Support in the “caregiver trenches”

Barbara Gerber Jones is a support group facilitator for the San Leandro family caregiver support group and participates in the Walk to End Alzheimer’s. She shares her thoughts on caregiving, awareness, and the support we all need to provide to those who are facing Alzheimer’s disease and to the researchers looking for a cure:

The heart and soul of why I enjoy being a family caregiver support group facilitator stems from the affinity I have for those attending my group. I understand the hard core issues and dilemmas they grapple with because I was one of them. In a therapeutic sense, we cannot take anyone someplace we have not traveled.

Years ago, my father was diagnosed with dementia at a time I knew nothing about the disease. It was baptism by fire; I clung onto every rope of information about how to manage his behavior I could find. I sought refuge in my family caregiver support group, a group I would come to facilitate. My previous work as an Addiction Therapist for the VA Medical Center made for a smooth transition, but I would have to process the loss of my father.

Grieving the loss of a loved one is a longitudinal process and it’s hard work; nobody can do the work for you. The constancy of anticipatory grief is always lurking in the background, and it’s for this reason that I have great passion for my support group members. I try to impart kernels of truth to encourage those who are just beginning their journey, and attempt to equip them with resiliency for maintaining their sanity along the way. It can be a long, twisty journey.

Some of my support group members have been attending for 5 or 6 years and there are also those who have continued to attend even after the death of their loved one. We are a pretty tight knit group who thrive on educating newcomers. We created our team name “Mindful Movement” for the Alzheimer Association’s Walk to End Alzheimer’s and participate in this yearly fundraiser. The support group members are wonderful people whose own experiences have become valuable resources for one another and many “friendships” have been established through the years.

If I could wave a “magic wand” to heighten America’s awareness of this disease, Walk to End Alzheimer’s as one of our largest fundraisers, would have the financial backing to thrust Alzheimer’s disease into the lime light, similarly to the way the Susan G. Koman’s Walk for Breast Cancer Cure is promoted. Alzheimer’s education would dispel the “stigma” associated with the misconception that people diagnosed with Alzheimer’s disease are old, are just going to die anyway, and the faulty notion that finding a cure is not that important. Collaborative work would trump the individual race for a cure. People are not the only ones impacted. Amazing photos exposing raw realities of neglected pets and withering plants would be featured as rings in the pond created by the Alzheimer’s rock. The image of an eighty year old person diagnosed with dementia would be replaced with that of a beautiful, forty year old woman; the magic wand would feature the face of an innocent, young child whose life is just beginning to be touched by a disease that will eventually claim her mother.

There are many faces to Alzheimer’s disease and until the echo of abandoned minds ceases to cry out from the grave, we must support those who stand in caregiving trenches and press on with the single focus of finding a cure.

– Barbara Gerber Jones, support group facilitator