This week I’ve been in South Carolina at a local hospital where my mother is staying following a bad fall in her house, alongside rapidly accelerating dementia. I was on my way to a public health conference in San Antonio last Saturday when I got a text from my sister. Rapid travel plans were made, and emails canceling life and works plans were sent. Flights were taken, and a car was rented.
The good news: thanks to a few experienced, powerful and compassionate folks who work in the broken healthcare system here, we are making progress in finding a safe care facility for my mother where she will be cared for and where we and other family can visit her. I cannot adequately convey how complicated this process is, how many barriers there are to getting appropriate care, and how underfunded, understaffed and inequitable the elder care facilities and services are (in South Carolina and the United States in general).
Moving on…
My sister and I have been at the hospital for a week now, and we learned some things about navigating hospital environments where there’s high stress, lots of waiting, and no real control over schedules or outcomes. Herewith a short list. I would love to hear from any of you who have tips of your own to share; feel free to add them in the comments.
One: get outside of the hospital when you can, even if it is on the hospital sidewalks and grounds.
Get outside of the room of your family member intermittently, even if it is to walk some loops around the hallways. Get to the ground floor where there is more ordinary bustling activity (people ordering and eating food, people delivering flowers, student health workers in groups walking and talking).
Talking with doctors, nurses and social workers has been super-important, but it doesn’t comprise the bulk of my day. Sitting makes me feel creaky and cranky. So moving, changing locations (even within the hospital) and walking outside (even for short bursts) helps me regulate and reset.
Two: find out where the hospital staff get their meals and snacks at the hospital and go there for food.
This hospital has a few commercial vendors of sub sandwiches (Firehouse Subs) and coffee (stripped down Starbucks), but it also has a local family-owned and run cafe called Sweet Tooth. On the front counter you can see baked goods galore. But in the back, there are homemade chicken salad and pimento cheese salad sandwiches, homemade green salads, and a delicious soup of the day. On our second day, we spotted a line of staff in scrubs, all waiting for the soup and sandwiches, and have been frequenting the place ever since.
Three: leave the hospital each day at a decent hour (however that translates) for downtime before attempting to sleep.
My sister and I have our laptops, phones, chargers, cooler bags, notebooks, etc. with us each day and have gotten good at turning my mom’s room and corner cafeteria tables into temporary offices. We’re both juggling work tasks, logistical healthcare decisions and family caregiver tasks. Our mom is well looked after by nurses, techs and hospital sitters assigned to her. She prefers our company, though, and gets distressed when we take temporary breaks or leave at the end of the day. It’s hard to go, but we do it in order to recharge as best we can for the next shift and the next day.
Four: do what you have to do to find a place and a way to sleep each night. Sleep deprivation is the enemy of everything good and important.
My sister and I are staying at my aunt Cathy’s small and lovely house, ten miles from the hospital. There is one guest bedroom, which my sister is using because she is not an easy sleeper. I have been encamped on her living room loveseat, which I’ve made work by creating a combined soft infrastructure of ottoman, loveseat, mattress pads, pillows and throw blankets.
One of my superpowers is being able to sleep anywhere, partly through willingness to commandeer anything in the house and partly through my determination to rest no matter what. 🙂 I also travel with sleep mask, pairs of ear plugs and soothing audiobooks. Developing whatever strategies help has been key to surviving this latest family emergency.
Five: find a little time away from the situation in whatever way you can.
My way to achieve this is by driving my own rental car to and from the hospital, or to my mom’s house, or to do errands. Even ten minutes by myself in the privacy of my own (for the week) Hyundai Elantra gives me space to breathe.
I hope that my mother will be settled in a care facility by the end of this coming week, so I will be taking my own advice (and looking for more strategies for self-care) this week. Any tips you all might want to share?
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So sorry you are going through this. Nothing can make it easy, no matter how great the care system might be. I have spent many days and nights in a hospital with a friend with severe physical limits. Her brother and I took turns doing day & night shifts when she was there for a week or so with Covid a couple of years back. (We had both had Covid & recovered fairly recently, so were not worried about contagion.) Your advice sounds good to me.
I guess, looking ahead, I might decide on frequency of future visits & try to get them spaced so you can minimize the need to make emergency trips. I might also consider, if your family can manage it, hiring someone to help your mom for a few hours here & there. As you see in the hospital, there are not enough workers to get things done quickly, or to respond to calls, even urgent ones. (My friend can’t turn over by herself; needs help with a bedpan, help getting pills to her mouth, basically, help with almost all daily physical requirements, so we really got a clear look at the system’s limits.) A care facility will be more about care, but also be staffed with people with less – or no – formal medical training. So a friend or a consistent helper can make for greater peace and comfort. (I absolutely agree with you about our system’s problems, but still will step in for my people in the way the system will not whenever I can.)
The key to all of this is essentially what your many good recommendations say: you’ve gotta take care of yourself to be able to take care of anyone else for any length of time. Best wishes to you as you go through this rough patch in your life.
These are all solid tips for trying to mitigate a really challenging situation.
I think my sister and I found writing down and sharing our questions before rounds helped us not carry them around all day.
Another was protecting and limiting time to cry or worry. I saved time to cry on my morning walk before going to the hospital.
I’d take 10 minutes and write all my worries down before leaving the hospital each day. The worries could wait until I got back.
I’m glad you & your sister have each other.
Good tips, all. This one is not applicable to your situation, but is for many. While your loved one is in the hospital, they have full time care. When they leave (if going home) they won’t have that. Don’t burn up all of your available time off while they’re in the hospital so you have no ability to provide care/assistance when they get home. I had many patients whose family wanted to essentially live in the hospital but then had no ability (or, sometimes, interest) to provide care or assistance after discharge. In the US, if you don’t qualify for a rehab facility and your family can’t or won’t assist after discharge, you’ll have a massive bill for care (which may have to be paid in advance).