The facts are staggering: 5.4 million Americans have Alzheimer’s Disease today; by 2050, that number could triple to up to 16 million; the disease is the sixth leading cause of death in America and will cost the nation $200 billion this year.
Perhaps the most devastating fact of all is that there is no known cure.
For the third part of our series The Golden Years: Aging in Our Region, WHQR’s Michelle Bliss talks to one Hampstead family learning to cope with their loved one’s early-onset Alzheimer’s.
There are 200,000 Americans living with early-onset Alzheimer’s. Ann Deveny’s husband of 46 years, Dan Deveny, is one of them.
Dan was an Army chaplain and the couple moved 34 times before settling in North Carolina.
“Now this is a picture of when we were stationed in Germany. We used to go riding in Germany just because it’s so beautiful. And we happened to be driving by a poppy field, and so, Dan is a very spontaneous person. And he said ‘Well, we’re going to get some pictures.’”
Ann clutches the framed photo of her husband. In the impromptu shot, Dan is wrapped in a blanket of red flowers.
“To me it’s just gorgeous—the field of poppies. And his hair is real dark here, so it was in our younger years. You can even, if you look closely, you can see the wheat and the weeds coming up through. But the mass of poppies is beautiful.”
Like a weed, Alzheimer’s disease creeps up on us. By the time someone is diagnosed, they’ve probably been suffering—and losing brain function—for years. Dan was diagnosed in 2006 in his late 50s, but Ann noticed changes in his behavior several years earlier. Dan now lives in a personal care unit at Brightmore of Wilmington where she visits at least every other day.
“I always dress as though I’m going to see him for the last time because I’m not even certain he knows the minute I walk out that I’ve been there. But I know. So, I want my hair done; I want my makeup on; I’ll put just a little spritz of perfume on. I think it’s more of being self assured to be solid and to be okay for that moment.”
Ann used to think that she would die shortly after Dan, but now she’s looking ahead to a much longer life. And she’s found ways to maintain her composure. She no longer cries at his bedside. Instead, she reads to her husband, the former preacher, passages of scripture from their weathered devotional.
“There’s a scripture in the Book of Habakkuk, which isn’t one that you just flip to real often. It says: Though the fig tree should not blossom, and there be no fruit on the vines; though the yield of the olive should fail, and the fields produce no food; …yet I will exult in the Lord; I will rejoice in the God of my salvation. The Lord God is my strength…”
Back when Dan was still at home, Ann provided full-time care, helping him dress, bathe, eat, and toilet. After several sleepless nights, she called the Wilmington branch of Home and Stead Senior Care for help. A team of professional caregivers rushed over, including Alzheimer’s Administrator Ann LaReau.
“They were married almost a half a century. I mean, they were high school sweethearts. And the difficulty for her started when he couldn’t be with anybody else. I mean, she had no—she couldn’t go to the bathroom by herself. He had to be with her. She was his rock, his safety area, his comfort zone. And that separation anxiety is very common.”
Last year, more than 15 million family members and friends across the US provided more than 17 billion unpaid hours of care for a loved one with Alzheimer’s or another dementia.
With no cure in sight, LaReau says advocates need to expand their awareness campaign to the scale of what we’ve seen with heart disease and breast cancer.
“When the White House is frosted pink, that’s a huge campaign every year. Alzheimer’s isn’t there yet. In the month of November, which is Alzheimer’s month, we have the memory walks and some fundraisers, but it’s nothing near what cancer and heart is.”
Increasing awareness will be one step forward, but it’s not enough.
“Today we spend billions on treatment and pennies on research.”
During a recent campaign stop in Wilmington ahead of the May 8th primary, Newt Gingrich said that one of the largest cost-savings the country could adopt, in order to balance the federal budget, would be a brain science initiative designed to have breakthroughs in Alzheimer’s, Parkinson’s, autism, traumatic brain injuries, and mental health disorders like bipolar and schizophrenia.
Gingrich said that we’ve done it before and we can do it again.
“We don’t have today an entire range of problems that once terrified us. Polio is a good example. Polio used to be a very frightening epidemic. We stopped it. We stopped yellow fever. I mean, there are just all sorts of cases where we’ve gone out and we’ve learned how to do this. And the result is, suddenly, life gets longer, better, healthier, and less expensive.”
Alzheimer’s research has not been a major platform plank of this year’s presidential primary, but the issue is slowly making its way to a national forum.
On the local level, caregivers like Ann Deveny are gathering for support group meetings across the country, offering what they’ve learned to help someone else.
“The scriptures in Corinthians talk about us being sharers of comfort, so whatever we’ve been through we can help someone else go through it because we’ve walked their path.”
When Ann isn’t visiting her husband or attending a support group meeting, she’s volunteering, studying the Bible with her small group at church, and going to lunch with friends.
She says she’s in the process of getting her own life back—it’s all in progress.