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One of our readers contacted us with this question:
I just found out that a friend of mine recently received the devastating news that her weeks old baby has contracted a serious illness and now the family is looking at months of hospitalization, treatments, tests, and sleepless nights. I want to give my support and help out in any way I can, but I’m stuck working abroad for the next two months.
For anyone who has lived through the experience of having a child with an extended illness, what are some of the things that you found the most helpful or appreciated the most? Is there anything I can do remotely besides send flowers (which are not welcome in a sterile environment anyway) or cards? I’d appreciate any advice you have. Thanks! -Mallory
So we put it out on our Facebook page and asked other readers to weigh in. Here’s what our helpful Homies had to say…
Don’t ask to help
One of my big pet peeves is when people say “let me know if I can help!” No, DO NOT SAY THAT. If they are like me, they will not ask for help. Instead, say “would it be okay for me to bring you a meal? What day will work for you?” This is much more helpful than a general “let me know what I can do” offer.
Food; set up a meal train, recruit people to take meals. If its an extended illness, have meals delivered two-three days a week so you can help for an extended period. If you can’t take a meal, gift cards to restaurants are good. -Julie
Don’t ask questions, just say “we’ve worked this out in such a way and that’s what we’re doing, as long as it’s okay with you.” Then do it. When they get home, having a cooler by the door to place meals in without bothering them is a great idea. -Annie
Encourage self-care
With being so far away it’s difficult, but you can send gift certificates for Mom, or even just random cards letting the parents know that you’re thinking of them… self care is vital and those gift cards will help out. Arranging grocery deliveries or other household supplies. Also any household chores that can be contracted out. Having had sick kids/babies it’s emotionally devastating and easy to become lost in it all. Try to call the friend occasionally not necessarily for an update. Instead call just to be a friend. -Christina
Having recently had a vulnerable relative in hospital for an extended period of time I know I needed to be told that you are not just allowed, but recommended to take time for themselves, and help deal with the guilt of doing that. In a crisis it’s easy to think your basic needs don’t matter, and you just get from day-to-day. But that little time can really help in coping with the stress of constant hospital visits and caring. -Lainie
There’s such a thing as a “hospital hamper”
Could you maybe send them a hospital hamper? With almost-emergency supplies of toiletries, things to do, change for parking, snacks etc. Then maybe they can leave it in the car in case they have to make an unexpected trip to the hospital and don’t have time to pack/forget something. -Jade
Think of the other little ones
Organize to have their pet looked after. I’m doing this at the moment because as adorable as he is, he’s a working breed and will create chaos without a decent walk and training session. -Jessica
If they have other kids, send them a letter that’s just for them. Let them know that they still matter, that they aren’t invisible. -Carrie
Speaking from experience
For us the most useful gifts were: paid parking passes for hospital parking garage, freezer meals, individually packed healthy lunches to eat at the hospital, help at home (pets, lawn, cleaning, childcare for the other kids, keeping my husband company), regular distracting texts, Netflix/Hulu/HBO Go pass codes, or digital movies, good easy reading books. I had friends who sent me playlists, funny care packages, ridiculous meme of the day texts, etc, that really cheered me up. Because they were not about the hospital or my kids disease or latest procedure. During our last hospitalization my dad would have dinner delivered to my daughter’s room so I could eat something not from the microwave. -Keren
Speaking from my own experience: Gift cards and meals — made and frozen — as well as a room paid for at the Ronald MCDonald house was a saving grace to our family . And friends who would come and do menial chores such as dishes and mowing and pet care. I will forever be thankful for all of those things. -Wendy
My son has cystic fibrosis, and has spent a month a time in the hospital. If you can, go sit with the baby so mom and dad can get a hot meal and a shower. Offer to bring her clean clothes, books, toiletries. Ask if you can help with responsibilities at the house (pick up mail, let out pets, etc.). Gift cards are great, my husband and I spent so much on fast food and cafeteria meals. -Jennifer
The number one most-liked response:
Speaking from experience food, and making sure essentials are taken care of are SO SO NICE. Gift cards for coffee/to their favorite restaurants, arranging deliveries of basics like toilet paper and paper plates/plastic cutlery, recruiting friends to clean their house and mow their lawn and stock the fridge… All are so appreciated when you have a baby in the NICU and regular life falls by the wayside. -Janet
What are YOUR suggestions?
Everything I was going to say has been covered – food, dog walking, self-care.
Because we were in the pediatric ICU over the holidays we got a bag of goodies – toys for the baby and some self-care stuff for the mom (it could have been for either parent if dad was into pink nail polish and a little necklace charm thing). One of the best things in it was a fleece blanket – the chair/bed that the adults slept on was right under the air conditioning vent and even my normally warm-blooded husband was cold. Also, good slippers or something like ballet flats so you can get out of the chair/bed and go pee in the adults bathroom down the hall with an actual door that closed (the toilet in our room had a half curtain between it and the window of the nurses station).
If you knit and the patient is a baby, leg warmers are AWESOME. It lets them have pants but still allows for easy diaper changes in spite of all the wires attached to the baby.
When my nephew was in the hospital for an extended time due to health problems, I sent my sister and her husband a gift card for the hospital cafeteria. I had to call the Food Services staff, but they were able to set up the gift certificate and delivered it up to my sister. That way, they didn’t need to worry about food while they were camped out at the hospital and an hour away from home.
These are ALL excellent. And also double for grieving, taking care of an ill parent, etc. Depending on how well you know the person, I’ve also found it helpful to be the chauffeur/delivery person, running trips between hospital and home to bring things they forgot, or brings other kids to visit, etc.
I was one of the quoted commenters above but I wanted to expand one point I made.
All the little expenses of an extended hospital stay add up. And quickly. For us our regular expenses during an extended hospital stay are: Parking is $10-$20 a day. Taxis are $20 each way. Buses are $2 each way. The hospital coffeeshop cost $2-$4 everytime I needed a break. Meals cost about $10 a pop at the cafeteria. My husband has to stay home with our other kids so he ends up eating out or doing last minute dinner at the grocery store which is another $10-$20 a meal. During our first long hospital stay I ended up loosing weight because I couldn’t afford to buy meals and I didn’t have the emotional energy to go grocery shopping/ meal planning/ preparing food. Friends found out and rallied together to help us out with gift cards to the Starbucks on campus (we were at a University Hospital), paid parking passes, microwave burritos to eat at the hospital, freezer meals at home, and rides to or from the hospital so we wouldn’t have to pay for transit or parking. We were lucky, several of the other families on the ward with us had couldn’t afford gas/parking or missing work so they make it to the hospital to be with their sick child.
So due to my own experience my go-to gift for friends and coworkers who have an extended hospitalization has been gifts of parking passes, food, and coffee gift cards. And also, non-hospital related conversations and texts to remind them that their life is more then just the hospital.
Food, but with several caveats. Make sure to ask if they need any. Weirdly, when my mom was receiving cancer treatment, it was feast or famine. People would come with food as soon as she got out of the hospital with fresh food (pretty much none of it was freezer friendly, but in the next few weeks, there was nothing) And don’t take it upon yourself to try and feed them for days. Someone made us, no exaggeration, about 2 gallons of this pasta and it was the most disgusting thing we’d ever tasted (we’re not picky) and felt terrible because we threw it all away. And cook it or deliver it in things you don’t want or need back. Nothing was more annoying then someone nagging us to get their best pot or corningware back.
Oh and I’m sure it’s well intentioned, but don’t offer medical advice, even if a raw diet saved your cousin’s life. Or say unhelpful things like “Oh, we can’t believe this happened, she seemed so healthy.”
And ask them to church or to pray unless you know it is welcome.
Another thought is it may be helpful when providing freezer meals to do single portions and do things that can be yanked out and cooked quickly from frozen or quickly defrosted. Meal times maybe sporadic, last minute and not featuring the usual combos of family members so a massive lasagna to feed everyone that needs taking out hours before it’s needed may not be that helpful.
These are all awesome suggestions- especially checking on animals and household stuff while the parents are away.These ideas could also be very helpful for any age group of patient (think adult child who is staying at the hospital with their sick parent). I think I’m going to print this off to pass around at work (I’m a nurse).