GROUP TOGETHER
Starting a Group to Help Yourself and Others
BY:LINDA CHILDERS
At 75, my mother looked 10 years younger and was always on the go, an active grandmother who shunned the local senior center, claiming she didn't want to hang around old people. But at 76, she was diagnosed with Parkinson's disease, suffered a broken hip and a series of strokes, and seemingly overnight became totally dependent.
After many late-night visits to the ER, her doctor recommended that my mom-now wheelchair-bound, incontinent and suffering from advanced vascular dementia-be moved to a facility where she'd receive round-the-clock care. Once I moved her there, I felt terribly isolated and longed to talk to others in a similar situation. My husband and friends were understanding, but most had still-healthy parents and even grandparents. At 36, I officially found myself part of "the sandwich generation," caring for my mother and young son.
At the care facility, I saw other adult children of patients who looked as lost as I felt, and occasionally we'd talk. I told one woman I was an only child, and she smiled wryly and said, "When a parent is ill, many of us become only children. I have four siblings who I haven't seen since my mom was first diagnosed with Alzheimer's."
I sensed a common thread. We all had questions regarding our loved one's condition and wanted to ensure he or she received the best possible care. So, I approached the facility administrator with the idea of forming a family support group. She enthusiastically agreed and asked if I'd spearhead it. In return, she'd provide a meeting space and buffet dinner for our monthly gatherings.
For the first meeting, I called a representative from the Alzheimer's Association to discuss how to best communicate with a loved one who has dementia. We received wonderful suggestions, such as bringing old photo albums or recordings of our loved one's favorite music when we visited.
As a group, we also shared our individual caregiving experiences. So many people felt guilty that they could no longer care for their loved one at home, while others admitted they felt isolated and were glad to connect with families experiencing similar challenges. We compiled a list of names and phone numbers of everyone in the group and formed a "phone tree," so if one of us was ill or on vacation, another caregiver could be called upon to check our loved one.
We had 30 caregivers at the first meeting, and the group eventually grew to include about 40 families. Our meetings included a discussion with a pharmacist regarding prescriptions and drug interactions, and another speaker who emphasized the importance of self-care. But most importantly, we provided respite and understanding.
My mom passed on a year and a half after she entered the facility. I keep in touch with many of the other families, but outside the realm of the organized group. I was recently invited to a 70th birthday party for one of the women I met in our support group. We had helped each other grieve after our loved ones died, but at her party we celebrated the knowledge that our shared experiences had made us lifelong friends.