Lost and Found

My husband and I were well-published research scientists in careers spanning several decades. We both headed research studies related to substance use, with my work primarily focused on HIV/AIDS, and his on topics related to criminal justice.  We have been married over 44 years, and with my recent retirement I was still in the early stages of figuring out the new activities I was interested in. I felt good about having many choices, and explored writing, seeing more of family and friends, visits to museums – all enhanced my life.

And then changes in my husband that I had vaguely seen in recent years, yet ignored, became more prominent. His forgetfulness and energy decline had been increasing, but didn’t seem to have a major impact on our quality of life.  But recent health challenges had a more profound impact. These related to diminished cardiac functioning requiring intermittent oxygen supplements, and urological issues leading to increases in medications and use of a walker for mobility. Continued declines in energy also meant that my household responsibilities, as well as responsibilities assisting with his care, had greatly increased. He had become less talkative and most of his time was spent reading or watching TV. I had become a home health aide, and he was in an assisted living situation- with me as the only assistant. Realizing that I couldn’t continue doing this myself, I began arranging for home care assistance.

I have sad and scared feelings about these changes. It felt as if my planning for my retirement years had reached an insurmountable wall that didn’t permit further development. It was as if I had entered an alternate universe from the one I was living in, and needed to figure out how to live and manage within new rules and constrictions. My life felt diminished. And I knew this trajectory was going in only one direction.

Our daughter came to visit recently and help out with the additional tasks my husband’s new health problems had raised. One evening she decided to google us and see what she found about our careers. Our work had been published in many articles, with hundreds of citations by other research scientists. And she found a tape of testimony my husband had given before Congress about 25 years ago about the effectiveness of prison-based treatment for substance users.

I eagerly watched his testimony, and it was  as though I were watching someone I hadn’t seen in a long time. He was well-dressed, hair neatly combed, with only a hint of the gray and balding areas that now cover his head. And he was confident and eloquent, drawing on the research literature and his strong convictions. I had always admired his public speaking, especially since I was somewhat reticent in public speaking and never had his unwavering confidence. And I had forgotten what he once was. Watching the tape, I remembered who he had been and how I fell in love with him, admired him, and was proud to be his wife at one time in our lives together. I felt a warmth and caring for him that I had recently lost. It gave me an understanding of why I needed to be, at least for a while, the home health care aide I had become, while at the same time figuring out how to manage this new universe.

This realization doesn’t change our current situation, nor my periodic sense of burden, nor my need to find a home health care aide who could allow me to go back to finding some of the things I wanted in my retirement. But for the first time in many years,  I remembered how I admired him and his strong advocacy for those who had experienced discrimination and needed drug treatment services. It was almost as if watching the tape had opened a box that had been kept tightly closed, and from it emerged the admiration and love I felt so many years ago. And I knew I would continue to provide and obtain the care for him that he needed, not just because of who he was now, but because of the memory of who he, and we, had once been.