My first encounter with unofficial hospice volunteering took place many years ago when HIV/AIDS was viewed as an early death sentence. I remember my patient saying, “But when I’m with my support group, they don’t care how I look. They can see past the ugliness of my outside. It’s like I’m fighting a war with other people like me on my side. We tell each other any information we know that will make our lives better. Even when it looks like I’m losing the war, they give me hope for the future. I give them hope, too.”
I knew that no amount of reading would ever make me know his pain and suffering. The support group was where he garnered much of his strength and improved self-esteem for dealing with the disease. Many people have a need to share their challenges with someone who has experienced what they are going through. That’s why I have great respect for well-run support groups. Caregivers often need respite time away from patients, so they can share their experiences, gain information from others, and relieve stress.
Frances Cooper is 87 years old. After years of caring for her husband, who had Alzheimer’s (Alz-high-merz) disease, she has accumulated a wealth of advice that can benefit others. She leads a support group that helps caregivers learn strategies for coping with the disease of their loved ones. For example, when her husband insisted that he wanted to go home (meaning the home where he was raised), she simply drove him around the block and returned to the house where they currently lived. This simple solution satisfied him. She also speaks about having her husband sort eating utensils, an activity that some patients with dementia find enjoyable.
You can view a brief clip of Frances Cooper’s Alzheimer’s disease support group for caregivers. Frances Cooper’s caregiver stories have been a source of inspiration and support for many.
If you are a caregiver who would like to share your written caregiver story with others or read stories by other caregivers, visit the Care2tell.com website.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”
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