Annette Knowles and Gwendolyn Burk know firsthand about the tremendous strain placed on caregivers. Knowles watched her grandmother care for her grandfather as Alzheimer's took hold of his mind. Burk cared for both of her parents when her father developed diabetes-related dementia and her mother fell into the grip of Alzheimer's, too.
They understand the pressure and isolation that caregivers can feel. And as social workers with a combined 36 years of counseling experience, they have resources to help.
Burk recently launched a caregivers' support group under the auspices of the Alzheimer's Association, and runs the meetings with Knowles' help. The group meets once a month at HPH Hospice in New Port Richey to share information and show caregivers they are not alone. Both women recently sat down with the Times to discuss the program.
How did Comfort for Caregivers get started in New Port Richey, and are there such groups for central and east Pasco?
Burk: I initiated the group, seeing the need for caregivers to have support, a time and place to meet and discuss their needs. Caregivers can experience a sense of isolation. Our country is seeing a dramatic increase in the number of people diagnosed with Alzheimer's, and we know it takes close to a dozen people to deal with each case, in terms of care giving. The number of caregivers is declining while patient numbers increase, many being diagnosed earlier now than ever. It becomes a tremendous emotional, financial and spiritual strain on the family members who are caregivers.
Right now the only support group is the one that meets in New Port Richey, but we hope to see others in the county in the future.
How many people typically come to the meetings?
Knowles: We hope for 12-15; often (we) have seven or so, and once (we) had only one person. A small group of seven is ideal and we have both women and men that attend. The ages range from 20 to 80. The two of us work together as backup for one another. If we have a large group we can break it into smaller groups so caregivers can all talk and share ideas.
What are some issues caregivers face?
Burk: Often one family member is handling things alone and other family members may not understand what is happening, especially if they're some distance away or out of state. The patient may seem perfectly normal during a phone conversation but this may be an isolated moment. The brief time of a phone call is not what the caregiver is dealing with when you consider their job is ongoing. We've even seen old family problems resurface for the caregiver and it all adds up to tremendous stress. Not every family member may agree with what the caregiver is doing. This is where support is needed for that person carrying the full burden.
What are some of the bright spots of Comfort for Caregivers?
Knowles: We are seeing friendships growing where caregivers exchange phone numbers and can call each other between meetings.
When do you see caregivers seeking support?
Burk: It's different for everyone. Some come right away; others wait until they are really exhausted.
We have one couple with a family member just diagnosed with Alzheimer's. They came immediately for help and support. It's really ideal when family members can come together and can get information early. Having someone else in your situation to talk with tends to normalize your own experience. It's a good time to just get away from the responsibilities, relax for a short time and it's a chance to generate fresh ideas from others' experiences.