Today is Thanksgiving. For many of us, that means not just a traditional meal with family and friends, but also a reflection on what we’re most grateful for this year. If you look around your table on today, the odds are high that you’ll be sharing your feast with at least one family caregiver. And since November is also National Caregivers Month, Thanksgiving is the perfect time to show support and thanks for the caregivers among us.
It’s an important gesture, largely because caregivers as a whole are underappreciated and undervalued. I recently read a statistic that there are 90 million family caregivers in the US. In a population of 290 million, that means more than a quarter of the population is serving as a caregiver today. And what a job it is!
Imagine reading this job posting:
Seeking an energetic, personable, patient employee to work 20-120 hours a week…for the next decade or more. Must be able to manage minor and major crises on a daily basis, as well as complete physically strenuous tasks under emotionally taxing circumstances. Some finance and managerial skills required. No pay.
Would you apply? Caregiving may be one of the toughest jobs out there. Caregiving in the U.S.2015, a joint study between the National Alliance for Caregiving and AARP, reports that caregivers who provide unpaid care for 21 hours or more each week report the highest stress of all caregiving groups, and that the typical high-hour caregiver provides care for an average of five years and expects to continue care for another five years. Caregiving often consumes the life of the caregiver—sometimes for decades— yet their role has no economic value. They can’t put it on a resume, they receive no Social Security credit, and they receive no monetary reward.
Perhaps the dilemma is so close to my heart because I speak from experience. My husband, Ed, suffered a debilitating stroke when he was in his mid-50s. On the day Ed was released, I was packing up his things to leave the hospital when Dr. Ken Bell, our friend and the medical director at the hospital, came by. His words had a huge impact on me. “It’s nearly impossible to be a loving wife and a full-time caregiver,” he told me. “Get all the help you can so you can remain a loving wife.” And I listened to him. That first year, I hired a live-in aide and a driver. I think that decision both kept me sane and protected Ed and my relationship in a very stressful time. It also helped Ed toward his recovery, largely because he despised needing help. He hated having the aide tie his shoes, so he learned to tie them himself. He hated being driven, so he learned to drive again. And through it all, I was free to dote on him in the role of his loving wife. As Ed’s recovery advanced, I eventually had to let the help go, and I became Ed’s caregiver after all. For the next eight years, I did my best to disprove Dr. Bell’s advice and serve as Ed’s caregiver while trying to remain a loving wife. It was the hardest job I’ve ever had.
Dr. Bell’s words of wisdom were foreshadowed years earlier when my mother was diagnosed with Lou Gehrig’s disease. She lived thousands of miles away in New Jersey, and I was racked with questions: What is my role? What can I do to help her—even from a distance? What should I expect as the disease progresses? I needed help, so I joined a local support group. What I saw there illustrated the challenges faced by family caregivers. Many of the (mostly) women in the group had given up their lives to care for their own mothers. As a result, they were filled with anger and resentment. They felt isolated and as though the weight of the world was on their shoulders. They hated the situation, and that was translating into hatred for the very people they were doing all they could to love: their mothers.
While in some cases a caregiver’s isolation is circumstantial, in others it is self-inflicted. My friend Robert is struggling with his wife’s Alzheimer’s disease. She’d been a highly respected physician, and he doesn’t want the community—or even his own family—to know about her dementia. Keeping her condition a secret is adding even more stress to an already stressful situation, and I can see it wearing on their relationship. They’re both so alone.
But when caregivers are supported and openly appreciated, the outcome can be quite different.
A decade ago, my good friend Denise was in between jobs. She was a busy, highly paid executive, and for the five years prior, her sisters had been serving as caregivers for their mother in her advancing stage of Pick’s disease. The timing was perfect, so Denise postponed her job search for a year and stepped in to give her sisters a much-needed respite and care for her mother. She’s told me that those 12 months were one of her greatest gifts. Yes, the job was tough, but she had the support of her sisters, and she was able to find a wonderful assisted care facility for her mother that could better serve her changing needs as the disease progressed. Even better, Denise was able to repair her relationship with her mother. Today they’re closer than they’ve ever been.
Every situation is different, but it seems that by working together as a family, even the most trying circumstances can be made easier. So take a few minutes today to express your thanks to the caregivers in your own family. Even better, take some time to review this caregivers to-do list together. Your appreciation and support may make all the difference in helping them enjoy the holiday season more fully—no matter what daily challenges they face in the month to come.
Is caregiving a challenge in your own family? Please email me your story. I’d love to hear it. And if there’s anything I can do, let me know. I’m always here to help.
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