What can I do for a family with a toddler with a chronic illness?
August 12, 2016 1:02 AM   Subscribe

I have a nephew, just shy of two years old, who has a rare autoimmune disease. It's very complex, and he is going through a battery of experimental treatments. The success of those treatments is far from guaranteed. Life is crushingly hard for him and his family. We are having trouble coming up with ways to help them.

He and his mother have been in an hospital for the better part of a year. They can only leave the room for an hour a day. He cannot interact with other children in the hospital, who also have different immunodeficiencies. Staff needs to run tests or administer drugs every three hours or so, even at night. The tests and drug administration involve injections or drawing blood or being connected to a machine for an hour, which he does not understand at all. He is entirely tube-fed.

As a result of this, they don't sleep in chunks longer than two hours. My sister says that, physically, it is like having a troubled newborn, except for a year instead of a few months. She has been like an ironwoman.

They will be doing chemotherapy next, which is said to be even worse.

Suffice to say, this is one of the worst things I can imagine happening to anyone.

I have asked how I can help, and there's not much my sister and brother-in-law can come up with. The one non-nightmarish aspect of this is that they are in the UK, and all of the medical stuff is completely free, so they don't need financial help. I am in the US, and my family and I are going over for a week to spend time with their older child, who does not get as much attention as he used to as a result of all of this.

What else can I do? It is very important that whatever I do, if anything, is actually helpful, not inadvertently extra work. And it is possibly that there's nothing practically helpful that I can do.
posted by anonymous to Human Relations (11 answers total)
I think it would help to just make sure you stay in good contact with them. Dealing with an illness like that can be incredibly isolating; it's both scary and terribly boring at the same time, and there aren't many people who truly manage to stick around for the long haul. And I would imagine that having a kid be that ill must be even more isolating, because a lot of people just really don't know what to do with a really sick kid.

So I would just make sure to call them regularly, and write your sister regular normal emails about what's going on in your life (and make sure she knows you don't expect her to answer every email, just whenever she feels like it). If the older kid can read (and maybe even if they can't), I would think about writing him or her real letters periodically. It's really hard being the healthy, normal kid with a very sick sibling, since your need for love and attention don't just go away because your sibling needs all of this attention just to survive.
posted by colfax at 1:31 AM on August 12, 2016 [12 favorites]

Would they need something like a cleaning service? I know when my chronic illness flares the cleaning is the first thing to get ignored.

Could you send or order nutritious snacks and foods that are good for while they're at the hospital? Maybe a really nice water bottle and drink flavoring to make sure they stay hydrated and eating/drinking enough themselves.

What about buying an Audible subscription or something so that they can listen to something on their phones? Those types of little "extras" are things that they may not think of but would be helpful. They could all try to listen to books together too.

I'd definitely see if you can send care packages to the kids. Especially since one child is ill and one is not. Useful things like coloring books or something that wouldn't require parental work but would keep kids occupied. (I'm not a parent so maybe people have better ideas.) But getting some positive attention surrounding the medical stuff would brighten their days I'm sure.

Also, these sleep headphones have been a godsend for my sleep issues lately. They're extremely comfortable. So maybe they could try to get more shuteye while listening to soft music or podcasts or something and helping tune out hopsital noise or calm anxiety. When you lay down on them you can clearly hear things while not totally blocking out other sound. (ETA that sleep headphones come in kid sizes too.)

But yea, beyond things, just being there to listen can be really helpful. Maybe pay attention when you visit if you see things that they might find useful - sometimes as an outside observer you can be like "Oh, you could use someone to do your laundry" but if you were to ask them, they would have no idea that they should have someone do it for them or buy a thing to fix a problem because they're too preoccupied with everything else.
posted by Crystalinne at 1:56 AM on August 12, 2016 [4 favorites]

You'll probably get a better sense of what would be helpful/useful/possible once you go over there for your visit. Laundry service is useful, but not if they don't deliver and you have to go across town to pick it up. (I don't know how laundry services work, but this is just an example.)

I definitely agree that sending care packages and letters to both kids is important. Some special time with your older nephew, and be prepared that he might want to ask heavy questions that he may not want to ask his parents.
posted by melissa at 5:43 AM on August 12, 2016 [2 favorites]

I read somewhere about a lady, in a similar situation, who received stupid jokes and stories every day from a friend. Always at the same time and how much she appreciated it. Having someone curate it for her.
posted by Ftsqg at 7:12 AM on August 12, 2016 [5 favorites]

My 3 year old has a chronic health condition and has been hospitalized 3 times this year so far. While long-term and shorter/unexpected hospitalizations are entirely different ball games, this is what I'd need:

At the hospital:
* a walk outside (being stuck in isolation is so... isolating. Plus feeling sun and wind after days inside is amazing)
* healthy caffeine source (good tea - but this may be possible in British hospitals)
* healthy, shelf-stable snack supply
* ability to shower
* real meals would be a treat (usually I eat the food from the hospital tray that my kid doesn't want, plus whatever snacks I can scrounge up)
* a new set of toiletries, if needed
* a way or things to manage ugly hospital hair, if possible (one can hope, right?)

You're probably not going to be around for night-time vitals/meds/labs, and parents in the room with toddlers can't exactly sleep through that. I don't know how you could help there besides distract your nephew in the hospital room while your sister takes a nap during the day.

At home:
* yard work help
* cleaning help
* food/cooking help (freezer meals, grocery shopping, cleaning out the fridge and pantry as needed)
* big laundry help (sheets/towels, clothes)
* seasonal home maintenance help (windows washed, gutters cleaned, furnace filters changed, etc.)

I don't have another kid at home (and won't, due to our situation), but quality time with the other kid would be amazing. Taking them shopping for new clothes/shoes if they've grown is something I wouldn't have time for.

I hope your trip goes well.
posted by Maarika at 7:25 AM on August 12, 2016 [4 favorites]

Is the older kid old enough to fly unaccompanied? Can he come visit you and get one-on-one time with close family for a more extended period of time--a few weeks?
posted by soren_lorensen at 7:46 AM on August 12, 2016 [3 favorites]

There is a camp that has an astronaut suit for kids with rare skin disorders to go outside in the sun. I wonder if there is a way you could organise some kind of clean suit he could wear so he could go out more. Could be part of a Super Boy Adventure a la Buzz Lightyear and Toy Story involving him and other family members. Consult with doctors and hospital fundraising staff, I am sure they know what I am on about with the clean suit.
posted by parmanparman at 7:55 AM on August 12, 2016

In the UK there are many children's respite care groups to support the family. Hospitals would not know about these but they are worth contacting.
posted by parmanparman at 7:59 AM on August 12, 2016

I would focus on things you can do for your brother-in-law and older nephew. Your sister and younger nephew have a mountain of very special requirements, and in all likelihood (if she's not already working with someone for respite care) she cannot or doesn't dare turn her back for a second. So I would tread verrrry carefully with even implied deviations to routine, even down to providing any sort of toy or entertainment that hasn't been specifically listed by her as approved and desired to be within his reach/allowed in that part of the hospital. Even items you mean for her comfort, like snacks or electronics, might make her life worse, not better.

(Though you might ask if you can just go get her some clothes, new bras, shoes - I can't imagine what it's like not being able to step away without crushing anxiety and potential real-world consequences but also having to more or less function as an adult. Hopefully she's got friends or her husband doing this periodically, or she's ordering stuff, but you never know.)

I think this trip might be the time to establish a communication policy with your sister and brother-in-law for future needs and assistance. Have a very honest conversation about "I always always want you to tell me no if we are trying to make life harder for you, but I also don't want to force you into long explanations behind the no, and I don't want you to avoid asking for things because of long explanations, so here's the code word we'll all use for "because, just because".

Because really, you can't take any initiative here, you have to follow their lead and their instructions. Do focus your help efforts on the home, brother-in-law, and older nephew since those situations are all far less fragile. You probably cannot help your younger nephew, and probably only in very rare occasions help your sister in any way that doesn't generate more work for her. It sounds like she's totally aware of that. And if they have a system that more or less works, maybe you can just be the auntie who encourages the older boy's hobby or interests and has a Skype call with him once a week just to interact and let him tell you endlessly about Minecraft or whatever, and that's all you can do that isn't disruptive.
posted by Lyn Never at 8:25 AM on August 12, 2016 [3 favorites]

I want to second or third the older nephew aspect. My family went through something similar last year (my sister, who lives on the other side of the world, gave birth to a little boy with an ultimately fatal disease) and because in times like this, no one knows what to do, I concentrated on her older son, who was just three at the time. I didn't do enough - honestly, if I had been thinking clearly, I would have taken a leave of absence from work and moved to their country temporarily.

How old is the older nephew? Old enough for a visit to you? Having a sick sibling can be completely overwhelming to a child, and giving them a respite from that experience could go a long way (it might also help to alleviate any feelings of guilt that your sister has about not caring for the older child, which my sister had and has.) Also, because children are children, they can have a really hard time expressing the feelings they're having. My nephew is still struggling with this. I peppered him with letters and emails and videos and Skype and gifts - a lot of goofy stuff so that he still got to be a kid when this terrible thing was going on around him.

Similarly, support your brother in law. My sister had a lot of support; my brother-in-law, not so much. And he was the primary support for my sister, so he was really carrying two people.

I also second everyone upstream that this is the time for blunt conversations. Some things I've told my sister:
- you do not need to worry about hurting my feelings
- everything you say is between us unless you want me to talk to others about it
- I do not judge you for having all the feelings that you might have. Have them out loud at me if it helps.
- you're my sister and I will do anything for you.
- I'm going to suggest things and you should feel free to say no. I want to make this easier for you in whatever way I can.
- I know that this is a huge life-defining thing, and if you need to not talk about it for a while, I can do that. We can talk about our brothers and our parents and who I'm dating if that helps you.

Also, if your sister is religious (as mine is) you might want to reach out to churches to have your nephew put on their prayer list. I'm not religious, but some friends/coworkers of mine did that, and my sister was touched.

You're correct: this is one of the worst things. Please memail me if you'd like to talk about this more.
posted by punchtothehead at 8:53 AM on August 12, 2016 [10 favorites]

I once spent a few days hanging out in an online chat room with a woman who was sleeping at the hospital for a week or more while her child underwent torturous testing. She couldn't go anywhere, but having someone sympathetic to talk to meant something to her.

Does your sister have an awesome smartphone with excellent battery life that would be allowed at the hospital with her? If she doesn't but it would be allowed, can you get her a great smartphone with excellent battery life and a generous plan so she can do stuff online in addition to calling people? Can you also then be supportive via internet at times?
posted by Michele in California at 11:13 AM on August 13, 2016

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