By Rachael Johns and Mary Donnelly
• 1 in 3 seniors dies with Alzheimer’s or another dementia.
• Alzheimer’s disease is the sixth leading cause of death in the United States.
• In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion.
• More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; more than one-third report symptoms of depression. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.1 billion in additional health care costs of their own in 2012.
More and more, elders are suffering from Alzheimer’s disease and other conditions of dementia. The longer we live, the more prevalent this becomes in our lives. We may be called to care for a grandparent, a parent, or even our partner. Learning what to do and how to care for our family members as they age has never been more important.
Fortunately in Western North Carolina, we are able to find support for the increasing number of people that take on the role of family caregiver with a non-profit organization called MemoryCare.
What is MemoryCare? MemoryCare is a nonprofit medical clinic. The staff of MemoryCare are physicians and they exclusively treat people that have Alzheiemer’s or other memory disorders.
What makes MemoryCare so unique is not only does the program grant access to professional medical care, such as physicians assessing and diagnosing the patient, but MemoryCare is set up to also support the patient’s family with resources, education and intimate community support groups.
“Traditional medical knowledge does not prepare you for this,” says Keith, whose wife, Karen, was diagnosed with early onset Alzheimer’s when she was 50 years old. “The rules do not apply when looking after someone with dementia. Doctors are not trained in this. They cannot tell a family what to do and how to cope and manage.” He signs and shakes his head. “And they cannot do it in a ten minute appointment.”
Keith tells the story of learning with his wife that her foggy memory and other symptoms were not signs of menopause.
It took Karen at least eight months to get a diagnosis. “When you’re a woman and you’re 49 years old and experiencing short-term memory problems, the first thing we think is menopause.” Karen began taking black kohosh and different herbs, trying this and that. After finding that nothing alleviated her symptoms and discovering she was having more trouble at work, she made an appointment with her primary physician. Blood tests were run to find the cause of her symptoms and nothing physical popped up from the lab reports.
Karen was then referred to a neurologist who diagnosed anxiety and depression based on “difficult work circumstances.” True, she did have a demanding job as a meeting planner with the International Union, putting on parties for Al Gore and other people in D.C., but the pills she was prescribed for anxiety and depression did not work for Karen.
Finally the neurologist prescribed an MRI and neuro-psych test for Karen, which was a several hour ordeal. At the end of this, she was diagnosed with early onset Alzheimer’s disease. She was informed that she could not go back to work anymore. She was given a prescription and told to come check back in six months.
“There we are,” Keith remembers thinking, “What do we do now? Our income is cut in half and we have no idea what to do.”
Keith continues, “The problems start off slow. When you are first faced with the diagnosis of Alzheimer’s disease, you start to think about finances and lifestyle changes. One of the main questions at first is, how are we going to pay for this?“ Keith relates. “You get your will done because you’ve been putting it off anyway—it drives you to do these things, to put everything in order, and then the behaviors start. It’s the pain of watching your loved one lose their faculties one little bit at a time. How do you cope? It’s all in books, but by the time you’re in it, you don’t have the time to read.”
After exhausting limited support resources in the Washington D.C. area, Keith and Karen found MemoryCare and moved to Asheville, North Carolina.
The appointments they experience with MemoryCare staff are personal, supportive and last from one to three hours. “Rather than just say this is what you’ve got, take this prescription and we’ll see you in six months, they take on the family to help with resources and support,” says Keith. “The support groups from MemoryCaregivers Network are phenomenal.”
An auxiliary of MemoryCare, Asheville’s nationally-recognized nonprofit offering treatment and support for families affected by Alzheimer’s and other memory disorders, the MemoryCaregivers Network consists of three groups that meet monthly in Fletcher, Asheville, and Weaverville. “It’s a place where caregivers can talk frankly about whatever challenges they’re facing that month,” says Mary Donnelly, the Network coordinator and one of its facilitators, “such as how to tell a loved one she has to give up driving, or how to cope with a husband who’s become angry and aggressive, or how to decide when to make the move to a long-term care facility. We cover it all.”
Mary continues, “We’re into education and behavior modification. We problem solve and troubleshoot. The collective wisdom in the room is fabulous. We’ll have new caregivers come in and be resistant to acknowledging the disease in their family member. Within six months or so we have seen these same caregivers learning to change the way they think about Alzheimer’s and dementia, finally get it and reach out to help others. They’re learning what the disease means, learning to change their behavior—because the person with the disease cannot do it.”
“Support groups are very helpful when you’re dealing with a disease like dementia,” says Pat Hilgendorf, who cared for her mother at home with Alzheimer’s Disease for three years, and came on board with MemoryCare in 2008. “Most people don’t understand this disease, so it can get very lonely. But we laugh together, cry together, and share information about how we can make life easier for all concerned. It’s as much an education group as it is a support group.”
Funding for the Network was initiated by a grant from Glaxo-Smith-Kline in 2009, a portion of which provided for a monthly e-newsletter, Caregiver Network News. “We sent our first issue out in June 2009 to a mailing list of about 250,” says Donnelly, Caregiver Network News’ editor, “and now we’ve grown to nearly a thousand. We have people sign up from as far away as Australia!” A grant from Park Ridge Health carried the Network through 2012, and donations, memorials, and monies raised from a 2010 concert has kept them operating through 2013.
This November 10th, an encore performance of “The Music of John Denver” will be given at Diana Wortham Theater to benefit the MemoryCaregivers Network. It is a Network event all the way through: the Network members will provide the main body of volunteer workers, the performer is the husband of the Network coordinator, and every dollar raised will go directly to continuing the Network’s vital services in 2014, and hopefully beyond.
“The Music of John Denver” was first performed by Tom Donnelly in 2010 at DWT to an enthusiastic audience, many of whom were caregivers bringing their loved ones. “It was a wonderful experience” said Woodie Dyches, a caregiver who volunteered with the show setup and who attended with his memory-impaired wife. “My wife had gotten to where she didn’t talk much, but she sang along with the whole show. It really surprised me—I didn’t even know she knew some of these songs.”
For the 2013 concert, Donnelly will be joined onstage by his friend and world-renowned Celtic guitarist Robin Bullock, along with the Carolina Day School Fifth Grade Chorus. Returning to the band from the 2010 concert will be Mitchell County’s popular Rhonda Gouge, playing guitar, banjo, fiddle, and dobro; bass player Harold Vannoy from Thomasville, NC; and Donnelly’s wife Mary on keyboard.
Rachael Johns is a content writer with Asheville Creative Content. She enjoys interviewing local individuals, businesses and organization for promotional material. Visit AshevilleCreativeContent.com for more information.