I have loads of sympathy for the wishes of the incompetent, I just realize that they can’t always be fulfilled.
Sign a power of attorney for one of your children. Odds are decent you will still trust them as you decline, and that will make matters much simpler if they want to put you in a suitable home. It might not hold up if you fight them tooth and nail, but lots of people suffering from dementia still trust close relatives. My mom put her mother into a memory-care facility with her mother’s grudging consent – it was all much easier because my mother had power of attorney. My mother has given my sister power of attorney, and if we need to move her to a place that can care for her, that will be useful. My MIL may be too far gone to sign such a document, and that might become a problem, although she does still trust her children.
So, you’d just abandon your mom?
If you are dealing with a person capable of that level of negotiation, sure. My grandmother got to the point where she couldn’t speak. Literally couldn’t form words.
Do you also oppose grabbing your baby who is crawling into traffic? You are imposing on the child’s autonomy – it WANTS to go there. But most decent parents will physically prevent it from doing so. I don’t think you understand how bad dementia can get.
That’s quite common. If the place is nice, or if the person can’t remember where they used to be after 2 weeks, it often works well.
Again, the person with the husband with dementia is not me. (I’m divorced.) She lives in another state, and I’m not sure what the laws are there. This isn’t the only big stressor she has, and she’s completely overwhelmed. She’s already said she can’t handle a hearing and the wait leading up to it. Just getting the case on the docket can take a long time. I keep thinking there has to be an easier way. I’ll suggest the lie about him having to go in temporarily. A year ago, he heard her talking about putting him in a facility temporarily so she could get a break and visit family, and he blew up. Maybe things have changed.
If I’m ever in that situation, I hope I don’t get resistant about going into a facility. I’ve never been a paranoid or bitter person, so maybe it’s less likely I would be resistant? I’ve already told my kids I want to be in a care facility if I get dementia, and I put a note in with the Living Will, Power of Attorney, and Medical Power of Attorney forms. Hopefully that will do it. Can’t hurt.
Spouses or children cannot assume decision-making authority without some legal instrument or procedure granting them that power.
I don’t think a doctor can order anything of the kind, although a physician’s statement or testimony might well be necessary to have the elderly person declared incompetent.
What is needed here is a lawyer specializing in elder law (yes, that’s a speciality).
I know more about this stuff than I ever wanted to know, because I care for my elderly father, who has fairly severe dementia. Fortunately, he agreed to give me a power of attorney and a health care proxy quite some time ago.
Consulting an elder law specialist is a good idea no matter what. The burden of proof is always going to be on the people wanting to take control of a person’s affairs, and that’s a good thing. It’s fine if he wants to control his own affairs and he can be coherent in expressing that, but he cannot control her affairs. As his caregiver, she is entirely within her rights and her duty to her own well-being to get a break every so often, and to arrange a temporary care situation. He “blew up” at this. So what? Take the vacation. It happens all the time. Genial souls don’t like to make people angry, I get that, and I’m wondering if that has to do with how this elderly man with dementia still commands so much power.
She has an eldercare attorney and is quite pleased with him, but she hesitates to consult him because he (naturally) charges for calls. I’ll nudge her to do so anyway.
Wow, this is so perceptive! She really is a genial soul–kind, gullible, compassionate, empathetic, and easily manipulated. Everyone else in the extended family realizes he’s controlling but her, and she just cannot see it. She thinks he treats her royally. How someone can think this when she’s had to support him their entire marriage and he’s tried to alienate her from her own kids, we don’t know, but he does.
She feels guilty about planning to put him in a care facility, and it doesn’t help that so many people have advised her against it, saying he’ll deteriorate. I think that’s not true, as others I’ve known have done well with the increased stimulation a care facility provides.
“So many people” need to STFU! Unless they are offering to provide respite care, this is a “mind your own business” situation. Period.
In a care facility, the resident typically eats regular meals and takes all medication on time. The resident will get regularly scheduled baths, and encouraged activity. These all are typically major battlegrounds when a person is cared for at home by family.
Finally, the person will be cared for by YOUNGER people with STRONG backs. And this is probably the best argument of all.
~VOW
That’s like not wanting to drive your car because OMG gas. Not much point to having the attorney if you won’t use their services.
I’ve known multiple people who got better when they moved to a facility, including both of my own grandmothers (one had arranged the move on her own before even notifying her children). “All those people” thinking that every old folks’ home in existence is a pale-green-walls version of Bedlam Hospital need to shut the fuck up.
Speaking as an observer on the intake side, our latest hoots repeatedly like a gibbon. Note the time of my post; it’s 5:40AM Central Time and she started an hour ago. I am glad she is not my mom and I have headphones and loud music. And I am glad her family overrode her wishes.
From my perspective, EVERY person w/ dementia was sentient AT SOME TIME. That they chose not to make arrangements for this possibility is inexcusable. Further, each caregiver/enabler bears full responsibility for allowing an elderchild to dominate their life.
Unfortunately, too many people are living too damn long.
I wouldn’t say my grandmother got better. She continued to deteriorate. But there were lots of aspects of the memory care facility that she enjoyed. She liked the food. She liked the exercise class, and the art class. It’s not as if she was going to get better anyplace else.
I found it sad to put her there, but it was the right decision. She had lived in her own, and was no longer capable of doing that. This was a safe, clean place and she was reasonably happy living the remainder of her life there.
To clarify, the people we’re discussing are people that someone thinks are no longer capable of understanding the consequences of their actions.
I do get that this does, in fact, happen.
But the people who think it has happened in any particular case are not necessarily correct. Nor is understanding of consequences akin to a light switch, where you either do or don’t have that capacity any more.
Generally speaking, by the time your upstairs gears are slipping badly enough that this conversation is relevant to you, you probably don’t have a lot of future and/or quality of life in front of you to jeopardize through the making of a bad decision.
And in light of all of the above, but with particular attention the last paragraph, I reiterate: autonomy is a more important consideration than safety or physical risk concerns; substituted judgment is necessary sometimes but to the extent an individual can express a choice or a preference, that should be honored.
I’m not being dense. I comprehend that a fundamentally incompetent person may make a choice that they don’t understand, invoking consequences that they didn’t understand or expect. People tend to think they need to protect such people from doing that. In order to save them from what, and for what, exactly? You’d strip from them their option of making that (bad) choice and in doing so, you likely do them an injury. You frustrate them, you make them feel imprisoned, infantilized, thwarted. But hey, because you intervened they can be protected from endangering themselves so they can have more such experiences? So they can look forward to years of the same? Perhaps you protect them from a physically unpleasant experience that includes deprivation and pain as well as risk of earlier death. Is that likely to haunt their memories any worse or for any longer than the sense of being stripped of autonomous choice?
Dementia sometimes seems like it is turned off and on like a light switch. F’rinstance, I heard my gibbon lady talking seemingly lucidly, then a few minutes later she was doing what sounded like tropical bird calls.
You’ve never been placed in the situation of being a caregiver, have you?
My great aunt, who suffered from severe balance and short-term memory problems, but only minor judgement problems, was very frustrated to be trapped in a facility that stripped her of her autonomy. And if I’d had the capacity, I would have taken her in and cared for her in my home. My grandmother, who lost her judgement as well as her memory, was happy to have people she trusted take care of her.
Both lived for several years in those facilities, by the way. It’s not as if you are talking about “what shall they do for the three remaining months of their life?” It’s also not as if they only person they might hurt is themselves. If, for instance, you walk into traffic, you could well be responsible for a third party to be killed when a driver swerves, trying to avoid hitting you. If you leave a pot unattended on the stove, you might burn down your apartment building. It’s not just about grandma not taking her pills.
Sometimes, having a designated guardian is a good thing.
My mother had “slipping gears” towards the end of her life and you’re correct, it wasn’t a “flipped switch” situation. Mom clearly had some capability to make decisions and definitely could express her desires (she has vascular dementia rather than Alzheimer’s - particularly in early phases there are significant differences). But, because of the word “dementia” in her medical records her pleas to leave the hospital and go home were largely ignored because, ya know, she has dementia and isn’t competent to handle her affairs and didn’t know what she was talking about…
Well, Dad (and a couple of others of us who were present at the time) sat down with her and talked to her awhile and asked her if she know what going home would mean. And mom said yes, she was going home to die but that was alright because she was tired of pain and fighting and being sick and getting worse. She wanted to go home where it was clam and quiet and no one poking at her. She might not have been competent to handle, say, the family finances anymore but she definitely had an opinion and understanding of consequences.
So Dad took her home. As I was unemployed at the time I moved in to help with the end of her life and the rest of the family pitched in to cover my rent and food bills for my spouse (who was back at our home taking care of that). Mom died at home, peacefully, as she wanted. And a LOT less agitated than she had been at the hospital.
So that was a case where having someone designated as her guardian worked out well.
But not every story ends that well. Frankly, not everyone can manage to safely care for a disabled person at home, especially if that primary caregiver is also elderly with health problems.
The biggest problem is sending someone to facility and not checking up on them. People who end up in those places but have someone visit every day, or multiple visitors, are going to do better because someone is watching the facility and staff. Still isn’t going to be wonderful, but then, it’s not a situation anyone volunteers for, as already pointed out.
It makes sense she’s treated royally, if he is King. It might be a sign that this person really needs a break from her spouse, but she has no authority in the relationship and would need her spouse’s permission to do that. That’s why she hasn’t gone anywhere. Which is not by itself a matter for the court, it’s a medical route (Respite Care) in which community services can assist (Council on Aging, Elder Services, etc.)
It’s a smaller but important battle getting this kind of person to prioritize their own needs over that of their spouse, and in the face of hurt and rage. This is where the adult children usually come in and start managing things, but apparently that doesn’t exist here and it looks like she is kind of casting around for people to tell her what to do. You can’t hurry the process through the courts, but you can give her, right now, the assurance that she needs to take time away from him, for her own sake, and that there are ways to make that happen.
She has looked into respite care. She is in a fairly rural area, and respite care is limited. Care facilities that DO offer respite care do so only on an as-available basis, which means she can’t plan ahead to make plane reservations. But that’s moot because he’d refuse to go into such a facility. There’s a dearth of in-home caregivers, too. She’s gone to the Council on Aging–the only such service in her area–and they were no help. (That amazed me. Isn’t that what they’re there for? But I guess they can’t recommend services that don’t exist. She’s inquired at her church, too, but no luck there, either. It’s a lot to ask someone, even with compensation, because he’s incessantly asking questions and having hallucinations, and of course, he sundowns.
I used to think those services were readily available if you knew where to look, but it turns out, not so much–in some areas, anyway. I don’t know what others in that area do to cope. Drink a lot?
He’s alienated all his kids to the point they’re no longer on speaking terms. (This is a second marriage. No kids together.) She’s tried approaching them, but they refuse to respond. He’s alienated the rest of the family in one way or the other, too. Ironically, while he can’t recall who SHE is, where he is, etc., he still remembers and rails against everyone he’s ever alienated, so she’s reluctant to allow anyone to travel to her state to provide respite care. The time she most needs a break is in the evening/overnight, and that’s an even harder time to find anyone.
Believe me, we’ve all given her loads of support and assurance and will continue to do so. We’re talking a total of many hours a week for the past couple of years. And she knows she can call any of us at any time. Her inclination has always been to sacrifice herself for others, and he’s had her so thoroughly buffaloed for so long that it’s been a very long, slow process. We love her and worry about her and won’t give up.
He needs to be in a facility. The question now is how to get him there.
We’re not there and we’re not living her life, so no judging, but it has to be more about his need to be in a facility and less about her need for him to be in a facility, or else people start backing away. It’s a serious matter with a huge potential for abuse, and reading that there is an urgency, and resistance, and the legal process takes too long, etc., puts us right on that line. Maybe the real question should be how to extricate her from this asshole she married. That’s fine too, but it’s entirely different.
