Tag Archives: Caregiver’s identity

A Caregiver with Asperger’s? How Does That Work?

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.

Yours truly,

Margaret Jean.

Caregiver: Where Did My Life Go?

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

Yours truly,

Margaret Jean.