I promised myself when I began writing about this end of life experience with my mother, that I would be honest, sharing as openly as I could. Sometimes, though, it is too much; yesterday I took a video of her that was too sad, too much for me to bear, so I deleted it. I feel compelled to record this time in our lives through words, photos, and videos, so that my sister will feel that she is here with us, and so that I will be able to look back on this time in the future and hopefully have peace.
Sundays are quiet days at the hospital, and I was often alone as I walked the hallways of St. Vincent’s. The day held many sad, but tender, moments, one of the most heartbreakingly beautiful of which happened thanks to my best friend, Diane. She texted and asked what Mom’s favorite hymn was, and I told her (In the Garden). A little bit later, another text came from Diane, this time with a special gift. Diane had found a recording of Patti Page singing ‘In the Garden’, and had created a movie with photos of Diane’s beautiful gardens, and photos of Diane and me, and of us with Mom. It was just incredible.
And then…Mom began to sing along with Patti Page, every word, every verse, her voice barely audible, but earnest as can be. I was overwhelmed with emotion, as this is the hymn Mom has told me over the years that she wants sung at her funeral. The tears streamed down my face, and my heart physically hurt from the achingly poignant moment. It was painful, but so beautiful.
Sunday was Dan’s one day off in what has been a very stressful time at work, with long hours and too many details to juggle at the theater. He told me that we were going to have a date night, finally getting to spend an entire evening together. When I got home, there were beautiful gladiolus on the dining room table, and Dan had the makings of one of his fabulous homemade pizzas out in the kitchen. He made us ‘Danhattans’ (Dan’s version of my favorite cocktail), and we sat out of the sun porch with the dogs, talking and enjoying the view. We have missed this time together so much, this time of connection and grounding. What a gift to have this evening together in this sea of chaos in which we are both swimming. To me, the evening was truly medicinal…the power of love.
This morning, I had to go sit in a jury waiting room until I could speak with the judge about rescheduling my jury duty. Of all the times I could have been called…I had a letter from Mom’s pulmonary doctor, and so the judge kindly excused me. Mom had already called, breathily asking when I would be there. I stopped by my office briefly to take care of a few time-sensitive things, feeling panicky that the new semester is beginning in two weeks. There is so much that I have to do before then to be ready, but don’t know how I will get it all done. So many conflicting needs right now- sit with Mom, pack up and clean her apartment, check in regularly with St. Martin’s, my own home obligations, updating syllabi and planning for the semester…but I know where I have to be, what I have to do. Priorities shift and change at times like these.
While I was at the office, Mom called again, sounding panicked that I was not there with her yet. I couldn’t focus on what I was trying to accomplish, worrying about her, and finally gave up, gathered my things, and rushed to the hospital. As I walked to Mom’s room, she called me again. I walked as fast as I could to get to her, and was dismayed to find her looking very bad. Her breathing was shallow and rapid, her voice very weak, her color was off, and she seemed confused. The nurses checked her and told me her oxygen had dipped again, and so she was placed back on the BiPap. This is the part that scares me, as we are still not clear if St. Martin’s will get a BiPap machine, and I hate the thought of Mom not being able to live out her days there, much less the thought of her having to endure even more change when she is already struggling so much.
At one point in the afternoon, I was reading in the recliner, thinking Mom was asleep. I heard her small, weak, and raspy voice say, “Neese, I love my Space People. They have been so good to me. So good to me. I love them all.” Yet again, the kindness of the Creative Group at Bedlam Farm (formerly the Open Group at Bedlam Farm), the wonderful group of writers, painters, poets, artists, who adopted my mother and gave her a new lease on life a year ago, has bolstered my mom’s spirits. That these people would shower such love and support to an old woman they have never met makes me see the beauty in the world. The power of creativity, of encouragement, of unconditional love. Such a gift to my mother and to me, one I never can repay.
I sat by Mom’s side, held her hand, spoon fed her her favorite cream of chicken soup. She asked me to brush her hair, telling me Grandma used to ask her to brush her hair for her. A connection of the generations. I brushed her beautiful silver hair back, trying to do it the way she liked, but difficult with the oxygen tubes and the pillow in my way. Still, it touched my heart to do this little thing for her. My mother has always been so fastidious in her appearance, so particular with her hair, and seeing her lose her dignity these past few weeks tugs at my heart. We seem to be caught in this vicious cycle of small steps forward, followed by several steps back, stripping away more and more of her dignity. I guess it will be like this until the end.
I plan to do everything I can to facilitate the process of getting Mom onto Medicaid so that we can bring Hospice into the equation. I just pray that I can make it happen in time for her to experience the wonderful care and comfort that Hospice will bring. Mom needs that, and I need it, as well. So many people have asked how I am holding up; I am frazzled, exhausted, forgetful, short-tempered, looking ten years older than my fifty-one years. I see the changes that grief and lack of sleep have painted onto my face, but I regret nothing.
I will continue to capture these moments, the beautiful as well as the difficult to see. Even those difficult moments have their own beauty- I am seeing that more and more. They are part of life, part of my mother’s reality, and I have vowed to hold her hand until all of the moments crystallize into peace.