8.25.2010

how to support families with children in the hospital

In my last post I somehow totally forgot the entire point of my writing.  What was written was not what should of been but, at that time, could not be anything else.  This ever happen to you?

What I wanted to write about is what you can do to help families with children in the hospital.  We all wish we could do more to support a child facing challenges and their caregivers, beyond the prayers and cold hard cash (less relevant for medical bills here in Canada, though it helps gets through a time of lost income and having to stay in another city).  I know some people feel like they do not want to intrude on a busy and stressed family, especially if they do not know them particularly well, but being human is about getting all in each others' business.  From our own experiences with Smootch's illness and subsequent heart surgery at three months old, it is better when too many people step up to help rather than too few.  Embrace the busy body part of yourself and go beyond well wishes.  Here are some things you can do:

* Make meals. Put the meals into individual serving paper or plastic containers that can be microwaved and you do not expect back.  Take the meals to the hospital and ask reception to stow it in the patient fridge with the patient's name on it.  Make sure the family knows the meals are their for them.   A home cooked meal is so very welcome when subsisting on cafeteria food for days or weeks.

* Make hospital gowns or kimono style shirts for the child patient.  This works best when the family lives in the same city as their child is staying and they have access to their own washer and dryer.

* Pass along DVDs, magazines, and books.  If you were going to donate them anyway, give them to the family and tell them to donate them to the hospital (or their room mates) when they are done.  So much of hospital life is tedious as well as anxiety producing.  Distraction and laughter is a brilliant solution to this.

*  Put together a small care package, no bigger than what can fit in a bedside table drawer.  Try puzzle books, chocolate, pens and paper, exotic tea bags or powdered drinks in individual servings, extra toothbrushes and toothpaste, personal wipes (for quick sponge baths for the parents), eye masks for blocking out light (Smootch would only sleep with blanket folded over her eyes, hospitals often being so much brighter than we are comfortable sleeping with).

* A phone card, gift vouchers for the cafeteria, small, temporary credit cards like paypal and Visa issue, for paying for all the small little things that we often do not have change for.

* Call grandma.  The grandparents of the child often have a good idea what can be helpful and are sometimes already in the process of organizing meals, accommodation and such.  Grandma's are never shy of using your help for their babies and their babies' babies like the parents themselves can be.

* Babysit.  Babysit the children that are not in the hospital or go sit with the child in the hospital while a parent takes a break.  Often children need their parents to advocate for them 24 hours a day and are never left without the care of a family member.  Go take over for an hour while mom or dad catches a quiet cup of coffee or nap.

* Donate or volunteer for a charitable organization that helps families of sick children.  In my area, Calgary based Heartbeats was a wonder for us when Smootch was diagnosed with a VSD, providing information, support staff, shoulders, and financial aid.  There is many such organizations, local and national.  Call them up and see what you can do in this indirect, but still very helpful way.

* Don't forget that once a child is released from the hospital they still need extra support.  Sometimes more than ever.  Keep up the pizza coupons, gift baskets, babysitting.  Other children in the family may want to come over for more frequent play dates with your children if the parents are very busy with the ill child.  If you have an impulse or an idea that may help, call grandma.  She'll know what you can do.

I want to discourage anybody who thinks that families today, because of the government and private services available, because of our relative influence, because of our standoffish, don't-ask-don't-tell kind of culture, that the best thing we can do for a family in crisis is to stay out of the way.  We do need each other.  A sick child is in the top three scariest things that can happen to a family.  Personally, I'd rather face down a bear while tied to the last berry bush in the world.  Okay, yes, sometimes a family actually does need you to just stay out of way, but how do you know if you don't ask (even grandma)?   

I'd like to invite anybody who has had this experience to add to this list in the comments below or even share some what not to dos. 

25 comments:

PleaseRecycle said...

Thank you for posting this. My daughter has had several long (2+ weeks) hospital stays and all of the items you list are so helpful. I completely agree that we need to contact each other and reveal our humanity in these situations.

We also really appreciated offers to help at home- we didn't have the time/energy to devote to mowing/watering the yard, setting out the trash, etc. We had friends offer to come to the hospital and ready/play with our bored child- that help was so wonderful!

Things not to do? Please don't ask when the child can go home or other questions the parents may not be able to answer.

In our hospital, kids could wear whatever PJs they wanted so the hospital gown would not have been needed, but kimono-style pajamas would have been great!

Steph said...

Personally, I didn't want to see anybody in the hospital (no friends, no family members) and I told them. I wanted just my husband and my baby.
J was 2 when he had his first surgery and I was pregnant with M. He was almost 3 for the second surgery and M was 3 month old. I was able to sleep in the hospital room while pregnant but not when I had a baby with me. But during the day we were allowed to all be together.
The most appreciated things were home cooked meals delivered to the hospital by a friend and our neighbor mowing our lawn the day before we returned home.
Other useful things would be to drive the parent back and forth between the hospital and the house or hotel (not fun to drive while crying or exhausted), to offer to do laundry for the parents once in a while.
When returning home I think the things that apply to a new mom can apply to: babysitting of other kids, meals, housekeeping.
Also, I found that text messaging or email to be easier than phone. I did not want to talk to anybody but appreciated to be able to read/respond to family when I was in a mood for it.

It's great that you put together this post with all these great suggestions. It can make a difference.
Thanks.

Ticia said...

Small toys. Things to cuddle.

Something for the child who is not sick.

And I'll agree with the doing things at home.

Krista said...

My baby has only been in the hospital once for an overnight stay, but she has been sick almost from birth (first with RSV and now with reactive airway disease). I have a 2.5 year old toddler.

My advice is instigating play dates with the older children so that mom and dad can focus on the little sick one. It something that would be very helpful for me, I've asked for it, and haven't often received it. Oh, and if a family with a sick child specifically asks for something it usually means they need it.

Jo said...

I have been in the situation of having both sick children and a sick husband. Unfortunately, I recieved very little help but know the two most valued things would have been 1) a break! travelling from hospital to hospital and trying to keep a house running was both physically exhausting. A break, no matter how short would have been great. and 2) someone to take care of the yard, mowing/watering/weeding etc would have been a HUGE help.

timelady said...

when the smallest lad (now a robust mr 7) was born, he wasn't prem, but we both had a very traumatic ca section - 3 goes to get him out (they ended up using forceps!), as he was transverse, he slipped back in, but had started breathing. he stopped. the angels in nicu rescued him. he spent two weeks in there, a huge 6pounds compared to the wee ones.
i was in every four hours to express, and then feed once he was ready (boy was he ready, at first cuddle, he found his breast!). with four kids at home and a non supportive partner ( he was having an affair that came out during the time, *and* another woman who was having his child as well), boy, was i physically and emotionally broken.my friends were, are still, my rocks. (and he is my ex, but has proven to be a better father, and is now with another woman and two more kids). a sort of happy ending.

- emotional support is critical. be there to listen to fears and doubts and provide a shoulder. sick kids are as scary as it gets.

- food. besides feeding my family, my friends fed ME, and when i finally roomed in prior to discharge, continued that - mums of premmies have to room in to ensure breastfeeding and general ok-ness, and the hospital doesn't count her as a patient, so she doesn't get food.

- an odd one - kangaroo care. when friends had an unexpected home birth of a very small 2 kilo baby girl, very early, they admitted to hospital, but were traumatised at thought of humidicrib. so, as the two of them alone couldn't manage, i did the 12 -5am shift of holding this small lovely girl against my skin, wrapped n blankets. she thrived and was discharged four weeks earlier than average. i also acted as their communications interface, so that they could focus on their baby. another dear friend took their 3yo, bought him in for visits every day, and yet more cleaned their house form top to bottom to make sure it was ready. meals waiting in the fridge for them when they came home :)
so think outside the box.

- go in and read or play games with the older child. make up craft kits (check for hospital restrictions). are they old enough to be amused by video games - some hospitals rent them, and the parents are so harried or may be paying huge sums for treatment...

- see who is paying their bills, feeding their dog, watering their garden. organise a roster of friends to do all the chores to free them for child visits

- let them know they are loved. do not underestimate care and compassion in times of need.

Jeff and Meg said...

This is a really good post. I agree with all you have said. I think too often, we stand back because we are unsure of what to do and it is easier not to do anything. One thing that was offered us while my son was in the hospital is for someone to come by and mow our grass, and clean the house for us while we were gone. That was really nice and creative, and helped with the stuff we weren't even thinking about. Also, sometimes, in the case of my daughter who came home in a body cast, we had no way of keeping her upright to be able to see around. People asked what we needed and were able to help with a bean bag chair and some other things that made her time in the cast more bearable. You never know when you could offer something of use, like the bean bag chair was to us.

That MoM....Those KidS said...

this was a great post. When my now 10yo was in the hospital as a baby for RSV we were on our own. I didn't know to call anyone or that anyone would help us out. Later I had a lot of friends tell me I should have called and they would have helped with my other son or with meals. I never hesitate to let my friends in on these needs now-but thankfully we haven't had much need for it.

Belle + Bee said...

When my 12 week old baby was in the hospital (thankfully, a short stay of only 3 days) someone brought us a huge bag of muffins. It's an odd thing to suggest, but it was the best gesture. We never really felt like eating a meal, so we existed on those muffins for the time we were there.

Heather said...

After having a premmie bub myself the one thing I always give or recommend as a gift for parents of premmies (and would probably go for parents of any other child in hospital with a suppressed immune system) is a lovely unscented handcream. The antibacterial washes that must be used before entering NICU etc are very drying on the hands just when you want soft hands to caress your childs skin.

Coming home to a clean house, fresh sheets and no laundry is also a blessing.

Michelle W said...

Well said!!

Lacey said...

Thanks for posting this. We've thankfully never had to deal with this, but the advice is awesome :)

Laylabean said...

Wonderful post! Thanks so much, this is very helpful, especially for those of us who really want to do something but don't want to intrude and have no idea what will really help and what will only be one more thing to worry about. Best wishes to your friend, I hope all goes well.

Jen said...

When my youngest was born, he was diagnosed with respitory distress, with no apparant cause (later finding out it was most likely due to a hole in his heart that spontaneously closed). He spent 2wks in a NICU that was about an hour away. After my recovery period(he was yet another c-section for me), I went home. I had 2 other children (4yrs and almost 1yr) waiting for me. My mom couldn't take anymore time off work to watch them (their father wasn't/isn't in the picture). I went home and resumed 'normal' life. All I wanted, was an ear, an offer of help. I'd had surgery, a sick baby that was too far away, two other young children depending on me, and I was alone. And being alone during something like that - it's hard, physically and emotionally.

I never would have thought that any one was intruding by offering anything. The simplest gestures sometimes make the biggest difference. Anything you think you can offer to someone in those situations is more often than not appreciated. It's one less thing you need to worry about. I do love the idea of phoning Grandma to find out what they need. Sometimes it really can be hard to admit that help is what you really need.

Sue V. said...

Wonderful post...having never been in the situation of having a child in the hospital this really helps outsiders know what to do. Thank you

JIL said...

We continue to support the hospitality house that allowed family to stay for free during a prolonged hospital stay. We do this as a thank you for what they did for us during that time and for help and support for others that are going through a difficult time.

Anonymous said...

Great post! I agree! One thing that made me happier was when my friend came to my house, made food, brought candy and a good movie that we could watch. I was home alone with our 1 yo while my husband were at the hospital with our 4 yo and I really needed something else to think about!

(Kerri) said...

This is a great post! At first I didn't think I could add to the alreay great advice given. I took a moment to think (away from the computer) and remembered something that would have been really helpful to me (besides all the other great ideas). When our son was in the hospital for two weeks my dh could not take time off of work. We were relying on help from our church. I am ever so grateful for their help! But, if I could give other people advice if you plan on watching someone else's child.....please ask the parent what their rules are. It may seem silly now, but when I found out that my girls (four of them ages, 2.5, 4, 7 and 9) were aloud outside at 7 AM without adult supervision, I *freaked* out! It was this family's custom for their children to wake early and go jump on their trampoline or take a walk around thier pond! That surely is NOT my children's custom. I ended up spending a lot of time worrying not only about my sick son, but about how my other children were fairing.

Blessings,
Kerri

Nora said...

Helpful post! Family support has been amply covered here. Patient support that can be especially meaningful:
- a new poster each week to hang on the ceiling above the patient's head. A world map, a Where's Waldo kind of thing with lots of details to keep them interested, really visually stimulating things to look at when lying in bed.
- peppermints. Medicine, especially IV mess, taste awful. Gum or even mouthwash can help.
- I've had oodles of orthopedic work done involving external pins, casts, etc. My mom made custom fabric & velcro covers for them, for privacy & warmth. Also, she cut through the sides of boxer shorts & sewed in velcro tabs so they went on like a diaper but made me feel dressed, even in a hospital johnny. Knowing how meaningful this was for me, I now offer this kind of sewing customization to everyone I can.

Annie said...

As a once very sick child myself, I would say to keep healthy, playful children away from the sick child. It's hard for the sick child to play and they may feel embarassed or overwhelmed. Trying to play or engage with these other children is exhausting and difficult.

Great post and wonderful suggestions! Best wishes to your friend's family.

Rebecca said...

Thanks for this post!

My 15 month old son, Vincent, was just diagnosed after his first birthday with an extremely rare sort of liver cancer. (extrarenal rhabdoid tumor).

So far we've needed a lot of help, because we also have a 3 year old son who's used to being with mommy all day long, and my husband is a full-time grad student with a very demanding practicum.

We have a lot of church support - we get meals brought to our house twice a week, and other people have given us money for gas cards, food in the hospital, etc. Thankfully our insurance is covering everything, because the treatment he's received is soo expensive!

It's been the hardest when we're in the hospital, since I'm still breastfeeding him, I live in the hospital with him, and so I've had people bring my 3 year old to the hospital so he can see me and spend some time with me while the visitor stays with Vincent.

Another really, really helpful thing was having people come over to clean our house before Vincent came home from his 2nd round of chemo - since his white blood count drops so rapidly, it's been hard trying to keep our house as germ-free as possible (even "healthy" bacteria can be life-threatening to him~!)

I would love to have some hospital gowns made for him, but I don't know who to ask.

Thanks for listening... I love this blog!

Hailey said...

It takes a special kind of person to care for a sick child. Not many people can honestly empathize with what you have to go through. My four year old sister has CP and after her birth we were flooded with help and love...now that she's getting older the help and love seems too have fallen short. My family seems to be afraid to hold her and play with her, so it's easier not too. I feel that the best gift to a family with children in the hospital is not to be forgotten...it's an everyday battle that we wouldn't trade for the world but it doesn't make it any easier. Thank you sooo much for this web site I make her clothes all the time from your beautiful patterns, you are so talented!! Thank you for spreading the word on the struggle of families with sick kids...you're not alone. "United we stand, Divided we fall" -Hailey

Anonymous said...

It's funny that I stumbled on this tonight. Just yesterday I decided that for Christmas Eve dinner, I am going to ask my guests to bring dontations for our local Ronald McDonald House.

I'd like to do more, but don't know anyone personally in this situation. If a stranger brought homemade food to the hospital...would any of you have accepted it? I wouldn't want to go through the effort for a smile, a thanks, only to have it tossed in the trash when I walked out.

Are there any other things you could suggest that I drop off at the peds dept at my local hospital - for people I don't know personally? Thanks, and best of luck to you who are still in this situation...

Pixie said...

I know this post was made many many months ago, but it caught my interest. I wrote something similar 3 weeks into our NICU journey when my firstborn was born at 27+4.
My blog isn't anywhere near polished, but the write up is still valuable:
http://pixie.flurf.net/?page_id=151

kurt penberg said...

This was exactly what I needed to read on this topic. I agree with this post entirely. Kurt Penberg introduced a number of personalized gifts for kids. You can express your love to your kids by gifting them a music CD or DVD.