Creature Comforts

One of the most challenging aspects of not being home is trying to make your surroundings feel more "home like". That is never an easy proposition in a hospital! After the first month of Elise's cancer treatment we were fortunate to have someone give us some tips to make our stay a little bit easier. Now that we are so far removed from treatment, and have been fortunate to not have to spend large amounts of time in the hospital, we have strayed quite a bit from those tips. As I was laying in the really uncomfortable parent bed the other day I found myself wondering what I could be doing better. Then I remembered those great tips!

The first of those tips was to get an "eggshell mattress pad". Back in the old days you could ask a nurse for them and they would bring you one. I'm not sure if it was because we were a cancer family and you were guaranteed of month long stays, or if times have changed due to COVID, but they don't offer these up any more.

But, a quick Google search found that they had them at the local Wal-Mart for $10! What a world of difference it made not laying on the hard old "mattress" that is provided. The mattress also serves as the seat of the couch and has been around since we were first here 11 years ago. They are certainly well loved. Anything to provide some extra padding is great!

The second tip was to bring your own pillow! Especially during COVID times. The hospital used to provide reusable pillows that were encased in some kind of plastic like material that could be wiped off in case of "bodily fluid contact". In a hospital, and our life in general, that is likely to happen.

But, during COVID times the hospital has these new extra flimsy pillows that are worse than anything you can find at the local dollar store. The intent is to throw them away in case of any bodily fluid contact. They are about 2 inches thick and filled (that is a very loose term) with some kind of mystery fiber that really only helps your head go immediately to the mattress below. I have been stacking pillows at least 3 high to feel like there is any kind of support. Finally, three weeks in to our stay, I decided to get my pillow from home. Needless to say, it was a MUCH better night of sleep!

Other helpful tips have been:

•  Bring your own bath towel. I am not a small human being. The loin cloth sided towel doesn't really cut it for daily use.
  
• Unpack your suitcase. Treat it like a hotel and unpack everything that you can. Whatever you can do to make life feel like it is less temporary will help you to feel more settled.
• Bring food and drinks that you like to have from home. The rooms have refrigerator's with ample room for several days. There is not a ton of room for extra supplies like a pantry, but there is space for a few days.
• Bring stuff to do. An idle mind (and hands) will do you little good. A break is nice for everyone, but too much time with nothing to do will only lead to more stress. If you have too much free time on your computer or device you will try to become a Google expert. When faced with medical issues, Google is rarely your friend. Leave it to the professionals to provide you with reliable resources to better understand. Tell your medical team you would like some resources and they will direct you.
• Get outside every day. This one can be hard! Depending on what is happening every day, finding the time to do it can be difficult. As the caregivers, we are always waiting for the next team of doctors to stop by and chat on their daily rounds. Staff is always most likely to stop by in the 15 minutes you are out of the room. You might have to get up extra early (this is REALLY hard for me) or get outside after dark. Whenever possible, try to get out in the sunlight. It will do you the most good.
• A nurse is a wealth of knowledge. Ask them about everything! You know you (or your child in our case) better than anyone, but nurses see hundreds of patients in a year. Their knowledge is immense. They have seen so many things that you have probably never even heard of or considered. Use them as the resource that they are. And, most importantly, let them do their job.
• Understand your importance (see my previous post about perspective). Sometimes you are the most important patient in the building, but most of the time you are not. Is it important for you to be demanding about getting something immediately if it is truly not urgent? I can remember standing in the doorway of Elise's ICU room when she was surrounded by 20 people working on her urgently. That was easily the most terrifying experience as a parent. There was nobody more important in the ICU at that time. That same scene would be replayed many times in the rooms of many other kids when we were there. Truly think about how important it is to push for something at any given time. There is a time for everything. Be aware of when that time might be for you.

Different doesn't have to be terrible. Nobody wants to stay in a hospital for a prolonged period of time, but there are more people out there doing it than you may realize. A few tweaks to your daily routine and the addition of some "creature comforts" will help to make life a little easier. It is the little things that make a difference.