Looking out for others can be overwhelming; carve out respite time for yourself
Like many people, Louise begins her day with a shower. The peace and quiet of a morning routine provides Louise, who asked that her last name not be used, a centering start to a new day. But even then, her focus is not on herself.
Louise’s husband, Morley, has Lewy body dementia.
So she also begins every day by strategically thinking about his care. While she showers, he usually stays in bed, but she keeps the security alarm on just in case he decides to wander and leave their Deerfield condo.
After her shower, she sets out her husband’s toiletries for his morning routine.
“Some days he can remember how to shave, brush his teeth. Other days, he looks at things, and says, ‘What am I supposed to do with these?’”
Louise and Morley aren’t alone in facing this complex stage of life. An estimated 48 million Americans provide care to a family member or friend age 18 or older, according to AARP. And while it’s easy to get lost in the daily responsibilities of looking out for someone else, caregiving requires caring for yourself, too.
It’s challenging to carve out self-care time, but it’s necessary in order to provide the best possible care for someone with dementia or serious illness.
“When you’re a caregiver for someone living with dementia, most often it’s the first time you’ve ever done this, so it’s really an educational process,” says Peggy Rubenstein, manager of care consultation for the Alzheimer’s Association Illinois Chapter.
When Rubenstein meets with families to help them identify concerns about their loved ones’ needs, she also checks in with caregivers to ask if they have their own health concerns and how those concerns might affect their ability to provide care.
Changing roles from spouse to caregiver has been hard, Louise says. “It’s such a monumental shift,” she says. “I go to bed at night, and I think, ‘Is this my new normal? How am I going to manage it?’”
Asking for help
The stress can be daunting. Though difficult, finding ways to step away — mentally or physically — can refill your energy.
Regular, planned respite breaks for caregivers can help combat compassion fatigue. “I’ll tell people, when you get the respite day, go somewhere, do something with it. Make a plan for that day. Don’t stay home,” Rubenstein says. “You need to get out. Structure it, plan it, just like you have a doctor’s appointment. Schedule it on a regular basis, not once in a while.”
Louise’s family offers her a chance to find that space. “Family is very important and plays a big role in making things more manageable,” Louise says. She’s grateful that her son, daughter, and brother-in-law live in the area and offer occasional help with her husband’s care.
“It would be so nice to get my hair cut by myself,” she says. “Knowing I can take my knitting, I can take a book, and I’m not having to wonder where somebody is and what’s going on. You just need to have some down time where you’re not ‘on.’”
However, not all families are close enough to pitch in regularly, let alone take on the primary caregiver role, says Richard Ueberfluss, owner of Assisting Hands Home Care of Naperville. That means caregivers need to build in help from friends or professionals — just to give themselves a break.
Home care aides can provide assistance with activities of daily living and physical transfers, as well as more intensive needs. Assisting Hands has seen an increase in requests during the Covid-19 pandemic, Ueberfluss says, as hospitals have been sending more patients home, instead of to skilled rehabilitation facilities to reduce the risk of Covid-19.
For family caregivers looking for a supportive ear and knowledgeable recommendations, the Caregiver Action Network (CAN) recently launched a caregiver help desk, says Melissa Rowley, Chicagoland board chair for the Caregiver Action Network. The new feature on CAN’s website connects caregivers with experts who can direct them to local resources without accepting referral fees.
Self-care to care better
Being a good caregiver should not come at the expense of self. “Whatever you like doing now, don’t give it up,” Rubenstein advises. Whether it’s volunteer work, golf, or another activity, she says, caring for yourself can improve your state of mind.
“Sometimes those things are easy if you have a hobby, but not everybody has a hobby,” Rubenstein says. She encourages people to figure out their interests and to write them down.
“I think seeing it on paper is a good thing,” she says. “Look at the different areas of your life — physically, mentally, socially, and spiritually — and ask yourself where you’re at right now with that. Where am I in these areas of my life? What would caring for myself look like?”
For Louise, the greatest feeling of rejuvenation comes from spending time with her family. “My grandkids are the best medicine ever, to see them. [In summer], we were out on the patio with the wading pool and the toys, and they spent four hours playing and running around with their dad chasing them with buckets of water. I could sit and do that all day. That’s when I feel the most normal.”
Not Sure What Counts as Self-Care? Try These Ideas
- Start by tapping your own resilience. What has helped you stay centered and get through hard times in the past? Make a list of things that have made you feel better. Also, consider the following:
- Support groups. It’s helpful to create camaraderie within a community of people who are in the same situation as you.
- Respite days. To provide the best care for your loved one, it’s important to take time off. Sometimes the only distance between you and your situation is the physical kind.
- Time with friends. Checking in with your closest friends, whether in person or by phone, can provide much-needed perspective and levity.
- Exercise and healthy diet. Moving your body and making informed choices about what you consume can help you feel your best.
- Spiritual practice, meditation, and mindfulness. Staying connected to your faith or spiritual practice provides perspective.
- Hobbies. No need to let go of what you love —- keep your hands and mind busy with activities you enjoy.
- Lifelines. Contacting a support hotline, such as the Alzheimer’s Association (800-272-3900, alz.org) or the Caregiver Action Network’s Help Desk (855-227-3640, caregiveraction.org), can provide reassurance and advice at tough moments.