Category Archives: caregiving

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.

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.

Caregiving: Where the Story Begins.

When we were married, it never occurred to me that one day I would be his caregiver!

We were married late in life.  Chris worked in sales, had three children and I was a twice-divorced single mom with three teenagers.  I worked as a dispatcher in Cablevision, making union wages.

Over the years we changed residences and jobs often.  The kids flowed between parents and our lives were fairly chaotic.
In 1991, Chris was diagnosed with diabetes.  We had our own businesses then, but it became obvious a change was needed.  I went to work for the government in Vancouver.

In 1993, still in sales, he had his first heart attack.  He’s had angioplasties almost every year since.

In 2000, Chris started a painting business.  In 2004 the business was booming and we bought a big old house on half an acre on Surrey’s Panorama Ridge.

In 2006 he had open heart surgery.  In 2012 after a brief road trip he had two heart attacks in less than thirty days.  An experimental bypass followed four months later.

The stripping of veins from his legs to use for the bypass set Chris back a lot.  Walking continued to be painful making it difficult and then impossible for him to assess and negotiate jobs with prospective clients.

We downsized again to a small apartment close to all amenities.  In mere months our annual gross income plummeted.  Like many other people who are struck by disease or disaster, we face new challenges every day.

This blog is about how we choose to face those challenges.

Yours truly,

Margaret Jean.

Caregiving: Life is in the Now

My husband thinks he is going to die.  This Friday.  On the table.  Having an angioplasti.

He hasn’t said so, of course, but he’s hinted rather specifically.

If things don’t go right on Friday,  he worries.

They will.  I try to sound reassuring instead of impatient.

But if they don’t..  he begins again.

Then everything we’ve been talking about for the last twenty years will fall into place, I say.

Heartless of me, perhaps, but then we’ve been having this discussion since his first heart attack in 1993, since his ten or twelve angioplasties, since his open heart surgery in 2006, since his experimental bypass in 2012.

And looking at that history?  I realize I have been a caregiver of sorts for most of our thirty year marriage.

I just want to enjoy the time we have left.  Live in the present.  Not the future or the past.

Because after all these years, I can’t help but be aware of the fact that I am a widow in waiting.  And a guilty part of me does look forward to a life where I will not be second guessing anyone, where I will be the focus of my day, my money, and my life.

But that is not my focus now.  My concern now is to get him in and out of that operating theatre with confidence.  So I’m going in absolutely one hundred percent positive that everything will be fine.

History repeats itself, right?  Pray God it does tomorrow, too.

Yours truly,
Margaret Jean.

A Caregiver’s New Year’s

Happiness is not something that occurs on its own when there are no bad things happening.  It is our ability to find joy amidst the tragic, to add colour and life to the mundane, to find meaning in maintenance.   Suzanne Clydesdale.

 Chris brought in the New Year saying the rosary.   Around twenty after twelve I woke.  Looking at the time, I turned and hugged him and said, You made it!  You made it to 2015!

People often express sympathy for me, caring for a loved one who is leaving this world.  Sympathy is not necessary.

You  see, Suzanne Clydesdale is right about finding “meaning in maintenance”.  Being able to take this journey with someone you truly care about?  Is a gift, not a burden.

Not that there aren’t problems or concerns.  But there is growth, there is recognition.  There is a new and fresh perspective.

I see how precious my own health is.  How much it needs nurturing.  How a healthy body is a key to a happy and productive long life.

I realize how forces beyond our control—genetics, environment and other external forces—can change our lives in an instant.  And that realization fills me with knowledge of the beauty and frailty of every moment of our existence.

I see how love encourages, refreshes, comforts and challenges us. How words and actions, no matter how humble, how common-place, can make an amazing difference in someone’s day.

Dying is a journey, and I am watching someone bravely advance in that journey day after day.  It is my privilege to be at his side.

If I did not want to be here, then I would need your sympathy.