Ask anyone caring for a loved one with a serious illness what they do for self-care, and you’ll probably hear laughter in response. Self-care can be tough in the best of circumstances, but it’s especially difficult for people who spend the majority of their time caring for someone else. Alzheimer’s caregivers are no exception. Still, some people find a way. We spoke with several current and former Alzheimer’s caregivers about the seemingly small self-care moves they’ve found helpful.
1. Talk about what you’re going through.
Amy L.’s father, Art, was diagnosed with Alzheimer’s disease in 2012. She says she began “shutting people out” because her emotions were so raw after her father’s diagnosis, but she later realized that wasn’t the way to go. “It’s so isolating,” Amy tells SELF. “Our society conditions us to take it to the chin and to think that you’re fine. You’re not fine, and it’s a lot to handle on your own.”
Allow yourself that emotional release. If someone reaches out to check in on you, Amy recommends taking them at their word—they want to know how you are—and opening up to them.
She also recommends connecting with people in similar situations. If you have trouble leaving the house (we’ll get to that in a bit) and can’t make in-person support groups, she suggests joining them online or over the phone. The Alzheimer’s Association has message boards through AlzConnected; the Alzheimer’s Foundation of America offers telephone-based support groups.
Amy D., whose mother died from Alzheimer’s disease seven years after being diagnosed, tells SELF that joining a support group was the most important thing she did. She adds, “Having people to talk to who understand all of the emotions you're feeling and who get the daily grind is tremendously helpful.”
2. Try to talk to someone from the outside world at least once a day.
It can be hard to leave the house when you’re caring for a loved one with Alzheimer’s disease, both because of logistics and guilt. But you need some connection with the outside world so you don’t lose yourself in the (very important) job of caregiving.
“Outside friendships and blocks of time with other people focused on something constructive is very, very important,” Karen W. tells SELF. She says her telecommuting job was a blessing when she was caring for her mom, Ethel, who was diagnosed with Alzheimer’s disease in 1999. “I literally wore a telephone headset on mute most of the time while I tried to pay attention to telephone meetings and follow her around the house and yard,” Karen says. “Having that outside connection helped a lot.”
3. Identify at least one productive coping mechanism for your stress.
Karen recommends having some kind of productive way of coping with the stress of caregiving, like meditation, hobbies, or exercise. “It isn’t easy for caregivers to remember that they are worthy of enjoying life and that in order for them to have the capacity to love others, they must love themselves—not just in thought, but in action,” she says.
Emmy G., whose mom, Linda, was diagnosed with Alzheimer’s disease five years ago, tells SELF that she still needs to do her own thing sometimes. That includes going through a 200-hour yoga teacher training course to become a certified yoga instructor. She’s also found an outlet by writing about her wellness habits in her blog, The Cure for Me.
4. Put self-care time in your calendar and stick to it like you would a meeting with someone else.
Amy says she felt guilty even leaving the house at all after Art’s diagnosis, and the lack of self-care was incredibly rough on her. “When he passed, I was the picture of why you need to take care of yourself as a caregiver,” she says. “I didn’t even look like myself, the stress had taken such a physical toll on me.” After Art’s death, Amy says it took three years to recover her sense of self. “If I could go back and do it over, I would really try harder to make more time for myself,” she says.
5. Look into respite care, then actually use it.
“I canceled it after two visits because my mother was so disagreeable about it,” Stephanie tells SELF, explaining that having other people in the house made her mom anxious. “However, knowing someone else was in the home and having the option to have time away would have decreased my stress tremendously.” Instead, Stephanie says she tried to do everything on her own, which ended up being hard on her mental health.
6. Make and keep your own doctor’s appointments.
Several caregivers told us that their own checkups, annual visits, and regular exams rarely or never happened when they were caring for a loved one. “Keeping up with medical appointments is very important,” Stephanie says. She also urges caregivers to keep this in mind: “You cannot care for others if you yourself are sick.”