As many family caregivers can attest, caring for a loved one who has a chronic or progressive health condition such as Alzheimer’s disease can be physically, emotionally, and mentally challenging. As well as 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 in which you get through a day, the caregiver’s journey is wearing. It can be difficult (or even feel impossible) to find the time and energy to take care of yourself.
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!
For over seven years I’ve facilitated a support group for the Alzheimer’s Association (as have several of my colleagues). Participants share a range of experiences and emotions:
- feelings of being overwhelmed
- struggles with problem solving
- fatigue, tiredness, or exhaustion
- grief
- sometimes, 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.
Long-Distance Caregiving
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 and insights, and gain strength from the collective of a support group.
You Are Not Alone!
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, 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!
<What is a Care Manager? We help families in the midst of “overwhelm.”>
A Place of Trust and Safety
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 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 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 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 devasted. 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!”
Feeling a bit overwhelmed? Struggling with your journey as a family caregiver? We can help! Schedule a free get-acquainted call with us today.
Bonus: Self-care is indispensable to caregiving. To learn more about self-care and respite in particular, I encourage you to read this article from my colleague Nicole Amico Kane: Self-Care is Not Selfish: It’s Essential for Family Caregiver Well-Being.
