Care and Feeding

Making a Hospice a Home

Can end-of-life care coexist with healthy family life?

Two small boys look sad in front of a hospital bed.
Photo illustration by Slate. Photos by Thinkstock.

Care and Feeding is Slate’s parenting advice column. Have a question for Care and Feeding? Email careandfeeding@slate.com or post it in the Slate Parenting Facebook group.

Dear Care and Feeding,

I am an only child to a mother who has been diagnosed with a terminal illness. My wife and I would like to put her in some kind of out-of-home care, but we can’t afford it. The most we can manage is in-home health care, essentially hospice, which is covered by her insurance. For a variety of reasons, my mother can no longer stay alone in her home across the country, and it would be best if she came to live with us and received this care in our home. Her prognosis is six to 12 months.

We have two kids, ages 3 and 5, and we worry about the impact of this experience on them. Will they be traumatized or horrified by seeing the end of life? Will it put too much stress on the household in general? They don’t really know their grandmother too well, as she has lived across the country for all their lives, so I also worry that they’ll be uncomfortable suddenly having this strange person in their lives. My wife is supportive but thinks it’s going to be too much. I think it’s my responsibility as a daughter, and it doesn’t matter if it’s too much. What do you think? Is it a mistake to let my mother come live with us and to expose my kids to end-of-life care?

—Too Much Family?

Dear TMF,

I don’t know if it’s a mistake to expose your kids to end-of-life care. But I know that at this point it doesn’t matter. What option do you have? You are an only child, and you cannot afford to put your mother in a facility. You’re not going to leave the woman to die on a sidewalk. You don’t mention that you have a particularly nasty relationship with her that would make your cohabitation even more traumatizing, so my guess is you don’t. The factors are pretty straightforward. It is becoming increasingly unpopular to say so, but I personally agree with you: Barring significant abuse, it is your responsibility as a daughter to support your mother as she has supported you. End-of-life care is draining and overwhelming. Losing a parent is absolutely devastating, and doing so while parenting your own children will, at least in my experience, probably be the most emotionally wrenching thing you will ever experience. And yet it’s what you will do.

I was once listening to a radio program where a combat veteran was interviewed, and he said the biggest thing he learned in war was to “embrace the suck.” The phrase stuck with me. When I remember the year that I spent with my own dying mother living with us, my toddler children crawling and creating messes everywhere, our finances struggling, our marriage hanging on by a thread, it was, to put it mildly, horrendous. But if I could go back and give myself any advice, it would be that. To embrace the suck. I was trying to get it to go smoothly. I was trying to avoid discomfort or pain. And as a result, every moment of difficulty was doubly hard. It hurt and, because I was trying to get it to not hurt, it hurt that it hurt. I now realize that I was like a person standing in a monsoon trying not to get wet.

And yet, like you, I did not have a choice. So, we do the best we can. We learn to appreciate the moments that were wonderful because they were there too. Sitting with my mother on our porch less than 24 hours before she died, listening to birds. My daughter sitting in my mother’s bed showing her pictures she drew. Holding my mother’s hand at the very end. Someone told me that year that we die the same way we live and that the process of death is just like the process of life. Sometimes painful, sometimes wonderful, often mundane and boring, and overall completely unavoidable.

Tell your partner that you will need her support and understanding and not her judgment. Take responsibility for the fact that this is what you want to do and that you will do it. There are loads of resources for talking to children about death, but mainly I would advise: Never judge their questions. Be honest about your own feelings. And be prepared for any reaction from your kids, from disinterest to grief to anxiety. Expect the conversation to go on for a long time over many months or years, well past the time your mother leaves you.

Whatever judgments you have of your mother or yourself, let them go. She is at the end of life, and she needs someone to hold her hand. You are facing an arduous task, and your reactions will be varied and unpredictable. Be patient with yourself, and seek help from friends, therapists, and—most especially around physical issues—the hospice staff, who know a lot more about taking care of your mom than you do.

My thoughts are with you, as is my heart.

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Dear Care and Feeding,

My 11-year-old daughter is returning from overnight camp next week. So far, we haven’t let her use social media (except for a brief and regret-filled experience with Musical.ly). I imagine her new camp friends are on Instagram and Snapchat and God knows what else, but we think the social cost of being excluded due to boring, overprotective parents is probably worth it to shield her a little longer from the undeniably toxic effects of sites that will warp her self-esteem and promote unhealthy relationships to other kids. Do you agree, or should we suck it up?

—The Luddites

Dear Luddites,

You’re quite ahead of yourself here. She has not even asked. You have not even told her no, and she has not even had a chance to react, nor process it, nor get over it. So my advice is to slow down a bit. I think 11 is probably too young for social media, but it sort of depends on the kid. The best thing to do is to decide an age at which your child can be online (COPPA says 13, we did 12) and then tell her she has to wait. Period. End of story. If you base your decision on comparisons with other families or other kids, then you’re always in an emotionally uncomfortable bind where you want to keep your kid happy but also feel like you’re trying to stem the tide of the entire world. If you don’t want her online at 11, don’t put her online at 11. She’ll have to deal, and she will.

But don’t lie to yourself. It’s coming eventually, and denying it isn’t necessarily going to save your daughter. Accept that it’s a reality, and begin to shift your mindset from prevention to preparation.

Dear Care and Feeding,

My husband’s brother calls our son “Bugs” as a nickname, and it really, well, bugs me. I am not sure how this nickname came about, but our son is 15 months old and will be talking soon. I want to get rid of the nickname before he gets too old, but I feel like it’s rude to tell my brother-in-law to stop calling him that. He is a great uncle and loves my son very much. He always wants to visit and picks him up toys and books for no reason, so I feel bad focusing on this one tiny aspect of their relationship. But, I also don’t want my son being called Bugs for the rest of his life. I haven’t brought this up with my husband because I don’t want to offend him. Help! What should I do?

—Bugged

Dear Bugged,

You could easily talk to your husband. And then talk to your brother-in-law. If you’re going to spend the rest of your life being bothered by this, then it’s worth nipping in the bud, right? What’s the holdup? You have nothing bad to say about your brother-in-law’s treatment of your son other than the fact that you simply don’t like the word. You give no indication that anyone involved is unreasonable or difficult. And the word itself is not one you find mean, abusive, or otherwise harmful.

So I’m guessing that you recognize, I think correctly, that your personal distaste for the word might not be fair cause for you to interrupt his preferred bonding with his nephew. Do you prioritize your personal linguistic aesthetics above your child’s uncle’s wishes? Does your parental jurisdiction extend to nonharmful nicknames other people have for your kid? I mean, you’re free to do whatever you want. If you want to kill the nickname, you can kill the nickname: It seems like if you tell your husband and his brother, “Stop saying Bugs,” they will probably stop saying Bugs. But there’s no guarantee that they won’t find it unfair and resent you. And, in my opinion, they’d have a case.

Let other people develop their nonharmful relationships with your kid, including funny nicknames. You can always just refuse to use it yourself. And it may not even stick. You have an excellent opportunity to not make something your problem. You should take it.

—Carvell