Category Archives: spousal caregiving

Caregiver’s Solution: An Empty Bird Feeder.

One incentive to get up and about that Chris cannot resist is an empty bird feeder.  He feels about those birds like he feels about his children.

Here comes Scout, he says, as a lone little bird perches on the cedar bird feeder.  ‘Scout’ flits to one side, then the other.  Finding both empty, he cocks his head and looks straight at us.

We are sitting in the living room, Chris in his wing back chair, me on the sofa, observing this ritual through sliding glass doors.

Now he’s upset, Chris says.  And indeed, the bird pecks at the empty wooden floor of the bird house then turns to look at us again as if to say, Where’s my dinner?

When neither of us gets up, Scout pecks once more at the barren floor and then flies away in disgust.

I make no motion to get up and go to the bag of birdseed.

He’s telling the guys back home, forget it, they’re deadbeats, Chris says.  I chuckle and nod agreement.  A few minutes go by.

I guess we need to fill it up before he comes back or he’ll really be upset, Chris hints.

I guess so. I curl my legs under me on the sofa.

Finally Chris gets up, grunting and helping himself with the arms of his chair and his cane.  Unsteadily he makes his way to the bag of feed in the corner by the door.  He opens the door and manoeuvres clumsily through to the patio, then balancing himself without his cane, he lifts the roof of the birdhouse and pours in the seed.  It takes two trips before he is satisfied they will have enough for awhile.

By the time he returns the cup to the bag of seed for the last time, he is perspiring and leaning heavily on his cane.

Do you want to lie down now?  I ask, rising.

No.  I want to wait and see if those little beggars come back, he says grinning.  I help him sit.

Was it mean to make him do that?  I don’t know.  How can I know?

Was it harmful or dangerous for him to do that?  Again, I don’t know.

What I do know is that sitting for hours on end, lying in bed most of the day, is not good for the circulation.

And the doctor says, he needs to exercise.  And I have a feeling Scout would second that notion.

Yours truly

Margaret Jean.

Caregivers: When the Terminally Ill Spouse Keeps Working.

As his caregiver, I was pleased but a little concerned that in August of 2014, Chris still ran his small painting business.

He handled inquiries, did the appraisals, got the subcontractor bids and dealt with customer kudos and complaints.

I worried about the stress, but when I asked the doctor about it, his answer was surprising.  He said the business was probably what keeps Chris going.

Research indicates that loss of interest in a person’s work or hobbies is one of the major signs of depression in the chronically and/or terminally ill.

This wasn’t the case with Chris.  On the contrary, his mental and emotional well-being were certainly bolstered by the small business he’d built up over the years.

Though he could hardly walk to the kitchen some days, still he would summon up the energy to meet with aclient and sell the job.

Chris enjoyed the clients, the paint store reps and lively discussions with the subcontractor.

An important decision to relieve the pressure that came with the business?   Getting rid of the one big client who was also the one big stressor. After that, the painting business became purely pleasurable for him.

 Usually I drove, due to his health.  Afterward, he’d be so energized, we might go for breakfast, or take a run into the States for gas or pick up his meds at Costco. 

The doctor was right: starting out with a purpose? That’s what kept Chris going.

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 Valentine For Caregivers.

This is a great version of My Funny Valentine.  Look how this girl impresses the judges.

If you’re a caregiver?  Or ever have been? You’re impressive, too.

Whether you’re looking after a loved one who’s terminally or chronically ill, a drug-addicted child or their children, a handicapped family member, a spouse or parent with dementia, whatever the circumstance, you amaze me.

Reading other caregiver blogs, I am overwhelmed by the grace, humour and resourcefulness you bring to your charges.

You do know, don’t you, that yours is the greatest version of love there is?

No greater love hath any man than this, that he give up his life for his friend.  John 15:13

That’s you, caregivers.  No matter how much you protest as you struggle to hold on to your life–your marriage, your job–or even just little bits and corners of your life–your hobbies, your outings, your friends–that verse describes your love.

Your resourcefulness, your strength, your humility are recognized.

Happy Valentines Day!  God loves you. Because of you, our world vibrates with love and compassion.

Yours truly,

Margaret Jean.

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.

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.