Well, we are back for our 5th hospitalization and it looks like it’s going to be close to two weeks minimum. Hospital stays are emotional marathons. In a day you could go from high stress, to boredom, to homesick, to happiness, to stress, to boredom again, and repeat. You never know what a day will bring. There is a new and somewhat weird routine you fall into, but you’ll still be in a whole new world. For days or weeks at a time. It can hard to know how to adjust until your second or third time.
Over the last six-months I have learned a thing or two. Let me share…
First, don’t be scared to get comfortable. You can tell parents of long-stay patients or frequent flyers because they are walking around by their wrinkled clothes and pajama pants. When you first get to the hospital you are very aware you are in a public space, and on someone else’s turf. But let me tell you, it’s not only okay to get comfortable, it’s one of the major ways you will survive.
Getting comfortable could be a little bit different for everyone. It could mean bringing your own blankets and pillows from home. It could mean putting photos out on the night stand. It could mean rocking the pajama pants and baggy t-shirt all day long. Whatever you need to do that adds a little bit of comfort will go a long way.
Remember: It’s not just important to make the patient comfortable in the hospital space, but the family or caregiver too. It’s a taxing stay for all involved. You won’t be able to best support the patient if you are not taking care of yourself.
Second, think differently about food. Ah, food. A necessary evil. Long hospital stays are a lot like camping. You have limited resources to cook with and space to store food, so it’s time to get creative and basic. Some tips:
– Bring items that could be made with hot water: You typically have access to hot water or water and microwave, which means you can have oatmeal, instant soups, mac n’ cheese, hot chocolate, tea, etc. The side benefit is they are all cheap and can be bought at any grocery store or even corner stores.
– Bring an ice chest: Not a huge one, but it’s better than the three square inches you may get in a community fridge (if your hospital has a community fridge). Not to mention that if there is anything that is opened or eaten in the hospital room cannot and should not be put back in the fridge (they don’t want contagions from the contagious patients to spread to other patients). This makes saving left overs impossible and using the fridge a little scary when others don’t follow the rules. You can get a temporary or small ice chest for $20 or less. It’s a life saver! With it you can save left overs, have more food available (you don’t always know when you can leave) and it’s a little less scary knowing you won’t catch something horrible from the fridge.
– Don’t be afraid to accept meals or ask for people to bring you meals: This is something that took me a while to learn. I didn’t want to make people go out of their way or be a burden (which is kind of funny because i adore bringing people meals myself). Honestly, now when my best friend asks what she could do, I say “organize meals” because the help is invaluable. If you can, take advantage. People want to help.
Third, keep whatever routine you can. It’s important for long stays that you try to be intentional about keeping some sort of normalcy. Do you always wear the same necklace every day? Do it. Do you start your morning with coffee and a donut? Do it. Not all your normal routines, but if you can with minimal effort, do it. Sometimes it just takes identifying those little routines you don’t usually think about.
At our last stay, I found mine — eating an apple at night. When my daughter starts winding down for bed, we give her a snack. It helps her sleep through the night. She usually has an apple. I eat half of it when she does. So when I am in the hospital with my son, missing my daughter, feeling disconnected from our normalcy, I keep eating an apple every night. It makes me feel less…off.
Fourth, make an effort to keep up your relationships. If you are like me, hospital stays make it easy to get isolated quick. When things are stressful, busy, and I haven’t showered in a couple of days, socializing isn’t the first thing on my mind, but it’s still really important. Make phone calls, text friends, post on Facebook, and invite visitors. Just remember, you can always say no or not right now if it gets too much. You can always put the laptop away or hang up the phone, but I think you will be surprised how much comfort and love from others, even when you think you don’t want it, will make your day a little easier.
A note for married people: Hospitals are not always friendly to marriages, especially with children are in the picture. Typically one person is at the hospital with the patient (or is the patient) and the other is working, handling kids at home, etc. When hospital stays become weeks, it means being separated for long periods of time, or even if you are not necessarily apart much, it means little to no quality time or time to talk about something other than survival logistics. It’s important to be intentional about keeping your romance and marriage strong, though. Some things you can do:
– Call each other before bed. Remember when you were deeply in love but not living under the same roof, and those late night phone calls were important? Make them important again. Even if it’s a quick goodnight, it can help both parties feel less lonely or neglected.
– Still have dates. When you are married with kids a date becomes any chunk of time where you are able to be with and focus on each other. Kid in the hospital? Have grandma or a hospital volunteer come and sit with them for an hour so you can go to get a Starbucks together. One of you in the hospital? Kick everyone out, take medical talk off the table, and spend time just hanging out watching a favorite movie or sharing a hospital pudding. Neither option are the most optimal, but it helps.
Fifth, treat the staff as friends. Living in the hospital has a weird dynamic. The staff help clean up the grossest and most TMI of messes, provide a smile and emotional support, and walk in and out of your room no matter if you are in PJ’s or an evening gown. It’s hard to know how to treat them. It can be hard to know your role, but treat each one as a potential new friend. You don’t need to get to know them each time they walk in, but be polite, give a smile, and engage in conversation. Have a bad day with one? Forgive and give them a second chance. Because guess what? They may be having a bad day too.
We have made some great friends from just staying in the hospital and seeing the same friends day in and day out makes passing the days easier. I fully recommend it. You won’t love every one, but you’ll get to know some great people.
Sixth, be honest but understanding with your needs. It can be easy to either be shy or pushy with your needs. There is a middle ground to be had. It can be surprising the resources hospitals are equipped to serve, like having a Child Life Specialist on hand for the how do I tell my daughter about her brother’s cancer? questions or free coffee in the parent pantry. But some needs, as much as the staff would like, they don’t always have (like lip balm) even though it seems simple. Stand up, ask questions, but accept when the staff can’t fulfill them. They try hard. There are a lot of logistics and legal junk the hospital has to juggle. Not everything is as easy as it seems.
Seventh, try to have fun with it. If you are going to be there, there is no reason you can’t at least try to make the best of it. Decorate your hospital room with Christmas decorations or fun drawings. Make a game of guessing which nurse you will have next or what will be for dinner. Use it as an opportunity to have a movie marathon. Catch up on the book that has been on your bedside or that knitting project you’ve wanted to tackle. Or if you are me, write for the blog you started a year before but rarely posted in.