Wellness Wednesday: 8 ways to prioritize your mental health, when caring for someone with Alzheimer’s
Like so many folks who are thrust into caregiving while working full-time jobs, Jessica Guthrie spent the first six years caring for her mother, Constance, who was diagnosed with early onset Alzheimer’s disease in 2014, by “burning the candle at both ends,” she tells SELF. She wanted to be there for her mom, of course, and she also wanted to be seen as competent in her job—so she found herself flying back and forth on a biweekly basis from her home in Texas to her mom’s place in Virginia, regularly pulling all-nighters. But Guthrie kept all the stress inside “because no one was talking about caregiving then,” she says.
It took experiencing a health scare of her own in 2020 to wake her up to the fact that she couldn’t go on like this forever. (By then, she had moved into her mom’s house so she could provide round-the-clock care… and she was still working full-time, albeit remotely.) Guthrie remembers calling her doctor in a panic, sure that the tightness that had taken hold in her chest was a heart attack. In reality, it was an anxiety attack—but “it was in that moment that I was like, ‘Jessica, if something happens to you, there is no one to step in to care for your mom,’” she says. From then on, her approach to caregiving shifted: Rather than neglecting herself in order to support her mom, she worked on putting herself first so that her mom “could get the care that I know she deserves,” she says.
Anyone who’s a caregiver will tell you that’s way easier said than done. But while you might be able to bypass self-care in the short-term, as Guthrie once did, “Alzheimer’s is a very long disease,” she emphasizes. And as it progresses, it requires more and more from you as a caregiver. “People think it’s just memory loss, but that’s the easy part,” she says. What people don’t talk about is how this disease can impact mobility, and even a person’s ability to do basic everyday tasks like eat or use the bathroom on their own, Guthrie adds, who now works as a caregiving consultant, collaborating with brands and hosting educational workshops on the topic.
The more support you have to pour into a loved one, the more necessary it becomes to fill—and refill—your own cup too. We spoke with several current and former Alzheimer’s caregivers about the self-care moves they’ve found helpful for doing just that.
1. Open up 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.”
Her advice: Allow yourself the emotional release you need. 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. Guthrie also suggests “letting go of your expectations” of who those people might be. Even close friends and family members can dip out in tough situations, she notes. But you might be surprised by the new people who crop up to fill in the gaps. “Whether it be internet friends or church friends or just other folks we’ve met, these have been the people that have shown up for me and my mom the best,” she says.
Of course, you can—and should—make the first move to reach out to people too. And that doesn’t always need to look like asking for something specific, Guthrie says. (Maybe there isn’t anything they could really do or give you that would help.) Be willing to say, “Hey, I don’t need you to do anything, but could you just call me?” Or “I don’t really know what I need, but I’d love it if you could just show up for me,” she suggests. When they know how meaningful it would be for them to simply hang out or chat with you, they’re way more likely to do it.
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 because of both 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. Find common ground with fellow caregivers.
Caregiver support groups exist for a reason: Talking to folks who are navigating the same choppy waters as you are can make the journey feel way less daunting. The Alzheimer’s Association offers a variety of both in-person and virtual support groups, and Alzheimer’s Foundation of America also coordinates its own groups via phone and video call.
For Guthrie, creating an Instagram account to document her caregiving journey has allowed her to connect with a whole community of people around the world who are handling a similar situation, which she says has been a “godsend.” And every day, she gets comments from fellow caregivers who let her know the feeling is mutual. “They’ll say, ‘Because of you sharing your story, I feel so much less alone,’ or ‘I knew how to advocate for myself or my loved one,’ or ‘You make me feel seen and heard,’” she says.
4. Identify at least one productive coping mechanism for your stress.
Joyful or life-affirming activities (say, hobbies like painting or baking) or things that lift your spirits (such as exercise or meditation) might seem frivolous in the face of pressing caregiver responsibilities. But Karen says it’s essential to hang onto at least one of these practices from your pre-caregiver days. It won’t just serve as an outlet for the stress you’re experiencing; it’ll help you remember that you’re still worthy of enjoying your own life, she says.
Emmy G., whose mom, Linda, was diagnosed with Alzheimer’s disease in 2013, tells SELF that she still needs to do her own thing sometimes. Recently, that included going through a 200-hour yoga teacher training course to become a certified yoga instructor. For Guthrie, it looks like teaching a weekly dance fitness class at her local YMCA. Whatever the activity, choose something that never fails to leave you in a better mood than when you started it.
5. Put self-care time in your calendar and stick to it like you would a meeting.
You might be thinking, I don’t have time to have a hobby or work out with everything going on! And that’s completely valid. But you also won’t ever have time unless you make it, Guthrie says. She suggests literally adding blocks for self-care into your schedule. Her weekly dance fitness class certainly serves that purpose: Whenever the time for it rolls around, she knows that “[those] 70 minutes [are] just for Jessica,” she says. But these chunks of time definitely don’t have to be that long; if you can find even just 10 minutes to set aside for yourself on a daily basis, it can make a big difference, she says.
Just take it from Amy, who says that if she could go back and do it over, she would’ve “tried harder to make more time for myself.” After Art’s diagnosis, she felt guilty even leaving the house at all—but once he passed, she realized how much that mentality had hurt her. “I didn’t even look like myself, the stress had taken such a physical toll on me,” she says. It took her three years, she says, to recover her sense of self.
6. Savor the micro moments of alone time.
Perhaps a pocket of free time presents itself unexpectedly when your loved one dozes off or a doctor’s appointment runs a little long. Use it to actively savor a cup of tea or just feel a cool breeze on your face, Guthrie suggests. She recalls using brief moments of downtime throughout her years of caregiving to walk a few laps around the house. Just getting a small dose of movement would help to ground her.
In that vein, Guthrie also recommends waking up a few minutes earlier than usual to step outside and feel the sun or just slowing down and being present each time you find yourself having a meal alone—stop scrolling or doing anything else other than focusing on the food, she suggests. “All of these are examples of how you can find mindfulness in the micro moments versus letting your brain constantly go a million miles a minute,” she says.
7. Explore respite care if it’s within your means.
Respite care, or hiring a professional caregiver to step in temporarily, can offer a short-term break ranging from a few hours to even weeks. That might be cost-prohibitive for some; after all, if you need someone to provide more intensive 24/7 care at your home, like Guthrie would need for Constance, the bill could be as much as a couple hundred dollars a day.
Still, that might be worth it on occasion to take some time completely for yourself. Stephanie C., who cared for her mom with Alzheimer’s for several years, wishes she’d made more use of it. “I canceled it after two visits because my mother was so disagreeable about it,” she 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,” she says. Instead, Stephanie says she tried to do everything on her own, which ended up being hard on her mental health.
8. Make and keep your own doctor’s appointments.
Several caregivers told us that their own checkups, annual visits, and regular exams fell by the wayside when they were caring for a loved one. It’s understandable: “You’re exhausted from navigating the health care system for someone else, so you end up prioritizing only the things that feel most immediately necessary,” Guthrie says.
But slacking on your own preventative care and medical appointments just puts you at greater risk of experiencing a health issue—like Guthrie’s anxiety attack a few years ago. And that’s the last thing you need when a loved one is relying on you. As Stephanie urges caregivers to keep in mind: “You cannot care for others if you yourself are sick.”
Original article appeared on Self US