Roller Coaster/Long Distance

roadwarrior

Edited - attempt to clarify questions

New here. I am a 6 hour drive from my parent's, currently able to visit about monthly. Can't count the trips in the last two years.
Only child ( with a thankfully helpful spouse).
Mother with MD > VD + light AD from the primary diagnosis. She is in hospice care and likely LS by symptoms - difficulty eating and no mobility among them. It's been a wild ride with her - even the hospice nurse calls her a puzzle. She's not wrong.
Dad has short term memory and vascular issues but still functional, including able to drive locally (never gets lost). They are in an AL apartment.
Here to see what others are sadly experiencing and how others deal with the never ending roller coaster of emotion from sadness, guilt, and mostly feeling totally helpless.
Could post 100 questions, but alas... here's a couple.
Being in AL, if she at some point can't get recertification for hospice (note 'puzzle' comment above), AL can 'force' a move out per contract. She's way beyond AL and is able to stay because of hospice. *Has anyone faced this?* It seems unlikely but I have to be prepared.
**Edit > has anyone faced having to move someone due to care level? Suggestions?

It's taking a huge toll on my dad. He gets frustrated and doesn't know what to do, other than get out of the apartment as he can. Rule him out on care giving. When he calls I can hear her disorientation in the background and he's beside himself. I've considered moving her to different care (have a few hours of outside caregiving now besides hospice) but I’m afraid the stress might really push her into a worse condition. She already thinks she needs to be saved and is in danger - disease progression. Has anyone moved a LO, or continually talked themselves out of it?
**Edit> how aanyone has managed parents at different care levels? In this case, dad isn't inclined to participate in available activities unfortunately.

Sorry so long. TIA

harshedbuzz

@roadwarrior

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Your specific situation has a lot of moving parts— long distance, what seems like tandem PWD in different stages with different care needs, a spouse unable to provide care and a tenuous living situation.

Some thoughts—

Are you the dPOA for both giving you the power and the obligation to make this decision? Or will you need to convince dad on next steps?

Do you have a solid Plan B in your back pocket in the event one of them is hospitalized due to injury/illness or predeceases the other? If dad has a heart attack, is there someone with boots on the ground in their community to step in until you can be there. Are you retired and able to stay with mom should dad require rehab after a medical event?

Cobbling off of the above, there is a phenomenon in which elderly spouses with a cognitive shift provide scaffolding for each other. In other words— together they are more functional than the less impaired partner is on their own. If something happened to mom, you might see a significant difference in dad's ability to function.

Distance is a huge problem. When dad was diagnosed, I insisted mom move closer to me. Logistically this was a nightmare. I'm an only and it meant selling homes in 2 states, finding an apartment for them and then a house, changing addresses, direct deposits, medical teams. It took over my life for almost 2 years, but I can now meet the ambulance at the ER rather than flying stand-by when the feces hits the fan.

There may be no one-size-fits-both setting in which to provide care appropriate to each along with unfettered access to a spouse outside of putting them in an apartment and hiring 24/7 carers which can be eye-watering expensive.

It sounds like mom is in later stages of mixed dementia. With VD, progression could be quicker and more dramatic than in Alz alone. Given her mobility issues and her feeding issues, she would not likely be accepted into a MCF. While MC will generally allow a PWD to "age in place" (live out their lives in the facility), they do require those joining their communities to be mobile and self-feeding on admission. Some do allow wheelchair use if the residents is used to using one. If you have to move mom because hospice is withdrawn, you may have to move her to a SNF which is considerably more than either an AL or MCF.

It doesn't sound as though your dad has the ability, or the inclination frankly, to continue as caregiver. If he is in the earliest stages of dementia himself, he may already have lost some empathy for mom's situation. I can appreciate wanting to keep them together, but that may not be possible. A CCRC might work, with dad in the AL section and mom on another floor/cross campus in MC. These can be expensive, require a significant buy-in and many have a cognitive screening to exclude residents entering with dementia.

One of the most difficult parts of being an advocate for parents with very different care needs was balancing what was best for each. So often medical professionals prioritized dad, sometimes at a tremendous cost to my mother. They were both elderly. I knew I was going to lose one parent to dementia, but I wasn't going to let it take both. My dad did not have the pleasantly befuddled presentation of dementia and I did not want my mom's final days on the planet to be spent as caregiver. She'd already given it almost a decade of her life.

When it was my family, I encouraged placement which allow mom to go back to her role as doting wife instead of 24/7 caregiver. My only regret was that I wasn't able to make it happen sooner than I did and that I had to threaten mom with "a first available" facility for dad if she died first.

HB

roadwarrior

HB - thanks for the thoughtful insights. I do have all necessary med and durable POAs and a solid rapport with their financial and tax professional. And the attorney that updated the documents.

I've had many unfortunate thoughts on sudden anything with either parent. Every time I've attempted to move them closer some medical crisis, typically her, has occurred. A sign? Perhaps.

They're in an 'age in place' community, but there's careful wording in the contract about it.

Thank you, again.

SusanB-dil

I agree with HB. Sounds like a few things may need to be implemented.

Yes - been there/done that. My folks were in AL, until we lost my dad. Per their contract, mom could no longer stay unless someone stayed with her 24/7. Neither my brother nor I really realized the full extent of how much dad had been scaffolding her. Since the rest of us work full-time, my niece was going to take her into her home, but that wasn't going to work out, as mom had declined farther than we knew and niece has a young family. Brother found a great MC place for her, and for that, we are all grateful.