Advice on changing living arrangements

sandyeigo

Hi, I’m new to this forum and have recently taken on a role as caregiver for my MIL who was diagnosed with FTD about 4 years ago. My husband and I have temporarily moved into her home while we prepare our own home with some improvements with the goal of moving her in with us upon completion. Up to this point she had been living alone and symptoms might go unnoticed or seem minor to the casual observer but she recently stopped driving, which was a family decision and not voluntary, has not been cooking for herself for quite some time, is unable to follow an unfamiliar sequence of instructions without supervision, had been experiencing a lot of disorientation particularly in mornings, as well as some confusion surrounding hygiene such as when to bathe, what products to use, etc. Since being here I have worked a lot to get her on a consistent morning routine which has greatly reduced the morning anxiety, and have been doing my best to find inclusive things to keep her busy. Bringing her on errands, involving her in meal prep, and just being present. I feel like she has benefited from the daily interaction, but my DH and I are concerned that when the time comes to move back that she will be resistant to moving house. Admittedly our home is very small. Only 2 bedrooms, and she has been living in a 3 bedroom home alone for the last 6/7 years since her husband passed. Moving house will require significant downsizing. Along with a lot of initial disorientation after moving. She has spent the night in our home in the past with no issues but it was always a temporary arrangement. Any advice on how to approach this transition would be greatly appreciated.

SusanB-dil

Hi sandyeigo - welcome to 'here', but sorry for the reason.

Good that you are watching out for her. And yes, getting a routine does seem to help a lot.

When a lot of folks move a LO into a care facility, they just 'do it'. You do what needs to be done to just move her to your home. If you do get pushback that she wants to go back home, you could probably tell her that you are glad she is here and that the house is being worked on.

terei

My own experience has been that my mother had less + less interest in her surroundings + living arrangements as time went on. As caregivers, I think we have a tendency to project our own feelings onto the LO (oh, this is so small compared to, etc). Also I would warn you that downsizing possessions is best done with as little input possible from the PWD.

It is difficult for them to make decisions, discard things etc. You may not make any headway at all if she has to make choices about what to take or not take.

Emily 123

My suggestion:

Remove her from the process. From what you describe she doesn't have enough short term memory left to be able to make decisions—as with cooking and bathing, you need to be able to hold two or more ideas at the same time for that. Unfortunately that's slipped away from her now. Asking her to make decisions would be a challenge for her.

Stealthily move what she needs to your house. Tell her she's visiting when she asks. As terei says, she's going to be less tethered to her environment and not have a good sense of the passage of time—one day blends into another because there's no ability to retain information from one moment to the next.

housefinch

I’d also get legal advice about paying for long term care if possible. FTD is an extra challenging disease, and no one would fault you for outsourcing her care whenever you reach your limit.

sandyeigo

Thank you everyone for the advice, it makes sense especially about making decisions. Her current living situation is actually a move she made about 6/7 years ago to downsize her living situation after her husband passed away. She had not yet been diagnosed and decisions were extremely challenging then. It is difficult for me to gauge at times how much she is remembering and aware of what is happening day to day. There are times where she seems so confident and engaged in what is happening and my goal has always been to try and have her be as involved as possible. Perhaps there is also some guilt among her family as the previous move was made against her wishes but was a financial necessity. There was a lot of push back and guilt heaped, especially on my husband. I guess we were trying to avoid a repeat of that situation but we are aware that we may have no choice.

Emily 123

Yes, my mom lived with me for 9 months and pretty much thought she was visiting for a weekend the whole time.
Family that isn’t on board are a pain. It sounds like you’re doing an amazing job!