Being a caregiver for a loved one can be very challenging, physically and emotionally. But the experience can also be rewarding: It can nourish and inspire you, and deepen your connection. I felt the highs and the lows during my years as a caregiver for my wife, Alisha.
We met on a rainy October day 8 years ago, at a coffee shop in downtown Manhattan. Alisha was new to the U.S. from India and working long hours in a stressful job. No friends or family were nearby to support her. When her car got rear-ended on a highway off-ramp, she took a few days off and then rushed back to work before she was fully recovered. Persistent pain and fatigue later forced her to go on disability.
I didn’t know what caregiving was then; I just knew she needed help. Before long I had moved in. On bad days, she was bedridden with constant pain. I gave her massages, heat packs and topical pain patches. I took care of our house and drove her everywhere, including to endless appointments with specialists who couldn’t put the pieces together. Finally, we were told it was fibromyalgia, a complex, long-term disorder that causes widespread pain.
I spent a lot of time taking care of Alisha in those days, and I wouldn’t have had it any other way. But truthfully, it wasn’t easy. I had to balance her care with traveling to meet clients and deliver work. I was also her only emotional support, and sometimes keeping her spirits up was a challenge.
I’m sure many of you can relate to our story. Being a caregiver for a loved one is a central and demanding fact of life. It’s estimated that 65 million Americans are informal or family caregivers for someone who is ill, disabled or aged. And they spend an average of 20 hours a week tending to them.
Caregivers have many responsibilities, among them taking care of daily needs, giving emotional support and dealing with the health care system. Finding the time to do whatever has to be done on top of your job or other obligations is tough.
All those demands are intensified by the judgments and pressures that caregivers often heap on themselves: I have to do this myself; otherwise I’m not doing all I can. I shouldn’t enjoy myself while my loved one is suffering. My needs come second because I’m not the one who’s sick. As a result, caregivers often fail to take care of their own needs.
It’s important to remember that in a caregiving situation, there are two people under stress, not one. In order for the relationship to be effective and sustainable, both individuals must take steps to manage that stress. To be the best caretaker for your loved one, you’ve got to give yourself permission to take care of yourself.
Here are some practices that can help:
- Have realistic expectations of yourself. Decide how much time you can commit and still maintain your balance. Determine other resources in your family or community that can contribute.
- Accept and respect your own emotions. Caregiving can trigger a range of feelings, some expected and some less so. This is completely natural; there’s no “right” way to feel. Just allow yourself to feel the way that you do, without judging yourself, shutting out negative feelings or acting on them immediately.
- Create moments of connection. Find activities that you can enjoy with your care recipient. A sense of humor and an appreciation for small joys can go a long way to raise spirits and strengthen relationships.
- Make time to do what nourishes you. What do you do that refreshes your mind and spirit? By making time for these things, we bring a more positive mindset to our caregiving role.
- Don’t assume you have to do it alone. Find someone who can give you encouragement and a caring second opinion, whether it’s a friend or caregiver support group. We can be hard on ourselves, and the voice of a kind and objective person is invaluable. If at any time you feel overwhelmed, reach out to a professional. See the end of this article for caregiver resources.
One thing that was so helpful to Alisha and me during this time was mindfulness, the practice of staying present to what’s happening right here and now in an open and accepting way. Mindfulness practice allowed us to separate our fears, judgments and assumptions from what was actually going on. It also helped us take advantage of the many opportunities for caring, connection and humor that present themselves every day.
We meditated together every morning (and still do). This allowed us to simply be together for a time just as we were, without any expectations. Throughout the day, we checked in with each other ― not just about what needed to be done, but also to listen and acknowledge what’s going on. I came to realize that giving your full undivided attention to another person, even for a moment, is a great gift and profoundly healing.
Andy Lee and other business leaders share the benefits of mindfulness for professionals.
Alisha and I got married a year after our first date. We’ve had many ups and downs, but she’s doing much better now. She still has pain at night, but her energy is back.
To be your best as a caregiver, remember two things: Prioritizing your own wellbeing will also benefit your loved one. And when things get challenging, try to come back to what’s happening in the here and now. That is all we need to work with: one day, one moment at a time.
Ableto. This Aetna partner offers counseling and coaching programs for caregivers via videochat.
Caregiver Action Network. Targeted information and resources for specific caregiving situations: chronic conditions, disability, Alzheimer’s, children with special needs, wounded soldiers and more.
Family Caregiver Alliance. Connects family caregivers with educational programming, support groups and local resources.
TelaDoc for Caregivers. This Aetna partner allows members to speak to a licensed doctor by web, phone or mobile app about family members they care for.
About the author
Andy Lee is Aetna’s former chief mindfulness officer. He has several certifications in mindfulness training and gives regular workshops in the Fairfield County, Connecticut, area.