Saying Goodbye

It is hard to describe what loss is like through Alzheimer's. There are so many losses along the way, that it feels like dozens of papercuts. Several years ago, my mom would call me several times in an hour because she had forgotten that she had called me before. This was extremely frustrating when I was trying to get through my workday. Then one day, she stopped calling. I cannot remember the last time she called, but they just stopped. I felt relief that I could get through my day without interruption. Then I felt guilty that I felt relieved. Then I missed her calls. Not the daily calls, but the occasional, coherent calls from years ago when she would just check in. This was a minor paper cut.

Then there was the much deeper cut when she forgot my name. She would sometimes recognize me as her daughter, sometimes not. I don’t remember the last time she knew who I was. That is the funny thing about lasts. We don’t notice them as they are happening but feel them deeply when they are gone.

Then there was when her personality changed. And she was angry all the time. She would yell at me just for being there. She hit me. Kicked me. Bit me. Surprisingly, the loss was deeper when she stopped. She had become too weak to do these things and as I saw her physical decline, knowing that we were nearing the end, I missed the abuse. At least with that, I knew we still had time.

The social worker who led the caregiver group talked about anticipatory grief. He said that when someone we love had a terminal illness, we felt anticipatory grief. We knew that we were going to have to say goodbye and we felt grief for this time. My grief was different. I did not feel grief for what was coming. I felt grief for the mother that I had already lost. The person who was inhabiting her body was not my mother. I had already lost her, slowly, one papercut at a time over several years. I had thought that when her body gives out, it would be more of a formality. I would not feel much loss, because I had already lost her.

I was so, very wrong. I was not with her as she took her last breath. My stepdad called and told me it was coming, but the drive across town caused me to miss it by about 10 minutes. When I arrived, she was pale and still. My stepdad, my husband, my niece, and I sat with her as we waited for other family to arrive. I watched as her skin paled and her mouth and eyes slowly contorted. I felt her get colder and stiffer. And I felt a loss that I did not expect. I grieved the person she used to be, and the person she had become. I grieved my dad, whom I could not talk with about my feelings. I grieved the loss of my son’s Nana.

Two weeks later, I am grieving the loss of my family. I am yearning for siblings, which I have not done since childhood. I have stepbrothers that I love deeply, but we were not raised as a nuclear family. My mother did not raise them, and they had very little connection to my dad. I need someone who is going through this loss with me.

Mostly, I miss being someone’s little girl. I miss my dad telling me he is proud of me. I miss my mom smothering me with love. I that connection to my roots and feel like I am on my own now.