I was very fortunate to be able to spend some time at the beach last week. As my daughter and her friend ran around taking pictures of each other and the birds, I found myself staring out at the sea and moving my fingers through the soft, cool sand. As I looked at the sand falling through my fingers, I had two thoughts. This is what it might feel like for my mom as her memories and cognition come and then slowly fall through the folds of her brain away again. This is also what I feel is happening to my grasp on my mom. She is there and then she is gone, falling through my fingers.
We have been losing my mom for quite a while now, but it has entered a new stage. She recently had to go on additional medication for anxiety and behavior, and she is also up a lot of the night now walking around, so I am not sure if these are contributing factors. What I do know is that her expression is blank much of the time. She does not immediately react to seeing us as she did even a month ago. She looks at us for a bit and then at some point she will say that she is glad to see us.
She does not talk much and only occasionally starts a conversation. She is saying some interesting things, letting us know she is losing her understanding of my sister and me. As we were sitting outside a few weeks ago when it was warm in the sun, out of the silence she looks at me, smiles, and takes my hand. “You are my friend,” she said, “my best friend.” I will take it! When I was leaving later, a nurse asked my mom if she had a good visit with her daughter. My mom looked at me blankly as said, “I don’t know, did I?” I said, “Yes, mom, you did.” She asked my sister, as they were resting together in bed if her mother would be worried about where she was. “No,” my sister said, “she is not worried at all.”
We had learned from the book, Creating Moments of Joy, by Jolene Brackey, that at some point it is good for us to start calling our mom by her name and not “mom”. I am beginning to think that this might be the time. It takes away any confusion she might have of seeing me and not understanding that I could be her daughter, because at that moment her daughter is five years old, or not even in existence. Not knowing where she is in her mind, it provides a clean slate. She still knows that she loves us and that we love and care about her, even if she doesn’t completely understand the relationship.
My sister and I had a Thanksgiving meal with her at her place a week before Thanksgiving. I got there a bit early and they were still setting up. My mom was actually helping to put menus on the tables. We sat down at a table to chat a bit before the crowds started coming. She looked around and said, “I don’t know where my husband is. I tend to lose him during the day.” “Oh,” I said, “and what about at night?” She responded, “Oh, he is there at night.” She seems so alone, within herself, that if she feels that my dad is there with her, it is a comforting thought! The crowds and music were a bit too much for her, so after she had a bit of turkey, we took her back to her room. It was the first time that we had been there in the evening in a while and we could see the anxiety ramp up. She became very confused about this being the same place where she stayed each day.
We lost the person my mom was, her personality and her intelligence, years ago. Now, we are losing her as a person. She is on her way to joining the others living with her who walk or roll around in their wheelchairs aimlessly, lost within themselves. In a sense we were looking to this time as one that would be easier because she would not be constantly trying to make sense of her loss of abilities. That is the case most of the time now. However, she still has the fear and confusion that requires reassurance, and I am guessing that will continue. It is heartbreaking to think how lost she feels most of the time. I know that, even if I were with her everyday, I could not take that feeling from her – the feeling of losing one’s self.
In that shoreless ocean,excerpt from “Sail Away” by Rabindranath Tagore
At thy silently listening smile my songs would swell
Free as waves, free from all bondage of words.
Is the time not come yet?
Are there works still to do?
Lo, the evening has come down upon the shore
And in the fading light the seabirds come flying to their nests.
Who knows when the chains will be off,
And the boat, like the last glimmer of sunset,
Vanish into the night?