More Than a Hug: How Caregiver Peers Can Support Each Other

Friends arrive with extra meals or share a coffee, meeting them for a stolen hour, somewhere close to home in case of another emergency. You part with a hug and the friend offers words of encouragement. “Hang in there.” You hope you can.

The next long nights and days of managing caregiving on top of the rest of life’s responsibilities go by in a blur. You are hanging on, but barely. While friends are essential, it turns out that other primary caregivers who share your emotional and physical roller coaster ride may offer the best source of help. And even on your most frazzled days, you may be a source of help to them as well.

If you need more than a hug, read on.

Asking for help is not easy for family caregivers (or many of us, really). When we understand that we don’t have to be the expert in this thing called “family caregiving,” we can transform our role as a family caregiver.

Taking care of family is generally ripe with guilt. Guilt for not doing enough, not spending enough time, not having the right tools, not being able to juggle all the many hats one wears. When the weight of playing this role becomes all consuming, the family caregiver isolates themselves—turning down coffee invitations, date nights and workouts at the gym. “There’s no time,” the dutiful family caregiver cries. But the moment you surrender the notion of being “The One” to handle it all and ask for help, you are becoming a less stressed-out caregiver.

We are not trained to care for our parents. We don’t know what to do when the people who were the ones in charge become the ones who need the care. And while many of us may feel strongly that it is our duty to care for them, that doesn’t mean we have the knowledge or heart to handle the myriad of roles caregiving demands.

Knowledge is one thing. We can learn about a disease or how to set up a medication box. But taming our emotions requires a strong support team. How do we deal with caring for a father who may have abused us or was simply absent from our lives? Or a mother who was an alcoholic and now needs our care? Or how do we convince our siblings that they need to help, too?

That’s the worst-case scenario. It may also be that you love your parents and get along famously with your siblings, but still feel overwhelmed and underprepared to step up to the role of caring for Mom or Dad.

Today there are more people over 65 than teenagers and a higher number of people over 85 than under five years old. Demographics don’t lie. We are becoming an older nation. It shouldn’t be news to anyone, but because we strive to put off, ignore or hide aging, we tend to also turn a blind eye to the aging around (and within) us. Because of this, we are “unexpected” caregivers. We either say our parents are “just aging,” or we blame all their issues on aging. Aging, in and of itself, is not the problem; rather, it’s the diseases that can accompany us into older age that cause loved ones to need care.

Americans, like in many nations, will be forced to depend on family, friends and other potential caregivers. In 1990 there were 11 potential caregivers for each person needing care. In 2050, that ratio will be four to one. More informal caregiving networks will be needed, such as churches and local communities, to offer information and support to those providing care to aging adults.

Instead of organizations leading the support, however, I encourage caregivers to consider hosting peer-to-peer caregiver support groups. Peer-to-peer support groups provide so much more than other caregiver resources. Other caregivers have valuable insights, can empathize and let us all know that we are not alone in our struggles.

A couple years ago, the Lutheran Endowment for the Elderly at ELCA Foundation provided funds to Northfield Retirement Community in Minnesota to help start some peer-to-peer support groups. Several groups ran simultaneously and we were able to gain valuable insights and evaluation from the groups. But worth their weight in gold were the comments from members:

“My dad is widowed and lives by himself,” said one participant. “The group is a great way to share my concerns and fears as I encounter different issues in caring for him."

“Other caregivers have valuable insights,” said another. “They share practical information about a variety of subjects, including transportation, health care and taking care of myself. These people help me to maintain equilibrium at all times. We all share many issues and feelings. We can empathize with each other. It’s a safe place to express oneself, even to cry."

”Following the format these groups used, we were able to develop an easily replicable peer-to-peer caregiver support group program. Any caregiver or past caregiver is a candidate for starting a peer-to-peer group. Groups can be set up at colleges, hospitals, senior centers, senior housing, church and community groups, workplaces or even at an individual’s home.

Group members are each given a turn to check in and express how they’re feeling in relation to their caregiving, without interruption or feedback. They can also pass. A discussion topic is provided to facilitate informal sharing. All information that is shared stays within the group, creating a sacred space.

If you’re feeling alone, I encourage you to consider starting a peer-to-peer group. Chances are you won’t have to look far to find someone who knows how it feels to be in your shoes.