Dear Answer Queen:
My husband, B, and I took care of his father for many years, until he died a few months ago. It was hard but very rewarding, and I’m glad we did it. B has a mentally disabled older sister, J, now 61, whom we’ve also looked after for close to a decade; she lives in an independent living facility near us that we found for her. But it’s expensive, and her small trust fund will be used up soon if we go on like this.
My husband loves his brothers, and vice versa, but he resents them for this and is terribly disappointed.
B has two younger brothers, both married. Recently B asked them to help with their sister’s care. He requested that either J live with each of our families for a few months at a time, or she live near each of us (as she does now with B and me) in a place they find, and during that time they help her with medications, groceries, etc. That way she’d be out of the expensive situation she’s in now, she’d have the companionship of her brothers (which she loves and needs), and B and I would get a bit of a break.
J is not too difficult; caring for her is sort of like having an 8-year-old child. But neither of these couples had children, so they don’t really understand about taking care of someone—that you take it on and then figure it out as you go. One of the wives wants nothing to do with J, and both brothers give us every excuse in the world why they can’t do it, none of them legitimate.
My husband loves his brothers, and vice versa, but he resents them for this and is terribly disappointed, as am I. He feels he can no longer count on them. And I fear this situation will tear up our family. Any advice?
Fed Up and Tapped Out
If Mother Teresa and the Dalai Lama had a kid, it would be you. I even love how your ultimate question isn’t “How can we make this fair?” but “How can we keep this from damaging the family?” If you ever figure out how to bottle your level of patience and kindness, put me on the mailing list.
But I’ve gotta be honest here. While it might not be overly difficult for you, a human Giving Tree, to take in and care for an older, mentally disabled adult—lovely person or not, family member or not—unfortunately, that’s not the case for a great many people. For one thing, since they’re not yet retirement age, I’m guessing that B’s brothers and their wives still have jobs, which would mean hiring (and managing, and paying for) someone to care for J while they work. Or, if the wives are at home, they would suddenly become full-time “parents.” No more mid-day yoga, quiet dinners, spur-of-the-moment getaways, weekends to themselves. I know, cry you a river. But if the families resent having J there, they might not treat her with the care and kindness she needs and deserves.
Part of aging boldly is figuring out what we want and need and then getting it, for as long as we can.
Also, I have to add that I don’t think these couples not having children really figures in to all this. Some of the most caring people I know are women or couples who didn’t have kids. In contrast, I, as a mother of two grown children, would be extremely reluctant to take in an older relative, or really, any relative—or, honestly, anyone at all. Why? Because the things that bring me joy and sustenance—solitude and writing, to name two—would be seriously hampered by having someone move into my house at this point. You’re welcome to hate me for that. I can take it! But part of aging boldly is figuring out what we want and need and then getting it, for as long as we can. If people don’t like that ability in others … well, that’s unfortunate for them.
All of this doesn’t, however, mean we get to shirk on responsibilities or not be decent, responsible humans. And just because I understand why your husband’s siblings don’t want to take in their sister doesn’t mean I give them a pass for her care. In fact, it sounds like they’ve taken some advantage of your generosity towards their family over the years. That might be partly because you haven’t seemed to mind your position; as you said, it was “very rewarding” to care for your father-in-law, and it sounds like you’ve only recently asked for a break in caring for J, too. It also might be because of the way your husband is asking for help. Announcing out of the blue (or what might seem that way to them) that they need to step up full-time with their sister for several months, when you’ve been doing it solo for years, probably completely freaked them out. Hence, their pathetic (to you, anyway) excuses.
So here’s how I would do this. First, I would send B’s brothers and their wives a group email written and signed by you and B. Tell them, kindly but firmly, that you need to have an in-person, all-family meeting ASAP to figure out their sister’s care, because she’s running out of money and can’t stay where she is now, and also because you and B need help: you’ve been fine caring for her for years, but you need a break—and it’s only fair you get one.
Avoid being self-righteous, blaming, or bringing in other things, like whether or not they had children. Avoid talking (at least not yet) about how easy your sister-in-law is, though if you’re able to add, in a non-offensive way, that caring for these family members has provided more joy and less stress than you’d anticipated, not to mention a ticket to a guilt-free life once these people are gone, that might be good for them to hear too. But the point should be that J is everyone’s responsibility, not just yours and B’s, and the time has come where you all need to figure out the best way to evenly split up her care.
The Family Way
Given her financial situation, tell them (and you can say this in the email or at the meeting, but I like email because it allows you to choose your words carefully and them to discuss their reactions before you all get together) you think the most economical way forward would be for her to live with each family for part of each year. But barring that, what do they suggest? If they can’t take her in, can they spend money to help her stay where she is and take a turn visiting and overseeing her extra care? Could she move to a facility that’s less expensive and more centrally located for all of you? Could she get a small apartment with a hired caretaker?
Figuring out their sister’s care could force everyone to think about the ways all of their futures might unfold.
These are all questions you need to figure out together, without them feeling put on the spot or you feeling taken advantage of. If you need the help of a family therapist, find one.It would be well worth a few sessions to get this right, since all of your lives and relationships, including your disabled sister-in-law’s, could go on for decades.
Keep in mind that their solutions might differ from yours or how you would do it. One thing about having been fully responsible for J is that you also got to make all the decisions. With their input will come, well, their input. But this is good. In fact, figuring out their sister’s care could force everyone to think about the ways all of their futures might unfold and what their own plans are for long-term care—especially given that none of them except for you has children.
Since I have no official “self-help” book recommendations for this topic, let me recommend The Family on Beartown Road, a gorgeously moving memoir by Elizabeth Cohen, about caring for her toddler son and her Alzheimer’s-plagued father in the same house at the same time, with no partner and no help save her exceptional ability to see things not with fear or resentment, but with grace and beauty and love. And that’s something you, FUATO, have already mastered. I wish you mountains of good luck.