She gets social security, and we don’t have a lot of money ourselves and are no longer able to be with her 24/7. We are in Maryland, and are scared of what we can do. Will her medicare do anything? Is it too late for something like long term care insurance? We have no idea where to start.
Thanks for any insight.
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.
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).
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.
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.
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.
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
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).
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.
Depends on your country
