Thoughts on Offering Support to Hospitalized Families
The vibrancy of the paint colors in our home is what I remember most when I finally left room 303 after 57 days. Every color seemed to pop off the walls – I had not realized how bland and colorless my hospital room surroundings had been until I left them behind.
In the winter of 2010-2011 I was hospitalized for several months due to preterm labor with our twins. Our preemie babies then spent 6 weeks in the NICU which meant that our family basically lived in the hospital from October through February. I marked the time by the passing of holidays. Halloween: check. Thanksgiving: check. Christmas and New Years and Valentine’s Day. Check. Check. Check.
Experiencing life on the other side of the bed for those months shifted my perspective forever. My first two years out of nursing school I worked night shift on a bone marrow transplant floor. The slower pace of night shift and the long stays that go along with transplants meant that I’d spent a lot of time talking with my patients about the hardships of prolonged hospital stays. After spending months as the person in bed, I understood it through the lens of a patient. Both experiences have been valuable in forming this list of ways that you can love people well through one of the most vulnerable experiences they may face during their life.
Mark the Milestones: Every long hospital journey has milestones that must be met in order to be discharged. Babies have to make it to a certain number of weeks gestation. Lab values need to be reached for patients enduring chemotherapy. Post-operative goals must be achieved. It means so much to patients when people learn what these milestones are so that they can remember and celebrate them together. Friday was my “change day” in my pregnancy with the twins. Every Friday I’d get an overflowing of celebration texts and calls. Another week down! The babies are another week stronger! I will never forget how that encouragement carried me forward.
Offer Options: Patients and families are often overwhelmed with painful and difficult choices they have to make during their hospital stay. At the same time so much of their autonomy has been stripped away from them. It can cut down on decision fatigue and also allow for a sense of control to allow them to make as many choices as possible. For example – you could text a loved one and say “These are three restaurants that are in the area of the hospital. I’d love to have food delivered for you, which one sounds good?” This approach allows people to have a small amount of control at a time when they have so little while still offering help in a practical way.
Show Up Without Showing Up: Having visitors requires energy. It also introduces a lot of new germs. These can both be problematic for patients who are living in a hospital setting. I love people and connections so it surprised me how often I didn’t want to have visitors during my hospital months. I never would have expected that. But when your sleep is constantly interrupted and you’re living on the edge of anxiety and fear, it can require too much energy to even carry on a conversation. There are so many ways to show up for a loved one without literally showing up – you can pray, send cards or care packages, celebrate milestone with them, meet practical needs. With that being said, every person and situation is different which leads into my next point …
Don’t Make Assumptions: We are all so unique and each one of our stories unfolds so differently. If you aren’t sure how to support someone: ask them! Not in a very general way because if you send out a message that says, “Call if you need something” – you will likely never get called. Be specific, for example, “I’d really like to be helpful to you right now. What would that look like? Could I start driving your kids home from school? Or could I fill your fridge up once a week for your family while you’re in the hospital?” I’ve found that people are much more likely to accept specific offers of help than general blanket statement offers.
Don’t Send Flowers: There are so many things that patients and families need during a prolonged hospitalization. Flowers aren’t one of them. I love pops of color and beauty as much as the next person but many areas of the hospital don’t allow live plants or any kind of flowers. Plants and flowers can carry fungus and bacteria and therefore pose a risk to patients in any area of the hospital where immune systems are compromised (NICU, oncology, transplant units). The money spent on flowers could be used for so many helpful and necessary things that patients and families truly need. Prolonged hospital stays almost always place financial stress on families – send gift card for gas or groceries instead!
Don’t Be Easily Offended: This experience is about them not you. This can be hard to understand and accept because even if someone is one of your closest friends, it can be exhausting to keep everyone in the loop and up-to-date. Don’t take this personally. Plans change quickly in a hospital setting and it can be really hard to keep everyone informed. If your loved one hasn’t already set up a point person – offer to do this. In the digital reality we live in, this role often now is done on a blog or CaringBridge or Facebook account. But if your loved one is older or not comfortable sharing personal information online, offer to be the one to pass along updates to a community. This way people are updated without having to make multiple calls/texts/emails.
The need for healthcare is a great equalizer and part of what makes us human. At some point in your life you will either be the patient or you will be walking alongside someone who is. We were loved and cared for so well during our months in the hospital that it still brings me to tears when I think about the ways people showed up for us. It is humbling and hard to accept help. It is also beautiful to let ourselves be cared for by the people who love us. May we have the courage to ask for help when we need it and the willingness to offer help when we’re able.