Life with dementia: ‘You’re always on call’ says wife and caregiver


Whitey, 91, resides in the Alzheimer’s unit at Hillsboro Community Medical Center and is now in the third of three stages of the disease: early, middle and late.

“It’s not the instant killer,” Betty said. “It’s just a horrible disease.”

A second marriage for both, Betty said she has known Whitey since she was 16 and dating her first husband.

“I have known him all these years,” she said. “We never, ever thought of each other as being married.”

Early stage

Despite that, the two found they had much in common and decided to marry. But, just a few years into their new life together, Betty began noticing subtle changes in Whitey.

“My first recollection was finding notes he would write (to remind himself of important dates),” Betty said.

Whitey would hide the notes from her out of embarrassment, but she would occasionally find them.

Betty also noticed that he could no longer balance the checkbook, wouldn’t make decisions and wouldn’t drive.

“He never wanted to make any decisions,” Betty said. “He’s a sweet man to start with, but (I would choose) something I know he didn’t like particularly—I would kind of test him to see—and he said, ‘Whatever you want to do, you plan it.’”

Despite being a Wichita native, Whitey no longer drove because he couldn’t remember the familiar streets, Betty recalled.

“He always said I was the better driver and knew where I was going,” she said. “I noticed he forgot where streets were in Wichita.”

Betty estimated the early stage of Alzheimer’s lasted around six years. She said Whitey has “really been into” the disease for the past 10 years.

Middle stage

As Whitey entered the middle stage, Betty said she began noticing that he couldn’t remember names of friends and family.

“He never wanted anybody around, because he couldn’t remember their names,” Betty said. “It embarrassed him.”

Whitey also grew violent and aggressive, particularly around those he viewed as strangers.

“My brother came and stayed with us for about three weeks,” Betty said, “and (Whitey) didn’t have any idea who (my brother) was and he was very apprehensive and aggressive at that point.”

At one point Whitey also chased his step-daughter and son-in-law off his property while Betty was at her mother’s funeral.

“He didn’t know them,” Betty said. “He had no idea who they were.”

She also recalled that while she was at her mother’s funeral, Whitey believed she had left him.

“(Alzheimer’s patients) decide things in their mind and there was never any reason for me to leave him,” she said. “He just went ballistic. I mean, he knocked out all the pipes in the basement.

“You wouldn’t believe the strength (Alzheimer’s patients) have through that stage,” she said. “They’ll lash out at anything, although he never, ever hit me.”

After that incident, Betty kept Whitey at home for another six months. A doctor finally encouraged her to get Whitey diagnosed and put into a nursing home.

“The doctor told me I had kept him two years longer than most people do,” she said.

Late stage

For the past six years, Whitey has lived in three different nursing homes. The first two situations Betty described as “disastrous.” She said the units were too large with too much activity, causing anxiety and aggression in Whitey.

“There was too much confusion,” she said. “(Alzheimer’s patients) do better in this type of situation (at HCMC Alzheimer’s unit). I think he’s done wonderful.

“He quieted down,” she said. “It took a little bit, but he quieted down.”

Whitey has lived in Hillsboro for three years, and Betty comes from Newton to visit twice a week. Although Whitey no longer knows Betty, he still takes comfort in the familiarity of her voice and touch.

“This morning when I walked in, he was in the rocker and he had kind of jumped like you do when you’re sleeping, and the girl asked him if he was OK,” Betty said. “As I walked up to him I said, ‘Sure, he’s OK, he’s going to open his eyes and look at me this morning,’ and just like that he did. He reached over wanting to hug me—leaned over to my shoulder.”

Even though Betty is no longer a caregiver 24 hours a day, she said her life still revolves around the disease. She said every time the phone rings, she wonders if it is someone from HCMC.

“You’re always on call,” she said. “I feel comfortable with him being (at HCMC) because I know they’re taking very good care of him, and that has eased me an awful lot. But it’s still there. It’s still there.”

She said the disease not only makes life lonely for the patient, it has the same effect on the caregiver.

“I think you lose contact with the outside world,” she said. “You’re in your own little world.”

She also said you lose friends.

“They mean well,” she said. “If they see you they may ask how he’s doing, and I’m always glad for them to mention him. But I can count on my hand my close (friends). The people here in the home are my friends now. I’ve made family by knowing the help that is here.

“You change. You just change. And your family, I don’t think they realize a lot of times either the hours you spend on your own, and you’re dwelling on (the disease).”

Betty said it’s important for caregivers to keep active in the outside world. She said she makes herself go shopping “for nothing” just to get out of the house.

“You live with it,” she said. “You’re responsible to it. And if you love that person, you’re going to be responsible for them.

“Live life, but keep active in the outside world too,” she added. “There is no hope for a cure. We know that. And you have to accept it as that and try to go on with your life.”


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