My mother-in-law has Alzheimer’s. My father-in-law insists on handling it himself. What do I do?
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Dear Bintel,
My 88-year-old father-in-law is still working as a business strategist and counsel, and is cogent and has a sharp mind. He is the sole caregiver for his 85-year-old wife, who has mid to late stage Alzheimer’s.
It is clear that he is overwhelmed and could use a caregiver to help with her daily needs. She’s at a stage where she doesn’t have any retention of current memories and is also confused by where she is and who he is to her, even though she knows he loves her and takes care of her.
He is convinced that he doesn’t need any help. That no medically trained caregiver could deal with her better than he can; that he has nothing to learn about how to treat the issues that might come up as the disease continues to progress. Their two sons don’t seem to want to interfere.
Any advice on what I can or should be doing or not doing? He’s very much with it, but his denial and closed-mindedness is keeping her from getting better care and him from getting some relief.
Sincerely,
Cautious Caregiver
Dear Cautious,
The top line consideration for you and your family should be: what would your mother-in-law want? And then the second essential question: how can you support your father-in-law?
Of course, the conundrum with Alzheimer’s is that there’s a lot of guesswork. We don’t really know what she wants or needs. We just have to do our best.
The hard part is distinguishing between what’s best for her and what’s best for your father-in-law. It’s not that the two are always at odds, but they are very deeply intertwined. That can make decisions about her care harder.
It seems that you, as an in-law, function as support for the support team. You know how sometimes when you watch movie credits and you stay and watch the whole thing, there’s like, “assistant to the director,” and then the assistant has an assistant? That’s you. And that’s an important position.
But you have to remember that as support to the support team, you are not the primary decision-maker, and you certainly cannot fix everything. You might have the urge to, say, create a spreadsheet of all the support groups out there so that you can show up with binders full of information. Maybe that’s not what your father-in law or their children need.
But you can go ahead and make those lists and make those PowerPoints and make those binders. You don’t need to make a big presentation or even show them to your spouse. It might make you feel better to have them. And then maybe in a year or two years, when everyone has the family meeting and agrees it’s time for support groups or other new programs, for different choices, you’ll be ready with the information everyone needs.
In a lot of Alzheimer’s cases, caregiving relatives think that the only choices are to either have the person languish at home or languish in a home. That is very much not the case — there are so many options. So when you say your father-in-law is convinced “that no medically trained caregiver could deal with her better than he can” — that may be inaccurate.
You may not need someone in a lab coat. You might just need someone with a book.
We recommend starting out by visiting the Alzheimer’s association’s website. It has everything that you and your family might need to know about what you can do, how you can help, what to expect, and what kinds of care is available and warranted at what time. There are local resources, too; you can find out where there are chapters in your area that have support groups and that have memory clinics.
You will quickly find not only that there are a lot of resources, but also that you are not alone. And you are hardly the first person who has had these questions. So you also might be able to connect with other folks who are in the exact same situation and find out what they’ve done. There’s no need to reinvent the wheel here in terms of getting informed.
This is obviously beyond the scope of this particular question, but it’s worth pointing out that dying is part of the continuum of life. From the moment we’re born, we start to die. If we treat it as part of the process of life — as part of the cycle — it’s better for everybody.
Jewish tradition urges us not to fear death. We have a lot of practices that we do that never stop reminding us, and not in a bad way, that we’re going to die. They remind us of this cycle of life and the way the community participates and witnesses it. Judaism values looking death in the eye.
So the sooner we can have these conversations about aging and death, the better able we will be to express what we need as caregivers and care receivers and share what we’re comfortable with.
The thing to come back to here is love. You said it: he loves her. She knows he loves her. And obviously you love them.
Good luck.
To hear more of our advice to Cautious Caregiver — including a conversation with Carol Silver-Elliott, President and CEO of the Jewish Home Family — download the latest episode of “A Bintel Brief: The Jewish advice podcast” here or on any podcast platform. Send your dilemmas about Jewish-American life, identity, culture, politics or your personal hopes and dreams to bintel@forward.com, or leave a voicemail at (201-) 540-9728.
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