Mobility vs accelerating DH's decline?

Belle

This might be a bit long but wanting advice on what you would do in this situation. To recap my DH has not been formally diagnosed with alz but has short term memory issues, declining MMSE and neuropsych test scores, some brain atrophy on his MRI, and small vessel ischemic disease. This all started 10 years ago, accelerated in the last few years, and he's in his late 50's now. If he had alz I would describe him as late stage 4. He also has had an autoimmune disease for 30 years and as a result of medications has had multiple joint replacement surgeries. He also has significant cardiovascular disease (90% blockage recently repaired with a stent), clear signs of artery damage in his brain, etc.

Since he retired 3 years ago he barely moves. Sits in front of a computer all day playing games and has severe apathy so no motivation to keep himself mobile. He also dropped out of cardiac rehab and won't go back. He can't walk more than about a few dozen yards, won't use the cane or walker given to him by the VA, only wears his custom made ankle brace sporadically then complains of nerve pain that keeps him from sleeping afterwards. He now wants the ankle fused.

I don't think he will do PT like after his other joint replacements years ago. The anesthesia and the surgery itself could accelerate his decline. I'm not sure he will walk more often after a successful surgery due to his extreme apathy. His last hospitalization had me looking at AL/MC since he was so delirious and agitated during the hospital stay. He did return somewhat to baseline about a month after he was released. Our insurance does not want him to go to in patient rehab ($$$) but he will not be able to bear weight for 12 weeks post-op.

However if he doesn't have the surgery he is going to lose his ability to walk completely at some point. That would require placement for him since he currently cannot transfer to a chair lift and we do not have a full bath on our main floor. Just assume I do not want to sell our home as there are very, very few homes in our area with first floor master bedrooms, we have pets, I like to garden and I do not want to move to an apartment or condo at this point in my life.

My inclination is to not support him having this surgery. What would you do if it was your LO?

M1

I think your instinct is correct. It doesn't sound like it would be worth it. Regardless of whether he has a formal diagnosis, you make a good case for vascular dementia. Planning for eventual placement sounds like a reasonable plan.

Belle

Thank you @M1 . I agree I think we are looking at vascular dementia also, which I understand has a relatively quicker timeline that alz. He's been complaining of memory and word finding issues since 2016 so maybe it's mixed dementia since alz runs in his family. I'll probably never know what it really is since his medical situation is so complex.

Selfishly I think having to move him to a facility some day because of an inability to ambulate will be easier on me. And in reality not really easier but a clearer line in the sand to determine when I can no longer meet his care needs. For over a decade I was trying to get him to update the house to accommodate his physical decline from the autoimmune disease and he refused or ignored my requests. Maybe he already wasn't able to make those updates happen by the time I realized they would be needed but I use those discussions in my head to alleviate the guilt I feel over even thinking about having to move him out of our home.

harshedbuzz

@Belle

I think your instincts are spot on.

My dad also presented with extreme apathy and inertia. The man rarely moved. He spent a lot of time on his computer until he lost that ability, then he glued himself to the sofa first sitting and then reclining. As his mobility was impacted, we brought in PT twice weekly for strengthening and balance work, but dad refused to do the homework and was quickly dismissed.

If your DH can't do the post-procedure PT, between the anesthesia and hospitalization, he may become non-ambulatory sooner rather than he would have if he hadn't done the surgery.

One caveat is that where I live, most MCFs will only accept new residents who are ambulatory and self-feeding. Here, the options would be a SNF which would be considerably more expensive and lack dementia-informed care and programming. There was one of the dozen I toured that would accept a person who'd used a wheelchair for some time and was able to propel themselves about. In your shoes, I would tour now and find out whether this is the case in your community as it might impact your timeline or your options.

HB