The Absence of Presence – Part Two

Continued from Part One:

This photo shows, starkly, the overall tone and sentiment of my visit with Mom Sunday, the second day. Both of us overshadowed by the agony of her affliction.

One of the fears I had about visiting her was of making things worse. If she did recognize me, would it cause her stress, anxiety, too much excitement? What if she did recognize me, and was reassured that I was there… and then I was suddenly gone? Would that traumatize her anew? These were among many fears and concerns I had to stare down in their red, beady eyes.

I’ve read about how people try to interact with dementia patients, though it was suddenly very starkly clear I was unprepared for this. Things are different when it’s personal. Things are different when 48 years of life and experience are scattered and flung to the four winds, leaving me standing alone in the barren field of her dementia. She was there, but not there, caught in some purgatorial hinterlands of her own failing mind.

I knelt before her, having no idea where to start.

“Mom? Hi. Hi, it’s me, it’s Erin. I’m your daughter.” I managed a weak smile. She was fairly sedated, and could not keep her eyes open for long. When they were open,  it was difficult to get her eyes focused on me (or on anything, for that matter.) After awhile, same nurse who told Mom I was here knelt with me before her chair with the tray removed. She took Mom’s hand and put it on my face and took a very authoritative, loud tone.

“Lynn, Lynn – your daughter is here. Your daughter is here. She came to see you. Touch her, hug her! She’s here and she loves you!”

I had not yet said “I love you,” and I wouldn’t for awhile. I didn’t want to lie, and I didn’t know whether it was true. I was still trying to adjust to this wretched figure before me being my mother.

I had the feeling the nurses’s words were as much for my benefit as for Mom’s; she didn’t know our history, she only knew Mom had been asking for me and that I had never visited. She kept trying, kept putting mom’s hand on my face, kept trying to get her eyes to open and focus.

Then, after getting virtually no response from Mom, she said to me, “Oh my God, her brain is just gone, it’s gone.” Mom’s hand fumbled on my face and neck limply and without much response. “Lynn! Touch your daughter, she came to see you from California. Lynn! Lynn! Your daughter loves you!” This was the first time I came to tears – the kindness of the nurse, coupled with her stark words, mixed with the enormity of our relationship, of the situation.

My mother’s house was a very nice two-story Colonial in a good neighborhood, full of her books and beloved possessions. Here, she was sharing a room with another dementia patient, with only a few scattered belongings to remind her of home: Some photos, my old deacon’s bench that held my toys for so many years, one of her favorite paintings, a few knick-knacks on a bookshelf. Nothing more.

Mom walks almost continuously. If she is not sleeping, she wants to walk. This is apparently common in dementia patients, and in her case, they believe she is looking for me. She very frequently talks about “my daughter, I have to find my daughter,” and worries about me being in some kind of danger relating to water.

Sunday morning, my dad told me of a time when I was 4 years old and we were at Lake Michigan camping on the sand dunes. My mother was back at the campsite, while Dad and I were playing on the beach. I took it upon myself to wander off, he thinks maybe back toward the campsite, but I didn’t know my way and I got lost. I was only away from my parents for maybe 10-15 minutes at most, he said. However my mother was in an absolute panic, and I’m certain it felt like a small eternity to her and probably to my father as well. He wondered (and now I do as well) if that’s where she thinks she is, and why she feels like I’m in danger and need rescuing. Cruel. Stuck not in happy times from her past, but horrible ones.

We got her laid out on her bed, only ever so briefly before she struggled to get up again and resume her endless march, and I looked over her tiny body closely.

I recognized the mole on the back of her left calf, and not much else. Her face… no. Her entire person… no. There was no visible sign of my mother. She had been devoured, erased by this disease.

I went through the video, grabbing still shots and editing them, finding ways to express how she had faded away:

She was kept fairly medicated for pain, as she had fallen recently and had a huge, awful bruise all over the right side of her bottom and back of her right thigh. Because of the physical pain, she often wore an expression of anguish, which I amplified in some to show the awful, ugly reality:

One of the wonderful caretakers told me she had recently gotten Mom to smile and dance a little bit, but her dancing was just moving her shoulders back and forth. I was happy to hear she had a moment of fun. She told me that before Mom took a radical turn for the worse, she had a friend, Phil, on the floor who would walk with her. They would sometimes stop and kiss. Sweet.

The patience of these women was profoundly humbling; I could never hold a candle to a one of them. It is exhausting and difficult to keep track of my mother as she carries on in her search which will always only end in failure to find her goal. She can no longer walk alone, she has to be accompanied so she doesn’t fall.

Trying to get her into bed, even when she is literally falling asleep on her feet, is impossible. She has a nearly superhuman strength, apparently also common with dementia. It took everything I had to try to keep her lying down, or to get her to lie down – it was impossible without hurting her.

They could restrain her, it would be the easiest thing for them, but instead… they walk with her. They ask her questions, they try to get her to engage.  When all else fails and they must attend to someone else, they sedate her further and wait. Her tolerance is so high, they have to dose her repeatedly to get her to calm or sleep. She seems to be more comfortable in her Jerry chair than in bed, so we try and try again to seat her for more than 30 seconds at a time.

She wants her hands held almost all the time, she wants human contact, and reaches for every hand she sees. While she was lying down quietly for a rare moment, I held her hand for the first time.

After awhile, convinced I would keep close watch, they left me alone with her to walk the halls. Eventually, I closed us in her room, because she was so medicated that when she stopped to turn around at the end of the hall, she stooped over asleep. I wanted to keep her close to her bed and chair, and so we walked in circles around her room. She would sometimes try to open the door, but I held it shut. She shuffled to the other end of the room and seemed to look at the photos on the bookshelf or out the window, but I don’t think her eyes actually saw anything external. I’m fairly sure her eyes were closed, and when her grasping fingers touched upon and gently held the picture frames, she was only keeping herself upright as she fought the many milligrams of morphine.

At one point, she said, “itch my back,” and I thought maybe she recognized me at that moment because she would make that request of me sometimes, but perhaps not. Saturday was mostly just incoherent walking. I talked to her a little, and, when she was clearly in physical agony or was excessively worried about something going on in her head, I would reflexively say, “everything is ok.” What an exceptional lie. Nothing was ok. Absolutely nothing at all was “ok” in her world of turmoil.

I left after perhaps four hours, after which time I was exhausted. It was not a productive or satisfying visit in any way, I had not reached her at all. It was only ceaseless shuffling and struggling, punctuated by seconds of calmness. I went home to my dad and step-mom’s house to ponder, to recover, to wonder.

Continue Reading: Part Three

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