When you live with rheumatoid arthritis (RA), it can feel like you are always on the receiving end of help from others. However, your chronic illness experience makes you a valuable expert in navigating the health care system positively and constructively, which can be vital when a family member is in the hospital.
In this column, I’ll share tips on how to support a loved one being admitted to the hospital. These skills are drawn from my own experiences helping family members through hospital stays, receiving support myself, and my background as a social worker in the hospital system.
Just a few months ago, we had a scare when an ambulance took my mother to the emergency room with a suspected heart attack. She was admitted for testing, and it was a tense week, but I’m happy to report she didn’t have a heart attack after all. This wasn’t the first time I’ve followed a loved one to the emergency department. As I hurried to the hospital, I mentally prepared to step into the role of caregiver and advocate.
Thankfully, I was not alone — other family members also clicked into their roles on our team. Together, we supported my mother through a week in a hospital bed and throughout the recovery process at home.
Without a plan, this can be exasperating, chaotic, and confusing. However, by following the steps below, we managed to get through it together. In the end, we were relieved, tired, and a bit frustrated — hospitalization is a wild ride — but the nurses were wonderful, the food wasn’t too bad, and my mother returned home with answers and a new medication. What more can you ask for?
Get Ready to Advocate
For decades, health care underfunding has meant that tasks related to what’s called comfort care — ice chips, blankets, help with eating — are unofficially handed to family members so nurses can focus on the medical aspects of care. This can be surprising if you’ve never been in a hospital environment.
Here’s another surprise: You may also need to advocate for medical care, including timely pain medication, test results, and plans for going back home (more on that later). While the staff are usually wonderful, they are often rushed off their feet. In this pressured system, the squeaky wheel gets the oil, so don’t hesitate to push politely when necessary.
Choose a Primary Contact
Eight years ago, severe complications to the flu. Very quickly, my family learned that to reduce conflicting information, it was important to choose one person to be the lead in conversations with doctors and other staff.
In my case, that was David, my partner, and he sent out daily emails on my progress to everyone else. It’s a full-time job to be ill or recover from surgery while also being sent for tests and have unpredictable drop-ins from the medical team (usually in the middle of a nap).
It can be really hard to remember what happened when, so it may help your loved one to delegate the job to someone else. With your background as an expert patient, you may be the obvious choice to take charge of the information.
Create a Patient Notebook
If your family member is in the hospital for more than a few days, they will be exposed to a lot of different medical folks, all of whom share information. To keep track of it all, bring in a notebook and a pen (as you may have one of these for your own medical journey). Your family member can use this to record questions, the names of staff, and information shared with them.
If they can’t write, and the designated information keeper isn’t around, they can ask doctors, physiotherapists, and other members of the medical team to add important information. This can be a valuable way to remember information during the hospital stay, and will also be useful for the follow-up with a family doctor after they are discharged.
Rotate Visits and Home-Related Tasks
Supporting someone in the hospital is time consuming and exhausting, so don’t do it all yourself. Hopefully, other members of your family, as well as close friends, will ask what they can do.
Create a schedule so the patient has a visit most days and make sure everyone understands that their job is to listen, pick up better food, or simply sit next to the bed and comfort by their presence — even if the patient is napping.
Your patient’s home may also need attention, such as caregiving responsibilities (humans and pets), watering plants, cleaning out the fridge if it’s a longer hospital stay, paying bills, and more. Make sure one or two other trusted people have what they need to keep things running at home.
Prepare for Discharge
As you begin to hear talk about going home, ask to speak to the social worker. Getting temporary or permanent home care can make the transition much easier and that may need to be assessed in the hospital (this will only be granted if someone needs help with personal care, such as showering).
A social worker can also help you connect with community resources like Meals on Wheels or signing up for parallel transit. The decision to discharge can come very quickly, so make sure that things are ready at home, including fresh groceries and a newly changed bed. It’s also a good idea to line up the support team to continue to help your family member during the first few weeks after the hospital stay.
Although this article focused on supporting someone you care about through a hospital stay, these tips can also be useful to help your family member navigate the health care system as an outpatient.
Sharing tasks with your family and friends (rides to the doctor, grocery shopping, finding community services) may continue to be important, and that medical notebook will always be an essential tool. Thanks to your RA, you’re an expert in managing the administrative side of medical interactions and you can have much to contribute on someone you care about is sick.
One last pro tip: You can’t help if you burn through all your energy, so make sure you also get plenty of rest when you’re supporting someone else.
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