Making lifestyle changes in anticipation of cognitive decline

dancsfo

Does it make sense to attempt to make changes in lifestyle very early on in the cognitive decline process? This is in anticipation, as opposed to doing so when required or necessary.

Example: Take over responsibilities for paying bills, home cleaning and maintenance, etc.

Why?

• Let's say you start to take over paying bills when a PWD has reached mid to later stages. Then your PWD/LO will object for whatever reason since you cannot reason with PWD why you need to be doing it.
• If you start to pay bills early enough, such changes may be "imprinted" or deeply ingrained in a PWD's memory that it is understood that it is fine for a caregiver to do that, and will be more acceptable to the PWD.

This is touched on in the memory section of the book: "Understanding the Dementia Experience", but I don't see much in prescriptive guidance of how to deal with it. The book "36-hour day" doesn't directly address it, although it talks about what to do in early stages.

Of course, what I suggested may backfire with a person who is suspected becoming a PWD, but is still in early stages and still capable in some ways. Thus they may object and cling to independence: "Why are you doing this when I can do well on my own!"

I understand that each PWD is different, and even day by day, so it's hard to generalize.

wsugioka

Starting early worked well for me. My mother was quite graceful with very little push back. I let her know (and still do) that I am on her team. I ask her opinion (although that is diminishing r/t her decline).We did POA paperwork, her will, finances and more while she could still contribute and help. SO glad we did. It would be almost impossible to have an easy transition now. Plus it is not possible to predict how your PWD will decline and when will be too late. If you can help early it is to both your benefit in the long run, in my experience.

loveskitties

If you want to be more involved in the earlier stages, perhaps doing it as a "team" rather than just taking it over.

My folks would sit together at the table and go thru the mail...Mother always reviewing anything to be "shredded".

Any bills not on auto pay and all charity contribution checks were done together.

Later on, my dad just collected the mail and mother handled it.

SDianeL

I would do it as early as possible. I took the advise of this forum and my brother-in-law who said get a DPOA as quickly as possible. I told him we were both going to get them done in case anything happened to either of us. Within 6 months after getting them prepared, my DH could no longer read & understand documents or sign his name. I used the DPOA to rent a small manageable apartment, sell our RV & buy a more reliable new car. Some things they may willingly let you do, others they may cling to. My DH willingly let me do everything except get his medications ready in the morning. For months he would have meltdowns because he couldn't do it but refused to allow me to. I bought the daily pill sorters and had them ready. One of his last meltdowns I said that the next time he got frustrated I was going to do it my way. One day when he was in a good mood, I said isn't it time to do the pills for the whole week at once? Surprisingly he said yes. I asked him if he wanted to help me and he said no, you do it. After I finished, he gave me a $10 tip from his wallet. It was sad but sweet. I got him to give up driving by telling him what the doctor said that if he was in a wreck, even if it wasn't his fault, we could be sued and lose everything.

dancsfo

@wsugioka @loveskitties @SDianeL Thanks, as these are all great suggestions and observations.

It's interesting that the time when a person who is on the way to becoming a PWD can make the best decisions on receiving caregiving is when they don't really need the help badly from a caregiver. It's also so helpful that they are accepting of the eventual need, so there's self-awareness.

It's great when you all can collaborate on the decisions as a partnership, and doing so before it's too late to do things properly and together.

harshedbuzz

@dancsfo

I think it makes sense. One of the saddest parts to our family's dementia experience was that both mom and dad hid and denied symptoms for almost a decade. I think early on dad had a sense he was slipping cognitively and proactively made choices to make it difficult to "put him in a home". Both his CPA and lawyer suggested estate planning and POAs but he wasn't having it. It was suggested they look for a CCRC and get on a waiting list in order to have a plan should they need assistance as they got older. They refused.

As a result, we had to scramble in crisis-mode. Mom's very much baby-of-the-family who struggles with decision making. As a result, they had to live with my best-guesses and what's available at the moment options rather than have a say so it wasn't always a great fit.

My late MIL did not have dementia. She was frail and went to live with my BIL and his family. SIL took over everything for MIL which MIL leaned into. She saw as being doted on.

HB

M1

Yes I'm glad your DW is willing to make changes dancsfo. I think that's the key factor. My partner was fiercely independent and refused help in most areas-still does, in fact, even in memory care. I was able to take over bill paying because she was never very computer savvy, and I convinced her (somewhat truthfully) that everyone expected electronic transactions these days. It worked to tell her cheerfully that I was functioning as her executive assistant. But i had to hide the mail and turn off the ringers on the phones to keep her from responding to every solicitation under the sun. She still had a checkbook, and I tore up multiple checks written to animal charities. She couldn't record thess, and never recognized that they weren't being cashed.

The area where I wish she had been more willing to make changes was a bigger one, we live on a 150 acre farm that was her retirement dream and that she developed into a showplace. I might have been able to keep her at home longer if she had been willing to sell it and downsize to something more manageable, but she would never consider it.