A Crazy Disease
Jan Beste shares her journey as a caregiver to husband with Alzheimer’s
by BRYAN ZOLLMAN
Looking back on the last 10 years of her husband’s life, Jan Beste can see the signs more clearly.
“When you look back you see it better than when you are actually going through it,” she said. “It’s a crazy disease.”
She is speaking about Alzheimer’s, a degenerative brain disease that affects more than 5.4 million Americans. According to the Alzheimer’s Association, more than 5.2 million of Alzheimer’s sufferers are over age 65 and 200,000 are under age 65. Bill Beste was one who began showing symptoms when he turned 60.
An insurance salesman, Bill Beste could talk his way through anything. That’s why it became so difficult for Jan to recognize the signs as the onset of dementia.
“I think he had it at least 10 years,” she said. “But no two people with Alzheimer’s are the same, which makes it so hard to recognize.”
She started noticing changes in his driving habits, and then he began to forget how to do routine things. She said he would often repeat his questions and as the disease progressed, had trouble reading the newspaper.
“By the third sentence of a story he had to stop because he had already forgotten what the first sentence was about,” she said.
Soon, he no longer knew how to take a shower. But some things stuck with him. He played piano by ear and continued to play until his death at age 69. He also loved playing cards and after he was in the nursing home he and Jan would play gin rummy every day.
He died in 2006 due to complications from bladder cancer, not the Alzheimer’s itself, although Alzheimer’s can and does cause death. It is currently the sixth-leading cause of death amongst Americans.
Due to the increase in life expectancy, more people are getting Alzheimer’s with an estimated one diagnosis every 68 seconds. By mid-century, experts believe a person will be diagnosed with Alzheimer’s every 33 seconds.
And for everyone who suffers from the disease, so does their spouse or loved one who is in charge of being their caregiver. For Jan Beste, it simply became too much and she was forced to put Bill in a nursing home in Melrose.
“It’s not an easy job,” she said. “My son would say that towards the end he didn’t know who was going to go first, me or Bill.”
Beste said caring for someone with Alzheimer’s is a 24-hour, seven-day-a-week job.
“You always think you are doing okay,” she said. “But you always sleep with one ear and one eye open because you never know what they are going to do.”
Beste joined an Alzheimer’s support group in Melrose, which helped her understand the disease and, more importantly, help her realize that she was not alone in her struggles.
“As a caregiver you have no peace,” she said. “It’s like having something stuck to you that you can’t get away from. One minute they seem normal and the next minute you realize they are gone. You say goodbye over and over again because you just never know.”
She is now involved in an Alzheimer’s support group in Sauk Centre facilitated by Alternative Senior Care. Jan said she doesn’t go to get support any more, she goes there to offer support.
“You keep coming back because you hope you can help somebody else,” she said.
Alternative Senior Care caregivers have seen their fair share of clients who suffer from memory loss. That is why they have teamed with Fairway Pines Assisted Living to host “Journey Through Memory Loss,” a seminar to be held at Fairway Pines on May 1 with guest speaker Lynda J. Olander Converse. She is the author of the book His Name Was Merle; Our Journey Through Alzheimer’s disease.
“Memory loss obviously affects an awful lot of people in our community,” said Mike Karasch, co-owner of Alternative Senior Care. “Whether it is somebody in their family or somebody they know, memory loss touches nearly everybody.”
Converse will give a snapshot of the journey from diagnosis to hospitalization and beyond in her book. Her presentation will include her experiences as an adult child and caregiver to a parent with Alzheimer’s disease.
“We want to provide this as a community service to get the word out and help people have a better understanding of what the disease is and to understand the plight of the caregivers,” said Karasch.
Not many people understand it better than Jan Beste.
“If you live long enough with it, eventually everything goes,” she said. “You lose your ability to walk or talk or even chew your food.”
Statistics are getting worse, which means people like Karasch, Converse and Beste hope more awareness is brought to the subject and one day a cure or better treatments are discovered.
“It’s a tough disease to figure out,” said Beste. “It’s a disease that will cripple this country if we don’t find a cure.”