Category Archives: caregiver dilemmas

caregiver challenges, caregiver dilemmas, caregiving, caregiving spouses, spousal caregiving

Precarious Health and Exercise: A Caregiver’s Dilemma

March 8, 2015 Margaret Jean Leave a comment

The doctor repeatedly tells Chris he must walk. Chris won’t. This is a caregiver’s dilemma.

Because I know he should exercise? But I also know how precarious his health is.

He could keel over any moment. He could die anywhere. In bed for instance. He could die while out and about. He could die in the kitchen getting a sandwich.

But he looks strong. Like his father, he has a big chest and thick rounded shoulders, a brute of a back.

Although his illness has reduced his size somewhat, it has not diminished the man.

His sense of humour is still keen, and he still has enough of a temper to direct a spate of comments at another driver, or people on TV–a politician or a football coach.

Keeping that powerful inner man intact concerns me more than his physical health. Do other caregivers feel that way about their ailing charges? Or is it just me?

After all, if the best cardiologists, and his cardiologist is one of the best, cannot cure him, then far be it from me to try. So I feed him carefully, help him keep his appointments and encourage him to stay calm and keep moving.

Which is why, when I am perfectly capable? If he offers, I will lie in bed and let him get me a cup of tea. Or make myself stay at the computer when I hear him hobbling around in the kitchen and let him get his own sandwich.

The risk I take when I force him to move like this? Is that it could be the moment in which his body succumbs.

There is a horrible guilt associated with even the possibility of this. But he does need to move. And because of the pain, he won’t unless hunger or need drives him.

Should he succumb? The only comfort I would have to offer myself is this: probably he could have been asleep and it would have happened anyway.

I have to believe that. Or I would never let him leave the bed.

Yours truly,

Margaret Jean.

Asperger's, caregiver challenges, caregiver dilemmas, caregiving, caregiving spouses

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

February 2, 2015 Margaret Jean Leave a comment

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 dilemmas, caregiving, caregiving responsibilities to self, patient identity and caregiver freedoms, spousal caregiving

Losing a Sense of Myself–Who’s Responsible? Caregiver? Or Patient?

January 29, 2015 Margaret Jean 3 Comments

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.

Yours truly

Margaret Jean.

The doctor repeatedly tells Chris he must walk. Chris won’t. This is a caregiver’s dilemma.

Because I know he should exercise? But I also know how precarious his health is.

He could keel over any moment. He could die anywhere. In bed for instance. He could die while out and about. He could die in the kitchen getting a sandwich.

But he looks strong. Like his father, he has a big chest and thick rounded shoulders, a brute of a back.

Although his illness has reduced his size somewhat, it has not diminished the man.

His sense of humour is still keen, and he still has enough of a temper to direct a spate of comments at another driver, or people on TV–a politician or a football coach.

Keeping that powerful inner man intact concerns me more than his physical health. Do other caregivers feel that way about their ailing charges? Or is it just me?

After all, if the best cardiologists, and his cardiologist is one of the best, cannot cure him, then far be it from me to try. So I feed him carefully, help him keep his appointments and encourage him to stay calm and keep moving.

Which is why, when I am perfectly capable? If he offers, I will lie in bed and let him get me a cup of tea. Or make myself stay at the computer when I hear him hobbling around in the kitchen and let him get his own sandwich.

The risk I take when I force him to move like this? Is that it could be the moment in which his body succumbs.

There is a horrible guilt associated with even the possibility of this. But he does need to move. And because of the pain, he won’t unless hunger or need drives him.

Should he succumb? The only comfort I would have to offer myself is this: probably he could have been asleep and it would have happened anyway.

I have to believe that. Or I would never let him leave the bed.

Yours truly,

Margaret Jean.

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.

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.

This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.