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En español | The call didn't surprise her but was a shock anyway. The adult day care where Lisa's husband, Stan, went four days a week for support services for his moderate frontotemporal lobe dementia would close for the next month because of the spread of coronavirus. He would now be constantly at home, sitting in the living room with TV blaring and calling out for Lisa to come sit next to him or bring him something to drink or get him a sweater. She would no longer have any breaks during the day to talk with friends or take a walk. She could rest only if he rested, and his napping was erratic. She had felt stifled before, robbed of the relaxed lifestyle she'd hoped for during her retirement, but at least the adult day care had provided her with respite. Now she felt completely trapped.
Couldn't Lisa hire home health companions to sit with Stan so she could have some time for herself? If they brought germs into the house that made him ill, her guilt would be too much to bear. Perhaps she should ask their adult children to relieve her. But the thought of interfering with their already-strained lives until the adult day care reopened made her feel bad, too. Besides, Stan wanted only her — constantly.
As national, state and local officials have increasingly urged Americans to shelter in place, more family caregivers like Lisa have lost essential caregiving support services. As a result, what was difficult but manageable caregiving has become all-consuming. Unfortunately, no immediate fixes are in sight, only the ardent hope that the spread of the virus will be contained or there will be a vaccine or scientific breakthrough so life can go back to normal. Until then, these caregivers are feeling more hemmed in and stressed out than ever before.
What steps can family caregivers take to better cope when they are feeling stressed and isolated? Here are some ideas.
Don't play the shame game
Even in the most easygoing relationships, there is a balance between the small frictions of everyday life, such as forgotten chores and minor disagreements, and more upbeat instances, including unexpected hugs and compliments for a good meal. But when spouses have enforced round-the-clock together time — especially when one requires extra care and patience — that balance often tips and they are bothered more by the usual hassles and silly misunderstandings. Being joined at the hip would cause almost anyone discomfort. Beating themselves up for feeling irritable — as caregivers sometimes do — is not only unfair, it is unhelpful.
Create areas of separation
If the size of your world has shrunk to the confines of your home, then it is crucial to figure out ways to carve out time and space that's still yours. Taking 20 minutes to go to a separate room from the person you're caring for would help you clear your mind and recover a little. Of course, that may not be possible if your loved one needs ongoing supervision or is bellowing for you to change the channel for him. But even if you must be in the same room all the time, there may be ways to focus on your own needs. Reading a book or listening to calming or meditative music with headphones are small ways to be present and available but also separate and self-contained. You can also put the headphones on the care recipient so that he hears the music or the TV and you don't have to.
Share moments of mutual enjoyment and meaning
Even in coronavirus confinement, upbeat instances still go some ways toward offsetting frictions small and large. Put on the old movies or music that you always enjoyed together. Bring out the photo albums to remind you of wonderful vacations and family gatherings of the past. Make and savor the recipe that was always a family favorite. Sit together on the living room couch in silence holding hands.
Maintain your lifelines
Social distancing shouldn't mean shutting out the world. We all still need human connection, particularly in a crisis and especially with those who understand and care about us. Mounting research has shown just how emotionally and physically harmful social isolation can be. Fortunately, we live in a miraculous age when we have myriad technological means — including telephone, email, texting, video chat and social media — to keep our friends and family members present in our lives. That may be the best available solace for all of us until this crisis passes.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.