Finding support as a caregiver: Why I Walk

By: Bill Lukov

In 1996, my wife, Gwen, started asking the same question three to four times in a short period of time. Since she was seeing a neurologist for seizures, I decided to ask about it. The neurologist suggested getting a neuropsych exam. After the exam, the doctor said, “If she wasn’t so young (age 56), I would think it was Alzheimer’s.” It turned out it was. 

Gwen and me on our wedding day

She stopped driving because she was afraid she was going to hurt someone. She was still able to work, but couldn’t handle the new computer system, so the company let her take an easier office job. Her daughter lived close by and worked at the same company, so they rode to work together and got to see each other daily. Unfortunately, after a couple of years, she couldn’t do the easier job and had to take long-term disability.

At this same time, my mother was diagnosed with Alzheimer’s. She lived alone, and since I lived only one mile away, I became her caregiver too. Luckily both my mother and wife were able to function alone at this time as I was working full time. But after a while, this was wearing on me, and so I contacted the Alzheimer’s Association.

The Association recommended that I go to a younger-onset Alzheimer’s support group. After the first meeting, it was like a weight was lifted off my shoulders. Here was a group of people that were going through the same sorts of things that I was going through and it was a great source of information. The group met just a few minutes from where Gwen’s sister lived, so it was a win/win situation. Gwen and her sister got along well and had time to visit while I attended the group.

At one point, Gwen asked where her support group was. It turned out there was a group for people with dementia and she was able to join. Later, a second younger-onset Alzheimer’s support group formed that met at the Alzheimer’s Association office. It was about five minutes from where we lived, so I joined that group too.

My brother’s family eventually moved in with my mom to help care for her. 

Gwen, myself and my mother.

Gwen’s disease progress was slow, and I was still able to leave her home alone while I went to work. Between the support groups and the Alzheimer’s Association staff, they became practically family. They would occasionally check up on us, even coming out to the house a couple of times to see Gwen. In 2002, we went to our first Walk to End Alzheimer’s and Gwen was impressed by all the people that came out to walk. I have walked ever since.

Then in 2005, Gwen started having seizures again. The neurologist checked her into the hospital to change her seizure medicine. She walked in, able to feed herself, dress herself, communicate, go to the bathroom etc. In the five days she was in the hospital, she lost all of that. She became incontinent, couldn’t walk and couldn’t talk; she lost just about everything. At that point I had to find an adult family home for her.

I found a great one. They were very loving, caring and attentive. Since Gwen could not move, we got her an adjustable wheelchair and changed her position often. She never got a bedsore or a bruise. 

Gwen and me

The one thing Gwen could do was eat if you fed her. Her favorites were red wine and chocolate. I kept a bottle of wine in her room and would give her a small glass from time to time. One time when it was near the end of a bottle, I gave her a sip, and she made an awful face. I tasted the wine and it had gone bad. Even in the late stages of Alzheimer’s, she could still tell bad wine.

In February of 2008, Gwen stopped swallowing and passed away a few days later. We had a celebration of life, with wine and chocolate, and many members of the support group and Association staff were there. My mom passed away just a few months later in April 2008.

In 2010, the facilitators of my first Alzheimer’s support group left, and I volunteered to take over that duty and still am doing it. I feel a great debt to the Alzheimer’s Association and will do anything I can to help people going through what I did. I could not have done it without the help of family and friends, one of those being the Alzheimer’s Association.

Bill participates in the North Sound Walk to End Alzheimer’s. Held annually in more than 600 communities nationwide, the Alzheimer’s Association Walk to End Alzheimer’s® is the world’s largest fundraiser for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease. Find a Walk near you at

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