Caregivers Need Care, Too

I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too.

It’s easier to be the person who can walk out of the hospital, but caregivers still deal with a lot: emotional stress about their loved one’s health issues, financial burdens, and trying to keep everything afloat at home. I hope that this week’s column will give you some ideas to support the caregivers you know. Or, if you are a caregiver, help you get the support you need.

Many things can fall through the cracks when a loved one is in the hospital. Even if you do manage to be at their bedside all day, keep your job, feed your other family members, get your kids to school, walk your dog, and pay your bills, how do you keep yourself sane and healthy, too? Exhaustion, dehydration, and stress-related symptoms can become serious problems.

My mom, Holly, was admitted to the University of California, San Francisco, for four months and was required to stay close to the hospital for two months after her discharge. My co-caregivers and I managed to maintain our health and sanity fairly well while my mom was in the hospital.

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I’ve written about the benefits of co-caregiving — how three of us in rotation allowed each other the space to care for ourselves without neglecting my mom. We divided our tasks to allow us to handle our collective responsibilities and manage personal duties as needed.

If you don’t have a co-caregiver, ask someone to visit with your loved one while you take care of things outside of the hospital.

My aunt Shari and I had the luxury of having spouses who managed everything at home when we traveled to San Francisco. But my dad, Ed, had to drive four hours back home at least once a month to keep up with domestic chores. Luckily, some wonderful friends in my parents’ community stepped up to watch their cat, keep the driveway clear of snow, check the mail, and keep the pipes from freezing.

Family and friends kept our homes operational and performed other valuable services while we spent long days in the ICU. My top tip to keep things running smoothly is to write everything down. Make lists of tasks related to medical needs, of people who need updates, household chores, and items to keep you comfortable while away from home long term.

Start with lists, then delegate. For example, Shari did the legwork of finding accessible accommodations so that we would have a safe place for my mom after discharge. She wasn’t yet in San Francisco and was eager to help. She sent me her top choices, making it easy for me to pick one and put down a deposit. I was grateful for her help, which saved me time and energy I could devote to my mom.

Healthy eating is difficult to manage while you’re spending days at the hospital. It can be hard to remember to eat regular meals when you’re stressed out and on the go. This is especially tricky if you’re not at home or don’t have access to a kitchen to prepare food. Eating at the hospital cafeteria or a nearby restaurant is an easy solution, but it can get expensive quickly if you’re buying meals there once or twice a day for weeks on end.

To support a caregiver, you could send gift cards for food delivery services — some options can be found here — so that they can eat well and save money. Usually they need only to provide their email address. If they are at home, you could organize a Meal Train so that community members can deliver homemade meals. It would also be sweet to send Starbucks gift cards so that they can recharge with a coffee.

While coffee is a nice pick-me-up, nothing beats a good night’s sleep. Sleeping in a hospital waiting room is almost impossible, and other accommodations might not be much better. Sending a travel pillow, soft blanket, sleep mask, earplugs, or even noise-blocking headphones could make a huge difference.

A thoughtful idea to pamper the caregiver in your life would be a gift card to a nearby spa or massage parlor. Sitting in cramped, cold, uncomfortable hospital chairs all day causes a lot of aches and pains. Even a half-hour massage will help to relieve tension and boost the mood.

Lastly, don’t forget to check in with them on an emotional level. Let them know you’re there to listen.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.