We were on vacation in Punta Cana in the Dominican Republic. I was reading Still Alice out on the balcony of our hotel – a novel about a woman who suffers early-onset Alzheimer’s disease.
We had gone on a tour the day before. Bob recognized a New York accent among two couples talking. He went up to them and introduced himself and had a nice visit. A half hour later, we had boarded our separate buses and got off at the next stop. He again heard them talking and went up and introduced himself again. He didn’t remember talking to them an hour before.
When we got back to the hotel, I contacted his doctor and requested a formal evaluation. I already suspected Bob had some memory issues from his bleeding stroke. I was working part time and left him notes on the microwave on how long to warm up his pancakes and occasionally called him to check on his insulin amounts and make sure he took it. He was still driving, but had gotten lost when trying to get home from the store.
They got us in for an evaluation when we returned from vacation. Bob spent the good part of two days there – testing his memory, getting background and history – some with me there and much without me. Finally, we went back for her report, and it was all I could do not to cry in front of Bob when she told us he had mild to severe Alzheimer’s and gave us the name of a neurologist.
I felt like I had fallen down a dark rabbit’s hole where there was no light. My father had passed from cancer and my sisters and I were trying to take care of Mom, who moved in and out of assisted living, suffering some early dementia signs herself.
“Get a plan” is what I was told. I didn’t know exactly what that meant. We did go see an elder attorney and redid our wills, power of attorney and medical directives. Bob was able to participate and sign his name.
I went through stages of loss: denial, anger, bargaining, depression. First, I turned to the Internet and joined some support groups. Being a caregiver for a spouse is totally different than that of a parent. Some of the stories scared me. I had no idea how long this disease could last and how bad it could become. This was our future?
I called my doctor crying and got on anti-depressants. About a year later, I called and asked to be taken off them.
I had hit the acceptance stage. I needed to fully feel my life as it was. I took some courses online about Alzheimer’s. I needed to educate myself and deal in facts, not wallow in emotion. I needed to understand what was happening in Bob’s world.
I still felt taken aback and sad sometimes. I mourned the loss of the man I married, but I found I didn’t lose the real man.
I started telling him what a great person he was. How good he was with people. How funny, how kind.
With my husband’s Alzheimer’s diagnosis, I lost some aspects and capabilities he had, but not the real Bob.
Jill Ballard was a caregiver for her late husband Bob, who was diagnosed with Alzheimer’s in 2010 and passed away in October of 2015. Jill was named Caregiver of the Year by AARP in 2015. She lives in Cannon Falls, a town of about 4,000 people in southeast Minnesota.