When you’re giving your all to care for a loved one with dementia, how do you find the time and energy for self-care too?
Even small changes can make a difference.
HopeHealth volunteer Ki Miller cared for her husband, Tuck, through his journey with Lewy body dementia, and now co-facilitates virtual support groups for other dementia caregivers.
She shares strategies you can start today.
Mental and emotional self-care for dementia caregivers
1. Forgive yourself when you don’t get the result you wanted. “You can wake up in the morning and say, ‘I’m going to have the patience of a saint today.’ Then you get asked the same question 15 times in a row, and your patience is gone,” says Ki. “Have grace for yourself.”
2. Rethink what you can accomplish in a day. “You can’t say, ‘This is how the day is going to go,’ because with dementia, you don’t know,” says Ki. “Don’t set high expectations for what you’re going to get done in the day. As much as you can, just go with the flow.”
3. Keep an open mind. As your loved one’s dementia progresses, they or you may eventually need some extra support. “Try not to get in the mindset of ‘We’ll never need a facility,’ or ‘My loved one will never let a strange person in the house,” suggests Ki. “I’ve seen the angst some people have when they’re coming to grips with the fact that it’s time to at least consider it.”
4. Honor moments of connection. “There are times when those with dementia are their old selves for a minute. Celebrate those times,” says Ki. One caregiver in support group writes down everything his wife says. “That’s how he honors those moments of, ‘She’s still with us,’” says Ki.
> Related: From a dementia caregiver: 3 lessons that changed everything
“Have grace for yourself. Forgive yourself when you don’t get the result you wanted or have the patience you intended in a given moment.”
Practical self-care for dementia caregivers
5. Take breaks. “Allow others to take over for an hour or two, so you can read a book or do something you enjoy,” says Ki. When you can’t arrange a longer break, at least take a short breather: Step out of the room, go somewhere quiet, and literally take a deep breath.
6. Create routines with your loved one. Ki and her husband used to take walks each morning. In the afternoon, they’d listen to music. If Tuck was feeling up to it, they’d dance. “Those routines became huge for me as a caregiver,” says Ki. “They brought something to both of us.”
7. Reach out for information and support. “Knowledge is power. You can’t know everything, but what you do know will help you be a little bit more prepared,” says Ki. For free resources, sign up for HopeHealth’s virtual caregiver education.
> Related: How to plan meaningful activities for someone living with dementia
Support network tips
8. Schedule social time. “Your world as a caregiver is going to shrink. Stay connected to friends and family as best you can,” says Ki. It helps to pick a regular day and time. Ki and her daughter would aim for dinner out once a week, while a respite care provider stayed with Tuck.
9. When someone offers help, say yes. “Give them a job,” says Ki. “It could be, ‘When you’re at the store, could you get us a gallon of milk?’ Or, ‘Could you come over while I go to the dentist?’ They’ll feel like they’re touching the situation. And you won’t feel so alone.”
10. Find a caregiver support group. In addition to practical tips and resources, “it’s important to be heard and understood by people who get how hard it is,” says Ki. If you reside in Massachusetts or Rhode Island, or your loved one is on HopeHealth’s services, HopeHealth’s virtual caregiver support groups are free and open to you. Learn more.
Self-care can seem like a tall ask on top of the many demands of caregiving. But it’s crucial for your well-being — and ultimately, it’ll make you a better caregiver too.
Try picking just one or two of the tips above, and see how it goes. While you’re caring for your loved one, you’ll also be caring for yourself.