Finally moving? Last minute jitters

Suzzin

Both my parents have cognitive problems--mom with Alzheimer's, dad with brain damage from a fall and brain surgery. They have been living in their own home, managing pretty well with a lot of support from me (after a very difficult few months), but I am well aware that we are one small step away from bigger problems.

I have been pushing them to move to an assisted living facility. It's expensive! But it's about the same that they have been paying for the caregivers who come every night. My parents don't know what the caregivers are costing them, they would be horrified and heartbroken to be "wasting" that money (although they can afford it; they want to save it to give to me as inheritance which is nice but I have said over and over again that the best thing they could do for me is to move now). Dad has been asking what the new place will cost, and I've been side-stepping saying "not much, we can move your health care mumble mumble and that will cover it".  He thinks even $1,000 a month for a 2 bedroom condo, all meals and activities, on call staff/assistance and PT is way too much (it's more than $1000....).

Most of the time I think I'm doing the right thing, getting them moved to a place that's got many levels of care for what they will need, providing social activities and an adjustable level of care and security. But I feel badly about pushing them out of their home, when they have said they want to stay, and about side-stepping the full cost. The one good thing is that this place is month to month, so we can try it over the summer and see if it works out.

I guess my question is, should I leave them where they are settled, it's familiar, and they have a routine for as long as possible? Or should I force them to move now when they can hopefully still adjust to a new place? And also, does my side-stepping on money cross the fiblet line?

Emily 123

It’s normal to second guess yourself. I continue to, 3 months into my mom’s move, depending on how she’s feeling each day.

I think it’s better to make the move while they can still adapt, don’t you?  It’s likely that they do not have the ability to process how much help they do require, so in their minds they’re doing dandy and there’s no need for a move. However, it sounds like they’re compliant with the plan?  That’s great!  I would try to take the items over to the new place that will make it feel like home, but don’t involve them in much decision-making about the move other than to talk up the advantages. My mom had her POA and advanced directives done before her decline, so I just tell her that her finances are handled like she planned and that we’re all good. 

It took my mom about 6 weeks to get into a routine when she moved into her dementia focused  AL. I visit once or twice a week. You may always have those conversations with them where they talk about living independently, but they need a level of support that will be hard for you to keep providing, so don’t beat yourself up. My mom wishes she was still in Florida, on her own, but has accepted that it’s not a workable plan now that she needs help every day.

May flowers

I agree, it’s normal to second guess... I did it all the way to moving day and probably will for months to come! 

We tried to let my FIL with dementia live as long as he could on his own. In hindsight, he was really at risk and we didn’t know how much until he moved here and we saw the full scale of his memory issues and confusion. There were signs, such as when he tried to fix his toilet and flooded his house, left his oven on (we unplugged it), and used gasoline to clean his microwave!!

Not eating well and sleeping all day triggered the move to our house last year. We decided on moving him here instead of a MC because of covid but seeing how he is doing in MC now, we would love to have been able to move him last year.

In the time from when he moved here (9 months) he went from:

Being able to carry on a conversation and tell stories, to giving one sentence answers

Being able to shower on his own without reminders to needed reminding and clothes laid out

Being able to walk outside without supervision to needing to be watched

Dressing himself with new clothes every day to needing clothes laid out

Turning on, watching TV, changing channels to sitting/staring in a state of inertia unless directed to an activity

Being able to follow multiple step directions to barely following 1 step directions

Being able to heat up food in the microwave and get water from the fridge to needing everything given to him

Being able to express his needs to us needing to anticipate his needs.

So, given all that, I can see that moving him to MC would have been an easier adjustment in some ways. If nothing else, he could have told the staff what he needed. Plus he would have been able to converse more easily with the other residents. He is still socializing and being part of activities but not as engaged as he would have been a year ago.

In other ways it would have been harder, because he was in a state of not realizing he had dementia and probably would have fought the move there, like he did here. It took a lot of coaxing and talking up the perks. It was much easier to move him to MC, he just went with it.

One suggestion I have seen, is to take the LOs to lunch at the facility several times, or other activities, maybe introduce them to some other residents. Some have day care options that they could try.  I am interested to see what others think about this - I could see it going both ways. I think the residents they meet should be at a level they are at or higher functioning.

As for money, we did not talk to my FIL about costs of anything. Money concepts are a struggle even in early dementia. My FIL did not grasp the idea of inflation and things costing so much more. We have just told him his retirement is covering everything, and it is (mostly).

abc123

I think you are a wise and caring person. I also think moving them now is right.

Suzzin

Dad signed the papers today and seems genuinely excited. I have reassured him that he can come back home if it doesn't work out, but my brother and I are pushing them to stay 2-3 months to start. Mom wasn't happy, said "do what you want but I'm not going", but we've got 3-4 weeks to get her to come around. Anyone want updates on my progress? Ha.

Suzzin

Well, that didn't last long. Dad no longer wants to go, wants to know how long he needs to stay at "that place", he will go for a week but a month? No way. He's fine at home, they are fine, they don't need any help, mom won't go and he won't go without her. I'm going to have to fight this fight every day and then some, and it will take what's left of my energy and emotional stamina to force this to happen. And I keep doubting whether I should force them.

They are on their own, 20+ minutes from me. They don't shop or prepare food, but I bring them dinner every day.  They eat potato chips and cookies during the day, even if I leave them food for lunch. They don't take meds unless I call and remind them, and even then dad messes it up half the time. Mom sleeps a lot out of sheer boredom. Are they doing "okay"? Yes, I suppose they are. As long as neither one falls, and as long as I go up every single day to get them food and meds. And clip their toenails. And provide the only social interaction they have. I just feel like, sure, they are fine today, but we are one small step away from disaster.

Fairyland

Can you say you have to go to training or something and can’t visit for x dates,  or their house needs some work, anything, spin a yarn, so they must spend a week in the facility having a vacation? So you don’t have to worry and can get the job done for them. And the caregivers need a vacation and what a lot of money will be saved not getting extra expensive and strange caretakers to fill in.

It’s not fair that you have to do all these things, but probably they wouldn’t see that it is necessary anyway, they are just fine and dandy like all our LO in this situation.

terei

Unless you take charge of this + move them now while they are sill ambulatory, you will be forced to move them after a crisis.   Quit talking about the subject with them.  Make the necessary plans + move them.  After they are there, ‘the doctor’ says they have to stay until he okays them going home again.(Which is not going to happen)

He does not need to know the financial details.  Tell him any numbers that satisfy him.