it's more common than you know

[alstroemeria]

I called the HOA rep to see if I needed to pay my annual dues and my share of the special assessment in 2 separate checks or if 1 check was OK, and we got to chatting. Her mother took care of her father w/Lewy Body dementia from diagnosis to death 5 years later. The last year he was about as helpless as an infant. Before that he had very interesting hallucinations. Once he asked the family if they could see the parade out the window…elephants, giraffes, clowns… Apparently his hallucinations were good ones! Anyhow, she knows what it’s like to care for someone w/dementia at home and offered to come by to pick up my check so I didn’t have to mail it. (She’s also dealing w/long covid herself. Maybe. She got pneuomonia for the first time at the beginning of the pandemic and wasn’t tested. Or maybe it’s a Moderna vaccine reaction, worsened by her booster. Or maybe she developed an auto-immune condition independent of covid or vaxxing–no answer yet, still undergoing tests. She’s 65.)

The woman (looked to be ~80 yrs old) in line behind me at the bakery took care of her husband w/ALZ at home with little help. Last 5 years kind of challenging. I felt virtually hugged

Totally non-scientific, but it seems like most people put their parents/grandparents w/dementia into a facility, but most care for their spouse w/dementia at home–with as much help as they need and can afford. It’s nice to not feel so alone in this.

[1poorguy]

I hope I didn’t contribute to the “alone” feeling. Never my intention.

I know one couple that recently moved to a CCRC. The husband decided it was a good idea to be proactive so his wife isn’t stuck trying to care for him in their previous home. He’s OK so far, but was concerned about the future.

Another couple we met on a cruise, and have kept in touch with, the husband is starting to get dementia. She recently asked me about shopping for AL facilities (she knows about 1poormom). They aren’t there yet, but she wants to know what is what now, rather than be in a crunch when it is clear she can’t continue in their current situation. It was implicit that she would go where he goes.

No, you’re not alone. I didn’t want to remove 1poormom from her home, but I had to. She stayed with us a few weeks, but she was clearly unhappy here (she especially didn’t like the food…she’s a Hoosier not used to anything that isn’t salad, meat, and potatoes, which we almost never do around here). So the facility was a better option, and she can partake of whatever amenities she chooses**. The cruise couple is in the early stages of coping, and the wife has concluded that at some point a facility may be the best option for them.

Dementia is shockingly common (is it just the US?), and people have to make hard decisions about how to cope with it. Lots of people. Younger people with regards to their parents, and older people with regards to their spouses. It even plays a prominent role in several movies I can think of (e.g. The Notebook, and one with Bill Murray I’m too lazy to look up), so it’s a part of the modern experience.

It would be hard to see your spouse fade away. As I posted, 1poormom a lot of the time has faded away. Sometimes she has a good day, and others she has hysterical hallucinations. Even if her body is relatively strong, she is dying. I expect in maybe two years, there will be a person that looks like my mom but isn’t anymore. Her personality, and who she was, will be completely gone. I can’t imagine going through that with a spouse.

FWIW, I’d probably seek-out counseling/support. My company pre-COVID was doing a support group once per month about dealing with deteriorating parents. They also brought in a few guest speakers, like the one telling us about the EAP through MetLife, but mostly we shared stories. Some folks showed-up whose parents were already gone, but they just shared the wisdom of someone whom had already been there. It was helpful on several levels.

1poorguy

**They just locked-down her facility again, so all meal service is in the room and all activities are canceled.

[alstroemeria]

My experience with “caregiver mtgs” is that just about everyone else has their parent in a facility and needs to whine/vent/get support for how sad/scary it is when they visit. If there were a group of people like me, actually dealing 24/7, it would be very beneficial to me. But I just start rolling my eyes (mentally if not physically) at the other folks. They are sad when Mom needs Depends. Jeepers! I was not only sad but in physical pain when I had to change my mothers sopping Depends day after day after day–at 5:30am! And often launder the bedding right after. It’s a whole 'nother ballgame!

This morning the hubster kept unzipping and whipping it out. I kept taking hinm to the toilet, where he wouldn’t do anything and seemed kind of confused. He was with his aide a few hours today and she had a similar experience (but less so as they were at Walmart and Walgreens half the time).

Shortly after she brought him home, it was back to the same. BUT! He finally took a (great big) poo. A bit constipated, it seems. Or maybe the brain connections about when the sensation to go is enough to actually be able to make it so. I would love to talk about this with a group of people dealing with it themselves like I am. The usual caregiver crowd has no clue. Their loved one’s facility gives them ducolax and aides wipe their behinds as needed.

PS–Everyone who knew my husband before thinks he’s still there, if a far less competent version of himself. If he’s hallucinating (not normally a part of his type of dementia), I wouldn’t know. He stares into space a lot these days, or stares at something in the room (his leg, his shoe, my lap blanket, a chair…). But not the empty-eyed look of nursing home denizens (drugged, most of 'em, and nobody home). I believe he’s thinking, or his version of it.

PPS–He no longer initiates hugs, kisses, hand-holding, but he responds in kind. He still smiles/laughs appropriately in response to others doing the same (not all the times it, but sometimes–especially if I am highly amused, he laughs).

[1poorguy]

My experience with “caregiver mtgs” is that just about everyone else has their parent in a facility and needs to whine/vent/get support for how sad/scary it is when they visit.

By implication, you realize you’re going to the wrong meetings. I’m sure there are some that deal more with spouses than parents. Mine was at my company, and was specific to aging parents. One of your doctors, or your aide, may be able to recommend a group. Or Sheila may have suggestions (she knows a lot about this sort of stuff, as you know). I would say to consult your EAP, but you’re already retired.

A quick google turned up some starting points:

https://www.google.com/search?q=support%20group%20caring%20f…

1poorguy

[jrdown]

alstro ~

Both of my parents were cared for at home before their deaths. They never entered a nursing home to live.
My mom was much easier as she had a return of breast cancer but was very sharp up until 2 months before she died. My dad did suffer from Dementia/ALZ and I cared for him for his last 6 years in his home although the signs were there at least 8-10 years before death. To be honest, the last year was beyond trying and I was about at my wits end of being able to deal with him. I was going to start looking for a nursing home. He never was mean but ended up reverting back to a toddler and began demonstrating behaviors that would not be appropriate in public … or really at home with others in the room. His days and nights were mixed up and he was wheelchair bound. It was so hard to lift and move around a 200-pound man. He had hip replacement surgery at 89 years-old and that was a mistake and he never was able to regain strength in his legs. Diapered and not wanting to let me help him bathe, breathing issues, swallowing issues, refusing to eat except for pudding cups and even at the end he just stopped eating and drinking.

I am glad that I was able to give that amount of years to care for my dad. I had cared for my husband and my dad at the same time although my husband died 5 years before my dad. After my dad passed I made sure I took out a LTC policy that would cover 3-4 years in a nursing home and much help for at home needs. I cannot expect my children to give up 5+ years and move to be the caregiver. They are wanting to make sure I know that I will come and live with one of them if my need arises. That is wonderful and if my health gets to a point that it just is not easily managed in one of their homes then I want the option of being in a nursing home facility.

Robyn