Hospital Support
This will be the first official blog I ever write for ALF.
I have an endless list of blog entry ideas, but this topic has been the most requested resource by those supporting medical families and I find it incredibly important for the overall health of this community.
I cannot tell you how many drives to the hospital and loads of laundry folding I have spent thinking about what to include in this!
Disclaimer: I am sharing my insight based on my experiences, but I think it is important to remember that everyone has different needs and responds to situations in different ways. I will write this with an effort to speak for all medical moms in the way best that I can!
Your neighbor’s child, your niece, your best friend’s son is in the hospital -- how do you help?
This will be broken up into two parts: Emotional + Communication Support & Logistical Support.
Emotional + Communication Support.
Learn why they are in the hospital and in need of treatment
This of course can look so different depending on the situation. How long could the stay potentially be? What is the intensity of the admission? Does it include the ICU (Intensive Care Unit)?
The key here, is learning the degree of stress on the family based on prognosis.
1. Your main focus is to understand their diagnosis, condition, disease, repair, illness the very best that you can.
For example: “I was just told baby Jane has duodenal atresia. How do I support her parents?”
Learn everything you can about duodenal atresia (or the heart condition, blood disorder, type of virus etc. )
I highly recommend you learn independent of the caretakers. Requesting a full breakdown and definition right from the start places another “to-do” on their already full plate, and they likely do not have the time or energy for that. Do your part to learn on your own!
How you can educate yourself:
Have the caretakers created a general update in the form of a blog, social media posts, emails, group thread, etc.? Be sure that you are informed via those avenues first if it is available!
Find a parent who has already walked through this medical experience. There is no greater expert on what your friend or family member is going through than another parent who has lived it. Ask them to educate you and write down what their greatest help was from their support system.
Search online for a trusted resource while understanding that what you read will typically be generalized information; this info should be used as a starting point, but every child’s experience is uniquely their own and will not always fit inside a box. For example: I have walked through open-heart surgery with over 50 families, and not a single child’s surgery or recovery has ever once looked the same. My hope is that, with time, ALF will grow to be a resource replete with information about numerous conditions and diagnosis!
Once you have informed yourself as best you can, then would be the time to reach out to the caretaker.
Instead of, “Wow, what is duodenal atresia? I can’t even pronounce that”, you search how to correctly pronounce the condition (it is amazing how far that alone can go). Once you have done this, try, “So I understand she will need surgery soon after delivery. Have you been able to meet with the surgeon yet? How did you feel about him/her?”
As a result, the caretaker will not feel a mountain of weight on her shoulders to carry the conversation. The feelings of isolation to explain the diagnosis have been lifted, and you are now able to have a truly supporting conversation – in regard to their emotions and the reality of the child’s care.
*I want to be careful to say this as well about educating yourself. Google can never speak to all of the truths of a diagnosis and can even be misleading at times. This is especially true when the diagnosis is a disability or genetic condition that has societal stereotypes.
I’m sure you can imagine how this is true for Down Syndrome and can also occur with Louise’s rare syndrome – an overwhelming abundance of “your child will never” are heard, and it is truly exasperating. Just remember that every child is unique. Do your best to learn the basics, but the caregiver is the child’s ultimate advocate. Once you have established a supportive role in their life there will be ample opportunities to learn from them as trust is built.
2. Setting Communication Expectations
Frequency, the depth of details shared, and the type of visits will of course vary based on the type of relationship you have with the caretaker. Typically, an immediate family member will have less formalities than friends of varying degrees. Here is a list of tips to remember when communicating to offer support:
· Have low expectations of speed and length of replies
· If you want to be a truly supportive person in this time. you must have grace and more grace for the caregiver
· Do not take things personally. Maybe they did not respond because the attending doctors have changed and there was a big mix-up. So, in that moment, they must advocate for what is best for their child
· Maybe they got zero sleep the night before on the stone hard mini sofa and are finally getting a 45-minute nap
· Maybe they are overwhelmed by their phone and mountain of messages to answer
· Sometimes less is more. “Hi Heather, do not feel the need to reply to this text. I just wanted you to know that I was thinking of you and Baby Jane, and we are praying for her recovery. We are here for you guys.”
· No novel to read. To the point. Pressure has been taken off to reply. This lets the caretaker know they are cared about.
3. What To Say
The #1 thing to remember when supporting a person who has a child in the hospital (even when things seem very complex and tricky) is *consistency*
Often, the illness, condition, diagnosis is not just a one-time occurrence, but support can be treated that way.
Support typically comes in like a tidal wave at the announcement of a diagnosis. Then, after the first hurdle has been jumped, people begin to taper off. *This is where you can be different.
Real support is consistent, but consistency does not mean you have to blow their phone up daily. It is more about being in it for the long haul and seeing that support through for as long as necessary. Your consistent support could come during a one-time hospital admission, or it could require long-term support if this is a chronic condition.
You never know what kind of day the family might be having, so while it’s not always a good idea to text and ask for updates, words of encouragement can land on even the hardest days and lift someone’s spirit.
Some great things I heard while Louise was in the hospital were:
“Thinking of you and Louise every day, and lifting you up in prayer all throughout the day”
“Kyle and I love your family so much. We know this time is so hard, and even though we can’t be with you in person, you are on our hearts and minds and we are with you in spirit” - Katie
Another thing Katie and I both loved were scripture with pretty art/graphics we could screen shot to save as our phone background every few days.
The following Do’s and Don’ts are recommendations from the ALF parent advisory board
Do:
“You are loved and your child is not only loved, but celebrated. No matter what, we are here to walk this with you”
“Try to celebrate the little wins, I know so much is going on, but pause to give that celebration y’all need and deserve”
“Look for the miracles, they are there you just have to look for them.
Don’t:
*Avoid Cliches at all costs*
“I cannot imagine” -- That phrase puts the focus on you and your feelings on that matter. Not helpful
“God only gives you what you can handle.” -- Not only is that untrue, but it makes caregivers in that situation feel inadequate.
“It’s a marathon, not a sprint.” -- I’ve personally heard this hundreds of times.
“Everything happens for a reason” – Dismissive.
“Your child’s experience makes me so grateful for my healthy children” -- how nice for you!
4. Write Down Important Dates
If the child’s caretaker told you, “We have an echo on 10/1” or “looks like her first treatment is set for 11/15” pause and put that in your calendar with a couple reminders/alarms. Odds are, you would not remember that date otherwise and then when it pops up you can check in. The care that went into remembering that date is HUGE to a medical parent!
5. Pay Attention When A Caretaker Goes Into Detail On Certain Topics So You Can Circle Back
This will allow you to ask questions like:
“You told me last month that she was starting to receive feeding therapy. How is that going?
Do you feel like the therapist is a good fit?”
It is amazing how a seemingly small act like remembering what is going on in their world can boost the caretaker’s mental health; when this happens, the caretaker feels less alienated and that someone is pulling for their child.
6. Limit Unnecessary Questions (even if they are to give support) When A Child Is Critically Ill
Do you need an email address to send a gift card? Pause and think of who else might know that information instead of the caretaker. We want to keep their phones as freed up as possible!
7. Create A Playlist
Music is a huge source of emotional support. The caretakers spend a long time in a cramped hospital room that is filled with beeping machines; every beep is a haunting auditory reminder of the gravity of their current situation. Music is magic and can create an entire change in mood both for caregivers and patients! Make a playlist for mom and dad and if the child is old enough, make a playlist for them! Focus on light and happy genres. I made a worship playlist when Annie was in the CICU and Spencer and I clung to it. I cannot describe how much that music helped me when I had no one to talk to because of Covid restrictions.
Music, and that playlist specifically, is still an emotional support for me today!
8. In-Person Group Visits
“Friends showing up to have coffee with me, bringing care baskets for Beckett or me and not being afraid of the hospital meant so much to me” -- Kaydee, Parent Advisory Board Mom.
Now that visitors are allowed to go into patient rooms again, don’t forget your presence is needed! Of course, do not expect a parent to always be ready for visitors, be respectful of their wishes and only go when they say yes.
9. Nap Sitter For Infants And Toddlers
When children are ill, it can be hard or impossible to be away from them. Parents don’t want to miss Doctors rounding or popping in at unexpected times to discuss their child’s plan of care. Now that visitors are allowed, offer to come and sit with the child just to be an extra hand so mom can take a nap, go for a walk, or go down and get food.
Logistical Hands-On Support
Much like the depth of communication, how much you can logistically support a family will depend on the type of relationship you have with them.
Here is a list of topics to consider.
1. Find Out All About The Hospital The Child Is Staying In
Every hospital is set up differently and has different dining options, gift shops, and types of ICUS.
Find out which restaurants are in the hospital. For example, some have Starbucks or other franchises where gift cards can be used (and some have franchises that do not accept gift cards!). Google or call the hospital to find out what is available.
Purchase gift cards and email or send via text.
Call the gift shop and have them help you select a gift to be sent up to the room. It could be as simple as a mylar balloon or as big as a basket filled with toys, books, crafts, and games. If you know of a group that is checking in on the child, encourage a group gift!
Reminder that many hospitals do not allow latex balloons. ICU’s and oncology do not allow fresh flowers because of the added risk of bacteria that can cause infections.
Find out if the hospital charges families for daily parking (as horrible as that is, some do). Sending a Venmo to help offset this expense is a great idea.
2. Meal Trains
When setup properly, meal trains are a huge source of help. They saved my sanity and helped our family big time.
However, some parents do not want them. This could be for a multitude of reasons; because no one has offered to set one up, because planning is too overwhelming at that time, or they just do not have the bandwidth to see company at drop off. If any of those situations are the case, offer to take over setting up and send a simple text saying something like this to the caretaker:
“If you would like a meal train to take stress off, I would be happy to do it! I will just need the following: address, ideal time for drop off, meals/ingredients to avoid + dietary restrictions to list, date you would like it to begin, days of the week or holidays to avoid, preferred meal delivery company for gift cards (Uber Eats, Door Dash etc.), favorite restaurants to receive gift cards to via email”
When you send the message above, you have given a clear and concise list that can be answered all at once without too much effort from the caretakers that will benefit them big time in the long run. The more info that is given, the better the meals will meet their needs.
If the family is stressed about potential unwanted guests lingering, include a note on the meal train that says, “Please leave meal in disposable container if possible to reduce need to return Tupper wear. Leave in cooler on front porch, family is trying to spend as much time as possible together right now during the evenings. Thank you for your support!”
The above-mentioned plan can be used when a family is finally home from a hospital stay. It can also be used during a longer stay to help the other care taker and siblings with dinner support.
Another option is to find out the families’ preferred meal delivery company and get them a gift card. This is helpful because eating schedules are always up in the air during a hospital stay. Even better, encourage a large group of family or friends to all go in on one big gift card. One is better than several smaller amounts whenever possible.
Don’t forget breakfast and lunch! Most people think to send dinner (which is great!) but mornings are the busiest time with Doctors rounding and lots of staff checking in. It is easy to accidentally skip breakfast because of the inability to step away. Send a simple text like, “Hi can I send you breakfast? If that would be helpful, what would you specifically like and what would be ideal drop off time? Here are some ideas if you need some: breakfast burrito, acai bowl, chicken biscuit, smoothie, bagel.”
One text with all questions listed is so helpful. From there, either have a delivery app bring it or drop it off yourself. Either way, when it is dropped off send a confirmation text to let them know where it is.
3. Groceries
Offer to pick up groceries and drop them by the house. But be specific, “If groceries would be helpful send me a list and I will pick up those things and drop them by!” If mom says “yes”, but they don’t know what they need just take it upon yourself to pick up the basics: Milk, eggs, bread, bananas, blueberries, ground coffee, etc. If they have young kids, grab a lot of snacks -- applesauce pouches, snack bars of all kinds, chips, crackers, etc.
One of the very best gifts we were ever given was a giant bin of fun and healthy snacks from Trader Joe’s & Central Market gifted from my local Fit4Mom group who all went in on it together. I loved that they picked so many healthy things because my body really needed that during that time! (there was also wine, yay!)
4. Time Outside
Encourage the caretaker to take mental breaks by spending time outside. When Annie was in the thick of her recovery it was the great Texas winter storm and energy crisis of 2021, and the city was frozen solid. I was literally trapped in the CICU for 4 straight days. So, trust me, I know that bad weather can make things tricky. BUT it is so easy to get in a “caretaker black hole” where you literally forget to step outside for fresh air and sunshine. If you are coming to see them, encourage a walk outside!
5. Adaptive Clothing For Child While In Patient *especially an ICU
Request a onesie from our “give” page for children undergoing surgery stays involving an ICU recovery or extensive stay! Other products from Spoonie Threads are also linked under our “Shop” tab as well to purchase more on your own. Dressing a child during a hospital stay can be very challenging so this is a great need to help meet!
4. Sibling Care
This is an entire blog topic on its own and deserves a great deal of attention. It has been decided by mothers, based on many conversations, that the single hardest part of a hospital stay aside from your child who is sick or injured is managing the siblings at home. It feels impossible to care for both and the pull to be in two places at once is exhausting. Acknowledging sibling support is crucial. Because of what is happening to their siblings/parents being away, they will almost certainly be in an emotionally difficult place. During this stressful time, it is important to offer a home or place that the sibling feels comfortable, safe, and loved. I had lots of acquaintances offer to take Wells for afternoons or weekends, but the truth was that he didn’t know their home or them well enough for that to be a good idea. I made a list of friends and family’s homes he loved going to/playing at and had to ask for their help both during the hospital times but also during the numerous appointments after the hospital stay!
Find out what activities that sibling loves and offer to take them there; going to the movies, a day at the trampoline park, the library, bowling, the arcade. Knowing their child is happy and being cared for will be a big weight off for mom and dad. Does that child have a babysitter they love and like to be with? If you don’t have the time or know the child that well, offer to pay for a day of babysitting!
6. Don’t Forget Dad
Women are pretty good about checking in on women. I received so many baskets in the hospital for Annie and for me. We were both able to use the gift cards for meals and coffee. However, there was only one couple that specifically thought of Spencer and sent him a care gift. Jeremy Moore brought Spencer an allocated bottle of whiskey to take the edge off, and he was grateful for it. The truth was, Spencer was carrying just as many emotions as I was. He was doing so much to help cover Annie’s overnights all while maintaining his job. Don’t forget Dad. When you support Dad, you support the health of the entire family.
7. Hotel, Airbnb, Flights, and Gas Cards
Families often have to travel to get medical care.
Take hotel costs, extended rental costs, flights and gas into consideration.
8. Mattress Toppers
I have sent probably 20-30 twin sized foam mattress toppers to parents during their extensive hospital stays.
Something comfortable to sleep on saved us during those months of sleeping on what felt like a boulder.
The couches that caretakers “get to” sleep on hardly deserve to be called furniture.
They are hard and made of material that must be sanitized and wiped down – does that sound comfortable?
Good, or at the very least, decent sleep is so vital for parents to be able to take on what is required of them physically and emotionally.
These toppers cost $25-$30, and are worth every penny.
