All posts by Margaret Jean

An Undiagnosed Autistic, I discovered my situation when my grandson was diagnosed and my daughter phoned me and said, "Mom I know what Dustin has, and you and I have all the symptoms!" I grieved the loss of the hope of being 'normal'. But later I decided that I was my own kind of normal. I write to encourage other autists and to promote the unique advantages of being autistic..

Spousal Caregivers: Grieving Life Changes?

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/

Yours truly,

Margaret Jean.

Rice-Christians at the Bird Feeder, Caregiving at it’s Best.

As his wife and now his caregiver I’ve always noted that Chris gets pleasure from simple things. One of these is old movies.

One of his favourites is Keys to the Kingdom, starring Gregory Peck.  When Peck, a priest, gets to his mission in China, he finds that he has no parish members.  He is told the people will only come if he gives them rice.  Peck stoutly replies that he doesn’t want any ‘rice-Christians’ in his mission.

These days another pleasure for Chris is the bird feeder.  We chose a little cedar model.  Then came the choice of birdseed.  It seemed expensive, but it was no mess and recommended, so we bought it.

I rigged the birdhouse up, put out the seed and waited.

The next day a single bird, brown and grey with some white markings, came and sat in the Japanese Maple next to the birdhouse.  After a thorough visual examination, he finally landed and began to peck at the seed.

He left not long after, much to Chris’ disappointment.  But later that day, Chris ventured out to the living room to have coffee.  Marg, Marg!  Come and see! he called.

Our ’Scout’ as we had dubbed him, had come back, bringing another with him.  Together they dined.

The next day they returned, and this time another bird with orange markings trailed along. There was some fluffing of feathers and a bit of pushing and shoving at the trough, but Scout held his ground.

In the end, they all ate to their contentment, more birds joining in, some taking sunflower seeds or peanut halves back into the branches of the maple tree to break down and eat.

Chris watched all this with interest.  It’s their hangout, he said proudly.

If I had wondered why Chris wanted a bird feeder, now I knew.  All his life, Chris has helped people: giving them jobs, helping them with housing, even going to the Sisters of Atonement and making sandwiches for the homeless.

Now that he’s infirm, none of that is possible.  But these small creatures, Scout and his friends, depend on him. That allows him to feel generous.  It lifts his spirits.

In May we were gone for two weeks.  We came back to an empty, abandoned bird feeder. We put feed out right away, early in the morning, but in spite of repeated checking, we saw no birds all day.  Chris came to the dinner table disappointed.

Rice Christians, Chris said, as he unfolded his napkin.  That’s what the little beggars are.  Rice Christians.

Yours truly,

Margaret Jean.

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.

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

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.

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.

Caregiver: Planning for Life After

One of the necessary evils of being your spouse’s caregiver is having to also be the one who plans for the ‘after’ life, for life after their departure.

Chris wanted to be part of this procedure partly I think to put his mind at ease.

 In Canada, government pensions including the payout of the one-time death benefit are managed by a department called Services Canada.  Yesterday, Chris and I went to their offices.

We learned what will happen in the likely case of him dying before me.  Although, honestly, I could go first—it is never a given.

 However, according the agent at the Services Canada office, if I am left on my own my financial resources will be pretty skint.

 I’ll have little more monthly income than my rent.  The actual dollar figure is fairly scary – such a small number.

And yet, I can’t help but feel that I will manage.  I should get called back to work for tax season every year.  And the money I make in this three month period is sufficient to pay my rent for the year.  If I save it, and use it for only the rent, I will be perfectly fine.

 You see, because my income will be low, in my province of BC, I will have no medical premiums to pay.  I will also get a good tax refund every year.

The tax refund will cover my car insurance for the year and since my car is paid for, I only have to shell out for gas and maintenance.  And since we live so close to all amenities including the buses, these expenses should be negligible.

 And that means my pensions should easily cover everything, which seems incredibly generous to me.

 Chris was shocked.  I told him not to be. I will be fine.  Just fine.

Yours truly,

Margaret Jean.

Caregiver: Your Diagnosis is Also My Dilemma.

With this diagnosis, the admission that all that can be done now is medicate to make him more comfortable in a deteriorating condition, his world has radically altered.

And shock waves reverberate in mine.

For twenty one years, ever since his first heart attack, this man has told me every day that he is dying.  Over the years I have come to take it lightly.

We’re all dying, I might reply.  Or:

For someone who’s dying, you’ve outlived an awful lot of people.

But now I must take this notion seriously.  No more light hearted bantering.  He will grieve. His response to this diagnosis will be an attitude he owns.  It is not for me to dictate or project.

And as for me?  As selfish as it seems, I must be practical. Find out exactly how much money I will have in pensions each month, make projected budgets, determine which things need to be bought out or paid off now while there is still another income coming in.

There are funeral expenses.  How much will that be?  Will the life insurance cover it?  What about our debt?

He has agreed to cremation but I know in his heart he wants to buried and we do have the cemetery plots.  Will I be able to afford to bury him and still have enough to tide me over for the few months before the survivor’s pension and the income supplement kick in?

I need to be prepared.  And to help Chris prepare.  God help us both.

Yours truly,

Margaret Jean

Caregiving: The Diagnosis.

They wheeled Chris from the operating theatre to the hospital ward, Friday after the angiogram. I was waiting anxiously to hear the results of this procedure where they pump dye through your arteries to check for blockages.

Chris looked pale and stricken.  There’s nothing they can do for me, he said.

And I realized that health wise?  He’d just hit a brick wall.

We’d known this was a possible outcome.  When his kids had advised him against the probative procedure, he’d countered with: So what am I supposed to do?  Just sit here and die?

I wanted to burst into tears, to give in and let it all wash over me.  But one look at the grim determination on his face, and I knew.  The bad news was his to deal with.  I could not be the one to let go.

 We’ll have prawns for dinner, I said stupidly.  What’s for dinner had been the topic before he went in for the angiogram,

Then I got myself together and said; You’re here, you’re alive, and you’re coming home with me.  That’s all that matters now.

But the news left me stunned.  In my sixties, I have no job, and very little income on my own.  We have debts, and our income is greatly reduced due to Chris’ illness.  Life insurance?  Meagre at best.

As I helped him dress and wheeled him down the hall to the parking lot, I worried about how this news would affect him.

After all, if I was in shock,  I couldn’t begin to imagine how Chris felt.  I only know that whatever lies ahead, I need to be strong for him.

Pray God I am up to it.

Yours truly

Margaret Jean.

Perfect Residence? A Caregiver’s Definition.

56th Ave-even in the rain it was beautiful

Chris has been talking about our last residence quite a lot lately, a beautiful place where mornings we’d have breakfast looking out over lawns and hedges, a sweeping drive.

He was saying it was the perfect house for us and he wishes we could buy it.  But as a caregiver?  I disagree.

A white bungalow, yes, the house was small and so-o-o perfect.  But with it?  Half an acre of green lawn and wide, curved flower beds requiring considerable maintenance.

Off to one side a pathway through some magnificent firs led to a little white cottage which became my office. From here I could view wisteria draped  trellises, and hear water ripple in the fountains

It was a very private, very spiritual place.

But the owners came back sooner than they had expected.  It meant an upheaval; moving sooner than we had anticipated.

Now the house is for sale, Chris told me at dinner.  for about $800,000.

 Right now we rent a small apartment which is more suited to our situation.  Somehow, I suspect it will be even more so in the future.

Take the bedroom here for instance.  We wall-mounted the TV, there’s an ensuite bath with a shower.  And there is an outer door that closes all this off from the suite.

This feature allowed him to rest quietly while we moved.

I also have a den where I can write in privacy.  It isn’t a cottage in the trees, but on the other hand, I don’t have to go outside, leaving Chris alone.  I can work on the computer and hear his every move and call.

The living room and dining room are not spacious, but with Chris’ limited mobility?  It’s good the space is small.

And since the reduction in income because of Chris’ health, our pensions cover not only the rent, but all the basics.  Driving is limited.  The lab where he gets his blood tests?  Right across the street.  Really, as a caregiver, what more could one wish for?

 Not a six figure mortgage.

Yours truly,

Margaret Jean.

Caregiving: Still Ambulent, Respite’s Where You Find It.

Wednesday August 6.

A caregiver’s respite is not always a person.  Sometimes it’s a place.

I love thrift shops.  I found a Goodwill Shop just across the 88th Avenue overpass from the Tulalip Casino.
Poker is a pastime Chris can still enjoy in spite of the pain in his legs and the trouble he has walking.  There is little exertion involved.  We drive there and he walks a very short distance, then sits for hours.  The cards keep him completely focused for a while.
Usually Chris comes out ahead, and I have no interest in the slots, so I leave him for a couple of hours and go browsing.  Lose myself in thrift shop debris.
Knick knacks crowd the shelves like society’s detritus, faded fairies and angels, capricious kittens and puppy dogs, slightly worn picture frames, various vases and dolls showing various stages of wear. Cheap imitations of Dresdens and Doultons.
After poker, Chris comes to meet me.  He picks out a white-bearded fisherman with joints at the knees.  Obviously meant to sit on a shelf.
I buy another ten books.  He’ll be in surgery soon, so I’ll get to read them in hospital while he sleeps. And they are cheap here; less than half what I’d pay in a Canadian shop.

The white bearded fisherman will be on the bookcase to welcome him home.  An omen, if you like, that Chris, too, will still be here when his hair turns white.

When we made our purchases?  I guess we were both thinking of his Friday surgery.

Yours truly,

Margaret Jean.