One family’s experience with Alzheimer’sEvery midnight, Paul Frost goes for a walk with his dog. These nightly walks in his Hermantown neighborhood are a gift to himself: a time for reflection, calm and quiet companionship with Oxford the Shih Tzu.
By: Melanie Lynch, For the Budgeteer News
Every midnight, Paul Frost goes for a walk with his dog. These nightly walks in his Hermantown neighborhood are a gift to himself: a time for reflection, calm and quiet companionship with Oxford the Shih Tzu.
Paul’s mornings also begin with Oxford: everyday at 8 a.m. the two of them have a morning walk. When he gets back home, however, Paul starts the daily tasks that are crucial to his wife’s well-being.
Gini Frost has Alzheimer’s disease, and her husband of 62 years is her caregiver.
The Frosts have been selected by the local planning committee of the Alzheimer’s Association of Minnesota-North Dakota to be the honorary family for the Walk to End Alzheimer’s.
Walk to End Alzheimer’s Duluth Area Walk
This year’s Duluth-area walk is scheduled for 10 a.m. Saturday, Sept. 28. It starts at the Duluth Entertainment and Convention Center at Paulucci Hall. Walkers may register that day at 9 a.m. at the DECC, or online at Alz.org/walk.
More than 5 million Americans have Alzheimer’s disease, according to the Alzheimer’s Association. This includes 13 percent of those 65 and older, and nearly 50 percent of people who are 85 and older. This is a disease of the brain that causes problems with memory, behavior and the ability to reason.
“[Gini] was diagnosed probably in 2005, 2006. But the disease is such that you really don’t know when it started,” Paul says. At the time Gini was diagnosed, the two of them were living in Ashland, Ore.; they had moved there from Grand Rapids in 1998 to live by the mountains of the West Coast. Once they had settled into their home in Ashland, Paul says, “That’s when Alzheimer’s came into the picture.”
The Frosts’ daughter, Linda, recalls visiting her parents in Oregon and seeing changes in Gini.
“I visited twice a year and would make notes upon my return home about changes I had noticed in Mom’s cognitive abilities … after repeated attempts for about a year to get my dad to have her checked out, he did take her in and she was diagnosed with Alzheimer’s.”
When he looks back upon his initial reaction to her diagnosis, Paul mentions his lack of knowledge about the disease itself.
“I knew very little about it, and it didn’t seem to be too much of a problem at that time. I was concerned, but I hadn’t really learned too much about Alzheimer’s until after she was diagnosed.”
Linda’s initial response was to wonder who else in the family might develop the disease.
“One of the first things I thought of was wondering if this disease was going down the maternal side of the family, as Mom’s mother no doubt had Alzheimer’s, although not diagnosed as such back then. Now my Mom … was I next, and how long did I have? How about my daughter and her daughters?”
As his wife’s sole caregiver in Ashland, Paul began to think about moving closer to his family. “It’s hard to be a 100-percent caregiver, having to do everything. Cooking, dressing her, bathing her … it’s a 36-hour-a-day job. I had no family, which I did here in Duluth, and I needed help, so we moved [to the Duluth area] two years ago.”
Surrounded by his family in the Northland, Paul was finally able to get support for his wife and himself.
“I make it a priority to provide respite for my dad, who has finally begun to understand the importance of taking a break,” Linda explains. “We now have Mom enrolled in adult day care services for two half-days a week.”
While Gini is involved with that program’s activities, Paul uses the time for shopping. “I didn’t think she’d accept the day care [center]. I was pleasantly surprised to find that she really enjoys it … the day care center is the best thing we’ve done.”
Despite Gini’s illness, the family makes a point of continuing to do fun things together, including traveling; Paul and Gini have traveled to 84 countries throughout their marriage. They don’t do the same extensive traveling that they used to, Paul says, but they go on cruises, have taken Amtrak trips to the West Coast, and have spent time in cabins as well.
Linda accompanies her parents on these trips.
“During these trips I am able to take over the day-to-day [caregiving] duties to give Dad an additional break.” The Frosts get together often with their daughter, grandchildren and great-grandchildren. The adult members of Paul’s family aren’t the only ones who are supportive. “Even the little ones, I think, understand Gini’s condition. Children have a way of adapting.”
Nevertheless, their social life has suffered.
“We’ve always been strong churchgoers, [but] for the past four or five months we haven’t gone to church.” Paul explains that that is due in part to the increased difficulty in helping Gini get ready but also that “the people [at the church] don’t know how to react to someone with Alzheimer’s. They don’t know what to say … people will either talk to her like a baby, or they don’t talk at all. We’d sit on the pew and no one would sit next to her. The church would be packed, but it would just be her and me sitting in our pew.”
Paul has shared his experiences as a caregiver for a loved one with Alzheimer’s disease before; in February he appeared on the local program on public television “Speak Your Mind,” where he gave his insights into the challenges of being a caregiver.
What led him to speak publicly was “the awareness that my wife would not be aware that I was talking about her … up until that time, I was concerned about her being embarrassed, and then I realized it was more important to share my limited knowledge with anybody else who might be going through the same thing.”
Linda, too, sees the importance of caregivers sharing their experiences with others. She said Paul’s appearance on television “gave him a voice … he was able to finally accept the disease, and not try to hide from it any longer.” Linda also emphasized the importance of caregivers reaching out for assistance, advising them to contact their local Alzheimer’s organization for information and support.
It can be impossible to predict what people with Alzheimer’s will perceive from moment to moment. Their ability to adapt has been vital to Paul and Linda in coping with Gini’s illness.
“I stopped expecting her to know me … and found that by meeting her wherever she happened to be that day was where I needed to be,” Linda says. “I know that she accepts me as a ‘safe’ person and am thankful for that.”
Melanie Lynch is a committee member of the Walk to End Alzheimer’s Duluth Area Walk.