By Wendy Nathan, B.Sc., CMC
“Remember, we all stumble, every one of us. That’s why it’s a comfort to go hand in hand.”
November is National Family Caregiver Awareness Month.
Family caregivers give it their all day in and day out, through the laughter and tears. No matter the duties, they make it happen. Some tasks are large, others small. Some responsibilities are intimate, others mundane. It can be difficult (or even feel impossible) for families to find the time and energy to take care of themselves. As many family caregivers can attest, helping care for a loved one who has a chronic or progressive health condition can be physically, emotionally and mentally challenging. And isolating.
As Aging Life Care Professionals®, we recognize how caregiving can easily lead to caregiver burnout. We often help families identify and implement self-care strategies, which are indispensable in family caregiving. (To learn more about caregiver burnout and self-care, I encourage you to take the Caregiver Burnout quiz and read this e-book from my colleague Jullie Gray: Burnout Can Happen to Anyone: Take the Quiz to see if your Caregiver Flame is About to Fizzle. )
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.
Support groups can be essential self-care
Those 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 a support group for the Alzheimer’s Association for young adults who have a parent living with Younger-Onset Alzheimer’s disease. Younger-Onset Alzheimer’s 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 may be unique in their situation, yet 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
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. Where a support group’s gifts become most evident is in the collective’s ability to understand your experiences as a caregiver. There’s validation, true empathy of the grief, loss and pain you may be experiencing. Most individuals in the group are either going through what you are or have been there themselves. You quickly discover you are not alone!
The culture of a support group is one of trust. The group is a safe place for participants to share fears, worries, frustrations, and sadness and to be completely understood by others experiencing similar feelings. It’s also a place to celebrate milestones, joys, awareness, achievements. The group can also help families 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 have come to develop effective, healthy coping strategies, problem solving methods, as well as their 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. Their experiences are their teachers. They graciously and generously share insights, ideas, resources, and offer practical suggestions. It works!
We all need community, connection
In my work as an Aging Life Care Professional, I see how caregiving can be a lonely, isolating endeavor. Often, the friends and family of clients 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. Support group participation is something we encourage, and it’s a beautiful way to build a community of support.
A support group participant put it best when asked to reflect on her experiences:
“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 6 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, financial decision-making, day-to-day concerns. Luckily, I found out about a support group through a friend whose husband also has 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. If feels so good to know that I am not alone in this!”
Find an Aging Life Care Expert to help you navigate caring for a family member, friend or yourself and implementing a self-care plan
Support Groups: Make connections, get help – from Mayo Clinic staff
Find an In-person Alzheimer’s Support Group – from the Alzheimer’s Association
Check local hospitals and clinics, as they often have support groups for different health conditions
Senior and community centers often offer support groups as well. Find one in your neighborhood and inquire
Your faith community may offer support groups too
Recommendations from friends
Wendy Nathan, B.Sc., CMC, is a Certified Care Manager with Aging Wisdom, an Aging Life Care practice with offices in Seattle and Bellevue (WA) and has over two decades of experience in healthcare working in a variety of roles. She has been facilitating a support group for over four years and has 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.