Barbara Boylan was just 62 when she began forgetting things and losing words. After a fall, a neurologist diagnosed her with mild cognitive impairment.
That was seven years ago, when her family began what’s known as the “Long Goodbye”: starting to grieve as the person she once was began to fade away.
Boylan spent her career as a long-term care specialist, organizing activities for people with dementia. She was one of the people who helped develop the dementia unit at Black Mountain Center.
Ironically, she would now be on the receiving end, says her husband, commercial real estate broker Robin Boylan.
She would have to leave her job in 2012, and for awhile, Boyland was able to care for his wife at home.
“I would come home from work and find all her jewelry on the bed,” he says. “It seemed she was always cleaning something out, emptying something.”
Eventually, in 2014, she would have to attend adult day care.
“She didn’t want to go, but we told her she would be helping to organize activities, and CarePartners went along with the ruse,” he says.
Today, she lives in a long-term care facility. She no longer walks or speaks.
Dignity in decline
Becky Anderson also has spent the last decade saying goodbye to her spouse, Ed, who is in long-term care at Givens Estates Health Center. He once managed three large manufacturing facilities, but today he no longer walks or holds a conversation; he rarely lifts his head.
“I go over every evening and spend two or three hours with him,” she says. “It was really hard to give up caring for him, but it got to be too much for me to do alone.”
For Anderson, the most important thing has been to preserve her husband’s dignity.
“It’s important for him to get out of his room, to be with other people, even if he doesn’t speak,” she says. “It’s important that he be treated as a person who still has value.”
In 2017, more than 15 million Americans provided unpaid care for people with Alzheimer’s and other forms of dementia, according to the Alzheimer’s Association. These caregivers provided an estimated 18.2 billion hours of care valued at more than $230 billion.
And while many are happy to provide care for a loved one, it’s a stressful job, compounded by the sadness of seeing a loved one lose one ability after another.
“There’s a reason they call it the Long Goodbye,” says Boyland. “It’s brutal.”
Care and concern
Some 35 percent of caregivers of people with Alzheimer’s or other dementia report that their health has gotten worse because of their responsibilities, as compared to of 19 percent caregivers for older people who don’t have dementia, according to the 2017 Facts and Figures report from the Alzheimer’s Association.
For Boyland, his work and the support of his two adult children have been essential in preserving his health, both emotionally and physically.
“The kids have been rock stars,” he says. His daughter, Katharine Fuchs of Charlotte, has chronicled her mother’s decline in her blog, Southern Bourbon Mountains.
The changes are gradual but relentless. Patients lose the ability to make decisions, to drive, and eventually to shower, dress or even feed themselves. Even the abilities to speak and walk are lost, and caregivers are faced with increasing responsibilities and duties as they watch their loved ones disappear, piece by piece.
Some people with dementia become combative and angry, frustrated as they lose the ability to navigate everyday life, and caregivers bear the brunt of the abuse.
Losing the ability to drive is often a hard issue, but Anderson learned in a support group that hanging keys that don’t go to anything on a hook near the door might help convince her husband that he could get out if he needed to.
“He could grab the keys, but he couldn’t start the car with them,” she says. She also learned that placing child safety locks higher up on the door would stymie his efforts to get out and wander — a common behavior.
Call for help
“The first thing you need to do when you get a diagnosis is call for help,” Boyland says. “You can’t do this alone, and no one should try.”
In Asheville, Memory Care has worked with people who have dementia and their families for two decades, assessing, advising and referring caregivers to needed resources. The Alzheimer’s Association — Western Carolina Chapter offers referral services to specialists and assistance through its Direct Connect Referral program.
Among the services of Memory Care are regular assessments of caregiver stress.
“Sometimes people just don’t realize how stressed they have become,” says Lindsey Kremer, social work care manager at Memory Care.
The assessment, the Kingston Caregiver Stress Scale, consists of 10 questions broken down into three groups: caregiver, family and financial issues. It asks whether family members are experiencing conflict over the care of the person with dementia, whether finances are stretched, whether the primary caregiver is feeling trapped or confined or whether the caregiver fears not being able to continue to care for the person.
“This helps us know when the family needs more help,” Kremer says.
Systems of support
Denise Young, regional manager for the Alzheimer’s Association, says the first thing people who face a family member being diagnosed with Alzheimer’s need to do is forge a community of people on whom they can rely for emotional and other support.
“It can be a church, a group of neighbors or old friends or family,” she says. “Don’t be afraid to admit this is more than you can handle alone, because it is more than you can handle alone.”
The Alzheimer’s Association connects families with specialists, social services, attorneys who specialize in geriatric issues, therapists, in-home care or assisted living specialists — everything they will need to optimize care.
“Stress is a big issue,” Young says. “There’s a reason it’s not uncommon for caregivers to die before the person with dementia.”
The most important thing any caregiver can do for self-care is to get help, Young says. Respite is essential, and if friends and family can’t offer a caregiver a chance to get out for a few hours a week, there are agencies that provide that opportunity with adult day care or in-home services.
“You’re no good to the person you’re caring for if you don’t take care of yourself,” Young says. “Don’t try to do it alone. Just don’t. There’s help. Take it.”