Is it better to know or not to know?

I am currently reading (that is, listening) to The Inheritance by Niki Kapsambelis. It is a fascinating account of two true stories. One is about the efforts of medical researchers to understand Alzheimer’s and uncover a way to prevent and/or cure it. The other is about a family that has experienced the disease over several generations. The part I read this morning deals with the family members’ opportunity to be tested for the gene that is the carrier for the disease. Most of the family chose to know. Others did not. What do you think you would do?

This question led to my reflecting on our decision to find out if Kate’s symptoms were just part of normal aging or if she had Alzheimer’s. Too much time has passed for me to recall clearly when we started asking ourselves that question or exactly how each of us felt about it. I do remember that Kate wanted to know. I also recall that I didn’t have the same desire. Knowing how little there is that one can do to change the ultimate outcome of the disease, I believed we could just go on living our lives as fully as possible.

I recall that by the time we initiated the process for her to be tested, we were pretty sure, but not confident, that she had dementia. Kate had been the first to notice the symptoms five or six years before. I began to notice more after she had mentioned her fear that she might have Alzheimer’s. We seem to have reached the decision to find out at the same time.

When her doctor gave us the results of her PET scan, Kate said she was relieved to know. I remember that she accepted the diagnosis quite calmly. I can’t say the same for me. Immediately, I felt a deep sense of sadness. I choked up. The doctor handed me a tissue to wipe the tears. You might think that if we were already prepared for the answer the doctor delivered to us, I would have responded more like Kate. In retrospect, I think we both responded in ways that are consistent with our personalities. I remember our daughter’s having a bicycle accident when she was twelve or thirteen. As we were with her in the emergency room, it was Kate who was as steady as a rock. I don’t know that I showed it on the outside, but I was a wreck on the inside.

The impact of the news wasn’t limited to that moment. Kate remained calm, but the news did take its toll on her for a short period of time after that. We talked talked a good bit in the weeks that followed. We talked about the implications and how we should respond. When should we tell our children? Our extended family? Our friends?

It wasn’t long until we began to realize that there really was no impact on our day-to-day lives. We began to feel the way we did before the diagnosis, but, for me, the impact has remained as a central part of my life. I made an abrupt change in the way I responded to her forgetfulness and other symptoms of her illness. Now I understood why she was doing so many of the things she did. I became a more understanding husband.

I tend to be a planner and quickly went into planning mode. As her caregiver, I haven’t stopped yet. The plans are always changing as necessity demands. I believe that getting the diagnosis was the right thing for us. Knowing was the catalyst for our taking advantage of our time together. We thought we were already doing that, but the diagnosis caused us to shift into high gear. That is how we plan to live as long as we are able.