En español | In the year after 70-year-old Samantha's world was upended by her husband Al's diagnosis with moderate dementia, she worked hard to regain some sense of control. She learned about the course of the disease and created a daily regimen of care chores. She found the right words to calm him when he was agitated and the right manner to cajole him when he resisted taking a shower. She divvied up the caregiving tasks among a team of their adult children and home health aides to make caring for her husband more manageable. As devastated as she was by Al's increasing confusion, she also felt a growing sense of mastery that she could take care of him with competence and confidence.
But then came the pandemic and all feelings of control vanished. To prevent the spread of the coronavirus, Al's adult day center suspended services and their children and aides stopped coming to the house. Samantha and Al were now alone. As she watched the frightening news reports on TV, he seemed to sense her rising anxiety level and became more agitated. Her previous words no longer calmed him. She couldn't calm herself down, either.
With all the uncertainty surrounding our present health crisis, many Americans are struggling to regain a feeling of control. This affects family caregivers more than anyone because they are already scrambling to deal with the unpredictable vagaries of their loved ones’ illnesses. As Bob Mastrogiovanni, president of the Well Spouse Association, put it in that support organization's recent newsletter, “When you are in control, you fret over all that you have as your responsibilities …. When you are not in control, you fret over all that you are dealing with that is out of control.” To do right by their care recipients as well as to manage their own anxieties, caregivers must do all they can to regain some semblance of control over their caregiving situations.
How can family caregivers restore their feelings of competence and confidence in these uncertain times? Here are some ideas.
Become the master of acceptance
There is a reason why plaques with the Serenity Prayer — which implores us to “Accept the things we cannot change” — hang in many hospital rooms and health care facilities. They are reminders to individuals suffering illness and their family members that medical science may be limited in producing a cure. Health care providers, too, need to be reminded that their healing powers are formidable but have bounds.
As the front-line care providers for millions of Americans with serious and chronic illnesses, family caregivers must also remember the admonitions of the Serenity Prayer. Tender loving care, painstakingly organized and devotedly practiced, matters greatly to their loved ones’ comfort and quality of lives but may not change their medical outcomes. This is especially so when conditions get worse and support services are harder to come by. Like the finest physicians and nurses who provide the best care they can even without proper equipment, family caregivers must strive courageously but accept that the best they can do during this pandemic may be to muddle through.
Relax standards and improvise
Frequent change is unsettling to anyone. But the most capable caregivers are generally those who are creative problem-solvers in the face of change — that is, they don't depend so much on the care regimens they've carefully devised as on their capabilities to adapt and readapt to meet new challenges. As this national health crisis unfolds, caregivers should lower the standards for timeliness (say, having your loved one dressed by 10 a.m. instead of 8 a.m.) and meticulousness of care (teeth brushed after every meal) that they may have carefully crafted over time and, like a jazz musician who uses a familiar melody as a jumping-off point for artistic exploration, improvise something fresh and new.
Counter worrying with meditating
Meditation comes in many types but has three common elements — deep breathing, focused concentration, and an increased, not decreased, awareness of what is going on inside and outside of us at any given moment. It has been shown to ground the family caregivers who regularly practice it in the present — rather than worrying about the future or regretting the past — and create a greater sense of calm.
In a paradoxical way, meditation is a way to regain a feeling of control. Feeling calmer and more fully aware of the present creates greater acceptance of its current circumstances. That greater acceptance creates a different sense of control, one that's based on handling what is, and not fretting about what isn't. Caregivers who can endure this pandemic and trust that they are doing their utmost — with its limitations — will be more clear-headed, content and effective.
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.