers, | experiencing a lot of these types of things (One of the | things that happens, as we age). Not all of them are | handling it as well as the author. | | I hate to be the bearer of bad news, but _all_ of us are | destined to become "boomers." Every. Single. One. Of. Us. | No exceptions. The alternative kind of sucks. One day, we | will all be where I am. That is what makes ageism so crazy. | | I have been around long enough to watch some folks hoist by | their own petard (a classic saying, BTW). They established | a corporate culture, that eventually excluded them. | | https://www.thedailymash.co.uk/news-in-pictures/news- | briefly... | coldpie wrote: | > In my experience, any mention of a time before now, | especially, when they find out that I am | "chronologically-challenged," is met by a "Don't tell me | about the 'good old days,' Grandpa!". | | > My generation has caused a lot of damage, and has | exhibited almost awe-inspiring levels of selfishness. | | With respect, I think some self-reflection may be in | order. | ChrisMarshallNY wrote: | Actually, that is not "with respect." | | And you have _no idea_ how much self-reflection is a | fundamental aspect of my life. I challenge you to match | it. | coldpie wrote: | I don't really want to turn the comments section of this | lovely article into rancor, but yeah, I'm really tired of | hearing about the "good old days" from those who gave us | the current day; from those who refuse to cede power to | us who will actually be here when shxt hits the fan so we | can start the long, heavy work of fixing the problems | that were created to give you those "good old days"; we | who are trying to make-do in a world where those who | enjoyed those "good old days" are hoarding every last | resource; so those who loved those "good old days" can | then come in here and tell us our _love_ isn 't even good | enough? Come on, man. Your "good old days" came at the | cost we're paying now. Give us a break and let us at | least try to enjoy what you've left us rather than rub | our noses in how good you had it. | | Gah. | | I apologize for this dumb thing aimed at you. I know it's | not your fault. But I think this is what you're coming up | against when people tell you not to tell them about the | good old days. | ChrisMarshallNY wrote: | I agree. I really understand this. I even mentioned it in | my comment. I have a rather ... _out-of-band_ ... life | story for this venue. I didn 't dance to this age. I was | dragged, kicking and screaming, and holding onto the door | jams. Frankly, I'm amazed that I'm here, every day. | | My past is not really something I want to go back to, | thank you very much. I prefer looking forward. | | I also don't want it to be rancor. If you look at my | commenting history, here, you will find very, very | little, and what you do find, will be fairly mild. I'm a | reformed troll, and feel that I must atone for being an | arsehole of the first water, for many years. I know that | I come across as "stuffy," but believe me, when I tell | you, that the alternative is not pleasant. | | But it is also important to understand that every person | is an individual. This is something that I have to | struggle with, every single day. It's very easy for me to | be intellectually lazy, and dismiss whole swaths of | people, simply because they tick one box of many. | | I have fast friends, that I would never have had, if I | had insisted that they meet my litmus tests. I won't | engage them on certain topics, but I know that we have a | great deal of mutual respect. | | I participate in a community, that is ... _eclectic_. Its | members are quite varied, and we have learned to put | aside our differences in pursuit of a common goal. I | really wish that the world ran this way, but it 's | difficult work. Really humbling, but also extremely | rewarding. A central tenet is to be of Service. I like to | think that I've done OK, here. | | The article was written by an old dude that has been | dragged through hell, but has also managed to do well for | himself and his wife. | | Believe it or not, I hear stories like this almost daily. | Very few ever make it into the mainstream, and I am a | truly privileged person to hear them. | | Not all that is old is bad. Not all that is new, is good. | The world has been damaged for a long time, and no one of | us can fix it all, so we do our part to police our area. | | https://www.youtube.com/watch?v=uIAhVV9-85c | tokai wrote: | It's a shallow comment that doesn't add anything of value. | mpmpmpmp wrote: | The word luxury in this context usually implies some kind of | privilege. Which is a strange thing to say. | frenchy wrote: | 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. | JohnWhigham wrote: | Bitter divorcees probably. Having a marriage like that is a | luxury though. Let's be honest: marriage is _not_ the same as | it was 40-80 years ago, and that 's because society is not | the same it was. Long term commitment to your spouse seems to | be an idea left to the past now. | SketchySeaBeast wrote: | "Long term commitment" isn't a luxury though, it's | dedicated effort on the part of both spouses. | sam0x17 wrote: | 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 the marriage becomes hard, it's a lot easier | to break a lease than it is to break a mortgage. | [deleted] | Shamii wrote: | 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. | baskethead wrote: | 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. | supperburg wrote: | 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... | Baeocystin wrote: | 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. | arrty88 wrote: | Please look at the new treatment options in clinical trials. | | https://www.linkedin.com/posts/scott-whitt-9b1261_cassava-sc... | debdut wrote: | You made me smile today :) | smoyer wrote: | 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 wrote: | It's beautiful to read even as someone older who hasn't | experienced it. I'm terribly jealous. | srvmshr wrote: | > 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. | nefitty wrote: | 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. | srvmshr wrote: | 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 | process, and the minutae of his feelings. As a thinking | species, we perhaps appreciate this expressivity. These | adversities are more common than depicted & many couples with | disabilities do share meaningful time together. | nefitty wrote: | 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. | gernb wrote: | My 1st girlfriend's mom told me "never marry someone you | can't fart in front of". My sister easily farts (and laughs) | in front of her husband. In fact for Christmas he was given a | plaque that says "I didn't fart, my ass blew you a kiss" | nefitty wrote: | Hahaha that's the true love they don't make Disney movies | about | diskzero wrote: | 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. | testfoobar wrote: | I am sorry for your loss. | nefitty wrote: | Jesus. There's no words. My heart breaks. | | Thank you for giving us your thoughts. I hope to live up to | the standard you set with the clearly towering love you | shared with your wife. I'm dumb, young, unwise so I'll dare | to presume: I am certain she would have told you how | important you are to her, how much she loves you and how | thankful she was that you shared your life with her. | | Sorry, I try not to be emotional. Especially on a forum | like HN where rationality and clarity of thought seem to be | the M.O. Its impossible to imagine what you've gone through | and what you're going through. I send you a huge, digital, | hairy man hug my dude. | diskzero wrote: | Thanks for the insight. I like to think that you are | right! | | Thanks for the hug. It is much appreciated. | pomian wrote: | 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. | dijonman2 wrote: | 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, | there is a secret. It is not that I am against marriage, but | I was searching for a perfect woman. I searched and searched, | and my whole life slipped by." The inquirer asked, "But upon | this big earth, so many millions of people, half of them | women, couldn't you find one perfect woman?" A tear rolled | down from the eye of the dying man. He said, "Yes, I did find | one." The inquirer was absolutely shocked. He said, "Then | what happened? Why didn't you get married?" And the old man | said, "But the woman was searching for a perfect husband." | | Osho - The Dhammapada: The Way of the Buddha | arcticfox wrote: | 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. | jborichevskiy wrote: | Beautifully put :) the background radiation of love | rxhernandez wrote: | I think the divorce rate starkly points in a different | direction. | NineStarPoint wrote: | There is no doubt that bad marriages are common. That | doesn't mean that true love is rare though. The question of | how many of the marriages that do stay together are good | marriages is somewhat separate. | [deleted] | spoonjim wrote: | True love exists, but it's something that's made, not found. | S_A_P wrote: | 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 wrote: | > 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). | mrpf1ster wrote: | I guess I'm gonna be a little teary eyed this morning. Fantastic | writing. ___________________________________________________________________ (page generated 2022-01-19 23:00 UTC)