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

@katgob
One idea I haven't heard mentioned here that the family of friends used was: After the father had passed away and their elderly mother had moved to a senior living facility, the parents home was to be emptied and put on the market. The four adult children held a silent auction among themselves (with their spouses, I don't know if any adult grandchildren were present or not) and bid on all the items left that their mother hadn't taken with her. That way each adult child had a chance at getting whatever items held specific meaning for them, and the funds went to support their mother. From what I understood after this was completed, there were no hard feelings about "not being able to afford to get something I wanted," or "that you outbid me. " I found it a novel solution to how to divide up the family possessions.

@joanland

We did that with my own family at the end with the most valuable possessions. My younger brother was the executor, and he would put a price on those items, and we paid for our loot deducted from the total we were getting. That gave him more as being the executor Mom gave him a 2nd share as if he was 2 kids. None of us said anything about that as it was our mother who divvied up her estate with 6 kids, but she had 5. Good ole Mom.
I got 2 rings of my mom's i had wanted. I also got her desktop, but sadly, my niece who had lived with her wiped it clean. I was downloaded files off Mom's computer like recipes, comics strips and crafts she loved to do. I did not finish.
My Mom let nothing go before she passed. It reminds me that whatever is in my house, I need to designate who gets what. Throw away those things that are not good, giveaway things I have not used in years. Have left only the items i love. If i collect umbrellas, my younger sister can sell or give them to someone else who loves them.
joanland- Your post is a smart idea.

@katgob I have trouble getting attached to "stuff" - I guess being raised possessing little, and watching my Dad literally give food and his own clothing to a passing stranger has always stayed with me. Many beautiful things reside in my home, or have passed through it on the way to other owners, and I am happy to have had them, but glad they are gone. When someone admires something in my home, they often leave with it. Our children and grandchildren don't give us things, they give us shared adventures and help when we need it. We try to do the same.

We live in 400 square feet for half of each year, and it holds everything we need and more. When we travel, we live for weeks at a time in 100 square feet. Many of my friends live permanently in 200-400 square feet, and swear they don't miss being tied to possessions.

When I come home in May to 1200 square feet, it seems enormous, and nearly every summer we spend time deleting possessions to make our eventual demise easier for our kids. When cleaning house, I offer things first to my kids and sister, then it either goes to charity, the local Buy Nothing site, or to people I know will use and appreciate it. My Mom and Dad did the same - all the way from the "big house" where they raised us 6 kids to an efficiency apartment at the end. Mom still had her small hutch, with her most prized pieces, but nearly everything else had already been given to kids, grandkids or charity. In the end, it took 4 of us less than 2 days to take care of everything. That is my goal.

@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.