My mother’s conversations had always been a bit repetitive and circuitous. Much like a town crier, she frequently spoke in clichés and repeated stories she had heard to anyone who would listen. She was loving and kind, so this, along with her tendency to repeat questions, seemingly reluctant to learn the answers, was something that we found endearing. She was more concerned with relationships and making people feel welcome than with neatness, so odd piles of papers were a common occurrence, and again, nothing to be concerned about.
Perhaps this is why it took me so long to be aware that dementia was stealthily creeping into her life, hiding in the cluttered corners of her mind. So what if she repeated herself more often and asked questions I had already answered? Who really cared if there were piles of unread mail on the coffee table? Did it matter that she occasionally paid a bill twice, or felt overwhelmed by the computer or following instructions? Honestly, who has not had that experience?
But after my brother died, understandably, each of these small foibles intensified, shifting from charming to disconcerting. And of course, she was aware on some level of her memory playing tricks on her, which was frightening for both of us. I wanted to comfort her, while she wanted to simultaneously remain independent and be protected. This was when I moved her from California to Colorado so that I could try and fulfill both of her desires.
Dementia is a terrifying word, up there with Alzheimer's and cancer. And yet, for her, dementia was a gift. As she moved from living semi-independent, to assisted living, to skilled nursing, she began to forget the restrictions and judgments she had grown up with. She forgot that she was always supposed to make other people happy, and stood up for herself. She forgot her inhibitions and made friends. She forgot that she did not like groups and attended activities. She believed that she was still in school, but as one of the most popular and pretty girls. She forgot that she was afraid of everything and tried new things. Dementia erased the painful memories that had haunted her, as well as her compulsive fears of doing something wrong or upsetting someone.
My grandparents were "mostly alive" in her world, but she had a new relationship with them, in which she was strong willed. My father was "sometimes dead" but when he was alive in her mind she was able to express her wants and desires. It was my brother Steve, who had passed away seven years prior, whose memory haunted her. For a long time she knew he was dead and she missed him. One day there was a shift and she believed he was alive, but away at sea, perhaps with my father, but she never had a memory of him calling or visiting, as she did with her parents and my dad. She would even tell me that everyone, except my brother, had been at Shabbat services with her, a ritual she had avoided forever, but now enjoyed.
I learned to wait until I knew "when" she was before engaging her in conversation. I also learned never to correct her to time or place, only to safety. So if she called me and told me that I forgot to send my grandfather to pick her up and she was concerned about getting home, I apologized and promised to send someone immediately. Then I would call the staff and guarantee that she was safe.
But it was my missing brother who aggravated, angered and frightened her. He was “mostly alive,” and she was mostly upset with him for not calling. And so I took a risk and sent her flowers from my dead brother, in part to comfort her and in part to redeem him in her memory. The risk was, of course, that she would receive the flowers and suddenly remember that he was alive. But this was not what happened. Instead, the flowers comforted her for a day and then she wanted to call him. While she could remember talking with her parents and my dad, she could never remember talking with Steve. I continued the flower ritual for months, hoping to build a memory that would comfort her.
Then one evening she called me ecstatic and told me that Steve was there and was staying for dinner. She was happier than she had been in months as she planned dinner for the entire family. When she hung up I knew that her time was close, and so was not surprised when she passed away, quietly between breaths one week later. I like to think that she is somewhere holding my brother’s hand and laughing.