The Hardest Thing I’ve Ever Done – An Alzheimer’s Caregiver on His Toughest Choice

Ken Carter was just old enough to enlist in the Navy toward the end of World War II. At 18, he was among the soldiers who journeyed to small islands in the Pacific to root out the last Japanese soldiers who refused to surrender, receiving a bayonet wound to the stomach in the process.

Yet when Ken talks about the hardest things he’s ever done, he doesn’t reflect on his war wounds. He talks about the decision earlier this year to move his wife, Verna, who had been diagnosed with Alzheimer’s three years earlier, to a long-term care facility to give her the around-the-clock care she needed.

Ken and Verna Carter would go dancing seven nights a week for years after they married in 1973, staying out until after midnight before he would rise for work at 6 a.m. They worked together in a ceramics business on weekends and loved to travel.

Eventually, Verna’s arthritis and macular degeneration robbed them of those pleasures, and other signs of aging intruded on their life. After 40 years of marriage, Ken knew his wife well, so when changes in her short-term memory as well as her personality became too obvious to ignore, “I knew something was wrong,” says Ken. “She did too.” A visit to the doctor confirmed the Alzheimer’s diagnosis.

Just as serving in the Navy was a duty that Ken never questioned, he didn’t think twice about taking on the role of caretaker for his wife. Even though at age 92 she was confined to a wheelchair and nearly blind, Ken – then 86 – never considered any other option but to care for Verna at home.

For all but the last three months of his wife’s battle with Alzheimer’s, Ken watched over Verna in their one-bedroom apartment in Pueblo. He did get support from their daughter, Deborah, but her own family obligations kept her busy much of the time, so Ken soldiered on.

Ken’s closest companion during his final three years of caregiving was the Alzheimer’s Association office in Pueblo, where Regional Director Ann Carter – no relation – provided one-on-one counsel, enrolled Ken in classes and directed him to support groups she thought would help. She even met with Verna to give her reassurance that the Association would be useful for Ken.

“Ken worked to get educated on Alzheimer’s,” said Ann Carter. “Many people get overwhelmed when they hear the Alzheimer’s diagnosis, but Ken had a plan.”

Even though he was in his mid-80s himself, Ken was determined to provide Verna with the best of care. Some of it involved managing his schedule: cooking on weekends and freezing meals so that he’d have uninterrupted time to spend with Verna the rest of the week.

A bigger challenge was dealing with the personality changes, such as when his loving wife of four decades would tell him “I don’t like you anymore” and talk about divorcing him or suicide.

A valuable lesson

Perhaps the most valuable lesson that Ken learned from his time in the Alzheimer’s Association support groups was to stop trying to be right when he and Verna would disagree. The couple would have fierce arguments and the couple “went through hell” for a while, but finally Ken realized that “it wasn’t working to convince her” of the difference between reality and delusion. Since she was seeing life through a lens of dementia, they would never agree.

“I had never lied to her in my life, but I sure had to learn,” he said. Joining in her reality and giving up the need to be right came in very handy when Verna began showing signs of anxiety, which would sometimes manifest itself in hallucinations.

“Some nights, she thought there was a man wallpapering in our bedroom,” Ken said. “It wasn’t working to explain that there was no one there, so I’d just get up and holler at the guy to leave. One night, there were 13 people in our room…not really, but in her mind there were…” so Ken’s job was to get them out. Ken lost a lot of sleep in those periods, but he got the job done, and Verna took comfort from knowing that he was taking care of her.

Taking a special trip

As challenging as many days were, Ken is quick to say that the couple shared many special moments even late into her diagnosis. He recalls her request in their last year together to pay a visit to his hometown in Kansas – an 11-hour drive away – to visit the cemetery where Ken’s parents and other family members were buried. The last time the couple had been there was 43 years earlier, the year they were married. But it was important to Verna, so Ken was determined to make it happen.

“I told her that if we were going to make the trip, we would need to build in a lot of rest stops along the way, and she agreed,” Ken said. So the 88-year-old World War II veteran and his blind, wheelchair-bound 94-year-old wife, took their last vacation together – against the advice of their daughter – and had a great time. “She said she wanted to go, and I told Verna I would take her,” he said emphatically.

Not long before his wife passed away on April 27, 2016, Ken realized that he could no longer care for her. Her habit of getting out of bed in the middle of the night led to frequent falls. And one hair-raising experience while Ken was in the bathroom saw Verna escape from their apartment, ride the elevator to the ground floor and blindly maneuver her wheelchair away from their building before her husband could find her.

Care for the caregiver

Those experiences, and the fact that the toll on Ken was reducing him to an unhealthy weight he had not seen since high school, helped him realize that it would be better for both him and his wife if she could get professional care.

“You (the caregiver) must take care of yourself,” Ken said. “Taking care of her around the clock got me worn down. When that happens, you can no longer care for the person with Alzheimer’s.”

Ken’s devotion to Verna didn’t lessen when she moved into the Memory Care Unit. To reassure her that life had not changed, he’d join her at 6 a.m. and stay until the evening every day. They would listen to some of their favorite dancing tunes and talk about her early childhood memories. And, to the end, while her recent memories faded, she always recognized Ken and looked forward to his visits.

Sharing his experience

ken-carter-1-pueblo-ann-carterVerna has been gone for six months, but Ken remains committed to the Alzheimer’s Association and his friend, Ann Carter. He still comes to support groups and, when asked, offers his perspective to other caregivers on the lessons he learned in his years of caring for his wife.

“Some people, when a loved one passes away, they need to close the book and move on,” said Ann. “Ken asked if he could still come to our meetings and say ‘here’s what worked for me.’ Even though he experienced his share of tough times, he always puts as much of a positive spin on things as possible. He emphasizes that caregivers and persons with dementia can still have good times and good days.”

And Ken is a valuable role model for other caregivers. He is a survivor.

“When Ken’s here, other caregivers hear how he learned to cope and see that he made it,” said Ann. “He survived, and he will talk and laugh about some of the fun times he had with Verna. It was never all doom and gloom for Ken.”

To learn more about the Alzheimer’s Association of Colorado, go to www.alz.org/co or call the Association’s 24-hour Helpline at 800-272-3900.

 

3 thoughts on “The Hardest Thing I’ve Ever Done – An Alzheimer’s Caregiver on His Toughest Choice

  1. This story is a true inspiration , I cared for my father with Alzeimers till the end and it just about killed me. You deserve a star of love and devotion to your wife. She was lucky to have such a great husband . You are an inspiration of true love, devotion and dedication , you are a true example of till death do you part. You Are my inspiration . Thanks for helping all of us that walk with you as caregiving for an Alzeimers family member.

  2. Hi Ann how are you? It’s been awhile since my husband Dennis and I have attended the Alzheimer group meeting. And also I have once attended the Caregiver Support group meeting.
    I’ve read Ken story and I can relate to him. I had mentioned before in the Caregiver Support meeting about my husband’s condition and signs of becoming violent. Dennis has both PTSD (he’s 100% disable veteran from the Navy) and Dementia (diagnosed in June 2011). We had domestic violence before when we were living in San Diego.
    In June, his primary care doctor at the VA talked to me alone suggesting to put him in a nursing facility due his uncontrollable high sugar. I’ve told Dennis and he refused. In August, we’re able to go to the Philippines for 18 days. He was lost in Taipei airport (stop over going to the Philippines) and Denver airport (coming back). He has no recollections of anything or anyone regarding that trip. In October, after our late lunch at Ruby Tuesday and shopping at Wal-Mart, his mood change that led to strangling me so I’ve called 911.
    To shorten my story, he is now in Rocky Canyon nursing home but hopefully will move him to VA Florence next month.
    Thank you very much for your help Miss Carter

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