By Nell Lake
Many of us find ourselves caring for loved ones braving old age, decline, and dying. Caregiving is demanding—at times overwhelming. Yet it can also cultivate intimacy, wisdom, and insight. For my book, The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love, I chronicled the experiences of the members of a caregivers support group for more than a year. Here are some things I learned about mindful caregiving:
1. Be where you are
It’s a central principle of mindfulness: trying to do one thing at a time, and knowing that you’re doing it, and doing it with kindness toward yourself.
Caregiving often requires responding to seemingly countless needs, appointments, tasks. Studies show caregivers face higher rates of stress and illness than non-caregivers. If you’re feeling overwhelmed, lonely, frequently angry and irritable or guilty, and/or crying a lot, you’re likely at risk of burnout. Some suggestions for easing your stress:
• speak with your doctor. He or she should be able to help you find resources that help.
• call your local senior center to ask about sources of support such as senior day care and/or respite programs and support groups.
• make a list of activities that nourish you, and try to build one or more of these into your days: journaling, say, or taking walks outside, calling a supportive friend, taking some time to do yoga, meditating—whatever helps you come back to yourself and the moment you’re in.
It’s so easy to adopt the habit of mind that another person’s needs matter more than yours, but one of the most important things you can do to prevent burnout over the long haul is to value your own well-being.
2. Be gently aware of loss and change
Much caregiving is for people with dementia or other long-term chronic illness. Your family member is changing, going through decline—very slowly. Your mother might be losing her ability to communicate; your father’s personality might be changing. It can feel as if your family member is “gone but not gone.” Caregivers often experience long-term uncertainty—and this can be very stressful.
It helps to be aware of slow loss and its particular challenges—and to give yourself permission to feel grief and the other feelings that arise along the way. Letting the feelings simply exist, seeing that they change, can help you gain more clarity, control, and a sense of space.
Mindful awareness doesn’t mean ruminating on loss in a negative way. Thoughts such as “this shouldn’t be this way; this isn’t my mother!” will mostly feed stress. Yet taking time to see the stressful thoughts and storylines that form in your mind can help you not get completely caught up or identify with them. You may even find more acceptance of what’s happening—to see it as natural, a part of life, rather than an aberration.
3. Meet your family member where he or she is
Try to accept the effects of your family member’s aging and illness, the way their mind and body work at this point in their lives. With people with dementia in particular, it’s really helpful to try to create good feelings in as many moments as possible. Studies show that, even for someone who doesn’t remember something you said five minutes before, good feelings last for quite a while. A person with dementia might have a good laugh or hear a song they love or watch a wonderful scene from a movie—and hours later they’ll still be feeling the effects of these. Arguing with their perceptions—saying, “it’s Tuesday, not Thursday” or “you already said that six times today”—is not just futile; it creates stress for both of you.
“Meeting them where they are” is a good principle no matter your family member’s particular illness or impairment. Maybe he or she can’t walk up the stairs anymore and feels cranky about losing mobility. If you can let go of the story “this shouldn’t be this way,” you’ll likely save yourself a lot of suffering. Instead of all this happening to you, it just is. It happens to everybody.
4. Seek out support. Ask for help. Share your story.
Caregiving is isolating; it usually happens in private homes, behind closed doors. Yet connection is vital to us as human beings. The support-group meetings I followed gave the caregivers a chance to connect with others who understood. The members felt trust with one another and usually said whatever they needed to—even shared thoughts and feelings that they didn’t share with others outside the group. Mutual support helped them to be resilient in the midst of their challenges.
Meanwhile they gave one another very little advice. Probably no one likes unsolicited advice, but to caregivers, being told how to handle unique, personal, and challenging situations can be particularly frustrating. The group understood this, and mostly just told stories and listened. They did, however, learn practical things through their listening: They heard about ways others had solved problems, and about available resources. A person caring for someone in the early stages of a disease often learned by listening to another person caring for someone in later stages.
I saw enormous value in the group that I followed, and think a good group can be a profound source of support. But support groups are not for everyone, of course, nor do I think all groups are equal. You may join one, decide it’s not helpful at all, and go looking for a different one. You may find other ways to receive connection and support. This is the central point: to recognize when you need support and seek it out.
5. Be kind but don’t try to be a saint
One of the caregivers I followed, Penny, was upset one evening. She’d brought home two cannoli to share with her mother—a rare treat in their household. Before Penny had had a chance to offer them, her mother had found them and scarfed them both down. Penny discovered this and felt like yelling. Instead she went into another room and wrote “wrathful emails” to her sister. She vented, in other words, which helped. A few days later, she laughed about the incident in her support group.
Being kind doesn’t always mean feeling kind. It does mean doing the right thing in a particular moment. Of course, trying to feel compassion, having that as an intention, is good—but of course one isn’t going to feel compassion in every moment.
Again, it’s important to direct kindness inward. There’s a teaching: when you’re being generous, know that you’re being generous. When you have good qualities of mind, being aware of them can help to further cultivate them. In your caregiving, acknowledge that you’re being caring. You’re helping someone. Even when caregiving feels hard, it can be sustaining to recognize your generosity. You’re helping someone to have a good end to her or his life.
Nell Lake is the author of The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love, published by Scribner and released in paperback this Spring. Names in both the book and in this blog are pseudonyms.
This article also appeared in the February 2015 issue of Mindful magazine.