Thirty years ago, Chris impressed me, too. And I’m still impressed.
Valentine’s Day is special for me as a spousal caregiver. Because I know if I was looking after someone other than Chris? Maybe I wouldn’t have the same attitude.
I feel a very deep concern for those who care for loved ones with dementia. It is not easy to get time away. It is not so companionable to constantly be with their charges. These caregivers face a much more challenging situation and my heart and admiration go out to them.
One woman told me how she fell ill and had to be hospitalized herself. Her husband became violent with the substitute caregiver the agency sent.
Because I wouldn’t be there to serve him, she said.
I thought ‘serve’ was a revealing choice of words. It would never occur to me to describe what I do for Chris as serving him.
I’m lucky—Chris is so good-natured. If I put off making breakfast while I’m writing? He’s fine with it.
You might say, well what choice does he have? Who will look after him if you don’t? And you’d be right. But a lot of men and women as their health deteriorates? They get mean. Spiteful. Bitter.
I take pride in caring for him, just as all those years, he took pride in providing for and caring for me.
I”m lucky because he likes me to look after myself, even if it means an hour or so away from him—to see a friend, do a little shopping or go for a mani/pedi.
He exclaims with pleasure when I buy fresh cut flowers for the house. A lot of husbands would consider it a waste of money.
Looking after Chris? I’m glad I fell in love with him thirty years ago. He faces his situation with courage and humour, and when he wraps me in his arms? It’s still the best feeling in the world, Valentines Day and every day.
I have a good friend, Joy. The other day we were having tea and something I said, I can’t remember what, prompted her to say, “Maybe you’re grieving Chris already. Is that possible?”
I had been an hour late for our meeting because I read the clock wrong. Not once, but several consecutive times as I glanced at it. And when I got there, realizing how late I was, I burst into tears.
My husband has the most pervasive case of coronary artery disease his cardiologist has ever seen. Chris had his first big heart attack in 1993 and since then, events and procedures have constantly reminded us of the fragility of his life. That’s stressful.
It’s hard to write about this anxiety, about how it impacts me.
What spousal caregivers relinquish from their own lives in caring for their spouses, can create a sense of loss.
Added to that is the certain knowledge the future is going to hold something entirely different for us—to a large extent, an unknown quantity.
Alma Vaugeois, a clinical psychologist and counselour, tells me caregiving for the terminally ill is living in the uncertainty of what is going to happen and when.
People feel helpless in the face of the unknown. They can also feel loss long before anyone passes, Alma told me.
For me, these voluntary and involuntary life changes create a wholly natural and very unwelcome sense of loss.
Parts of our lives must be let go in order for us to do what in all good conscience we feel we must, what in our love for our spouses we are driven to do.
We all know what must lie ahead in terms of our spouse’s condition.
And people feel guilty thinking about the future, Alma related.
In short, we deal with guilt and grief while caring for our loved ones.
Perhaps that is what Joy saw in me that day. Grieving for what I am losing even now, while he is still living.
I wouldn’t change my choices. But it seems I can’t do anything about the emotional fallout that accompanies them, either.
And I wonder how many others have experienced this loss? And how many have covered up these feelings out of guilt or shame?
You can learn more about Alma from her website at: www.almavaugeois.com/
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.