Willard resident, Shirley Fouraker, has been married to her husband, Bob, for nearly 60 years. And last July, he was diagnosed with moderate dementia/Alzheimer’s. She talked about her role as caregiver earlier this year.
“At the time it wasn’t that bad, but this last month it progressed really, really fast. In fact, I went today to put his name on a waiting list at a nursing home,” said Fouraker.
Since then, her husband has been moved to a care facility. But she and others with loved ones suffering from dementia and Alzheimer’s who are living in nursing homes are still considered caregivers.
Many people in Missouri and across the world are currently caring for loved ones with dementia and Alzheimer’s.
According to the 2020 Alzheimer’s Disease Facts and Figures, released in March by the Alzheimer’s Association, more than 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias. Last year alone, caregivers of people with dementia provided an estimated 18.6 billion hours of unpaid assistance, a contribution to the nation valued at $244 billion.
In Missouri, the report found there were 319,000 caregivers of people with Alzheimer’s and dementia last year. Those caregivers contributed 363 million hours, valued at $4,755,000, in unpaid care.
Behind the numbers are heartbreaking stories of lives turned upside down.
Before the coronavirus pandemic, Fouraker told KSMU she was already retired when her husband began showing signs of dementia. And, while she didn’t have to give up a job to care for her husband, it’s impacted her in other ways.
“I don’t go anyplace. The only place I go is for doctors' appointments, and we usually stop on the way home from a doctor's appointment to eat, so I do get to eat out some, but, other than that, we pretty much are just stay home. Period,” Fouraker said.
While her husband napped, Fouraker passed the time by reading. And her two daughters helped out when they could. She didn’t hesitate to take on the role of caregiver.
“Fifty-six years ago, I said, 'for better or worse,' and this is for worse, but I will not leave him, and I won’t—I mean, I’ll take care of him until he’s gone,” she said.
She began thinking about putting her husband into a long term care facility when he started falling, and health professionals say dementia worsens with each fall.
Wayne Creed of Springfield, started taking his wife, Carolyn, to the Memory Disorder Center at Mercy in 2007. And he cared for her at home until three years ago.
“It just got to be more than I could handle, so we had to do something,” Creed said.
Carolyn now lives in a nursing home in Strafford. Before nursing homes closed to visitors to prevent the spread of the coronavirus, Creed went to see her and feed her lunch every Monday, Wednesday and Friday. He said he would have gone more often, but the staff there told him Carolyn got upset when he had to leave. It’s hard for Creed to be at home alone. He keeps Carolyn’s photograph on the chair she used to sit in.
Carolyn had a stroke two years ago, which left her without the ability to walk or talk.
“She just kind of jabbers when she talks, and you just say, ‘yeah, yes,’ you know. And every once in a while she’ll kind of tear up, and I’ll just tell her that everything’s OK, and it’s just—it’s very hard to do, but we just do it,” he said.
He’s gotten help for depression, and he finally found medication that makes him feel better. He can now talk about his wife of 60 years without crying. Fouraker planned to seek help for depression, too.
Nancy Johnson and her husband, Gregory Johnson, were caregivers for Nancy’s mom, Frances, for two years. She had to be moved to a long-term care facility when Alzheimer’s meant she could no longer live alone. She passed away on April 25 at the age of 93. Before the pandemic, Johnson visited her mom every day, and she said it was her responsibility to help care for her.
“You know, she gave us all the love and care at the beginning, and you hear about that as your parents get older that we've just turned around, we’ve changed roles, and we did it cause we love her,” she said.
Johnson’s husband gave her lots of support, and her brother drove 10 hours from his home in Minnesota every month before the pandemic. Johnson said it gave her time to do things she didn’t have time to do since she spent every day with her mother.
And now, the Johnson’s are helping care for Gregory’s godmother who has been diagnosed with dementia.
One of the hardest parts of being a caregiver for Johnson is the emotional toll it takes. On the day KSMU talked with Johnson earlier this year, she had gone to visit her mom.
“She was mad at me today. It was really hard for her to be mad at me, but you just say ‘I love you, Mom,’" she said.
Having a loved one with Alzheimer’s or dementia often involves a lot of guilt. When it comes time to consider a long-term care facility, many wonder if they’re doing the right thing.
“It’s a hard, hard decision, and the worst people say, ‘Well, I would never put my mother in a nursing home or my loved one, you know. But they haven’t lived the life you have, so...your heart knows, and you’ll do what’s best for him,” said Nancy Johnson.
And there are other decisions caregivers must make that also provoke feelings of guilt. Like the time Wayne had to consider whether or not his wife should still be driving.
“My wife had her own car, and I had my pickup. And then when she wrecked the car, and I told her I was going to take the keys away from her. She said, ‘why don’t you just kill me?’” said Creed.
Caregivers of Alzheimer’s patients can share their stories with those who understand what they’re going through, as well as get and give advice, at support group meetings, usually held at various locations each month across the Ozarks. Those meetings are now held online or by phone due to the coronavirus.
Click here for a list of support groups in Missouri.