There are few things in my life that I have the ability to make such declarative, absolutist sentences about.
But this is one of them: I have some expertise with anticipating grieving - and then actually grieving - for someone who has been ill a long time.
One of the most difficult parts of this experience is how silencing it is. All through: from the time my Father first fell ill, all the way to now, some 20-odd years later, there have been various codes of silence I've had to abide by. Some of these codes I constructed myself. Others I intuited (or imagined?) and complied with.
Now I feel I cannot really contain all the silence inside me, and worse, I sometimes feel as though the silence I had to impose on that one most vital, painful and significant aspect of my life is spilling over into other parts of my life. Slowly, I am becoming quieter and quieter. Some things I want to say, but physically cannot find the words to do so. Things unrelated to my Father and his illness and his feelings about all that.
I don't want to wake up one day with no words left inside me at all.
So I feel pushed to try and speak - say something - anything - to anyone who will listen (or not!)
Here are some of the codes of silence which I've imposed, intuited or imagined:
You (I) cannot talk about the person's decline to your contemporaries. People with whom I could talk about the crudest, funniest, scariest or saddest things - my college friends in my case - never heard about the signs, small or big, that signalled my Father's final 'decline'. The thousands of signs and signals that accompany old age and infirmity. How he needed support with all of his 'personal functions', what I had to do or couldn't do. My alarm, fear and sadness at seeing these things. My friends' parents are mosly (thank God) well and young(ish). My Father was ill and old. I didn't want to see their shock when I recounted 'what happens', and I didn't wish to hurt my Father's dignity. So I was silent.
You cannot say I'm scared! This one I imagined for myself very early on. I kind of broke it once or twice, but for the most part, I never communicated to my Father how frightened I felt (still feel) at his imminent absence or infirmity. After all, everywhere in the world is painted the injunction to BE BRAVE!
And of course, I thought it would be utterly ridiculous to tell someone who is ill (scary!) and dying (scarier?!) that you are scared. So I was silent.
A corollary to this: My Father told me only once that he was scared of dying. I wish we had been able to hug it out - both scared, both trembling, instead of fracturing slowly from within with the strain of being 'BRAVE!'
You cannot be angry, unreasonable, voluble or pissed off. When someone in the house has a heart condition, and has been told to manage his stress better, and your Mother is fragile from the stress of it all, you are expected to be a responsible, rational and above all - CALM - adult at age 10. I have never been able to align myself to this very well, feeling all of the strain involved, and learning none of the skills required. I did it anyway, and that fractured me some more inside. Of the thousand angry-making torments of childhood and adolescence, I gave uncontrolled vent to a few. The rest I swallowed, and they screamed away inside me. (People who know me might find this difficult to believe.)
Above all, you cannot be angry at the person who is ill. Oh my God. This one is the worst. I felt (feel) like hell itself about this one. This one I'm still scared to even touch, and it completely takes away all my words. Except once, when I said to my Mother: I did not ask for this.
Cue tremendous, defensive anger and astonishment.
I never said it aloud again.
I get that it's wrong to feel sorry for oneself. I get that my Father was a saint. I get everything.
But I wasn't even meaning it that way. Anyway.
The Hospital. There were hundreds of hospital visits. Ranging from 1 hour, to a month. Ranging from the routine to the catastrophic. Doctors are amongst the most silencing people I know. They want you to let them off the hook with a polite nod to signal understanding and acceptance.
They think they are doing you a favour by answering your questions.
The only response that felt genuine, when faced with their 'updates', was for me to scream, tear my hair, howl. Instead, I found myself nodding with a completely neutral face. I hated doing that, but could not stop myself.
The Spouse. You have to be brave for your Mother. Said people about a million times. So layer by layer, starting from the outside and now very far in, I have become rock-like.
I wish this is not how things were unfolding. I feel unable to say what hurts, or where, or why. I feel unable to say the ugly, scary or difficult things that need to be said so that they can be aired and forgotten. I don't know whether this is what happens to everyone in my kind of situation or whether it is just something that happened with me. I don't know what to do about it except to keep trying to speak. Even if it's by writing all rambling posts on a blog on one reads, about being unable to speak.
You have been warned.