Patients aren't only ones who live with Alzheimer's; caregivers do, as well
Nov. 27, 2010 at 5:27 a.m.
Janelle Balentine affectionately strokes her husband's thigh, mumbling into the nothingness.
Incoherent conversations and actions are the predominate ways the 78-year-old woman communicates as she inches through her final stage of Alzheimer's disease.
Though no longer cognizant, the fair-skinned woman remains James Balentine's true love - his wife of 60 years.
"I feel, as long as she's here in body, I can make up for her in spirit," he said, softly smiling as he held her hands.
Seeing a spouse, sibling, child or family friend care for an Alzheimer's patient is not an uncommon sight.
November is set aside to raise awareness of the 5.3 million Alzheimer's sufferers and their 11 million caregivers in the U.S., according to a 2010 report by the Alzheimer's Association.
UP AND DOWN
Balentine sweet talks his wife as he helps her finish breakfast.
Feeding herself isn't the only ability she's lost through her eight-year progression of the disease.
She also needs assistance with daily functions such as sitting and lying down and changing clothes.
The inability to do things for herself came in May when she fell entering the tub and hit her head, he added.
In spite of it all, Balentine insists the two still share a life together, it's just that circumstances have changed.
"We had a full life until she got to where she couldn't make it anymore," he said.
The two have four children. They have traveled to several countries and have even traveled throughout most of the U.S. in their motor home, which still sits outside their living room window like a family dog waiting for a walk around the block.
Susan Burgess, a senior helper who gives support care to Mrs. Balentine twice a week, enjoys listening to the stories of all her clients, not just the Balentines.
"It's like a huge love story," she said about the Balentines.
Some days are so good that Mrs. Balentine will hold a small, but meaningful conversation with Burgess.
Days like those are the ones Burgess holds dear to her heart.
"It's very nice to see a glimpse of who they actually are," she said.
The help Burgess provides comes at a cost, but that is the least of Balentines' worries.
The Balentines' long-term insurance pays 80 percent of the senior helpers' cost, while Medicare pays in full the cost of hospice care, he said.
Between day and night, Mrs. Balentine's routine is a repetitive one.
She will sleep about 14 hours and take a two- to three-hour nap during the day.
She is greeted with breakfast each morning, followed by some television and a nap.
As Balentine talked about some of the trips the two have shared, he stopped abruptly to look at his wife.
"Sometimes she'll sit on the sofa and talk to herself," he said about the disconnected conversation she began having while he told his story.
Balentine is not surprised his wife developed Alzheimer's.
Her father, mother, sister and brother all died with Alzheimer's, he said.
This seems to be the signature life of an Alzheimer's patient and the caregiver, said Ginny Funk, the program and advocacy director for the San Antonio Alzheimer's Association chapter, which covers Victoria County.
"It's very common for caregivers to take care of loved ones for as long as they possibly can," she said.
In 2000, there were about 260,000 people with Alzheimer's. In 2010, the number is estimated to have increased to about 340,000, Funk said.
Alzheimer's statistics are not broken down by county because the statistics lose their validity, she said.
When an Alzheimer's patient trails off like Mrs. Balentine does, they are usually talking to people in their past, Funk said.
The disease does this because it destroys the short-term memory brain cells and then continues on the child development scale, but in reverse, she said.
By the end stages, an Alzheimer's patient can be like they were when they were a young child, she said.
Alzheimer's not only affects the patient, but also the caregiver.
Caregiver stress increases the risk of heart attack and stroke, she said.
"Because there is no cure, we feel people are progressing through educating themselves," she said.
Surprisingly, Balentine doesn't worry so much for his wife.
He worries more for himself, he said.
"I know she's going eventually," he said. "My well being worries me more than hers."
He's afraid if something happens to him, he won't be there for her.
Despite the growing worry, Balentine is thankful for his good health and has no plans of slowing down anytime soon.
He's confident that one day a cure will be found, but by then, their time will be up, he said.
"I'm going to do my best to keep her here," he said.