October 22, 2021

Caregivers: ‘You are not alone’

Katie Keyser/living and leisure editor

Kathy Alvord, left, said Bill Hopkins’ weekly visit to her husband, David, was the highlight of his week. Hopkins is on the right.

Kathy Alvord says it is not worth it to contradict a person with dementia.

“What they are saying and thinking are the only way they know to how to say and think it,” said the
Cortland woman, a retired homemaker and piano teacher.

When Kathy’s husband, David, the former president and CEO of First National Bank of Cortland developed dementia, she took care of him at home for two years until his death at age 74. She learned
to think quickly, adapt to her husband’s needs and ask for help.

Dementia covers a wide range of specific medical conditions, including Alzheimer’s disease, according
to the Alzheimer’s Association, CNY Chapter. Caused by abnormal brain changes, dementia triggers a decline in thinking severe enough to impair daily life and independent function. Of the types of disorders, Alzheimer’s accounts for 60% to 80% of cases.

David Alvord’s form was called Lewy Body dementia, which represents 5% to 10% of cases.

Dementia is caused by damage to brain cells, interfering with the ability of brain cells to communicate with each other. When that communication is hindered, thinking, behavior and feelings are affected.

In New York, 410,000 people live with Alzheimer’s disease alone. And more than one million family and friends are caring for them, according to the Alzheimer’s Association.

Caregivers here are not alone, said Melissa Alvord, coordinator of the Caregivers Resource Center at
the county Area Agency on Aging in Cortland.

The agency offers a support group for family caregivers the fourth Thursday of the month through Zoom, said Melissa Alvord, who is not a direct relation of Kathy and David. It has caregiver specialists who do one-on-one consultations with family members to see what services can help them. Workshops are available. And respite care can give a caregiver time to go get a haircut or get groceries while a personal care aide comes to the house to watch a loved one.

Agency counseling are free of charge and grants fund respite care, Melissa Alvord said.

‘Is dad coming?’

“David started with it the first part of 2013, where I noticed something was really wrong and the doctor tried to diagnose it,” Kathy Alvord said in May. The disease came on fast. Her husband died Feb. 8, 2015.

“I kept him home the whole time. I lucked out … He rarely got anxious,” she said. “I learned you don’t contradict someone who has a mental deficiency.”

She learned to think on her feet and redirect her husband when she had to. Often, he’d think his deceased father was coming over. His dad used to come to their house every night for dinner after his wife died.

“Is dad coming? Is he late?” Alvord would ask his wife. “Where is he? … Where is dad? When is he
coming over?”

“No, he can’t make it tonight,” Kathy Alvord would say. “No, he has a board meeting tonight.”

“You answer as many times as they ask it,” she said. “If it gets too much for you to listen to them, you divert their attention to something,” she said. “The main thing that you can do is change the subject.”

Get the loved one on a new track. In Alvord’s case it was: watch TV, listen to music, go for a walk, go for a ride and get ice cream.

“Boy, he loved that,” she said of the ice cream ride. “That worked for as long as I could get him into the car.”

In the beginning of his illness, she gave her husband two choices of meals. “Then it got so he didn’t
want to eat anything. One time he said, ‘I want some, you know what it is that I like. What is it that I like?’”

She had made a little book with pictures of the meals he enjoyed. “Did you look through the book?”

The dish was there but he didn’t recognize it on that plate. “I said, ‘Give me a hint,’” Kathy said. He pointed me to the pan and said, ‘It’s the long stuff.’”

Spaghetti. That was it.

Kathy Alvord hired a man to stay with her husband at night so she could get some sleep in the last year and a half of David’s care. Her husband rarely slept. “He only catnapped.”

She got to the point where she asked the aide to give her husband a shower before he left in the morning. Her husband loved showers and she needed the caregiver’s help to balance David.

Alvord used a walker because he had problems balancing.

“He fell all the time. He got too heavy. I called the neighbors to help get him up on his chair.”

Over the course of his illness, he would eventually need a wheelchair.

‘A human being inside’

Bill Hopkins of Homer, a retired psychologist and church friend, came to the house weekly to visit David and give Kathy a break.

Katie Keyser/living and leisure editor

Bill Hopkins of Homer is a state-licensed psychologist who looks at people as people first, not framing them with whatever diagnosis they have.

“Bill helped me 100 percent,” Kathy said. “The kids didn’t live close by. One is in Vestal, one is in Georgia, one is in Maryland. They weren’t able to pop in. They worked as well.”

Hopkins facilitated the caregiver’s support group at Walden Place in Cortlandville for several years and created “An Informal Guide for Caregivers of Those with Alzheimer’s Disease,” based on interviews with caregivers. Kathy got the idea for the meal pictures from the book.

Resources for Caregivers

  • “Creating Moments of Joy,” by Jolene Brackey
  • “Breakfast Memories: A Dementia Love Story” by Kate Hanley
  • Cortland County Area Agency on Aging: www.Cortland-co.org/434/Area-Agency-on-Aging
  • Alzheimer’s Association: Alz.org
  • Caregiveraction.org
  • “An Informal Guide for Caregivers of Those with Alzheimer’s Disease,” by Bill Hopkins

Hopkins adored Alvord. The two laughed and joked. David missed him if Hopkins was on a trip, Kathy said.

When Hopkins came to the house, Kathy would run out to get groceries or do another chore.

“Sometimes, during a break, I would park in the Tops parking lot and cry. I had to release it,” she said.

Hopkins wants people to remember: “There’s a human being inside,” he said. “Find where the responses are.”

If it’s music, play it. If it’s books on tape, play it. “Treat the people as if they were your best friend,” he said.

“David Alvord was a proper man. He wore a three-piece suit. He was called ‘Mr. Alvord.’ I didn’t operate that way,” Hopkins said. “He was in my church. He didn’t want people to see him come in using a wheelchair. He would come early. At the end of the service, he was stuck.”

Hopkins would come up to him afterward and say, “Are you a friend of the bride or the groom?” Alvord: “The groom.” Hopkins would offer his arm. Alvord would take it and the pair would exit the building with grace.

Once time, Hopkins asked Alvord: “Does it bother you if people finish your sentences?”

He was shocked at the response from the proper man: “It pisses me off,” David Alvord said. “I used to be in charge of 100 employees!”

“Find out how people can maintain their dignity,” Hopkins said.

‘You can take me home now’

David Alvord had hallucinations. Imaginary children lived in the house, which Kathy would pretend to strap into the car when the Alvords went for ice cream.

Bill Hopkins wasn’t afraid of this. “Where are the monkeys now?” he’d ask.

“In the closet,” Alvord said.

“What are you going to do when you get more?”

“Put them in the closet.”

“What do you feed them?” Hopkins asked.

Alvord looked at him as if he was crazy. “Bananas, of course.”

“What if you get more?”

“You get more bananas,” Alvord told him.

Kathy Alvord said her husband always thought he lived somewhere else, especially at bed time.

“You can take me home now,” David Alvord would tell his wife. “No — I can’t remember where it is,” Kathy would say. “How about you sleep over with me and I will take you out in the morning.”

“You have to be quick on your thinking and say something that they are going to believe. You do what they are asking for if it’s at all possible,” she said. “I lucked out. David was agreeable for the most part.”