91: When Research Becomes a Passion

91: When Research Becomes a Passion

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

When Research Becomes a Passion

You can’t live a perfect day without doing something for someone who will never be able to repay you.

~John Wooden

I’ve been taking care of people with Alzheimer’s disease for many years as a clinical research coordinator, managing trials for people with dementia. The relationships I build as I work with these individuals and their families are rewarding, but also challenging. Many of the studies I coordinate are long, from many months to several years, and over time I get to know the families quite well. But there always comes a time when I have to say goodbye.

I always wonder, do I tell them goodbye several times on different days and hope they remember? Or do I tell them once for the last time and that is that?

Some may ask: Why say goodbye when the study participants won’t remember? Every time, my hope is that this may be the one time they do remember.

Then I realize that what I really care about is making sure they know I care about them. That is all that matters.

Bob and his wife were in one of my studies and had long, frequent visits to our study center. We had a common interest in skiing and soon found ourselves comparing Vermont mountains to Michigan mountains. We decided Vermont mountains were much better for skiing. They loved hearing about the progress of my niece, who was skiing for the first time for her high school team. We always had something to talk about during their visits.

As the study continued, I realized Bob was going downhill cognitively. It broke my heart. I had a hard time seeing such a previously vibrant man unable to speak in coherent sentences or recall my name. When the study came to a close, I prepared myself to say goodbye.

During Bob’s last appointment, I hugged him. As I said goodbye, he stopped, turned, and smiled at me. I wondered if he understood what I was saying. His wife and I both made a promise to keep in touch. I tried not to let the tears fall but it just couldn’t be helped.

As the year passed, Bob’s wife kept me up to date on how he was doing, and it wasn’t good. He continued to go downhill, slowly losing the ability to engage in some of his favorite activities. Through it all, Bob’s wife amazed me with her constant cheerfulness, courage, and wisdom. I encouraged her to take care of herself so she could be there for Bob.

All too quickly, Bob’s wife called to tell me he was now in a nursing facility. I know it was a difficult decision to make since she is so dedicated to her husband. Even with Bob no longer at home, she spends the greater part of each day with him and keeps in touch with me via e-mail. She said Bob smiles whenever she mentions my name. I know whenever I am in their area I have a place to visit, but it will also mean more goodbyes.

Will the goodbyes get easier as time passes? As I get older? Wiser? More experienced? Some people call Alzheimer’s disease the longest goodbye and now I know why. Bob’s story is not finished. There will be more goodbyes and none will be easy. Sometimes the tears are going to come and I can’t stop them. We researchers become very attached to our “loved ones” as well, and our research becomes our passion, as we fight this disease along with those living with the disease and their families.

~Joanne L. Lord, LPN, BA, CCRC

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