The other day one of my children asked why I write a blog about what seems to be, what must be common knowledge – being a caregiver. As I thought more about it I realized that I wrote, not for anyone else, but for me. There is so much that is not understandable in my life, except for vague generalities, that writing a blog helps me to sort out my feelings. It isn’t that I have answers or that I know more about my future, my wife’s illness or the illness; writing is a way to hold the emotions at a bit of a distance, to examine them and hope that, instead of an tangled messy skein of feelings that tangle around my awake hours and invade my sleep, the emotions become more orderly and less disruptive. I want to be able to see those feelings at some remove and manage them a little.
I started writing from a sense of loss. All my remembered life, I had been trying to get a sense of self, a sense of being someone.
Seemingly, in retrospect, I had achieved worthwhile goals my entire life, going to a fine undergraduate college, then professional school, eventually more graduate schools and degrees. It is ironic that achieving goals never made me feel fulfilled until, after a successful career (unfortunately not financially), I finally achieved some sort of peace and calm when I elevated my hobby of photography to a real force in my life.
I traveled to out of the way places, took pictures and met people and – for the first time in my life I was happy with myself.
I was creating and totally calm with what I was doing.
Of course, my wife’s illness took all that away.
My wife suffered with immune problems from early in our marriage and, as her decreasing strength made working regular hours outside the home impossible, became the eponymous homemaker. She loved being in charge, loved cooking, loved shopping and taking care of everything within our home’s walls.
The increasing impact of her dementia made even this impossible and while Nature laughed, I became responsible for everything, most of which I knew nothing about. In a spasm of duty and responsibility I dropped everything to be a caregiver.
Everything that I enjoyed, movies, plays, eating out at strange restaurants, traveling to take pictures, all of that gone or pushed away.
Everything that I was, gone.
Man, was I angry, but with no outlet for the anger. I couldn’t be angry at my wife, it’s not her fault. I felt guilty for being angry – and that guilt made me double down on being the greatest caregiver in the world.
I learned to shop and I learned to cook. Cooking anything fancy was a waste of time, she liked simple foods, perhaps that she remembered.
I had tried hiring caregivers. They paid way too much attention to my wife, following her from room to room and trying to engage her and she hated it – and them and eventually wouldn’t allow them in the house.
So there I was, stuck cooking basic simple meals, doing the dishes and the laundry and every other damn thing and worrying about the endless future.
So I wrote and wrote and tried to use that writing to untangle the tangle of anger and loneliness and depression.
I was lucky in that I had two friends that persisted in keeping contact and, as much as I appreciated every minute of their company, it was clear that they were still living a life and I was not. My children, who live far away, called and visited when they could, but when I hung up the phone, I was alone with my wife again.
And so I wrote, I thought, to push away loneliness, not dispel it but just to push it away so I didn’t have to deal with it.
After a couple of years of this emptied life, another acquaintance also a caregiver for someone with dementia, met me for coffee, listened to me complaining a bit then slapped me smartly around the face (rhetorically of course) and told me I was doing most of this to myself.
‘Get out’ she said, ‘make a life. Do whatever you have to do to enjoy life a bit.’
And I listened.
So I found a housekeeper for the afternoons who had experience as a caregiver. She’s a smart, nice woman and Jackie took to her and vice versa. Then I swapped the early morning work-out sessions at the gym for the intense interactions of pickle ball three mornings a week and thought, considering the situation, I had everything under control.
But, even with this activity I felt empty; even though I had much more of a life, something was still driving me to this continuing self-examination and to writing as a way to figuring myself out.
What was I missing?
I was looking at myself and not understanding.
The other morning I was talking on the phone with my oldest friend. In a odd, unpleasant coincidence his wife is going through the first stages of some sort of illness also and I was telling him my experiences and how I dealt with all of it.
He listened and asked me how I was dealing with, all of a sudden, not being ‘someone’, just being the person who did the chores, watched over the sick person, totally dissolved in that role.
A light went on.
Even being as egocentric as I am, I have never looked at my self , at my situation in that way.
As the classic driven type A person, all my life I had fought to be something, someone in everything. Get that promotion, be that speaker, and so on. In a succession of very small ponds, I had made it to be a sizable fish.
For better or worse, that persona was gone, I didn’t exist anywhere except as Jackie’s caregiver.
So, at one level I have reconciled to the loss of the external things and really wanted to be the best I could be at taking care of my wife, at another level the loss of sense of self is devastating.
So now I know what I have to do.
At the core of Buddhism are the Four Noble Truths. The First Truth is that life is inescapably full of things that cause stress and suffering yet are only temporary. The Second Noble Truth is that the cause of the stress is not the things themselves but our attachment to them.
We continually search for something outside ourselves to make us happy. But no matter how successful we are, we never remain satisfied. The Second Truth is not telling us that we must give up everything we love to find happiness. The real issue here is more subtle—it’s attachment to what we desire that gets us into trouble.
The Buddha taught that this thirst grows from ignorance of the self. We go through life grabbing one thing after another to get a sense of security about ourselves. We attach not only to physical things but also to ideas and opinions about ourselves and the world around us.
Then we grow frustrated when the world doesn’t behave the way we think it should and our lives don’t conform to our expectations.
My goal is to understand this.
To give up expectations, to live day to day emotionally.
To wring out every bit of joy from each day and, at the end of the day, discard the painful things.