Feelings I don’t want to write about

I don’t want to write about this because I am ashamed. I feel a terrible, monstrous guilt, and I’m so busy judging myself that I can almost find no space in my heart to worry about how you might judge me. Almost. But what I’m about to tell you is pretty shocking. You might judge me. I wouldn’t entirely blame you if you did, because I’m certainly judging myself.

But it occurs to me that, although it feels incredibly lonely to me and my family as we go through this, this is actually not a rare story. So maybe there are other people out there feeling guilty, and ashamed, and believing they are utterly monstrous for feeling the way they do.

Maybe baring my soul will help them. Maybe it will help me. Maybe, even now, I’m putting off admitting the truth.

So here it is:

I wish my Mum would die.

Without context, those words are pretty shocking. I can’t quite believe I feel them, much less write them publicly like this. And I condemn myself, so strongly, for their callous truth.

But the truth is, we lost Mum years ago, and we haven’t the luxury of mourning her. Of accepting her passing, learning to live with our grief, and moving on. Because we are compelled to maintain the shattered shell of her brain, and her surprisingly robust body, regardless of how little of her remains inside it.

She doesn’t know her children. She certainly doesn’t know her grandchildren. And she is terrified of what is happening to her. She is unbearably confused and distressed. She wants to go home to her parents – perhaps to a time she felt safe – although even if they were alive she probably wouldn’t know them.

She used to have lucid moments, but I don’t think they happen anymore. She is easier to manage now as some of the rage and paranoia have eroded, along with the last of her personality. She used to remember – or create – fragments of her past, but even those are gone now.

And this is the best she will ever be from now on. Every day she will get worse. Every visit will be more traumatic. And we mourn her even as we keep her alive. We fight her to find ways to take care of her, and she resists them, every one, because it’s all so confusing and terrifying to her.

Every day another small window into ways that we can help her squeezes closed. Every moment she becomes more lost, more alone, less herself.

And all we can do is keep her alive. Even though she died so long ago.

I don’t want this to happen to me. I don’t want to put my children through it. I don’t want to go through it myself. Who benefits from dragging out her terror? From maintaining the trauma that is her – apparently – sacred life?

There is nothing sacred about the rigid enforcement of laws that promote infinite pain and endless sorrow. This is not about the value of life. This is callous, unfeeling, and fiendishly cruel.

We talk about quality of life as though it is something we have control over, but there comes a point where quality of life goes irretrievably negative. Where maintaining this life is no longer the ethical thing to do. Where keeping someone alive is simply torture.

Who benefits from this hell Mum is going through?

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3 thoughts on “Feelings I don’t want to write about

  1. Victoria

    It is horrid that we as a species deem human life too precious to let it go when with any other animal we’d show compassion by doing just that.

    Perhaps there is some benefit somewhere, though perhaps only visible with hindsight.

    You have inspired a thought – perhaps I will write a letter (or a book) for my children to read if at some point in the future I am no longer myself.

  2. Nancy Mckinnon

    It is tragic that we allow people to suffer in this cruel way. The pain and heartache of the family must be horrific.

  3. I watched my mom deteriorate for years and then finally extended family (that she gave Power of Attorney to) scooped her up, sold her house and put her in (an albeit posh) nursing home.
    Her and I had a close relationship as far as spirit goes (I was living abroad and building a family of my own) and we talked on the phone everyday. I loved my mom and wanted her to be okay, but she wasn’t. We shared a spiritual connection (?) and when she stopped eating, six months before she died, I knew I didn’t want her to suffer.
    She was diagnosed with cancer, 3 weeks before she died. I prayed that she would go quick and smooth. Some of my extended family saw my acceptance of reality and my desire for her to go in peace, as a threat. There is absolutely nothing wrong with wanting someone you love to pass quickly and to not suffer. Anybody that judges you or suggests that you have malicious intention is projecting their own pain that they want to deny.
    Thank you for this post and your candidness. I hope you find Peace within in this process so when you look back it isn’t in anguish and pain.

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