You are Not Alone! Support Groups Offer Valuable Community Connection and Help

Discussion group seated on chairs in a circle

“Remember, we all stumble, every one of us. That’s why it’s a comfort to go hand in hand.”—Emily Kimbrough

As many family caregivers can attest, helping to care for a loved one who has a chronic or progressive health condition can be physically, emotionally, and mentally challenging. And isolating.

You give it your all—day in and day out—through the laughter and tears. No matter the duties, you’re ready to tackle them one by one. Some tasks are large, others small. Some responsibilities are intimate and others mundane.

There are days when the edges of life seem to poke and chafe and there is little relief in sight. But then come the moments or even weeks where the routine is smooth and relatively straightforward. No matter the ease with which you get through a day, a caregiver’s journey is wearing. It can be difficult (or even feel impossible) to find the time and energy to take care of yourself.

Self-care is indispensable to caregiving. Learn more about self-care—and respite in particular—in an AgeWise King County article by my colleague, Nicole Amico Kane, called “Self-Care and Respite: Why Caregivers Need Both.”

Photo of part of a caregiver discussion circle includes middle-age and older men and women

Attending a support group is essential

There are many ways to care for yourself but I’ve found that attending a caregiver support group is an often-overlooked part of a healthy self-care plan. Many who do eventually stumble into a group wonder why they waited so long to attend. Their preconceived ideas included notions that people just sit around complaining about things they can do nothing about or they assumed that talking about your troubles won’t help, so why bother when there are so many other things to do!

I facilitate an Alzheimer’s Association support group for young adults who have a parent living with Younger-Onset Alzheimer’s (YOA). YOA is diagnosed when symptoms occur before the age of 65. The challenges these families have are different since the disease often occurs while the person with the diagnosis is still working or raising kids.

The group I facilitate is unique in that: 1) participants have parents who are in their 40s, 50s or 60s when diagnosed; 2) YOA is rare; 3) each group participant has different circumstances—some are still in school, others newly married, and some are raising children while helping care for a parent; and 4) these young adults are frequently called upon to fill in the gaps of care, offer emotional support, and sometimes help financially.

Even though the group I facilitate is unique, participants have experiences and emotions that are common to most family caregivers, such as:

  • Feelings of being overwhelmed
  • Struggles with problem solving
  • Fatigue or tiredness
  • Grief
  • Depression
  • Financial worries
  • Monotony
  • Anger
  • Disappointment
  • Isolation

A support group becomes a safe place to share and work through these emotions in a healthy way, and find reassurance, comfort, practical advice, and humor.

Another aspect of family caregiving that is growing, given our mobile society, is long-distance caregiving. Long-distance caregiving is defined as living an hour or more away from a person who needs care. The long-distance family member/caregiver can learn about resources, insights, and strength from the collective of a support group.

Where a support group’s gifts become most evident is in the collective’s ability to empathize and understand your experiences as a caregiver. There’s validation and true empathy of the grief, loss, and pain you may be experiencing. Most individuals in the group are either going through the same or have been there themselves. You quickly discover that you are not alone!

The support group culture is one of trust. The group is a safe place for participants to share fears, worries, frustrations, and sadness—completely understood by others experiencing similar feelings. It’s also a place to celebrate milestones, joys, awareness, and achievements. The group can also help you prepare for what’s to come.

As a support group facilitator, I am amazed at how participants manage the complexities of their lives. I am in awe of how each has come to develop effective, healthy coping strategies and problem-solving methods, as well willingness to listen and offer just the right advice at just the right moment. Even though I’m a certified care manager, I’m not the knowledge expert when we meet—the members of the group are the experts. Their experiences are their teachers. They graciously and generously share insights, ideas, resources, and offer practical suggestions. It works!

photo of a caregiver discussion group, with a facilitator at center, and people on either side

We all need community and connection

Caregiving can be a lonely, isolating endeavor. Often, friends and family will fall away following a diagnosis or as a health condition becomes more complex. People who truly understand what you are experiencing can be found in a support group.

A support group participant put it best when asked to reflect on her experiences before discovering a group and after participating:

“When my husband was first diagnosed with Alzheimer’s, we were both devastated. The physician who gave the diagnosis basically patted us on the hands, wrote a prescription for Namenda, and said ‘I’ll see you back in my office in six months.’ That was it! No condolences. No resources. No referrals. It was the loneliest time in my life.

“I had no idea where to turn, what to do, how to move forward. It’s obvious now that my husband was in a progressive cognitive decline. He was retired but now we needed to look at things like driving and financial decision-making—day-to-day concerns. Luckily, I found out about a support group through a friend whose husband also had Alzheimer’s.

“The group was a lifeline and a life-changer. I encourage everyone who is caring for a loved one to find a group. No one understands you like those in the group. And no one judges you. There is nothing but genuine concern, love, and good counsel. It feels so good to know that I am not alone in this!”

Wendy Nathan, BSc, CMC is a Certified Care Manager with Aging Wisdom, an Aging Life Care practice with offices in Seattle and Bellevue. Wendy has facilitated a support group for over four years and witnessed firsthand its transformative benefits. She is also a volunteer for the West Seattle Momentia Mix, a monthly event for community members living with memory loss and their family and friends.

Photo credit: All support group photos above were provided by The Alzheimer’s Association Washington State Chapter.

Alzheimer’s Support Groups & More

This article originally appeared in the November 2018 issue of AgeWise King County