This is a really tough situation and you have my sympathy. You should look into caregiver support programs such as CAPABLE. There are several such programs which aim to connect caregivers with community resources such as adult day care programs, and to teach them new skills to better cope with the behavioral changes that happen with dementia. Is she Medicaid-eligible? Sometimes there are state waiver programs that can leverage Medicaid (in addition to Medicare) to pay for these programs. I think Maryland has such a waiver but I'm not 100% sure. Let me know if you have questions.
this post was submitted on 25 Aug 2023
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I forgot to mention - CAPABLE is just one example and IIRC it's more focused on the person with dementia than on caregiver support, so I believe it's more applicable for people with mild impairment. If your MIL is more than mildly impaired, I would look for programs geared toward a caregiver-patient dyad. These are specifically designed to improve caregivers' ability to effectively manage the disease and therefore alleviate some of the burden of caregiving (reducing stress and depression).
I believe 211 works everywhere in the US. Call them (if not call your county's health and human services). They have access to all the health and human services for your county, and can direct you to all the people that can help you. IMO it's much better than blindly calling around to different departments/services yourself. The ones here in San Diego are really helpful, and can tell you about things you don't even know are possible.
There are programs out there (varies by state and county) which will allow you to be paid as a caregiver for your mom. That should alleviate some of the strain of caring. There are also services out there for in house caregiving assistance, which is lower cost than a care home.
County health agency should also be able to provide information on how to get your mom on disability, which opens up a wide range of program options.
Best to contact your county health agency for more information. They will have the scoop on your best local options.
Contact your county health & human services agency. Medicaid might be able to help, I don't think Medicare will.
Is she your dependent?
I know with children (even adult children) you can sign them over to be wards of the state.
Which sounds terrible. But doesn't mean you have to drop out of their lives. They'll get a group home or facility close by and you can go hang out and help them every day if you want to.
It's best to do it early tho while she can understand it's happening.
Start the process for getting Medicaid, as that takes time. Medicare may cover bits, but most will come from Medicaid. State specific programs may exist. I recommend calling her primary doctor and see if they can help you with get home health or getting her into a nursing home depending on everyone’s preference. They also might have contacts for social workers that can help you navigate getting assistance in paying for it.
Can I set up some kind of will so that if I get Alzheimer’s or dementia, my family can euthanize me even if I object? Being a burden like that sounds fucking awful.
my family can euthanize me even if I object?
No.
There's no law that allows killing of the unwilling; even a living will addressing assisted suicide or euthanization due to incapability assumes that you would still consent at the later date, but lack either physical or intellectual ability to communicate that. If you can clearly communicate that you've changed your mind, they have to respect that, even if that changed mind has reduced capability due to dementia.
Your best hope would be to go with assisted suicide while you still have enough faculties to make the decision and execute on your portions of the act.
Well that’s stupid
If you can kill yourself whenever you want, you should be able to kill yourself in advance too
I mean you kid of can with a “do not resuscitate “
It’s actually not stupid, but quite complex.
In the countries where euthanasia is commonly practiced, there are huge ethical discussions about it and the more you learn about it, the more complex it gets. It turns out, that if you get dementia, your personality changes. The new person you may become may not want to die, even if they cannot judge the situation adequately. In any medical situation a no means more than a yes and, in general, that is a very good thing.
I share your opinion that I would rather be euthanized than have my loved ones go through the whole process. But it really isn’t simple.
I understand that concern
I’m saying it would be better for society in general if I could be euthanized against my will if I have dementia, and I really do think it’s that simple. It’s like a trolley problem. You have to make the trolley run me over, so my loved ones aren’t tortured and burdened. We euthanize animals against their will all the time and while it’s very hard, we recognize it’s necessary. I think the same logic should apply, and it’s made easier with prior consent.
Probably depends on your state. CA (and IIRC all the west coast states plus some others) has euthanasia/assisted suicide options/laws in place.
To specifically answer their question: No. There is no state that will allow your family to euthanize someone who currently objects, just because that person, while younger, signed a will stating that was their wish.
And it also should be mentioned that any current “no” voids any earlier signed paperwork about a wish for euthanasia.
In Colorado we voted in a law the allows for physician-assisted suicide in the event of bad health scenarios with no hope of a good life.
I’m not sure if your situation would apply, but there may be some way of declaring Alzheimers to be in that category for you, in a way that would provide the consent for the euthanasia.
But if you with alzheimers is there claiming you don’t want to die, it’s hard to imagine a doctor assisting in your death under those circumstances.
If you wanted to address this problem directly you might be able to rig up some kind of neurotoxin that kills you unless you enter a code whose value is determined by applying an algorithm based on the date. It would be a “forgetful man’s switch” instead of a dead man’s switch. Basically your intact memory would be necessary for your life to continue.
But that would require you to commit to correctly running that algorithm in your head each day and entering the code without error in order to stay alive.
I know here in Canada there are social workers you can reach out to find resources, that may be an option for you. Find a local office and explain the situation to them, there might be programs you can take advantage of.
US hospitals always have a social worker. Reach out to them, they can help you find your options.
Is she on disability? Look into that if you haven’t, at a bare minimum it might get you a little more in her social security check to help cover the cost of her care
Speak to her doctor. Start the process of getting Medicaid ASAP. If it gets bad enough that she needs to be in a care home, Medicaid can pay for it. Ask the doctor about medication Aricept. It can help certain types of dementia, I have seen it be a miracle.
Do not let any doctor/nurse/facility give her any benzodiazepines such as lorazepam, klonopin, diazepam. They often do this to "help them rest" without realizing these work opposite for elderly patients. It can make them restless, irritated, and sometimes violent.
As an interim step between what you're doing now and 24/7 residential care, see if your community has a senior center. They will know local options. Also look into local adult day health programs (sometimes called adult day care).
Depends on your country
I would talk to a lawyer. Not because it’s a legal matter, but because lawyers tend to be very resourceful and tend to know lots of options and their various pros and cons.
I know it’s a weird hunch but it could be worth a shot.
Not sure if this vid will help you, but it's real life experience of carrying for someone who has the disease.
Apparently other people have said it's accurate and helps. I've no connection other than following the creator for his excellent technical content.