Category Archives: caregiver challenges

Spousal Caregiving: Hair-raising Adventures at the Wave Pool.

Over the last two years his legs have become very painful.

Deb, his daughter, took him to the swimming pool to exercise his legs and feet.  He loved it.

I was hoping this would become a regular father-daughter outing, going to the pool and then to the Senior’s Centre for lunch, but no such luck. Twice. That was it.

So we planned to go to the pool together.  But I had to get a bathing suit.  This was a a bit of an undertaking so Bev, my oldest daughter, came with me.  She approved something that looked more like a mini-dress than a bathing suit.

They have a family change room, Chris informed me.  I could not get my head around how it might work to have men, women and children all changing in the same room.  Because of my Asperger’s, it made me anxious.  I tried not to show it, but I admit, I did keep asking about the family change room.

We went once. Exhausted from the walk from the parking lot to the change room, Chris asked me to use one of the wheel chairs to wheel him to the far side of the pool.

When we came out of the change rooms, Chris seemed surprised to see parents and small children splashing in the waves.

It’s usually just seniors, he said, adding, And they don’t usually have the waves on when Debbie and I are here.

It is a wave pool, I noted.

The waves were not buoyant, like in the ocean.  Instead they nearly knocked us down.

Shortly after we got into the pool, they announced that for the next fifteen minutes? The waves would be turned to their highest thrust!

Some nine and ten year olds rushed over to where we stood clinging the edge of the pool nervously.

This is where the biggest waves come!  one freckle-faced boy said ecstatically.

We spent the longest fifteen minutes of our lives clinging to each other and the edge of the pool, being thrust unsteadily backwards with each wave.

In desperation I looked around and saw a bench around a pillar in the pool, about ten feet away from us,  where we could sit out the waves.  But I didn’t dare try to move Chris there.  What if he fell?

We haven’t been back again.  But I’ve since learned that the seniors’ swim is weekdays 10 to 11 a.m., without waves.  That’s when we’ll go for our next swimming adventure.

Yours truly,

Margaret Jean.

Caregiver’s Dilemma: Is The Patient Playing It Up? One Caregiver’s Thoughts.

I confess there are times when I think Chris is playing it up.

The heavy breathing, the grunt of exertion as he lifts the water jug into the fridge.  He leans heavily on the counter, his breath coming almost in gasps.  Finally his breathing settles down.

He asks me to carry his mug of coffee into the bedroom for him, asks if I’ll make a cup of tea and join him?  I’m thinking he can carry his own mug, and I have work to do.

Then I realize how very ungracious that thinking is.

The man has severe coronary artery disease.  His cardiologist who has had extensive experience with this condition has put in writing that it is the most severe and pervasive he has seen in his practice.

That was over a year ago, and the only thing that has changed is also documented:  it has gotten worse.

So even if the man wants to ham it up a little, who am I to judge?

Maybe he just wants me to have the audible of what’s going on inside him, of how he feels as opposed to how he seems.

This accompaniment is not available to others, only myself, and I wonder if I shouldn’t feel somehow privileged to be the only one allowed this very personal insight into his world.

 Or maybe he is just playing me.

 I’ve come to realize it really doesn’t matter.  Whether it is a true reflection of his feelings or just a show for sympathy is irrelevant and unknowable.

All I can ever know looking back from one day in the future, will be how I responded.

Did I respect his pain?  Accept the way in which he has chosen to handle his condition?  Allow him dignity in the face of his body’s response to his illness?

Did I give him the comfort he reached out for?  Offer the humour that turns a tough moment into one where he ends up cajoling me?

In this journey we are taking here together, I have come to one irrevocable conclusion: I must always accept Chris’ outward manifestation of his discomfort as valid.

And respond accordingly.

Yours Truly,

Margaret Jean

Post-Valentines Reflections of a Caregiver.

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.

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.

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