Jeremy Nobel, MD, MPH

Being Unlonely


Caring for Caregivers

Thank a caregiver this holiday season!

Posted Dec 03, 2018

The end of the year is the perfect time to give thanks for caregivers and to reflect on the demands of informal caregiving as opposed to paid caregiving. Helping even one caregiver you know, like offering to temporarily lighten their workload, can make a world of difference this holiday season. And chances are, there is at least one person in your life who’s shouldering caregiving responsibilities.

According to the Family Caregiver Alliance of the National Center on Caregiving, one in five Americans is a caregiver. Unpaid caregivers who are also family members, such as spouses, adult children and siblings, or even devoted friends, often fail to take advantage of sorely needed support services. One reason is that these people may not think of themselves as caregivers. Another is that support services can be difficult to identify and access. As a result, informal caregivers are not just stressed but frequently very lonely. Why? I think the answer is three-fold.

First, many caregivers are overwhelmed by the complexity and challenge of clinical caregiving tasks, such as administering medications and managing intravenous ports. These are typically new skills that must be learned. The caregiver may also need to help with embarrassing issues like toilet aid or bathing a parent. These activities are difficult and challenging, leading to increased stress levels and burnout, as well as a tendency to turn inward. As a result, caregivers often withdraw from normal social activities that would otherwise provide support.

The time demands and the logistics of caregiving then exhaust and isolate the caregiver further, resulting in the second reason for caregiver loneliness. Mastering new skills is time-consuming in itself, but the actual performing of all the necessary caregiving tasks on a daily basis takes up even more time. Keeping the refrigerator filled, arranging and coordinating the various engagements with the medical system, paying attention to legal and financial matters - all push people to the limit.  

That exhaustion, often tinged with a growing sense of ineffectiveness and futility, leads to the third, inevitable challenge of caregiving: the emotional burden. Frequently, negative emotions surface, especially guilt about not doing a good enough job. I’ve rarely spoken with a caregiver who didn’t think he or she could be doing a better job of it and hold themselves accountable. And of course, there are those who feel that caregiving responsibilities have been thrust upon them. This understandable reaction to an unwelcome and unanticipated obligation can be particularly prevalent among younger caregivers. And yet, younger people are the most rapidly growing demographic of caregivers. Over 25% of caregivers are in the millennial population. It's not hard to imagine feeling it’s unfair or that you’re being victimized. That sense of peevish resentment is then quickly followed by more guilt that one is resentful of helping someone you love. And even when resentment isn’t part of the picture, a cascade of negative emotions associated with caregiving can isolate people even further. They feel embarrassed and they feel ashamed. Add that to the exhaustion, and they tend to withdraw.

One consequence of isolation and loneliness is a toxic reduction in self-care. Overburdened caregivers don’t prioritize positive health behaviors for themselves; removed from the positive support they can get from a community or a network of close friends, who may remind them of the importance of self-care, their own health deteriorates.

Given all of that, what’s the call to action? First, we must all recognize that caregiving is potentially isolating. Reach out and promote that idea to caregivers and to people who are in a position to support caregivers. Develop and provide easy access to specific programs to help caregivers, as we at the Foundation for Art & Healing did in Augusta, GA in 2017 with AARP. Arts-based activities, such as joining a choral group, can alleviate loneliness while providing joy and satisfaction for both caregivers and those in their care. A study done at Drexel University in Philadelphia found that making art at any skill level reduces stress hormones. Add to that the sense of connectedness that comes from participating in group activities, and the benefits are increased manyfold. University of California-San Francisco researchers showed that community choirs reduce loneliness and increase interest in life for older adults. Why not suggest to caregivers in your life that they could participate in group art activities, sometimes right along with their loved ones?

Just as important is the need to make sure caregivers pay attention to their own needs in order not become physically and emotionally depleted. Northwestern University reported that meditation can be an important coping strategy for the memory impaired and their caregivers. Making time for meditation may seem nearly impossible for those overwhelmed with caregiving chores, yet this activity, especially when linked to basic self-care measures like keeping the refrigerator stocked with nutritious food and doing some exercise each day can promote good health.

You might also consider offering respite care now and then so that the caregivers in your life can have much-needed breaks from their responsibilities. The caregivers are sure to return feeling refreshed and ready to take the reins once again.

On an encouraging note, national attention to the needs of family caregivers is on the upswing. There are laws currently being passed that will require hospitals to figure out who a patient’s caregiver is and attach that information to the patient's hospital record. That allows health systems to support caregivers directly, often the key to keeping loved ones as healthy as possible. Not only that, but employers appear increasingly willing to support caregivers in the workplace. More progressive family leave benefits are happening on a state by state basis, with some employers even giving unlimited paid leave related to family caregivers.

This growing awareness of loneliness among caregivers is leading to both marketplace and regulatory response in providing support to caregivers. That's important progress for which to give heartfelt thanks during this season of gratitude. Here's to a well-deserved happy holidays for caregivers as well as for all those in their care!

Sondra Forsythe contributed to the research and writing of this blog.