Caregiver wants to find a support group with a balanced perspective
"Minding Our Elders" columnist Carol Bradley Bursack advises a reader who wants support and to talk to others in this position, but doesn't want to get "mired in the negative."
Dear Carol: My wonderful dad has Alzheimer’s. I struggle daily with my grief over all that’s been lost but I’m also grateful for what he can still do. As you often advise, I’ve joined some online support groups to see if they can help me feel less alone with my confusing emotions. The problem is that these groups seem to be populated by caregivers at the extremes. They either feel completely beaten or they gloss over the daily challenges of dementia care. Is there a group where I can honestly express how hard it is to see my dad lose so much without getting mired in the negative? — LC.
Dear LC: There is nothing straightforward about dementia caregiving, so I congratulate you for acknowledging the complications and seeking peer support.
You’re also smart to recognize that while social media groups can offer a lifeline to caregivers, individual personalities and personal experiences can often set the tone of specific groups. This can lead caregivers looking for support to feel as though they must choose between their shifting emotions rather than acknowledging each as valid.
Positive caregiving advocates emphasize that caregivers should “focus on what the person living with can still do, not on what they can’t.” This focus does not mean that you as a caregiver should deny the challenges and emotional pain. In fact, not noticing new losses could mean that you miss opportunities to help your dad. That said, groups that only focus on the negative aspects can leave you in an emotional pit.
You may or may not find a group that consistently hits the right note regarding your likely changing feelings, LC. However, you may find that a group made of frustrated people venting is exactly what you need on certain days because it helps you regain perspective. Conversely, you may find that a group that focuses on “positive caregiving” is the ticket on a day when you need to be reminded that your dad is still your dad.
There is no right or wrong, just what works best for you at any given moment. One caveat: if you see bullying in a group due to the caregiving decisions made by others, move on.
As I mentioned earlier, no one group is right for everyone. However, the AARP Family Caregivers Discussion Group on Facebook is run by Amy Goyer, who is an experienced family caregiver. This group is about as balanced as any that I’ve seen.
A free non-Facebook group that’s been around for a long time (I moderated it for over 10 years) is www.agingcare.com . There are scores of others available, too, so feel free to experiment until you’re comfortable with a few of them. Always feel free to take a break from a group or leave it entirely if you find that it’s not providing what you need.
Remember, too, that a trained counselor can help you stay more balanced in your life, overall. That kind of care is even easier now that so much is available online.