Dementia, part N.

[mme_hardy]

It has become clear that my parents stayed in the lowest step of a retirement community far, far longer than they should have. My mother concealed my father's dementia. My parents refused all offers to move to the next step -- a completely independent apartment -- long after they were incapable of caring for themselves in a duplex. My widowed mother continued to refuse all offers until she wound up in the dementia ward with hallucinations -- which have been cured when her medications, hydration, and food intake were supervised. She continues to insist, in the dementia ward, that she is capable of moving back to their house, and refuses to move to an assisted apartment.

My husband, bless his heart and I mean this absolutely seriously, thinks there Ought To Be A Solution. It ought to be possible to move people where they need to go. We need to make plans so we won't do this to our children.

And the thing is, it doesn't work that way. Power of attorney, and the nursing home's ability to force change, are a binary. Is the person capable of making legally binding decisions yes/no? And if they're capable of making legally binding decisions, no matter how self-sabotaging or how stupid, you can't protect them. The nursing home can't move them until they are demonstrated to be incapable. The children can't move them until they are demonstrated to be incapable. And we couldn't take away the car keys until either the Indiana BMV did it, or until my mother became so legally incompetent that we had the right. The car keys are hidden now; my mother's best friend has my mother's driver's license. And that's only possible because we have my mother's POA and her lawyer agrees that she's demented. The ultimate irony here is that my parents moved to the multistep retirement community to save my brother and me the agonies they went with their parents.

My husband lucked out, after a fashion: his parents were willing to move from step to step as it became necessary. Soon after they moved to the independent apartment, his father, rest his educated soul, developed Parkinson's. A couple of years after her husband died, my mother-in-law, who had always disliked driving, gave up her driver's license and her car. To be fair, she is fiercely annoyed by the next next step, in which nurses aides show up regularly to check her insulin and make sure she's safe.

I hope, as an aging mother, to behave more like my in-laws than like my parents. I hope -- very much hope -- that I am neither so secretive nor so fiercely independent as my parents. But, you know, I inherit my mom's (and my dad's) bossiness, and who knows how aging further will treat me.

There isn't a settled solution to dementia. Up until the point where it demonstrably happens, you can't override a competent parent's decision. And after it demonstrably happens, you may have a fight on your hands.

I would say "hope I die before I get old", but I'm sixty. Love you, children. Hope I'm more reasonable when aging further than my parents were.

Comments

[sara]

My Nana managed to cope with all this gracefully, but my other grandparents sure did fight it.

I have already warned the kids that I'm afraid I'm going to be just terrible about giving up the keys, and even more terrible about living somewhere that other people can come in my living space without my invitation. I just can't imagine I'm going to be reasonable about that even though I know it would be easier for everyone.

[sabotabby]

My grandmother fought bitterly against being moved and then basically starved herself to death over the course of a year. She was physically fragile—hence needing to move her—but mentally with it until the end. It was brutal.

[em_h]

So far my family has been pretty lucky, and my mother is still not only quite together mentally, but also cheerfully rational about the process, has signed the POA papers long before they're needed, and insists that if she develops dementia she wants us to put her in the cheapest and nastiest home we can find and just leave her there. (Obviously, we are not going to do this). But there's no way to know what the next years are going to bring.

One of the longtime church volunteers is currently at that dangerous point of being not really competent but probably not legally incompetent, and the only family member involved is one daughter who lives in the States, so we're struggling with that, too. We had to take her church keys away from her last weekend, after she started letting herself in at odd hours for unclear reasons ...

[oracne]

I'm sorry you're dealing with this.

[telophase]

Great sympathies.

My paternal grandparents resisted going to a retirement community for too long, even after my grandmother fell and broke her pelvis. Once they finally went, it shortly became clear they needed more help and were in the process of having two single rooms in the assisted-living section made into an apartment when my grandfather died. And then over the next two years my grandmother moved into three different nursing homes.

The first one was in her home town, and she hadn't realized that it was going to be lonely because her friends were all too old to visit a lot and her kids and grandkids weren't going to be down every week like we all did during the months my grandfather was failing. The second was in Austin where one of her sons lived with his family, and she hadn't realized that they weren't going to put their lives on hold and visit her constantly, and they traveled a lot (two kids just graduated college living in different areas of the country). So she ended up in Houston, where my other uncle and aunt live, and their kids are all older and mostly settled in the area nearby, so someone was visiting her every day, and she could go out for lunch and go to various relatives' houses to visit. She then wouldn't allow herself to admit that the family didn't have the ability to care for her overnight and got upset because she couldn't spend full weekends out. I can sympathize--it would be nice to feel at home--but she needed trained assistance and medical care that the family couldn't provide. She died about a year later, upset about her situation to the end.

I think the reason my mother recently set herself up at a retirement community that offers assisted living and memory care if you need it (you buy an apartment in the retirement section and you go to the top of the list if you need one of the other two) was that she didn't want to put me through all that. Toby and I have resigned ourselves that if her health deteriorates, we might be getting a small apartment in the town for a time to avoid making the three-hour drive a couple of times a week. (It's a college town: hopefully we can find a small apartment.)

(My grandmother was actually my step-grandmother; my grandfather married her about the time I was born, and my uncles are from her side.)

[mme_hardy]

> I think the reason my mother recently set herself up at a retirement community that offers assisted living and memory care if you need it (you buy an apartment in the retirement section and you go to the top of the list if you need one of the other two) was that she didn't want to put me through all that.

This is exactly what my parents did, and for exactly the same reasons. When push came to shove, they didn't admit that they needed it.

[telophase]

I'm hoping that it all works out OK. Dementia doesn't seem to run in my family, although that's no guarantee, but she does have a habit of arranging things for herself or dealing with doctor's appointments without telling me until everything's over so ... yeah.

At least she already moved out of her house and did the hard work of packing up and selling things off, so there's a smaller subset of objects for Toby and I to deal with in the eventuality. I don't even want to think about my in-laws or the extended family on that side, though. Toby and his brother have a compact to go down and change the locks on their parents' house immediately should they both go suddenly, to prevent people from carting items off, and I think that may just be the start of family issues regarding end-of-life.

[nestra]

I am just going to close my eyes and go LA LA LA and hope that any potential issues my parents might have are magically cured by the international medical community before they become an issue.

Their house has stairs. The entire living area is on the second floor. They will pitch an almighty fit if anyone tries to make them move.

[ironed_orchid]

My mum was looking for a new house when she was 63, and I kept vetoing any that could only be accessed by steep steps or had lots of stairs inside, mostly because I'd seen how much trouble it was for my Nana to get down the few steps from her verandah when she was using a walker. Mum ended up with something that has a couple of steps on the front porch and a flat path to the back door. She is mobile now, but no one is getting any younger and if I ever move it will be to a single story dwelling because my knees already creak when I go upstairs at night.

[garpu]

I'm seeing my in-laws go through this with my MIL's parents. They've been deemed competent...but they really need more assistance than they're accepting and from people other than my in-laws. But you can't make them take a home care aide, and they keep refusing when one is sent.

[coffeeandink]

I'm so sorry. We're currently having similar problems with my mom-- not quite the same, as my mother is much less able than yours and I think would be relieved to be in assisted living/memory care, but my dad is extremely resistant to admitting how bad it is or making changes.

[ankaret]

I am so sorry. It must all be wrenching. If you want an early copy of Anna Chronistic to distract your mind a bit, the offer is there.

[movingfinger]

Mom is still in the Big House that she and Dad built. It was designed to be accessible, but it's hard to get services, and harder to get her to admit she needs them. But she still knows exactly what's what and it is only the stiffness of that one bad leg keeping her off the ride-on lawnmower. Although, you know, legally blind.

I don't mind her keeping all her stuff that she loves. It's her stuff and it's full of memories.

Her mother's health and trajectory were far different, in part because diabetes treatment has improved so much. Leaving out my grandmother and her sister, the rest of the family has a tendency to live to 100-plus and keel over doing farm work. Mom's older sister was (reluctantly) moved to a care situation last year and is still sulking about it, but she was leaving the stove on and forgetting bills.

[howlgirl]

My mother has some flavor of dementia, and I've become my father's sounding board and coalmine canary. When you live with a person and you deal with the incremental changes, it's much harder to step back and say, they could do this last month, and now they can no longer do it. In my mother's case her issues become more and less prominent in waves. I visit periodically (they are in Carmel so it's a few hours drive) and part of what I do when I'm there is check in with my dad. Is mom better now that 3 months ago, 6 months ago, etc. It's possible your mom didn't realize how bad your dad was, until something significant happened.

[mme_hardy]

I didn't mention this, but in the last few years Mom and Dad attended a dinner party, and Dad fell asleep at the table. Not unusual in your eighties, and nobody thought anything of it.

My mother took her best friend aside and said, "Now everybody knows about Hal."

So she knew.

[melita66]

I am sorry. It's terrible, isn't it.

My paternal grandfather keeled over before I was born. My maternal grandmother went senile when she was in her early to mid-90s. My dad tried to help her stay in her apartment but finally my mother told her off and she agreed to go into a retirement home. She lived almost to 101 but was gone, really most of those years.

On the maternal side, grandmother died in her 80s from long-standing medical issues. Grandpa tried to stay in the house but ended moving into my mom's. He had alzheimer's and became combative and paranoid. They found the right medication finally and he became his jolly former self again. They moved him into a memory care facility and finally died at 94 or so.

I'm the one whose dad fell and died within 3 months--a blessing. He was in his 80s. He really should have been in a care facility but dad-gum-it he was not going to move out of the apartment he'd been in since the mid-60s or away from his friends (to come live with me).

My mother seems to be having memory issues, luckily her husband is around 10 years younger. I'm across the country and my company doesn't believe in working remotely unless you're a fav of the right manager...at least that seems to be the case based on who gets approval to work remote. I *might* have enough pull to do it, but my partner would never want to live in Ohio. Too much snow and cold for him.

I hope that I will be more reasonable when I get older. We have a big old house and orchard. At least my partner agrees that we won't be able to keep it up when we get older and will have to move.

I'm sorry to dump on you (and everyone else). Thanks for listening.

[ironed_orchid]

I'm so sorry you have to deal with this.

Dementia has always been one of my nightmares, the idea of losing myself. But I am starting to worry more about my mum now, partly because her relationship with reality is fairly idiocentric at the best of times so how would we tell. My dad is healthy in his early 70s, but he is stubborn and independent and I don't think he will deal well if his health fails. He has talked to me about dying with dignity (which is not legal, but there are groups here working to change the laws), and wanting me to be executor of his will.

[sovay]

*hugs*