Sometimes Sue McCormick wonders what’s worse — caring for your loved one who’s physically impaired or one who is so cognitively impaired they no longer recognize you.
As the co-owner of Synergy HomeCare in Alpharetta and the daughter of an ill parent, McCormick has seen both sides of that coin, and neither is pleasant to look at.
“It’s devastating,” she said the other day.
According to the Alzheimer’s Association, more than 5 million Americans are living with the debilitating disease, and there are more than 15.9 million caregivers of people with Alzheimer’s and other dementia in the United States.
That would certainly qualify Alzheimer’s as a household name, but you don’t hear about it all that much and then someone like country music legend Glen Campbell dies and all of a sudden it’s in the news again.
Campbell was diagnosed in 2011. He died a week ago at age 81, having helped bring “Alzheimer’s out of the shadows and into the spotlight.” He became a public face of the disease in 2014 when he allowed a film crew to shoot his final tour for the award-winning documentary “I’ll Be Me.”
Alzheimer’s, a progressive disease of the brain, is best known for causing memory loss, but it also has other debilitating effects on the body, and can affect people’s ability to move and eat by themselves. There is no cure for the illness.
If you’re fortunate enough to have to imagine what that’s like, count it a blessing and hope it never happens to you.
Anyone left holding the memories will tell you there’s never been a more lonely or trying place.
McCormick knows this perhaps better than anyone. That coin flips daily and sometimes minute by minute.
“We’re all touched in some way by this disease,” she said. “Every time you turn around, there is another memory care facility opening up. That tells me there’s a huge demand out there.”
No doubt. Every 66 seconds, according to the Alzheimer’s Association, someone in the United States gets a diagnosis.
Synergy HomeCare provides home care to people with Alzheimer’s and other types of dementia. What sets them apart, McCormick said, is the company’s certified nursing assistants go through a “virtual dementia tour” that simulates the symptoms of age-related Alzheimer’s and dementia to help them better identify and cope with their patients’ behaviors and needs.
For instance, caregivers learn not to approach a patient from the side because they get startled easily and can’t distinguish where sounds are coming from.
“It’s been an eye-opening experience for all of our staff,” McCormick said. “We try to hold one a month at different facilities to make families aware of what it feels like to have this disease.”
Experiencing what it’s like to have the disease, she said, opens the caregivers’ eyes to how it must feel and makes them more compassionate in their responses to those suffering from the disease.
The virtual tour was developed by P.K. Beville, a geriatric psychologist and founder of the nonprofit senior citizen advocacy group Second Wind Dreams.
McCormick said she’s fortunate her mother’s illness, while just as serious, is primarily physical — congestive heart failure, chronic obstructive pulmonary disease and rheumatoid arthritis.
“But so many of our clients are affected by this horrific disease, and I have seen over and over the devastation that this disease brings to families that care for their loved ones affected by Alzheimer’s,” she said. “It starts with mom or dad not remembering their loved ones, being afraid and confused as to why that person is visiting them, and often escalating to the point that they no longer remember how to do things like swallow.
“I think about which you’d rather have — the physical or the cognitive impairment? For families, it’s harder for someone who has cognitive impairment because the patient has no memory of them. But for the actual patient, it’s easier to have cognitive impairment.”
In a March interview with USA Today, Campbell’s wife Kim remembered a line from one of her late husband’s songs: “I know a place between life and death for you and me.”
“That’s kind of where you feel like you are living when you are living with Alzheimer’s,” she said.
McCormick looks across that divide every day and wonders.