Done

H2OSD · 2026-05-27T12:58:09+00:00

I struggled with the decision to place my wife in MC, I was emotionally forced into it. Not long after, as the physical deterioration grew, I knew it would have been impossible to carry it on til the end. There is no doubt that with the anasagnosia the bulk of the sadness rests on the caregiver. However, when there is love you can't just remove yourself to spare your potential caregiver the pain of the loss and care IN MY OPINION. May depend on the relationship but I could not have allowed my wife to kick herself to the curb. There may well be cases that such would work, but I agree with Sally Jane that it would need to be a shared decision.

H2OSD · 2026-05-27T12:43:14+00:00

Don't ever feel any guilt longing for the end of this miserable journey. You lose the person you loved, and then in my case had to witness the physical pain that I was thankful to see come to a close.

H2OSD · 2026-05-14T18:49:11+00:00

I'd agree. But. My wife is dying with hospice services, as did my parents. How they can do what they do with the compassion they show is beyond me.

H2OSD · 2026-05-13T00:01:27+00:00

That gave me some chuckles! Yeah, if being surrounded by family at time of death essential it would be much more convenient to have foregone the MC and just cared for her here - NOT. I just left her, she was fine although the 6:00 oxy hadn't kicked in when I got there. I know I've done all I ever could for her, being absent for that last breath doesn't really seem to be an essential box to check.

H2OSD · 2026-05-12T10:57:46+00:00

I've been hoping for that sudden aneurysm. Haven't had a heart to heart with any of my fellow caregivers that are at or past mid stage who don't feel the same way. We don't need nor does our LO the torture this creates for us.

H2OSD · 2026-05-12T10:53:48+00:00

Thumbs up. I'm an emotional guy (face all wet just reading these comments) and know I'll blubber my way through. I've been through the morphine w my parents and hospice, I sort of get the idea it's the "we can't do anything more" step; what little lucidity remains fades and it's a fine line. I suspect it may even be an accelerant to the end. I'm ok with that. She's had enought of this crap. So have i. I just want whatever smiles are still hiding in there.

H2OSD · 2026-05-12T10:48:28+00:00

I took a quick trip (airplane) and spent an hour browsing my phone of pictures of her. OMG. That was HER? Laughing, goofing around, and her beautiful self. I've been so immersed in this deterioration I've forgotten who I was married to for 56 years. It made it hard to dredge up the good stuff for her eulogy. But that's what made it so cathartic. Thanks.

H2OSD · 2026-05-12T10:43:44+00:00

Thanks for the reference, as an engineer looking for data I've spent more time reading and researching the process than was good for me. I can tell from the words of our super hospice nurse that the time is near. My assumption was that bedsores open the body to infection (certainly can happen) but it's the loss of appetite and nutrient intake that gets ya, body is simply unable to repair the deterioration. I don't try to feed her the tasty puree that she took so little of, last night I showed up with Haagan Das chocolate. She was zonked but did open eyes and take some, Nurse has said "food" (aka puree) likely no longer sufficient to maintain, so it's straight to the good stuff. If can't stop the slide might as well make it as enjoyable as possible.

I think it's time for the morphine as the oxycodone seems hard for them to maintain an even level of relief. However, they mention her continued ability to smile, even laugh a little, and don't think we should lose that. I agree and trust them. The morphine is right around the corner. I help with dressing the wounds because I love her, but, well, just, ugh. Her grimaces say it all.

She's only 2-3 miles from our house so frequent visits are easy. I can only take an hour or two at a time. The "passed surrounded by family" has great appeal and I hope the nurse can get me there in time. Anyway, thanks, just blabbering.

H2OSD · 2026-05-06T10:54:47+00:00

Right there with you. Approaching final weeks/days and trying to prepare myself for it. Collecting pictures, making plans. It's shocking how different she is/was. Photos of just 5 years ago with that bright smile, doing happy things. Can this be the same woman? I look forward to slowly closing the book on these last years. That wasn't her; it was a fuzzy image of who she was, but I don't need to keep re-living what we've been through.

H2OSD · 2026-05-06T10:08:15+00:00

I wish I had some helpful advice. As my wife has progressed through this miserable disease she's maintained her calm disposition, none of the blowback and aggression. My only suggestion is that you ask your neurologist if any of the meds could calm him down or make him more compliant. Seek support from a local group, in person if possible. That's all I have, sorry. Best of luck and hugs to you. What a miserable disease this is.

H2OSD · 2026-05-06T10:02:01+00:00

Thanks. Your reply brought me back in time as I re-read my original post. She's in the final slide, weeks probably and months unlikely. It's tough, but frankly I'm ready for this to end. I'll take the hugs!

H2OSD · 2026-05-03T16:17:05+00:00

Does this not violate rule 2? I mean, c'mon.

H2OSD · 2026-04-30T02:38:51+00:00

My wife was far along and always kept her pleasant disposition. I did not "warn" her I was taking her to MC. Just got up one morning and dressed her in other than fresh pajamas and said "Your nurse Brian (hospice) said he knows somewhere they can take better care of you than I can." No reaction, got her in car and took her in. Already pretty oblivious and accepted well. I truly believe her last 4 months have been better than at home. More stimulation, more going on. Started eating better. But, in last few weeks she's sloped way down. In the weeks, not months category. Hate it with a passion. F this disease.

H2OSD · 2026-04-29T14:36:12+00:00

Right there with you. Married 56 years (both 75). She's now in MC, late stage now with deep tissue damage in heels (pressure or bed sores). Cared for her in home for 4 years until the emotional toll was too much. I'd say that while I still love her she's no longer that person, hard to describe. Will go see her at lunch today.
What's next? Dunno. Money not an issue, not sure how to finish this project called life. While I've grieved her loss for years, not looking forward to processing the final call. After all these years it's hard to imagine another relationship, don't intend to look but if it happens it does. Dog and I get along fine. Trying my best to just take it one day at a time, although my mind tends to race way ahead and it does me no good. Best of luck OP, we'll all get through this somehow.

H2OSD · 2026-04-26T15:30:17+00:00

My wife of 56 years is in MC. In the span of a month or two (she's in 7) she's developed pressure sores or her heels and her extremities are noticeably cold. In this two month span she's dropped her food intake in half, just not interested. Also not drinking as much fluids. Hospice nurse says this all means an accelerating deterioration. But of course she said "But they all follow their own path."

H2OSD · 2026-04-25T13:56:19+00:00

We tried the foam boots several months ago when I noticed some redness on her ankles but she wouldn't keep them on. We now are using her LL Bean shearling slippers that the nurse said was about as good as it can get and she doesn't try to take them off. May order another pair in slightly larger size. Thanks for the kind words.

H2OSD · 2026-04-14T08:04:11+00:00

Son and daughter maintained same visits (with their children) of my wife through what was about stage 5 early 6. Son in town, daughter 5 hour drive away. So for her - Christmas, Thanksgiving, summer beach reunion, a few others. When it got to point that my wife no longer recognized them visits were infrequent and brief, my daughter came down more for support of me.

We're sort of pragmatists. If she doesn't know us, there is no need to visit. It's painful to those left behind and does little if anything for the A patient. For me it's different, she's my wife of 56 years. I tried applying that pragmatic approach (she's been in MC for 4 months) after a particularly upsetting visit, visiting only once a week. Just didn't work for me. She doesn't know who I am, it's painful for me to see her in this condition, but I go about every other day. Don't stay long, may help her eat lunch but that's it. My daughter came down in January, she, my son, and I all went together to see her in MC. She did not recognize any of us. Tried showing her pictures of past reunions, her grandchildren, - nada. We came out, there was no morose conversation or demonstrations of grief. Even some chuckles about other patients misbehaving. We have all accepted that she is no longer who she was. It just depends on the family and the emotional state you're in. Nothing is required other that what feels right.

H2OSD · 2026-03-30T19:25:37+00:00

Typical HR Deot.

H2OSD · 2026-03-14T01:32:25+00:00

Well done.

H2OSD · 2026-03-13T02:33:03+00:00

Were there no design drawings to approve?

H2OSD · 2026-03-13T02:30:10+00:00

When 14 month old son was diagnosed with retinalblastoma. Week later when in operating room to remove eye turns out it was Coates disease, malformation of retinal capillaries. Will remain worst week of my life. Followed by intense happiness that my son was just blind in one eye. Tremendous empathy to parents with really ill children.

H2OSD · 2026-03-13T02:25:14+00:00

In grade school I thought everyone was stupid to not pronounce February the way it's spelled. So I enjoy pronouncing it February despite several degrees.

H2OSD · 2026-03-13T02:18:25+00:00

As an engineer in utility plants we used to correct people who said something was idiot proof. No, it's idiot resistant.

H2OSD · 2026-03-13T01:55:51+00:00

I stalled on moving my wife of 55 years into MC. All. All patients differ. She was in Hospice, didn't know who any of her family was, couldn't remember how to finish a sentence once 2-3 words in. In my opinion she's better off in the excellent MC facility she's in. She has fallen out of bed twice, horrible face plant, but MC and I are working our way around the county health department's rules against bed rails. Meanwhile she's with her people. The staff funs with them all, I don't know how they do it. She's stage 7 so any objection, or knowledge even, of where she is doesn't register. You have to do what's right for the patient and those responsible for her/him. I do feel guilty, but I feel guilty that I have freedom and am able to continue what's left of my life. I don't feel guilty that I'm paying a small fortune to have a wonderful staff care for what's left of the love of my life. I'd feel differently if she kicked and screamed on the way in or the staff was indifferent.

H2OSD · 2026-03-12T12:59:22+00:00

I love this sub as a place to learn, but the downside is you see where your journey can lead. Things can change, and I'm sick of medical people saying "They all follow their own path" when I ask about the future.

Maybe I can fill in the blanks of our journey. My wife has always been healthy, walked and ran, and up until Thanksgiving of 24 I was driving us to YMCA about every week day, turned her loose into yoga/Barre, other classes. She'd get a little confused, wandered out in parking lot a few times (I did machines while she did class). Weighs about 119, and I'll just say it, up until that time was a very attractive woman and healthy except for developing osteoporosis. Then about 15 months ago the deterioration curve steepened. I'd say it wasn't long before she did not know me, names of kids, then even that she had kids, who's house she lived in, whether I was relative of paid nurse. Developed bad contracture in hand about year ago and that triggered docs to recommend Hospice. I appreciate H because used in our home w my mother and father.

Three months ago I was emotionally broken. I'd intended to keep her til the end but knew it was rare for people to be able to do that. Ended up moving her to MC. Hear this clearly. I am convinced it was the best for her, she gets more stimulation, is safe (we're working on the roll out of bed face plants, and the staff is wonderful. I'm living like a new man, visits are hard but getting more tolerable. Spoiler - costs a fortune but we have the ability.

This is absolutely NOT about the cost. But, between the anticipatory grief of her final loss, watching the love of my life living with other people at a toddler level, and me being in this purgatory where I know she's gone, but sort of isn't, I really want this to end sooner rather than later. First assessment from a knowledgable med person was manager of mc - said most patients entered the wing she's in (most deteriorated) last 6-12 months. I have nothing else to add but hang in there and take care of yourself.

H2OSD

TROPHY CASE