Yesterday, I was reflecting and realized that as a caregiver for my mom, my lola, and now my uncle, I have a protracted perspective on aging, dementia, and alzheimers. However, I could never articulate it as well as Frances H. Kakugawa in her book Breaking the Silence: A Caregiver's Voice. She writes:
For our loved ones, what must seem at first a few strange moments, turns into an eternity of decline: the gradual disappearance of the self as a monster-sized eraser slowly sweeps the brain cells, leaving large, empty spaces. Fear and confusion replace simple uncertainties as more and more faces and objects become nameless and meaningless. Being treated as helpless and incompetent, feeling the shame of having to be so dependent, finally gives way to living in a world of bewilderment, terror, helplessness, and sadness....
This is the reality we are familiar with, and unlesss we are there ourselves, we will not fully understnad what it's liket o become dependent on others. If they could speak, perhaps this is what they would say:
Emily Dickinson, I Am Somebody
If I cold speak, this is what
My voice would say:
Do not let this thief scare you away.
Do not let this thief intimidate you
Into thinking I am no longer here.
When you see me, tell me quickly who you are,
Do not ask me, "Do you know me?"
Help me retain my own dignity by not forcing me
To say, "No, I don't know who you are."
Save my face by greeting me with your name
Even if the thief has stolen all that from me.
It shames me to such indignities to know
I do not know you. Help me
In this game of pretension that the thief
Has not stolen your name from me.
My words have all forsaken me,
My thoughts are all gone. But do not
Let this thief forsake you from me.
Speak to me for I am still here.
I understand hugs and smiles and loving kindness.
When I soil my clothing or do something absurd,
Do not ask me "Why didn't you?"
If I could, I would.
I know I have turned into a monstrous baby,
If I could, I would not allow this thief
To let you live and see what he
Has stolen from me.
I know my repeated questions
Are like a record player gone bad,
But my words are gone and this is
The only way I know to make contact
With you. If is my sole way of saying,
Yes, I know you are here. This thief has stolen
Everything else except for these questions
And soon they, too, will be stolen away.
I am still here
Help me remain a human being
In this shell of a woman I have become.
In my world of silence, I am still here.
Oh, I am still here.
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