Parents and caregivers of people with special needs may spend a good deal of time in the hospital, unfortunately.
While this almost always proves to be a stressful time, I have learned a handful of tips that make hospital stays a little less stressful for the child in the hospital, the parent or caregiver at the hospital, and the rest of the family back home.
1. Prepare meals or ask for meals to be delivered
While hospital stays are not always planned, when they are, planning meals ahead can be helpful. One of our children recently had a major surgery.
In the weeks leading up to surgery, I cooked double when I made dinners.
We would eat one meal and I would place the other in the freezer to be used during the hospital stay.
This allowed me to worry less about if things were taken care of at home while I was with our child in the hospital.
We also let some friends know that providing meals not only during the hospital stay, but in the weeks, after would be a blessing.
It is also important to prepare food for the parent at the hospital to eat, as hospital food is not always provided or appetizing.
It can be easy to skip meals when you are focused on caring for your child, but this decreases your own strength and stamina.
My husband or I make sure to pack some of our favorite snacks and non-perishable meals to take with us.
2. Make documents/signs for the things you have to repeat
One of my pet peeves about hospital stays is how often I have to repeat the same information to different people.
Over and over again, medical team members come in and ask the same information about medical history, medications, etc.
Therefore, I have created a document for each of my children who have medical needs that lists their health history, birth history, past surgeries, diagnosis, medications, and any other information that is usually asked for.
At the top of the page, I list a few things about who the child is such as: “loves to laugh, super smart, loves The Grinch, communicates with eye gaze” so that staff are reminded to see the child for who he/she is and not just the medical needs.
I print off multiple copies of this document for each hospital stay and am able to hand it to each person who asks without worrying about getting the paper back.
Another way I use paper documents in the hospital is to advocate for my child.
One of my foster children is blind and staff almost always start working on her without speaking to her about what is happening.
I made a document that hangs over her hospital bed that says “Hi, I’m _________! I cannot see you but I can hear and understand you. Please talk to me about who you are and tell me everything you are doing. Please tell me if it will hurt or not.”
I made almost an identical sign for my foster son, explaining that he understands and loves to be talked to even though he is non-verbal.
These signs are a constant reminder to staff that these children are people who have feelings and not just medical needs.
When these signs are hanging over my children’s hospital beds, I see a change in how staff interact with them and I do not have to constantly narrate or ask each staff person to treat my children a certain way.
3. Say yes (and no) to visitors
When we have a child in the hospital, there is usually someone who offers to come sit with the child so I can get away from the hospital for a while.
I tend to come up with excuses to turn these offers down, as I prefer to be close to my little one at all times while he/she is hospitalized.
However, I have discovered that I love to have someone come sit with both me and my child at the hospital.
During our most recent hospital stay, my little sister came by with coffee and stayed for a few hours just to talk and be present.
It meant so much to me and I did not feel any pressure or anxiety about being asked to leave my child with someone else.
Hours upon hours in the hospital can feel depressing and lonely. Having a loved one close greatly lifted my spirits.
In the future, I will kindly say no to those who offer to sit with my little one when I do not feel comfortable leaving but I will also ask loved ones to come be present with both me and my child.
4. Don’t be afraid to be the boss
Before I became the mama of children who have medical needs, I tended to believe that doctors and other medical staff were always the expert and I had to follow their every recommendation.
However, I have learned that this is not the case. Rather, doctors and medical staff are one piece of the puzzle and members of a team that I am on as well.
As the mother of my children, I am the one who knows my children best and my opinions should be honored.
Near the beginning of our journey with children who have medical needs, some very dangerous decisions were made and life-threatening situations ensued because doctors did not respect my opinion (backed by fact and experience) in regard to my child’s needs.
Since then, I have learned to speak up and to do it loudly.
In the past, I felt as if I was in the way and had to ask permission to assist the staff. I felt self-conscious when I questioned what was being done.
Now, I feel confident jumping right in and asking about every procedure that is done, medication that is given, etc.
There have even been times that a wrong medication was about to be given and it was my questioning that brought the mistake to light.
While my involvement does irritate some medical staff, overall, the staff respond well and end up respecting me as they see that I am informed and will advocate lovingly and boldly.
I make sure to remember that medical staff are people too and I make a point of being respectful and kind.
My respect for them, as well as for my child and myself as a mom, creates an environment where my child can be well cared for.
5. Keep a notepad and pen handy at all times
Any medical parent knows that the number of professionals who come in and out of a child’s hospital room throughout the day is pretty crazy!
Add up a few days in the hospital and that is a lot of faces, names, titles, information, and care plans to keep track of.
I keep a notepad and pen handy at all times during hospitalizations.
As soon as someone walks into the room, I grab my pen and jot down his/her name, title, and some bullet points of what he/she said.
I also use the notepad to keep track of questions I want to ask and things I want to follow up on.
The notepad system is super helpful for making sure that everyone is on board with the plan and there is not contradicting information.
As a foster parent, this also makes it easier for me to document what is happening each day and send it into our case team.
6. Be intentional about activities you bring for yourself
During some hospital stays, I have had too high of expectations for what I would accomplish in the downtime at the hospital and have brought large amounts of work I wanted to get done.
As it turned out, a lot of the time my child was needing held, comforted, etc, and even when he/she was resting well, my brain felt fried and I had no desire to get work done.
On the other hand, there have been hospital stays where I did not bring anything but mindless activities and after hours of scrolling through social media or playing pointless games, my brain felt anxious and restless.
Instead of swinging to one extreme or the other, I now try to find a mix of activities to bring to the hospital.
I do bring some work with me, but with the expectation that if it doesn’t get done, that is OK.
I also bring a good book I know will engage me, some movies, and other activities that I know can give my brain a break but won’t leave me feeling like I wasted my time.
My main focus is my child and if I do nothing but comfort him/her, that is fine.
However, I do want to have a plan of how to use the times that he/she is sedated, sleeping, in surgery, etc, in order to reduce anxiety and boredom.
While we all hope that yet another hospital stay is not in the near future, I hope these tips prove helpful when the need arises.