Resisting Move to Assisted Living

moore3

Dad has Alzheimers and Mom is wheelchair bound. They currently have 8x5 home care. It's becoming harder Dad to care for Mom when home care is not there. However, Dad doesn't realize this and thinks he's doing a "good job" taking care of her. Gets very defensive.

Took them on tours of AL yesterday. Mom is willing to move, actually looking forward to more social opportunities. Dad is digging his heels in and refuses to move. Doesn't ever want to leave his home. Mom threatened to move without him and he just said, "Okay. I'll visit you during the day." Which is surprising given he has always been so attached to my mom. Then he forgot about the tours and conversation.

I feel like we went about this the wrong way, but we have never had to go through this before. We don't know what we are doing and we are at a crossroads. We could increase home care some, but it's becoming cost prohibitive. And we worry if we wait too long, they will be separated and AL will not be an option. Is there anyone out there that can provide consultation help in these situations?

M1

welcome to the forum. Do you have durable power of attorney? Hopefully you do, which gives you the power to make the decisions. With this type of move it is best to just do it, with no discussion at all with the affected loved one (your dad). You just go on the day of the move as if going out to lunch, then let the staff take it from there. Hard for sure, but best course. The remainder of the tasks regarding selling their house are all postponed until after the move.

Quilting brings calm

you invent a reason for the move too….repairs on the house that will make it uninhabitable for a while.

‘This is temporary dad until mom can walk or until you can …. Whatever

harshedbuzz

@moore3

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

I agree, you didn't go about this in the best way. It's a common rookie mistake we've all made trying to engage our LO with dementia in decision-making. It's so easy to do given that they look and sound like the parents we were trained to honor. Sadly, once dementia impacts their brains, more than memory is impacted— there will be significant losses in empathy, ability to reason and executive function. And complicating that will be anosognosia which is a condition in which a PWD is unable to appreciate the ways in which they are now impaired. This is to say, he doesn't know what he doesn't know. In his reality, he is a splendid caregiver to your mom same as always.

To be blunt, I initially got confused when reading your post and had to take a second stab at it. The piece that tripped me up was you referring to dad as the caregiver in this dynamic. It doesn't sound as if that arrangement is sustainable— your mom (or perhaps you) is now his caregiver in the sense that she is the sole decision maker even if she has to delegate the hands-on aspects of his care to those who are more physically able to do the work.

It would probably be helpful for you to reframe the situation so you can best anticipate the level of care they'll each need going forward to make sure you don't have to move them more than necessary. Your mom will need to accept that she no longer can rely on dad as her caregiver. There have been a couple other posters here in situations where the PWD had long been the caregiver to someone who was dependent on them. In every instance there was a learning curve and adjustment period to the role reversal or someone else taking over decision making. This seems to happen when a wife with something like a mobility or vision issue relies on a husband for assistance in IADLs/ADLs or when a mom who'd been taking care of an adult child with a disability is no longer up to the task and a sibling needs to step in. You might see this as well.

In your shoes, I would plan the move with mom and manage all the logistics behind his back moving him once the unit is set up. FWIW, I did this with dad twice the second time putting him in a hotel room for the weekend while we scrambled to accomplish the move. Later when we moved dad into MC alone, we created a narrative that it was private rehab on doctor's orders until he was stronger. In moving both, I would create a fiblet about staying at a senior apartment while termites or a busted sewer line is dealt with. Rinse and repeat.

In touring, I would be very frank with the person touring about the needs of both parents. A hospitality-model AL might not be any different than them living where they are now except that meals and housekeeping are generally included. There may be medication management and some personal care around hygiene and dressing included or at a nominal fee.

The possibility exists that this set-up won't be workable for long, so I would only tour places that have a good MC unit on campus as well a more hands-on Personal Care in case mom needs more at some point. At some point, being in the same unit might not be possible, but being on the same campus for meals and activities is nice. While mom would likely benefit from the activities and amenities at a CCRC, dad might not be well-included by those in AL. IME, the residents of AL can be somewhat exclusionary of those who've had a cognitive shift and can't keep up with conversations and games or who are socially unfiltered. My aunt was bullied by some elderly mean girls in an AL that wasn't high acuity memory care.

Good luck.
HB

Smilescountry

I am so sorry. While you might have made some mistakes, it is good that you are looking for care for them. With my experience, it isn’t easy finding a place where both parents can find the care that they need and still be together. We only found one place in our area for my parents, and they love it. It is in a part of town where my parents grew up, close to friends, and full of people they know. It is AL, but offers more than most AL places. In fact, almost everyone there has dementia. Mom and Dad, married for over 70 years, have rooms next to each other, giving them each their own space but allowing them to socialize with each other. While the facility does not accept people with advanced dementia, it does allow them to age in place, with a few restrictions, even if their mild to moderate dementia worsens. My parents would not survive being apart from each other, even at a facility that has different buildings or wings for different needs. The few times that we have had to take Dad to a hospital have been traumatic for both! I understand the advice to tell fibs, but that doesn’t work with my dad. As advanced as his dementia is, he can detect a fib immediately and will let everyone know! I have found it better to be matter-of-fact, but creative, with him. I got Mom in from the start, and she and Dad came up with a list of places for us daughters to check out for “the future.” One of their choices was very good, so that is where they are. We did it as a three month trial. My brother-in-law decorated the rooms with some of their favorite things. Mom’s room has a sitting area, while Dad’s has a table and chairs. My brother-in-law was so good at decorating that they felt right at home from the start, and when there are tours for potential residents, my parents welcome this people into their rooms!

moore3

I sincerely appreciate all the detailed comments and recommendations. This forum is amazing! You all have a lot of great advice and we will frequently consult this post for our next steps. We are currently asking the AL/MC place a lot of questions and working with a lawyer on their DPoA docs (they need to fall to kids, not spouse). Personally I will have a difficult time with "fiblets" but may have to rely on "doctor's orders" in the near future. The current plan is we move Mom in the hope Dad will follow. Or we come up with a reason he has to stay "a few nights." This is sooo difficult 😥