Downsizing, To Move or Not to Move? That is the Question

@mrmj As someone who is on the list to move into a retirement community specifically because it provides a continuum of care, let me offer:

Who has agency here? In other words, whose decision is this, really? This is a tricky question if your mom is well into dementia. If her issues are entirely or mostly physical, however, it seems to me that it's her choice to make. If she makes an unsafe choice, still hers. If she regrets it later, still hers. If you itch to say "I told you so" later, still hers.

I was the lead remote caregiver for both of my parents before they died, both of dementia, and the only decision I now regret was how long I delayed shifting entirely to palliative care. The rest of it was basically their choices, right or wrong. When my mother hit end-stage dementia, we still tried to make the choices she would have made, based on the person she was when she still had the ability to speak. Could my parents have lived longer if I and my sister and our two step-siblings had made different choices? Maybe. Would they have been happier? I doubt it.

When did we decide that we should treat the elderly as if they are toddlers?

A few practical observations:
-- We had frequent family conference calls, so we were all up to date, which also gave us an opportunity to discuss what was going on. My mother was not on those calls, which left us able to have difficult conversations.

-- None of us cared how much money was left in the end. We all agreed that the point was that it was theirs and for them to burn it. If that isn't true for you, you have another challenge.

-- It is fair to ask her how she plans to ensure she has the help she needs around the house. It is also fair not to let her decide that the solution is for one of you to move in or be over constantly. You have agency, too.

-- Someone needs to have legal authority to make financial and health decisions if and when her doctor decides she is no longer capable of doing so. Those two people need to hold themselves accountable for staying informed, and need to be given the rights and authority to do so. In my case, health decisions were less of a problem than financial decisions, because my mother prided herself on her financial acuity and was unwilling to let go of the reins. But we got through it after she started regularly bouncing checks, with the help of her financial advisor and some understanding bank staff. Whoever backstops each of these functions needs to keep in mind her agency, which is easier if she sees them as supportive and helpful rather than people who cannot be trusted. This can be a problem if the person she wants to delegate each of these responsibilities to is not the person who feels they should have been chosen. It might be helpful to encourage her to confide her choices to a friend, who can have the conversation with the kids. The right friend (or religious leader, or social worker) can be a good facilitator.

-- She will make mistakes and bad choices, because don't we all? If she continues to trust all of you, though, she will come to you for help. If she starts distrusting you (because, for example, you have taken away her control over her life), she won't. Is that better or worse than the consequences of taking control from her? Do you want to be mostly the police and warden, or mostly her children?

-- She may find that one of the mistakes she makes is to isolate herself. You have every right not to own that choice. If she wants to live in a bubble and tries to drag you into it, thereby cutting you off from your own life, don't let her. You don't own her bad choices any more than you own her good choices. That's what agency is about.

-- We all need to die from something, sometime. I would personally rather die (or break a hip) while still in charge of my life, even if it means I die earlier. So tired of quantity of life being valued over quality of life.

Finally: There is no good solution for quality of care, because we have run out of people who want to do this work for what we are willing to pay them. In the end, my father was cared for in an institution, and we paid someone to oversee my mother's care when we hit the stage of 24/7 assistance -- in fact, if she or one of you can afford it, there is an entire profession of people whose job it is to act as independent oversight of care. But both of them lived in the tri-state area and died a decade ago. There is no way on earth my husband and I can expect equivalent home care in upstate New York today. So all you can do is all you can do. (It helps, I'm sure, to be rich. But then, it mostly does.)

@projfan a very important thing I am not sure you mentioned. A person should indeed make the decisions for themselves, unless they have dementia and their decisions could bring harm to themselves or others, I did not notice your mentioning this as you stressed letting a person make their decisions.

@tsch I thought I had mentioned that in my intro, but if not, yes, dementia complicates things.

The place where the challenges of dementia come through most clearly is the issue of medical aid in dying. If I have dementia, and it's incurable, do I have the right to ask for medical aid in dying? Is there a stage in my dementia where I stop having that right? Who gets to decide that my life should be prolonged as long as possible, and who gets to decide when and what kinds of treatment should be withheld even if doing so means I am likely to die more quickly? Should I be treated for cancer if I have dementia? What if I find the experience terrifying -- is a longer life bought with a 24/7 state of fear and terror justified? What if moving out of my house and into an unfamiliar place would accelerate my decline and death? These are very, very hard questions in response to which reasonable, ethical, caring people can deeply disagree.

I think it's important to recognize that at the least, mild cognitive impairment is insufficient justification for someone else to own your choices. I'm just not sure where the line gets to be drawn. And I'm not sure who gets to draw it. It is, however, a great reason to have an honest -- and perhaps ruthless -- conversation with family, friends, and an attorney before there is any question concerning your state of mind; to be very clear about your preferences and expectations; and to withhold the right to make decisions on your behalf from anyone who would be unwilling to comply with those preferences. Don't hand over your health proxy and power of attorney to anyone, child of yours or not, who would make very different choices than you would prefer. Keep in mind that you wouldn't be doing them any favors, either -- just imagine how stressful it would be to have to choose not to do (or do) what you, as the child, deeply believe is the best answer, when that answer is exactly what your parent would not want.

I'm not a professional ethicist (just a person with a deep family history of dementia who has given this situation some thought) -- perhaps someone else is who can bring some clarification here.

@projfan
So the things you write are all important. What is tricky is when does a person with dementia have the ability to make safe and wise decisions. That is why people should appoint a health care proxy before there is dementia complicating things. I am a social worker and I know how difficult it can be when a person is starting to have dementia. The bottom line should always be the safety of the individual or others who may be harmed if their decisions are unwise (such as driving when a person should not.)
Even applying for a conservatorship can be difficult unfortunately, but if done properly a person's wishes should be given as much consideration as possible.

@tsch I agree! Totally we should get a health care proxy before dementia complicates things, and have a conversation with that person about what we would want. My personal problem is that my health care proxy is someone who is the same age I am, which is something I need to put on my list to fix.

And yes, giving up a car is one of the hardest and most necessary things, because we are usually terrible judges about how good we are as drivers in the first place, and as we get worse at driving, our judgment does not exactly get better. The way to find out that it's time should not be by injuring or killing a pedestrian. Or another driver. Or your own passenger.

@tsch I agree! Totally we should get a health care proxy before dementia complicates things, and have a conversation with that person about what we would want. My personal problem is that my health care proxy is someone who is the same age I am, which is something I need to put on my list to fix.

And yes, giving up a car is one of the hardest and most necessary things, because we are usually terrible judges about how good we are as drivers in the first place, and as we get worse at driving, our judgment does not exactly get better. The way to find out that it's time should not be by injuring or killing a pedestrian. Or another driver. Or your own passenger.

Oh my, all these wonderful posts.

I worked for a company who helped families sort through their home's dresser, closets, kitchens, garage and everywhere. This happened when family did not want to step in an do it. We labeled items if the senior knew who wanted it and we specially made sure every piece of furniture and memento that they wanted to keep fit into their new place. I loved helping with that part. So many of those we moved had stayed in their homes as long as they could. Some were forced to move their parents as dementia removed the safety they had in be able to make daily choices. There were most of the scenarios that have been covered above in the posts.
Visiting the communities is so important. The cost on a per month basis needs to be looked at long term. I went to school for Gerontology in 2010. The city of Pomona and Claremont were creating a community with transportation and services that would be able to help seniors stay in their home with help within reach. You may know about the Clairmont colleges. Within that space part of the city there are 5 if not more senior living communities. Vastly different costs.
I reckon i move 600 or more families with that company in California.
We moved seniors into every kind of retirement home. So many high end communities and Sunrise and those in the more affordable range. What i want to add, is that all of you are part of the conversation with your parents. Parents ultimately will want to make the choice for their own life. Staying in their homes is what so many want. We saw prior seniors we moved often. We asked the community directors we checked in with how many seniors have visitors. I think you might now the answer. Never enough for most. In their own homes, they may still have neighbors and friends that will check on them.
Some communities who have activity directors that will keep the seniors busy if they choose. One community in Pasadena has a number of seniors who are on or were on the Rose Parade committee. Movers and shakers in that event. It was fun moving seniors into that space. We moved one good looking single lawyer in and reminded him as others had, that they ladies in this community will be knocking. He said he will be on the lookout.
As centre mentioned all those wonderful items from her family, I most loved the families who came over to Mom and Dad's house and put post it's on all the items they wanted. That will only happen if the parent will let go.
Thank you all for posting how it is for you right now. This is what makes Mayo Connect a place to learn that is safe andf abulous.

@katgob
Hi Katgob: First of all, my son graduated from Harvey Mudd! So yes, I do know of Pomona and the Claremont Colleges. I've been there!
Now a very specific question for you: what method did you find works well for labeling items when they are to go to specific people? Are sticky notes sufficient with the recipients name and maybe phone number on them? Do they stay on long enough? What method did you find that worked for labeling items? Thanks much! and Thanks for sharing your expertise!