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.
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