Just over two years ago, my older brother took a redeye from California to Connecticut with my mother, ostensibly for a “visit” with her daughter and grandchildren. My younger brother drove up from New York the night before and the two of us picked them up from the airport. Without even stopping for breakfast, we drove 45 minutes or so to the nursing home where my mother would soon be living.
After all the careful planning it took to get my mother to this point, not one of the three of us reasonably intelligent adults figured out how or when we were going to explain to my mother that her children had jointly determined that she could not live independently and, without her input, found her an appropriate assisted living facility.
Of course, in her constantly confused state, this version of my mother did not recognize that, or why, we were at a nursing home. In fact, sitting in the lobby, she asked if this was where I worked.
Finally, sitting downstairs, in the locked memory care unit, with assistance from an administrator, we shared the news with my mother. When my mother finally understood what was happening to her, tears rolled down her cheeks as she sat there, forcefully and repeatedly stating, “Not gonna happen.” “This is not going to happen.” “I am out of here.” “I will just leave.”
As heartbreaking as this time was – and oh, it was – there was a part of me that was glad to see a bit of my mother’s true fiery spirit, instead of the vacant shell she had largely become.
It took a long time for my mother to get settled. For many months, my brothers and I frequently called to check in with her. My mother would talk about wanting to go “home,” with no understanding of where home was. Eventually, she stopped packing her belongings and asking to leave. It was certainly easier once my mother was no longer fixated on getting out. But her complacency could only come about after she lost a bit more of whom she used to be.
Fast forward a few years. I am my mother’s only family living in Connecticut. I try to visit her weekly, or even bi-monthly, but sometimes my busy family and work schedules make it hard to find three appropriate hours to make the trip. I have stopped the frequent phone calls. I justify these things to myself by thinking that it is hard for her to finish a sentence in person, so what good would it be on the phone, where she may not even understand with whom she is talking? Or, I think about the fact that five minutes after a visit ends, my mother has no idea I was there. These things may be true.
Last week at work, I was told an aide from the nursing home was on the phone. Previous calls have involved news of a fall or reports from a physical therapist. When I picked up the phone, I expected to talk with the aide, but instead, I heard some shuffling, and then my mother timidly said, “Hello?”
The phone call may have lasted two or three minutes, as truly, it is hard to keep a conversation going with someone who can only be in the present. I told her I would visit over the weekend. I asked if she wanted to see the kids. She mentioned “the boy” and “the girl,” which surprised me, as so often she does not recall that I even have brothers. After the conversation ended, I was amazed by my mother’s lucid moment, and what I thought was her request to reach me, after so many months of telephone silence. I wished I could drop everything and visit, but I could not do so, and, in fact, had I done so, it was just as likely that the moment would have been lost at some point during the forty minute drive.
When I arrived this weekend, she was in bed, wearing a hospital gown, which has somehow become her sleepwear of choice. Her nurse told me that this was one of the bad days, like the one earlier this week, when the nurse had suggested the call to me, hoping it would help improve my mother’s mood.
I was able to gently coax my mother out of bed. Over the next hour or so, I helped my mother dress, took her outside and, without much fanfare, made sure she ate for the first time that day. In just a brief period of time, my mother seemed to bounce back, smiling, laughing, enjoying herself. When it was time to leave, she agreed to sit with other residents, instead of returning to her bed.
So here is my moment of clarity: Sadly, the present version of my mother is the best that she is ever going to be. I need to figure out how I can make the most of whatever time we have, before her disease progresses further. Because, of course, it will. Her face will stop lighting up when she sees me. My presence may no longer be a comfort to her. When that happens, I hope I can look back on this time without regrets. She may not remember the phone calls or the visits, but I am told she may hold inside the feelings that the time together evoked.