Caring for the Caregiver: “You are not alone”
"How are you doing?"
That is a question far too few caregivers hear as they pour their energy, time and compassion into helping a loved one through illness or injury and subsequent rehabilitation. But it is a question we always ask at the Marsal Caregiver Center, inside Burke Rehabilitation Hospital. The center, which opened in 2018, is the first and only caregiver center in the country located in an acute rehabilitation hospital.
We know caregivers are an essential part of the team that supports each patient on their physical rehabilitation recovery journey. National Caregivers Month gives us a special opportunity to honor our patients’ family caregivers, as well as the tens of millions of caregivers across the country. But in our very structure and staffing, we celebrate and support these caregivers every day.
“Caregivers play a critical role in patients’ recovery, not only here at Burke but in the transition to next steps,” says Marlena Orme, a licensed clinical social worker who directs the Caregiver Center. “We want them to know that they are not alone, and we want them to know how much they matter.”
The Caregiver Center is more than a serene, tranquil space for caregivers to come for respite and recharging. It also includes information and resources, as well as trained staff to support, educate, answer questions, and connect caregivers with the resources and referrals they need to navigate a complex medical system and with support available in the community.
Says Toby LaMarche-Deutchman, a Burke volunteer trained to support family caregivers when they come to the center, “I always ask how things are going with their loved one. Many times, they want to tell me what the patient is at Burke for, how it is going, what they are afraid of, their hopes and feelings.”
Wherever you are in your caregiver journey, here are a few tips to keep in mind for getting the support you need—and getting through the day.
Connect with others
More than 1 in 4 Americans are right now serving as caregivers to a loved one, according to a recent poll. And yet we know just how isolating and overwhelming caregiving can be. “One piece of advice I’d give is to connect with others,” says Marlena.
She recommends reaching out to your own supports, family, friends, spiritual community—whatever your sources of strength or comfort are. Let them know what you need, whether that is a sounding board, connection to resources, or a respite from caregiving if possible.
In addition, find a support group in your area (or online) to share experiences, challenges and hard-won solutions. Telling your story to people who have been through similar experiences can be very powerful medicine.
Take care of yourself
Caregiving can feel like you have to put your loved one’s needs before your own. But remember that you can only help take care of someone else if you are taking care of yourself first.
This includes eating as healthy and regularly as possible. If you are at home, try to keep good food on hand, whether you eat with your loved one or carve out space for your own meal. Also take time to be active, especially in something that brings you joy, such as gardening or walking in the park. Sleep is also important; try to put structures in place that allow you worry-free hours during the night.
Even though so much of your energy goes towards your loved one’s health, it is critical that you look after your own health, including getting to your own medical appointments as necessary. Our Caregiver Center offers “stress management technique” workshops on self-care strategies, including breathing techniques and other easy-to-use strategies.
“Caregiving can be stressful,” says Marlena. “What you do for yourself will also help your loved one. Take the time to recognize when your stress is taking over and learn ways to manage that stress. This is the truest form of self-care. Self-care is anything but selfish.”
Find space and time to recharge
At Burke, the Caregiver Center is designed to feel distinctly not-hospital, a place that just feels calming. Wherever you spend your time as a caregiver, try to find (or create) even a small space—maybe outdoors in the yard or in a particular spot in the house—that can serve as a recharging station, complete with a favorite chair, candles, relaxing music, pictures or artwork—whatever helps restore a sense of well-being.
Above all, be kind to yourself
Be kind to yourself. Acknowledge that what you are doing can be difficult and that you matter.
“Think of how compassionate you would be to a friend who was doing all they could to help a loved one through rehabilitation,” says Marlena. “What would you say to them? Then, tell yourself that.”
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