Lloyd's Story

There is love in Alzheimer's...

In 1996 my partner, Karen, was diagnosed with Alzheimer's Disease. She was 49 and had been a successful realestate agent.

Karen's father had died with Alzheimer's when he was the same age as Karen many years earlier, at a time when the disease was not well understood and caring was more likely to be "lock them up".

When the diagnosis came Karen asked me to leave. She said she did not wish me to go through what her mother had to, some 30 years before.

I assured her that I would not leave but that I would stay and care for her with whatever was necessary. We had spent the five years prior to the diagnosis renovating the house we were purchasing together. We were a team.

At age 55 I retired from my full-time position as Vice President of Operations at the Michener Institute for Applied Health Sciences in Toronto. I did continue to work there on contract three days a week when I was able to get support for Karen from CCAC. Karen had been a very active person. She ran 3 km five days a week and we competed on the Racquetball court. In addition we biked in the summer and in the winter we skied. To slow the progression of Alzheimer's Karen had several requests: she wanted roller blades, a new bike and she wanted to train to run a Marathon.

We both learned to roller blade. What fun.

We went for bike rides. On one of these rides Karen crashed into a curb. But she continued. Karen knew she had Alzheimer's. She did not hide from that. We planned an extended camping vacation trip to BC so she could visit the many friends she had across the country. Karen wanted to tell them how things were changing in her life. In Edmonton I purchased a bracelet for Karen on which were carved her name and my phone number for the possible event that we might get separated. Fortunately it was not needed.

I stood in line with Karen at washroom breaks explaining to other women in line that I had to assist my "wife" in the washroom. If that bothered them they should not come in. Only one person walked away.

In Stanley Park Karen ran the 10 km loop around the park. I stayed beside her on my bicycle. The trip to BC was successful and uneventful.

On a trip to Ottawa we skated on the Rideau Canal. Knowing that we had to skate back the same distance from our starting point I commented to Karen that she should let me know when she was half tired.

At some point as we are skating away she looked at me with a sad face and said "I am pooped". When she saw the look on my face she smiled and said "I'm only kidding." We had a great day skating 12 km.

I didn't forget about the Marathon. I knew nothing about running much less marathon training. So I went to the internet where I found a training schedule and nutrition and hydration information. With the addition of running apparel and proper running shoes Karen was ready to go.

Training included racing 5 and 10 km races. I always had to get permission to go along with Karen during the race either on my roller blades or my bicycle. I remember one such ocassion when a young gentleman walked up to Karen after the race and thanked her for encouraging him to finish the race. There were many other races. Each one is a story. Karen's training progressed well, yet while Karen won the journey Alzheimer's won the race. Karen's training had to be curtailed at the level of a half marathon.

Five years after Karen's passing I took up long distance running. In 2007 I completed Karen's Marathon.

Karen's inspiration is still with me. In May of this year I will again race the Toronto Goodlife Marathon. Though I plan to qualify for the Boston Marathon, it will be the journey that I will remember, not the end result.

I remember Karen's annual Christmas letter. Traditionally she sent her Christmas letter to near a hundred friends and relatives. The progression of these letters over the next five years tells a story of Alzheimer's Disease. After getting the diagnosis Karen used the letter to inform others of her condition. Early on Karen wrote the letter and mailed it. Later Karen told me her letter and I wrote it down for her and we mailed it together. And again later I suggested to Karen what the letter should say and she would smile her approval. I would write it and mail it. At the end it was a letter that I composed and wrote and mailed, revealing the final story.

I know Alzheimer's Disease is a dread disease. Given that, I know my time with Karen was special. Those last 5 years were our best times together. We communicated with smiles. 

Yes! There is love in Alzheimer's.

Story Submitted by Lloyd Schneider

Last Updated: 11/08/2017