The Journey of Dementia
I was his wife again
Betty King recalls the day she helped move her husband Gene to Valley VNA in 2014. “When we finished the move, I felt a powerful sense of physical and emotional relief. After just a couple of days, Gene was seeing me as his wife again, not his caregiver.”
Gene King started to recognize changes in his cognition 20 years earlier while working as a Kimberly Clark IT executive in London, England. After having watched his mother experience relatively early onset Alzheimer’s, he and Betty talked about how and when he would retire. More importantly, they agreed on their philosophy for how to age gracefully together: embrace the coming changes as a new stage of life, genuinely love and advocate for one another, and do not resist the inevitable at the cost of making things stressful for the other partner or the couple’s children.
Gene and Betty eventually retired to North Carolina where they embraced a life of golf, canasta, travel, and volunteer work for 14 years. Gene’s cognitive decline continued, albeit inconsistently. The couple returned to Wisconsin in 2012 to be near two of their children and reunite with their wide circle of friends from Gene’s earlier stint at Kimberly Clark in Neenah. “We had lived in Neenah for almost 20 years, and we started talking about a good place for Gene to live when the time came. My daughter Kelley reminded us that Valley VNA was here,” said Betty.
Those early talks and plans helped both Gene and Betty make necessary transitions without a lot of upset. Gene remained polite, cheerful, and helpful—always the consummate gentleman. “He stopped driving on his own, without argument,” Betty said. “Except he always drove to church on Sunday mornings, but never back home. I always drove home!”
While still living together in their apartment, Betty taped a sign to the door to prevent his wandering off. “Stay Home,” it said, and one day when their daughter Kelley came to take her dad out to lunch, he refused to leave until he got clearance from Betty over the phone. “He relied on Mom to guide him and help him make choices. He trusted her to be in charge of what happened, and that was very calming for him,” said Kelley. “But he did these things to keep us happy, too. That was part of the plan he and mom had.” Gene would eventually move into assisted living at Valley VNA for 18 months and then move into the memory care unit for another 18 months.
Gene King passed away in September 2017 at age 81, and Betty and Kelley remain eager to help other families who face similar challenges with aging parents and partners. Betty is very active in helping her peers discover ways to care for themselves and their aging spouses. “It’s much more helpful to ask about you, the caregiver, than to only ask about how the spouse is doing. When you care for the caregiver, the rest tends to take care of itself,” she said.
Words of Wisdom
Here are a few nuggets of wisdom Betty and Kelley learned while accompanying Gene through Alzheimer’s:
- It is much more rewarding to engage in a three-way conversation with a person who has Alzheimer’s instead of one-on-one. The affected person can join or recede from conversation without a lot of pressure to keep up with the discussion or formulate responses on the spot. They also suggest not asking a lot of direct questions because it can cause anxiety.
- Condition yourself to accept change, because it will happen whether you want it or not. Keep a sense of humor and laugh with one another about the quirky things that happen!
- Live in the moment. Go where your person goes, whether it’s down memory lane or a strange story about what happened at lunch today. Correcting or arguing only causes both of you to get upset, and you simply will not “win.” Stop being mad and accept your new reality.
- After Gene’s move, Betty was able to get rest and peace so she could remain healthy and happy.
- The women suggest finding one or two good friends who want to listen to how you are doing as a caregiver without judgment or uninvited advice. Good listeners will help you parse what is happening in your life and how to best face your next steps.
- Moving into Valley VNA offered Gene more social interaction and programs that challenged him to remain engaged. He made new friends enjoyed his time living there.
- While still living at home, Gene and his daughter Kelley had regular weekly dates at Lyrics and Laughter, a music enrichment program at Valley VNA for people with dementia and Alzheimer’s disease and their caregivers. “It was the highlight of my week to spend that time with Dad,” she said. Later Betty attended the program with Gene for nearly the entire time he lived at Valley VNA. “It is important to find activities you both enjoy. Also, it is good to spend time with others at similar points in their lives.”
- There are gifts hidden in the midst of a big move. After Gene moved to Valley VNA, Betty reclaimed her role as his beloved because she no longer had to be constantly vigilant about his daily personal care and safety. Gene’s eyes lit up whenever he heard her voice, he looked forward to sharing affection every day, and he authentically expressed his love for her. Kelly noticed, “Here we are, in this horrible situation where we all know we are losing him to Alzheimer’s and yet here is this gift, this second chance at their love.”
The mission of Valley VNA is to provide quality choices for senior living. Every day we are honored to care for our residents and clients in a way that helps their spouses and families live safer, healthier, and more peaceful lives, too.
