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When to move out of house
Backstory: I am not the primary caretaker of my LO, but seem to be the most knowledgeable of the group (others seem to be sticking their heads in the sand).
My LO is definitely at a point she shouldn't live on her own. Her husband is still around but is a bit (or more) frustrated by her behavior and why can't she just try harder? We all know the answer to that question, but he doesn't. If he's done any research into dementias, he's kept it under wraps. Anyway, he isn't the kind to take care of a house and the house they live in is getting to be a bit much for him to deal with.
I've suggested moving to a continuum of care community (there's an excellent one near them) but that fell on deaf ears. When my husband, brother of LO's husband, suggested the same, he was rebuffed by "change isn't good for her". While I agree that is possible, he also takes trips all over the world that she accompanies him on.
I'm having trouble figuring out why change in terms of traveling is different/better than change of residence. Seems like waking up in a strange/different place every few days would be worse than moving once (okay, probably another move in the future when her DH can't handle the care anymore). Can anyone help me figure out if my view is warped?
So you are the sister-in-law to the husband in this couple?It's really hard to say why your BIL is behaving as he is. Perhaps he's one who is slow to accept the changes in his wife/life companion and is slowly working his way out of denial. Maybe the travel is something that was on their bucket list- a lot of couples where one gets a dementia diagnosis are encouraged by their doctors to try to cram their grand retirement plans into the remaining time where that is possible. My mother gave up a lot when dad developed dementia. I would have liked her to move to a CCRC for the safety and services it would provide, but she saw it as a form of nursing home and wanted no parts of that. Are you part of the care team in terms of providing respite (staying with SIL so he can go fishing with friends, say) or entertainment (taking her out for a mani/pedi and lunch, maybe?) to give your BIL a break?When you suggested the CCRC was it in response to BIL asking for ideas and opinions- or did you just put it out there as unsolicited advice?
I’m confused. Your LO (who’s impaired) and spouse live in a house, together. You say it’s getting too much for him/them. Have they talked about the house being too much? Are unsafe conditions not addressed? Have they asked others for advice or help in finding a new place? Is your BIL not caring properly for your LO, or leaving her alone for extended time? You mentioned they traveled together—which sounds like a positive to me, since travel can be hard IME. Yet they do it, making me think they can handle it (??) it sounds like he/they just don’t want to move yet.
The approach becomes "this must be hard for you, her changes. You both love to travel so much. Is she upset at the change in her surroundings, or is she enjoying the change?"
This opens up the conversation to validate HIM - his potential LOSS, his challenges. You have to work through this, he is the spouse, the decision maker. Only then is change possible.
Her care needs drive the decision making - and he is the decision maker.
Not us - no matter how right we are or what we know. Help him, help her. Don't get involved in a power struggle - people who are placed, adjust. He's not ready to go there yet.
But - you can research and help prepare him, and up the care support.
Thanks, everyone. I think each and every one of you nailed it. He wants to travel and doesn't want to move. He is in a bit of denial, but it making headway. (Finally agreed to get rid of her car. He has been letting her drive occasionally, even though he knows she shouldn't.) It's hard to say how she handles the travel -- she's a very bubbly person who puts on a really good front; no one lets her stray very far away because she'd get lost; she has loved to travel and still seems to enjoy the sights, even though when we get back home, she has no clue where she's been. There is no diagnosis, which helps him stay in his denial. And accepting help isn't his strong suit -- read he doesn't. I will just keep being there for both of them and bite my tongue for now.
I appreciate the resources of this group and having a place to vent.
The very best thing you can do is respite, friendship and kindness. Be a true blue friend. This is an extremely hard thing to go through without support. Point out the good things happening in their lives. Knowing more about this disease doesn’t make your opinions right for them. An important thing to remember is that caretakers are mostly doing the very best they can. Sometimes their best, not yours, has to be enough.
I get suggestions from well meaning “others” with ways to improve Grandma’s life. It mostly just demoralizes me. They fail to take into account my grief, my role as wife, rancher, mother to 5 boys (4 living at home and one in college) and my personal stress level. So I will do my best and it will be just that. My house will not be perfect, my kids can’t do every activity, my husband depends on me more now than he ever has and I’ll struggle to get the most important things done on my list. But that’s ok. The people who have suggestions really should come in and just do a load of laundry, mop grandma’s floor, weedeat the fence or throw some baseballs. Grandma is fed, clean, under medical care, happy and where she wants to be.
jfkoc, love this:
My 2 cents....travel means living, moving means one step closer to death. Moving to to continuing care is a huge slap of reality.
However, once there, it does become home
I have brought up "downsizing" as sort of the hip thing to do. It doesn't have to be a CCRC thought that could be included in the options and is a convenient way to ensure continuity as things change. But there are other ways too.
If the house is too much, maybe a condo?
A transitional step might be to keep the house, or rent it short-term, and try a condo or CCRC without giving up what they now consider home. Then they won't feel this is end of the line and would have time to adjust before giving up the house.
Agreed that since you are not the main caregiver, there may not be much you can do other than support.
I would add that in my mid-60's and good health, I already downsized and got out of my house and it was a huge relief.