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Donors Help Caregivers Through Alzheimer's and Parkinson's Respite Program
June 2010
Alzheimer's and Parkinson's disease are long-term, degenerative illnesses that rob patients of life as they once knew it. They also irrevocably change the lives of the people who care for them, creating enormous physical and emotional stress. That's what happened to John McCarty when his wife Margaret contracted Alzheimer's in the late 1980s.
"My father took care of her for years, but it eventually got too much for him," his daughter Eleanor Cheney recalled recently. "He finally hired around-the-clock help. It was a very difficult time for them."
| Bill and Eleanor Cheney |
"One day, he saw a TV special about Alzheimer's. It featured a man who was so overwhelmed by his wife's illness, emotionally and financially, he felt he had no alternative except to end her life and his own. This made a huge impact on my father; he understood what the man was going through and wanted to help others like him."
McCarty approached Visiting Nurse Health System about creating a program to support the caregivers of Alzheimer's patients. Thanks to his generous support, we launched the Alzheimer's and Parkinson's Respite program in 1990. Eleanor and her husband Bill continue to fund the program in her father's honor.
One of our long-time Board members, Lou Brown Jewell, has also supported the program since 1995. Her first husband, A. Worley Brown, suffered from Parkinson's and Lewy body dementia. Lewy body dementia symptoms mimic Parkinson's diseases symptoms. Protein deposits called Lewy bodies build up in nerve cells in regions of the brain that controls thinking, memory, and movement. "My husband had five caregivers working around the clock to care for him, but it was very hard to get help on the weekends," she says. "Visiting Nurse stepped in and cared for him on Saturdays and Sundays."
This much-needed program has been a godsend for hundreds of families, but hundreds more have insufficient resources to pay for what could be years of caregiving. "You have to go through something like this, then you understand," says Jewell. "It's a terrible strain. Families need help."
We visited two of the families currently in the program and saw first-hand how our professional caregivers are helping them cope. Charlie Barnett, now 83, was diagnosed with Parkinson's in 1993. The program pays for a CNA to care for him two days a week, 7 hours each day.
"I thank God for this program," says his wife Helen, 79. "Charlie likes me to get out, but I can't leave him alone. Without the respite care provided I couldn't leave the house to buy groceries or visit my sister. The Visiting Nurse staff gives me such freedom." Still very much in love after 62 years of marriage, Helen and Charlie understand the toll this disease can wreak on a relationship and are determined, with the respite care they are receiving, to get through it together.
The one thing that touches the staff most is the loss of the patient's independence. And for their loved ones, the person they knew is gone.
Mr. Charlie Barnett passed away in August 2012 and the respite team was still caring for him up until that time. Mrs. Barnett requested donations be made to our program after his death.
Lilar Moore always appreciated the teamwork that she and her husband, Jim, experienced in their marriage, but that disappeared when Jim was diagnosed with Alzheimer's 17 years ago. Lilar has been caring for him ever since. He is bedridden and needs care 24 hours a day. Two days a week, however, Lilar gets a much-needed break when a caregiver from our Alzheimer's team arrives. "The team is like our family," she says. "Without them I wouldn't be able to leave the house to get to doctor's appointments or go to church."
According to an article in the Journal of the American Society on Aging published in 2009, providing support to caregivers has become an important practice and policy issue in the U.S. because informal, or family caregivers, are the primary instrument of support for people with chronic conditions. The authors describe informal caregiving as an "idiosyncratic" process; each family caregiver interprets his or her role differently because of family history and circumstances, and the wide variations in the tasks they choose to take on.
The respite care staff agrees that each family is unique, and their care is never "one size fits all." Caring for a patient's needs during the day may include bathing and dressing them, helping them eat, ensuring they are comfortable and safe, and a myriad of other tasks. Situations vary from one home to another, but the Alzheimer's and Parkinson's respite team are inspired by every patient. The staff sees their work as a calling.
Dorothy Davis, executive director of the Long-Term Care at Home division, oversees the Alzheimer's and Parkinson's Respite program. She says that this type of caregiving is needed by hundreds of families, but care is expensive and most insurance plans, including Medicare and Medicaid, do not cover it. "If a family doesn't have the resources to pay for caregivers," says Dorothy, "there is nothing they can do. Medicare doesn't reimburse for "unskilled care' for caregivers. Our nurses are anything but "unskilled' but that is how Medicare views it. Our greatest hope is that families who have been impacted by these diseases, and helped by our program, will become our supporters for generations to come."
The thousands of dollars our donors give each year is a precious resource. In 2009, they made it possible for us to provide more than 17,660 hours of respite care to 56 patients and their families. Sadly the need in our community is much greater than even these resources can provide. A new report from the Alzheimer's Association states that Georgia is home to more than 396,000 unpaid caregivers.
Says Dorothy: "No other nonprofit organization is meeting this need and it fits our mission perfectly. I hope our donors realize how their support is changing people's lives for the better, easing the burden of caring for a loved one. We can't thank them enough."
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