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.
For twenty-one years now I have lived with a man who daily reminds me he is dying.
This has led to a split life for me. I find myself constantly in conflict, constantly questioning my priorities. What should I do next? Spend time with him? Or get on with my work—whether it be writing, housework, or bookkeeping. Or time with friends.
I talked with clinical counselor, Alma Vaugeois about the frustration of constantly having to forego choices unrelated to the caregiver role.
Having to constantly focus on the person being cared for can mean giving up aspects of one’s own life, Alma explains.
Because all of your energy is going into him, there will be a sense of loss for yourself.
This rings true with me. I do feel that I have somehow lost ‘me’ somewhere in that deep chasm between the immutable ‘now’ and the looming ‘then’.
Somewhere between “life with Chris”and the looming future of “life after Chris” my own life seems to have slipped away.
It is ironic that even as delicate as his health is, he can travel with his children without his timelines being affected by any aspect of my life, whereas I have put off a number of trips in consideration of his next procedure, or his present fragile condition.
And I ask myself, are these the ‘fear based’ decisions that self-help gurus preach against? Or are they merely practical considerations in light of his medical history and current situation?
I need to figure out how to carve out time for me, to see some aspect of myself as blooming, even if only in inner space.
I need to find a way to feed my passions while still caring for him to the best of my ability.
Because if I toss my entire life to the wayside in my intent to care for him, I will become resentful and bitter.
I will fester in the role of caregiver. And me festering? It ain’t a pretty picture!
To learn more about Alma Vaugeois, go to www.almavaugeois.com