Dying slowly

There is no joy in entering her hospital room, in seeing her again. Perhaps this is a bizarre thing to say about one’s mother. And yet, there is more to the visit than it just being a task. Because each visit may be the last, I wish to savour each remaining moment.

It’s not easy to write about, but I feel it’s necessary. I can’t talk about it though many kindnesses are offered when asked by friends. I apologize for my one word answers and shrugs to those who extend this politeness and courtesy and opportunity to share. I realized how much I have shut down and minimized my communication about her, when a friend asked the other day if mom would be in when the baby was born. This was a friend with whom I feel I can be open and honest and indeed, I told her fully what the situation was and she sat with me as I cried. But it made me realize how evasive I was being about the situation. In the raw emotion of pregnancy I need to even more closely guard my emotional boundaries because otherwise I’m more of an emotional mess than normal. So I write this to say thank you to all who ask, and all who support, and all who receive my one word answers. My not being forthcoming is no reflection on you. To use the cliché, “It’s me, not you.”

Not the only one

I also write this because I know I am not alone in my experience. We are a sandwich generation now. With young children and aging parents we can be caught between two sets of caregiving responsibilities. While no parent should have to face the death of a child, we will naturally face the deaths of our parents.

So, I go in. She has little physical control and no verbal communication but she focuses her eyes on mine as I lean over the bed on which she is lying under safety restraints. I see that her eyes see me. For the last few visits, that’s all there’s been: only that one brief encounter, not to be repeated during the visit. There is a slow and steady decline: from the visit in which her face lit up and she exclaimed, “You are so beautiful!”, to the visit in which she looked at me and simply said: “Children.” I’m not sure I could recall the last time I heard her say my name but these interactions tell me that she knew who I was and that my presence was bringing her at least a moment’s joy. I stroke her brow and this time that action calms her face. She sighs softly and closes her eyes. I put my face to hers and stroke her cheek and she puckers and kisses my cheek back. Is this a reflex? And then she’s gone. Dad comments that she seems to be looking at something on the wall, that she seems to see something there, and she’s doing this more and more. Her face is furrowed again and her arms are clutching her chest and maybe whatever she sees is distressing. Her vocalization forms no words but her tone is anxious. But there is nothing to do. No way to bring her peace or comfort. No way to know what’s going on in her inner world. No way to touch, to connect.

There seems something profound to me about looking in my mother’s eyes, really looking, when there’s nothing else there to see: nothing else left but the beauty of the core of her.

I take what there is to take: that we saw each other once more. There seems something profound to me about looking in my mother’s eyes, really looking, when there’s nothing else there to see: nothing else left but the beauty of the core of her. Because I am her. This is where I came from. Although I am also more, this is my source.

In her eyes, in that moment, before she disappears again, I can see the last essence and she is still my mom. Nothing else lying there may be, but in that moment she sees me and I have that again. And I don’t know if it’s the last time that she will. So all of that remains in that moment. It’s the last silken strand connecting our realities.

Coming to peace

Alzheimer’s doesn’t hold the trademark on crappy diseases. It’s not the only way that a mind and body can be destroyed, ravaged. It’s not the only disease that snatches our loved ones from us long before they should be going, robbing spouses of their lives together, grandchildren the joy of their grandparents, and children the support and wisdom of their parents. It’s simply the one our family currently faces, along with so many other families.

If I thought that for even one moment there was anything to be done to bring improvement to her life, if I believed that she could again be here in any way that was meaningful to her, I would pray for her to stay. But we can’t have her back. It’s been the voice of my tears for so long: “I want my mom back”. I don’t believe that she would not want to be remembered in this way, and I would rather hold the memories of her strength and vitality and energy. So instead I pray for a quick and easy passage to wherever it is we go next. Even as I prepare to bring another person into the world I do not wish her life prolonged for the event. She will share no joy or knowledge of my child’s birth and I hold no attachment to the order of these two significant life passages. The time for sharing joys and celebrations with her are gone. Any significance would only be my own and I have long since released that selfishness.

I have also long since come to peace with anything that may have transpired between us that remaining time with her might have permitted to heal. Mother/daughter relationships surely all have their moments and I’ve come to find the mother side of the dyad to be much more challenging that the daughter’s. I know she did her best for me. And loved me completely. It’s the understanding that only comes from holding your own child.

I wish for each of us a quick and calm passage in our sleep when our life’s work is done. There is nothing to be gained by dying slowly.

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