Alice Payne introduced herself to a new visitor to her home on Thursday as Alice in Wonderland.
She spends a lot of time in Wonderland, she said. Alice Payne has Alzheimer's Disease.
She has been married to Tom Payne for 57 years. They're both 78, born 10 days apart in a maternity home in Bakersfield, Calif. Though they were in the maternity home at the same time, they didn't meet until they were 21 and students at the University of California - Santa Barbara.
Tom Payne is former vice chancellor and dean of the University of Missouri College of Agriculture, Food and Natural Resources, retiring in 2016 after 17 years at MU.
November is National Caregiver's Month. More than 16 million Americans provide unpaid care for people with Alzheimer's or dementia, according to the Alzheimer's Association. Alzheimer's is the sixth leading cause of death in the country and 5.8 million Americans have the disease. It's projected to rise to 14 million by 2050 unless there's a cure.
Alzheimer's is a brain disease that causes a decline in memory, thinking and reasoning ability and eventually to death.
Tom Payne wrestles with the term "caregiver."
"In caregiving, your focus is more narrow than broad," he said. "A lot of people talk about that as if it's a burden. I understand that. I also believe it has a lot to do with your attitude toward it. Is it a new adventure?"
It's another phase of their marriage, he said.
"I realize it's caregiving," he said "It's just a part of life. It's this stage of our relationship."
Instead of caregiving, he said he sees it as simply caring for one another.
"He is a good caregiver," Alice said. "I forget things sometimes."
They travel together, as they have all of their adult lives. In September, they both went to Prague, Czech Republic, where Tom attends an annual international agriculture conference. They also visited Kappel, a small German village where they once lived and where they raised their children for a time.
"Our philosophy is do all we can while we can," Tom said.
Last month, they both participated in the Columbia Alzheimer's Walk fundraiser, as Fifi's team. Fifi is Alice's nickname. In comments he made at the walk, Tom said they walked to bring attention to the "dreaded disease" and support research to discover the cause, cure and prevention of Alzheimer's.
"Alzheimer's is an indescribably terrible disease that slowly changes your loved one before your eyes, while cementing your world together in your heart and in your mind," he said. "My Alice, My Fifi, and I are like so, so many to whom this is happening. And, hopefully like those same so, so many we have found a new joy in re-discovering things about ourselves and each other and recognizing new things."
He went on to say that the happy times may be short-lived, but they have them now.
They do laundry together, he said. He cooks dishes including a meatloaf with a recipe he got from the internet. He also makes beef stew. He uses an Instant Pot to make a chicken and noodle dish. He prepares bacon and eggs for breakfast.
"We're not starving with my cooking," he said.
Asked how she liked her husband's cooking, Alice said Tom studied his mother's cooking growing up and that her own father was a good cook.
He told her that she hadn't answered the question and suggested it was because she didn't like his cooking. That wasn't her intention, she said.
"The highest compliment I get from Alice about my cooking is 'OK'," he said.
She is enthusiastic about the wooden living room table he made when they were younger, mentioning it a few times during the conversation.
"He can do things really neat," Alice said.
Tom takes part in a men's support group and a breakfast support group for caregivers and their loved ones.
"It's very helpful," Tom said of the support groups. "They suggested we get these medical alert bracelets."
Another tip he adopted is to have business cards printed with his wife's photo on it in case she were to get lost while they were traveling.
"It's positive," Tom said of the support groups. "We've been very, very open about discussing our lives."
The support groups are two of the four support groups facilitated by Amelia Cottle, a former caregiver whose husband died two years ago. She also facilitates a women's support group and a mixed group.
"One of the things about our support groups is we have caregivers whose loved ones are in different stages of dementia," Cottle said. "The benefit is they can share their wisdom with other caregivers. Sharing wisdom is what makes a support group work and be effective."
Caregivers whose loved ones have died also visit the support groups to talk about life beyond caregiving, she said.
At the breakfast group, there is no talk of dementia, they just chat and have a meal, she said.
Tom and Alice Payne are great together, Cottle said.
"He is amazing," Cottle said of Tom Payne. "He is such a loving husband. I admire him so much."
The Paynes plan to spend Thanksgiving with their daughter and her husband in Texas.
Possibly complicating that and and their annual winter visit to their second home in California to visit friends and family is that Tom is waiting to be notified of a date when he will have surgery to replace a heart valve that had previously been replaced. It already has caused them to postpone travel to Israel.
Their son and daughter and a close family friend will stay with Alice when he undergoes surgery, he said. Neighbors and friends also have offered to help.
Alice Payne's acknowledgement of time spent in Wonderland indicates a level of awareness of her condition. At other times, it appeared to leave her.
"We try to be healthy all the time," she said at one point. "We still have our lives ahead of us."
Alice was diagnosed with Alzheimer's in 2011, but there were signs of it before then, Tom said. When they received the diagnosis, he said they talked.
"We discussed what it meant and she held me in her arms assuring me she would always be with me," Tom said.
At last month's Alzheimer's Walk, he said that though Alice was showing increased signs of the disease's progression, there were still moments that grip his heart. Outside the cathedral in Munster, Germany, in September a mother and her toddler son approached them.
"My Fifi bent down to the little one who rushed to her on his tip toes and hugged her neck," Tom said.
Alice has a soft spot for children and animals, he told the crowd.
"Such a sweet lady," he said.