By Mark D. Olshan
Associate Executive Vice President, B’nai B’rith International
I don’t know if I’ve ever felt invisible. In my professional life, I’ve been noticed, if not always admired; integral, if not always appreciated. I was lucky as a young man to have had a successful time in school, to meet women I liked and who actually liked me. I served in the military in an area that was relatively safe and fascinating.
I’ve been lucky to be a mentor, a friend, a son, a husband, a father and now a grandfather, and yet, I have never really been what you would think of as a caregiver. I have never known what it is like to bear that burden, to try to balance the competing needs of my job and a loved one’s needs. I am lucky that my parents haven’t needed that kind of attention.
But I do know people who have taken on these challenges. When I offer my admiration, they often confide that they feel invisible.
It’s strange how we let that happen, because we see the impact of family caregivers everywhere, every day. We all have friends who rush from work to visit an elderly parent before cooking dinner for their own kids. We know parents who have had to re-imagine their lives when confronted with the truth that a child may never be able to live independently.
I have friends who have had to rethink their own lifestyles when confronted with the illness of a spouse, a parent, or even worse, both parents. I know of women (who still do most of the family caregiving in this country) who have taken care of their own parents and their in-laws, while still working and raising their own kids.
I see them, and I admire them, and, yet, they often feel invisible.
For years, I have been part of a senior advocacy community that has focused (though never enough) on family caregiving without myself really ever having to perform those tasks. I suppose I experience some of it as I begin to watch over my father, making sure he has a way to communicate in case of emergency. But, frankly, it seems like very little compared with what I’ve seen some of my friends go through.
The Perfect Arrangement … Until
Take for instance a good friend, who I will call Barbara. She is a middle-aged woman with three young children. For the first few years of her children’s lives, her parents lived with her, helping to take care of them. It seemed like the perfect multigenerational arrangement—her parents were thrilled to have 24/7 access to the kids, and daycare was essentially free. Basically, her parents were the ones doing the family caregiving.
Then, over the course of one year, both parents became incapacitated by illness and, in the case of her mother, severe dementia. Abruptly, gone were the carefree days of on-call babysitters, replaced instead with paperwork, medical worries, hospitalizations, juggling the competing needs of both kids and her parents!
Barbara looks more or less the same, but she says she feels much older.
Luckily, her job is flexible, allowing her to visit her mother in the nursing home on days when she can work from home, or to await hospital discharges for her father. She often feels as if her life is consumed with worry and care, and more worry. And, I dare say, she is one of the “lucky” ones. She had the knowledge and the wherewithal to access the right tools at the right time. Additionally, she didn’t have to take any unpaid leave, and her spouse has been engaged and supportive.
But I wonder what it would be like for her without the support of her spouse, employer and friends. And yet, many people in her situation simply don’t have those advantages.
The Burdens of Uncompensated Care
AARP estimates that uncompensated care provided by family members for older adults, or for disabled or sick kids, would cost nearly half a trillion dollars if we had to pay other people to do it. Whether we know it or not, as a country, we still rely on families to do this work. But people do this work out of love, and most wouldn’t take money to do it, even if we had it to offer. Yet, they often have other needs we can, and should, be meeting.
So, why is caregiving so hard?
Family caregivers are usually short on time. Many are women in their middle age, which just so happens to be their prime earning years, who often also have children at home (demanding their time) or in college (demanding their money).
Something has to give when there are so many needs and limited time. We do know that it’s the health of the caregiver that most often gets lost. And research shows that caregivers are more likely to become physically ill during the course of the year.
The stress on caregivers is intense.
In addition to being asked to do more in a day than one person possibly can, caregivers experience a range of emotions—from grief to resentment—and they often don’t even think to reach out for support for themselves.
Walking in Barbara’s Shoes
If you have never been in Barbara’s shoes, think about your daily responsibilities and stresses at work and running your household. Then imagine the situation has changed overnight. Now you are overseeing another to-do list of errands and home maintenance, paying a second pile of bills, and scheduling, re-scheduling and driving to umpteen more medical appointments. Yes, there are many businesses eager to assist, but vetting and booking these takes time you don’t have, and funds that may be scarce. Or, picture a loved one with mobility challenges that demand reconfiguration of their two-story home—or maybe a spare room in your home must be transformed from your sanctuary to a bedroom.
Are you stressed out yet?
In polling women I know who have found themselves wishing they could be cloned to be in two or three places at once, they offered some advice on how friends and family can help. We are all quick to ask, “Is there anything I can do?” But these superwomen don’t relish asking for a helping hand and really don’t want to ask for a favor and be told no. If you offer, follow your expression of concern with a specific idea or two, be it helping with transportation, paperwork, accepting deliveries or assembling or re-arranging furniture. And, be realistic about what you really can do to ease the burden.
Not helpful is when empathy veers into a long conversation about the well-wisher’s own experience in handling these burdens. Or when healthcare staff assume there are other siblings or adult children available to help. In today’s world with smaller families whose members may live far apart, we need to recognize the need for support systems.
If the resources are there, we know that family caregivers can be less stressed and more effective. But resources are spotty and elusive. So we know how to help as family and friends, but what more can we do? As advocates, we can:
But, most of all, we can talk about it. Don’t let family caregivers you know…remain invisible.
Mark D. Olshan, who holds a doctorate in psychology, is the Director of the B’nai B’rith International Center for Senior Services as well as Associate Executive Vice President of B’nai B’rith International.