Help for Dementia Caregivers.
I walked into my patient’s hospital room early, on the day he was set to be discharged. At his bedside, slightly bleary-eyed, was his wife who had stayed the night yet again. Though she wasn’t sick herself, she’d equally experienced the rough hospital sheets, the 2am visit from the nurse, and the loud alarms from neighboring rooms. And now, it was her job to be his full time caregiver as they headed back home. This scene has played out in countless variations in my years of caring for hospitalized patients. I’ve always felt a mix of deep respect laced with worry for these devoted caregivers.
Dementia caregiving can be isolating and lonely. You’re allocating so much time and energy to taking care of your person – caregiver almost becomes your identity. At the same time, that person is losing their core abilities – as the disease takes their memory and ability to process, it can feel like their needs and demands are bottomless. Oftentimes, the feeling that you’re not doing enough means your own needs get sidelined. It’s no wonder so many caregivers feel burnt out. The Alzheimer’s Association found that “59% of family caregivers for people with Alzheimer’s disease and other dementias rated the emotional stress of caregiving as high or very high.”
Fortunately, there is help. Millions of families are experiencing their own version of this challenge, and there’s tons of wisdom among dementia experts and families who have been there. Here are some of the most practical tips from Roon’s experts:
How to get others to help:
Liletta Harlem emphasizes what may seem obvious: the best way to get help is to ask for it, even if that can feel hard. Marie Clouqueur recommends reaching out to connect with people, even if it’s just a 15 minute phone call, that way you have stronger relationships to turn to when you need help.
Keep a running list on your phone of all the little things that other people can do – i.e., pick up a prescription at the pharmacy, mow the lawn, come over for coffee to keep you company. That way when people do ask how you can help, you can be very specific.
What to do when you’re frustrated:
You will get frustrated. Oftentimes, your person won’t be doing what you want them to or won’t be acting in a way you recognize. So what can you do? Dr. Natali Edmonds recommends having a coping statement for yourself (“This too will pass.” or “I’m doing the best I can.”), taking some deep breaths, and going to another room or the backyard even for 30 seconds to reset. Tactically, Sharon Hall recommends that if you have to go somewhere like a doctor’s office, start getting ready very early so you’re not pressed for time.
How to manage feeling like you’ve lost your person:
Dr. Kalisha Bonds Johnson acknowledges that in some ways, you have lost parts of that person and that relationship. There may be some glimmers of the old personality. Try to make the most of the moments you have especially in earlier stages of dementia. Record stories, take photos, go to a place you always wanted to go together. Capture the memories that you can while you can.
Robert Reid has cared for his wife and best friend of 34 years who was diagnosed with early-onset Alzheimers. He shares that having been married for so long, they adapt to the situation. It’s hard not to be able to do the things they used to do together, but they still find ways to have fun and laugh and know that they love each other.
How to use respite care:
Katie Brandt shares that respite care can be a paid caregiver or a friend or family member. The key is to use it effectively — this is not time for errands and tasks for your person with dementia. Respite is time for you to take care of yourself. To recharge your batteries with a walk, a lunch with friends, or a visit to your doctor. Alyssa Aguirre adds that research shows that respite care is the most useful when it’s regular and predictable so you can plan on what to do with your break time.
One important message from all of them is that you are not alone. Join a support group to have a community to vent to about challenging moments. Reach out to people in your life to build your own relationships and personal support system. You’re doing a great job, and you deserve support in the difficult and important work that you do every day.
