En español | Upon waking each morning, Elizabeth's first thoughts were about having to dress and shave her father, count his pills and comb his hair, and cajole him into the car before dropping him off at his adult day care program. These thoughts were almost immediately followed by her first emotion of the day — a pit-in-the-stomach dread. She wanted to take care of him and had made that commitment to him, her deceased mother and herself. But after months of the same morning routine of time-consuming and mind-numbing caregiving tasks, she felt reluctant to force herself out of bed before daybreak to do it all again.
Dread is a common state of mind for people engaged in ongoing difficult endeavors and isn't necessarily a symptom of depression or anxiety. Elizabeth didn't feel overwhelming sadness or fear so much as a heavy weariness and irritation from the constant caregiving pressures. She felt hemmed in by her commitment at times and just wanted to temporarily escape. “If only I could have a day by myself at the beach,” she mused. But she never left her father in anyone else's care for more than a few hours.
Dread is not synonymous with burnout, although it often accompanies it. It can be a normal and expectable reaction that some caregivers experience, especially as caregiving drags on. Elizabeth felt no urge to quit caregiving — she would rally herself as usual that day — but she longed to just pull the covers up over her head for a few more hours of rest.
Waking with a feeling of dread can sometimes make family caregivers feel guilty as if it means they're bad family members and begrudging caregivers. When she didn't immediately rise with a ready smile for her dad, eager to help him, Elizabeth would be angry at herself. But the fact that she could push past the exhaustion to reliably and consistently do what he needed done was daily proof of her discipline, devotion and love.
Dread is prevalent in caregiving but also unpleasant and uncomfortable. How do we help family caregivers either accept these feelings or overcome them the best they can? Here are some ideas.
Anticipate joy in your day
Even an overly busy caregiver's life can't be all toil. There must be moments of beauty, intimacy and humor to sustain you. That could be a fresh bouquet of wildflowers on the kitchen table or a new joke sent to your smartphone every morning. It could be a robust cup of coffee or a perfectly browned slice of toast. Better yet, it could be remembering, with the loved one you're caring for, the chorus of an old song or the swinging band that played it. Those small instances of joy provide replenishment and bolster a caregiver's reserve to better withstand the hard work and drudgery.
Accept that caregiving can be hard
Caregiving can be a dirty, dull job. No family caregiver should feel guilty for being unhappy with its many onerous tasks. Instead, it's helpful to separate how you feel about caregiving and your sentiments toward the person on whose behalf you are making sacrifices. You can love the care recipient and still hate caregiving. You can light up at the sight of your loved one but still groan with morning dread about having to groom him. You can want to help and still fantasize about running away.
Get respite care
When your will flags and your energy is depleted, taking a break from routine is one of the surest ways to find new energy and vigor. Likewise, relaxation and rest counter caregiver dread and respite — getting someone else to fill in as caregiver while you take a break — is one of the foundational elements of most caregiver support programs. Almost every state and county will pay for professional services to allow eligible caregivers to periodically take time off; contact your Area Agency on Aging to get details. Many insurance companies now offer respite as well; reach out to your loved one's insurance care manager to learn more.
Beware of burnout
While feelings of occasional dread are normal, they can also be the first signs of abnormal reactions to caregiving that can undermine a caregiver's ability to continue. We say caregivers have burned out when they feel all-consuming dread during every waking moment whether they are engaged in caregiving tasks or not. No beauty or humor can replenish them and respite doesn't remedy how they feel. If you find that you can't shake dread, then it may be time to consider significantly changing the caregiving plan.
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.