In the summer fo 2016, we moved my 93-year-old mother to North Carolina from her home on the Alabama gulf coast. She had been in an assisted living facility very near my brother and sister in- law. In the previous 12 months, her life had changed drastically with the death of my father and the need to move from her house to an assisted living facility. She has been wheel chair bound for many years and could not safely live alone. She needed assistance with daily activities including meal preparation, bathing, and caring for her surroundings.

In the time that she lived there, her cognitive functioning declined as well as her physical capabilities. She required a hospital visit that we did not think she would survive and resulted in the need for hospice. At that point, my family agreed that it would be best for her to move closer to me so that my partner and I could help manage her care. She currently lives in a memory care facility very near our home. Her memory is poor and her communication limited. However, unlike many of the other residents where she lives, she seems to comprehend most of what we tell her.

A few months after her move, her last surviving sibling died. My mother is the only remaining member of her family and their spouses. We debated about whether to tell her and sought expertise from dementia care providers. There was not a clear yes or no answer and ultimately the most reasonable advice was to do what we thought was best knowing her and the relationship with her sister. “Tot” as she was known, was my mom’s closest confidant and best friend. Our families are closely intertwined and have shared life’s celebrations and challenges all our lives. We concluded that telling her was the best thing to do. Cindy and I sat down with her and explained that her sister had died. I held my mother close while the three of us cried together. She seemed to understand and I was thinking we had made the best decision in telling her the truth. We sat quietly for quite some time.

Cindy and I took turns holding her as she looked at us with a long sad stare. Her sadness suddenly turned to confusion and she was able to form a few short words shaking her head, “now who has,,,,what?” At that moment, I wanted to blurt out nothing is wrong – everyone is ok, but I could not take back my words. When I softly said Tot, she began weeping again. My certainty in the decision was shaken and I wondered if we chose the best option. Since that time, I have not brought up her sister’s name and she has not tried to ask me any questions.

Life is a continuous series of changes sometimes requiring difficult decisions that may not present with an obvious best option. All we can do is put together the information we have and come together with those who love and care to make the choice we think is best. Our decision to tell my mother about her sister, has not made an overt change in her state of health although I do sense a sadness that was not there before. It is a sadness that I believe we all share over the loss of Tot and an entire generation of family. If we are fortunate, it is a part of the larger circle of life we are blessed to live and love.