My daughter is dying. How do I tell her brother?

Dear s.e.,

We just exhausted our last treatment option for my 12-year-old daughter Carrie's leukemia and she's entering hospice. Throughout this process my wife and I have shared as much information as possible with Carrie and she been an active part of directing her care and making decisions. Both our families have been very supportive and my mom is taking some time off to help.

Our children's hospital has an amazing hospice and palliative care coordinator who has been so helpful with getting us everything we need. It's still overwhelming to think about a hospital bed, medical equipment and supplies, hospice nurses, and a lot of big changes at home.

In all of these discussions, I'm struggling to know what to say to our five-year-old son. Carrie has been sick for most of his life, we've had some age-appropriate conversations about leukemia and treatments, and he's definitely aware that something is different. I don't know how to talk to him about the fact that she is not going to get better, and what's coming next for us.

The palliative care coordinator gave us some handouts and some people have recommended books, but nothing feels quite right to me. Help?

—Palliative Parent

Dear Palliative Parent,

I am so sorry for Carrie, and you, and your entire family. Cancer sucks and it isn't fair. It is heartening to hear that you have a good support network of people to help you during this transition, because it's not something you should do alone.

Your parenting style suggests that you're a lot further along than some other parents might be, and maybe further than you realize, in this conversation. You are clearly a parent who is communicative, collaborative, and honest with your kids. A lot of parents aren't! It's lovely that you've included Carrie as an active participant, as much as she can be, because childhood illnesses can feel really disempowering and isolating. And you can build on the conversations that you've been having with your son, because you've already laid the groundwork.

This is not a conversation you need to have all at once, and in fact, it's better to have in little pieces over time. Pick a time when he's used to having bigger conversations, whenever that might be. It's good to start by checking in with him about how he's feeling and if he has anything he wants to share with you about his day. If he's wiggly, distracted, or clearly struggling with some feelings, that might not be the best moment for this conversation—you can't put it off forever, but you know your kids, and I think you'll know when the time is right. When it feels like he's ready, you can explain that his sister is very sick, and the doctors tried lots of things, but she isn't going to get better.

Annual flowers look beautiful, and then they die back at the end of the season and they won't come back.

Name what's happening and be explicit: It feels overwhelming and intense to say that she's going to die, but articulating that to him clearly can help him understand. You can explain that when someone dies, their body stops working and cannot be fixed. Since you've had some conversations with him already, you could talk about things like the fact that her heart won't be able to beat anymore and she won't be able to breathe, and that these two things, among many others, keep us alive. I know it's really hard to say and think about this stuff! You can say this too.

Death is scary (to all ages) because it is abstract. Young kids are often very literal as they learn about the world, so you have to keep it concrete. If anyone in your sobn's orbit has died, you can compare this situation to that. If not, there might be something else you can use to illustrate. For example, annual flowers look beautiful, and then they die back at the end of the season and they won't come back.

You can also tell him that some things are going to change around the house as your family does things to make Carrie comfortable. Tell him about the equipment you might need to bring in and the people he will start to see around the house. Let him know that sometimes Carrie might be very tired or could be hurting a lot, and she might need more calm and space.

You can also invite him to participate, as much as he wants to. You know your kid way better than I do, but it's worth noting that sometimes we assume children aren't interested or aren't capable, and that deprives them of opportunities that they regret later. At five, he's probably not giving her medications or checking her vitals, but he could do things like bringing her water in her designated cup or being in charge of the art supplies. Carrie might also have some ideas.

Tell him you don't need to talk about everything all at once, but that you and your wife are here whenever he wants someone to talk to. Invite him to ask questions and share feelings. Let him know that sometimes people have really weird feelings, and that's okay: There's no wrong or right way to feel. Name your own feelings, too: You might be sad and mad, scared and worried, and being open with him about that can help him think through his own feelings too.

This is also a really good time to engage in some meaning-making as a family.

If he's not already getting therapy or other third-party support, his school may have a counselor, but you could also see about connecting him specifically with a grief counselor and peer support groups. I'm not sure where you are, but I really love the team at the Dougy Center, for example. Your children's hospital likely has some good recommendations as well. Having those spaces dedicated to him and his feelings can be really helpful, especially if they include other kids who are going through this too.

Speaking of enlisting help, I suspect that someone on your hospice team might be able to make some time to sit with him and talk about what hospice looks, sounds, feels, and even smells like. The unknown is sometimes the scariest part of all, letting someone know what to expect can be a big anchor, and hospice workers are really skilled communicators who can answer questions you might not have answers to. If he's there while they are setting up equipment, for example, they can explain what it does and how it works. If it's something that makes noise, they can let him know what those sounds mean.

As a parent, you're very aware that young kids can have surprising reactions to big things in their lives, and that's a good thing to be prepared for too. You may get the same questions—often existential, like "am I going to die too?" and "what will happen to her?"—over and over again. He might be really upset one minute and then asking to go outside and play the next. He might be frustrated, mad, or sad, and struggling to even name those feelings, let alone express them in healthy ways.

This is also a really good time to engage in some meaning-making as a family. I'm sure you are talking with Carrie about any special requests you can honor, however small and large those might be, and it's good to include your son in those conversations too. There might be things that are important to him, or that she wants to do with him, and those memories of his sister will stick with him.

Spending time together, storytelling, making art, and creating other things—maybe in your family that's music, or sprawling Lego constructions, or anything else—is also really important. Hospice provides time and space to do that, because you can talk frankly about the elephant in the room. It may even be a chance to talk about things like whether Carrie wants to hold a party for herself before she dies, or what kinds of things she'd like the family to do at an event in her honor. That's another anchoring opportunity for your son, too.

And while a lot of the focus is on Carrie right now, be sure to give him some dedicated time that's focused on him. Cancer has a way of taking over everything in your life and explicitly making time for him to just be a kid, and get quality time with both of you (together and separately) will help him navigate this transition too. If you already have activities you like to do together, build on those, or explore new things so you can build memories and bond with each other. This could be something as simple as singing along to something you like on the way to school, playing I Spy with birds in the backyard...whatever it is that can bring you a slice of joy, or relief, or fun. These little moments will also be good for you and your wife.

I hope that you and your wife are also getting support you need independently. Caring for any loved one with a terminal illness is really emotionally and physically hard, and hitting a big transition moment like this can be, as you say, overwhelming. Especially because this is a grief your whole family will carry: You will be mourning Carrie, but also expriencing empathy and loss for your wife and son as they navigate this loss too.

You have a deeply bonded support network and you're parenting with care and intention.

I'm a big fan of therapy for everyone, so I hope you have that, but it's also important to take some structured personal time, independently, together, and both, to give yourself space to feel big feelings and exhale. It sounds like you have access to a trusted network of people who can sit with Carrie while you two go out to dinner, or take a walk, or go out to the movies. Some friends of mine have a weekly No Cancer Allowed date night and it's been really helpful for deepening their relationship to each other during a really shitty time.

In terms of telling his teacher, and other adults in your life, I know that having the same conversation over and over again can be hard. Especially when it sometimes feels like you are managing someone else's feelings. You might consider writing a letter to share with his teacher, other parents, and other people explaining that Carrie is entering hospice and letting them know that you value open, transparent, clear communication with your children, so they both know what being in hospice means. Encourage them to use clear language, not euphemisms like "going away," when talking to your son and let them know that you appreciate their support.

I know this is an incredibly hard and sad time and there's a lot on your shoulders. It's clear, though, that you have a deeply bonded support network and you're parenting with care and intention. I am thinking good thoughts for you and your family, and I hope that Carrie's good days outnumber her bad ones.

Tell your son I said...

These are hard and scary times that we are going through together, but we have lots of friends to make sure we aren't alone