I was born with Asperger’s so that I had markedly different ideas and behaviours from the average girl,
In my book, Unforgiving, Memoir of an Asperger’s Teen, I talk about how frustrating it was, growing up in the 60’s when the syndrome was unknown.
I spent my whole life hearing that what I said or thought or how I reacted to situations was ‘wrong’. And maybe it was.
When I married Chris, we had problems, the same, I like to think, as any other couple.
I worried about saying the wrong thing, doing the wrong thing. Being the wrong person.
Even more so, now that his health is so fragile.
I’m sure others caring for their loved ones must feel the same, Asperger’s or not.
But that out-spokeness is helpful at times, too. Sometimes it is exactly what the situation calls for. I can face these times. I want to know. I ask questions, probe, push a little. Sometimes a lot.
So people look at me like Where do you get the nerve?
That’s okay. People have looked at me like that all my life. I need answers. Chris needs answers. I’m willing to stick my neck out to get them.
It’s loving him that kills me.
I remember when he had his first heart attack twenty years ago, I was scared stiff. Scared he’d die when he had so much to live for. Scared I’d be without him.
I kept telling myself, If I can just get him home, just be in bed beside him again tonight, everything will be all right.
It hasn’t been perfect. We’ve had our ups and downs. But even with this final blow, we’re still together. Thirty years and counting. Still happy to see each other.
And, Asperger’s or not, snuggling together at night is still the very best part of my day.
So I seem to think Chris, who is ill, has more freedom than I do as caregiver. But surely that is an oversimplification.
After all, he is a man, who, with diabetes and severe coronary artery disease, still gets up out of bed once or twice a week and goes out to appraisals, to check how things are going on the work site.
A man who always has and will still get breakfast if I have a morning meeting, or make himself a sandwich if I’m having lunch with friends.
Who really loves to have his coffee brought to him in bed, who wants me to sit and watch TV with him. Who in the past has enjoyed helping prepare and share meals.
And he seems to appreciate the cleaning and laundry that go with keeping a place up. So it’s not like he’s taking advantage of me.
Alma Vaugeois, a friend and clinical counselor, talked about Chris. Although he is very sick, he has not made illness his primary identity, she told me.
The way he has constructed his identity, including his illness but not entirely focused on it, there is a generosity in him. That and his deep sense of humour make him strong enough to allow you to be you, she said.
This will not be every caregiver’s experience, Alma added. Not everyone is like that. Some people who are very controlling will not be able to give their caregivers that support.
So it’s not about Chris, this sense of losing myself to the suction of the demands of his care. It’s more like I’m not making quite the right decisions.
That’s the issue that needs a closer examination. Now. Before his condition deteriorates and his needs escalate.