Category Archives: spousal caregiving

Chris Florczak, Mathew Court, spousal caregiving

Letter to Chris

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Dearest Chris,

As of yesterday, it has been three years since that fateful day when my cell phone rang and I answered, and you said “Come home, Marg.  Come home NOW.”

I left my groceries on the checkout counter and rushed home.  One last kiss and you were gone.

I wasn’t sad then.  I felt oddly congratulatory.  As if you had escaped.  You surely found freedom.  Freedom from pain, from the physical limitations which your illnesses imposed upon you.

You were Chris, bigger than life and always wise and funny and “up” for us.  Right to the end.

I couldn’t grieve for you.  You were off on a whole new adventure, a new realm.  It was we who found ourselves poorer for your passing, our lives less brilliant and comforting.  Our ration of love depleted.

It’s hard to believe sometimes that three years have passed, and in other ways, it seems like a lifetime ago.

I will always think lovingly of you.  How your greatest pleasure was taking care of people, whether it was our children and grandchildren, or the tenants at Mathew Court, or the kids who worked as painters for you.

It used to annoy me that you would dig into the garbage bin to collect and give refundable bottles to the homeless.  But I was someow proud, too, of that and of how you came with me to help at the Sisters of Atonement, making and serving hot dinners.  Or spreading butter and the nun’s special blend of fish or stale cheese slices or peanut butter on bread for lunch time sandwiches in the big soup kitchen.

I never sit in a church pew without remembering how you took my hand in yours and held it on your thigh.  If I close my eyes I can still feel the smooth fabric of your slacks, the warmth of your body heat.

Whenever we went out, you always made sure we had fun.  You could really dance.  Before your arteries shut down, before your legs went, you danced up a storm.  Jive, waltz, polka; it made no difference.  You were graceful and strong.

You loved NFL football and world history and crime TV.  You loved us.  You loved me.

And that’s a gift that I will always be grateful for.  A gift that I will take to my grave, regardless of where my journey may take me now.

And for that great love, I thank you.  More than I can ever say.

Love always,

Marg.

caregiving spouses, spousal caregiving, terminally ill and work

Spousal Caregiving: The Most Stressful Situation?

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When over 6,000 Canadian caregivers were asked to rate their stress levels, those caring for spouses ranked themselves higher on the stress scale than those caring for children or parents.

In fact, those caring for parents ranked themselves lowest.  Reading other caregiver websites, I can tell you this is not always the case!

And there are exceptions to every rule.

Younger, employed persons found care giving more stressful in general with the pressures of the normal duties of work and home being compounded by the added duties of caring for someone.

While planning ahead is given as a stress-reliever, we all know from Kamla and Gemma’s articles that this is not always possible.  These situations can descend on us in a moment and change our lives forever.

Other tips?  Get informed not only about the illness the loved one has, but also about care giving.  Find support groups and respite resources in your area.  Take time to take care of yourself.  Acknowledge your feelings.  Ask others to help.

Accept that you are not always going to be happy in your situation.  Once you do, dealing with those feelings will be easier.

In my experience?  People of faith have an advantage in finding acceptance of their situation.  As one spousal caregiver put it:  Once I learned that I had to relinquish this control that I thought I had over our situation, to God, it took a lot of the pressure off.

Yours truly,

Margaret Jean.

To read the source articles go to:

http://www.reuters.com/article/2015/05/26/us-intergenerational-support-stress-idUSKBN0OB2FJ20150526

http://www.focusonthefamily.ca/marriage/midlife-marriage/spousal-caregivers-when-chronic-illness-crashes-into-your-marriage by Todd Foley.

caregiver challenges, caregiving, spousal caregiving, travel with chronically ill

To Travel or Not To Travel? The Caregiver’s Question.

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12 September, 2014

 I’m trying to plan a trip for us to see his son and my sister and brother-in-law.  Chris wants to go because it’s probably the last time I’ll get to see everyone.

I’d like to honour this wish, but there are issues.  To do so we’d be changing flights in two large airports, flight changes involving wheelchairs and luggage and food appropriate to his diet.

And once we get to either of the two destinations he’ll need time to recuperate; days that he will want to spend in bed.  There will be no bath bench, and it’s unlikely there will be six extra pillows to keep him fairly upright at night, and or chairs with arms to help him hoist himself up.

These are younger people we’ll be visiting—healthy jogging, hiking types.  The homes will not be geared to the needs of a person with mobility issues.

And then there’s the airfare.  In his condition, he does not qualify for travel insurance, and because of his condition, since I am travelling with him, neither do I.

 And if he has another heart attack or what the medical professionals refer to as ‘an event’, the trip will be off and we’ll be out that money.

Taking all this in, he has a suggestion.  Let’s drive down.

To Arizona and California from our Vancouver, BC home?

This is a man who no longer has the energy to drive to his favourite nearby US location, Tulalip, Washington.  It’s a two hour drive one way, and last time we went?  He turned around half way there because he was so tired, he just wanted to come home to bed.

So now we’re going to make it to San Diego or Phoenix?

I think his son has to come here, and my sister and her husband, too.  I think I should ask them.  So he can say his goodbyes.

Yours truly,

Margaret Jean.

caregiving spouses, ethics butts and caregivers, physical aspects of caregiving, spousal caregiving

Caregiving–Hard on the Butt.

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Come and sit with me, Chris laments.

I never dreamt caregiving would be hard on the butt.  Or that it would sometimes result in unusual anxieties.

The kitchen table is not cleared of the breakfast things, the garburetor is full of peels and rinds from this morning’s juice making, and the other half of the sink is full of soaking pots and bowls.  This makes me anxious. I like to have everything nice and tidy before I do anything else.

As a child I was taught that work had to be finished before such pleasures as reading, watching TV or playing could be indulged.

So as an adult,  I like the dishes done almost before we leave the table.  If I get up from eating to make a cup of tea, I will take dishes to put in the sink to soak, or food to put away in the fridge.  I might tidy the kitchen or wash the few things in the sink while the water is boiling.

And this housework ethic if you could call it that, absorbs so much of my thinking now because I feel my busyness conflicts with caring for Chris.  I know Chris wants me to sit beside him and watch endless hours of TV.

 Sitting is hard for me.  I like to keep busy.  It’s like my body isn’t happy at rest.

I do housework when I can no longer sit.  I put in laundry before extensive TV viewing so that I have an excuse to get up and move about; change the loads.  Fold the clothes.

I also confess to blogging, journaling, and computer solitaire. Yes, I’m sitting then, too—but sitting and doing.

Chris is resting.  He has switched off the television: Not even a “B” western, he says irritably.  More like a C minus. 

Hopefully, he’s making up some of the sleep he lost last night.  The breakfast of oatmeal and blueberries, toast and fresh orange juice should help put him to sleep.

The sun shines in.  For now, all is well.  Except in my kitchen.

Yours truly,
Margaret Jean.
caregiver challenges, caregiving, spousal caregiving

Spousal Caregiver’s Dilemma: Unpredictable Spending.

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I think I’m hoarding.

Although research tells me I’m not.  Symptoms of hoarding include:

  • acquiring excess

  • an inability to part with it.  (I have given away much in care packages to others who are in more straitened circumstances than I find myself.)

  • unsanitary conditions (never in my place) and

  • clutter–(only occasionally in my office, and that’s papers!)

So I’m not technically hoarding.  But I don’t know when Chris is going to succumb. But I do know that when he does?  Financially I’ll be, well, let’s just say less than comfortable.

So I’m storing up staple items for when that day comes.

I’ve never had any trouble getting a job, but at my age?  Let’s just say employment options are limited.

But I tell myself there will be less need to work.  Less food consumed.  Fewer commodities required.

And I am resourceful.  For example, I’m an excellent cook who has always enjoyed the challenge of making a tasty meal out of just about anything I find in the kitchen.

So why is it so hard for me to make a list and buy only what is on it?  Do other women in a similar position find themselves doing the same thing—buying ridiculous amounts of food and other household staples?

How common is it for women about to become widows, to stock up?  Does it happen only in income-restricted families?

I wonder if the opposite is true; if the fear of being income-restricted after the spouse’s death leaves some women unable to spend money, even for necessities?

I need to introduce a new mantra to my grocery shopping days:  I have enough.  I have plenty.  How fortunate I am to have enough.

Yours truly,

Margaret Jean.

Asperger's, caregiver challenges, caregiver dilemmas, housekeeping bedsitting and caregiving, spousal caregiving

Caregiver More Housekeeper or Bedsitter?

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Some days?  As a caregiver, I confess I’m a lot more housekeeper than bedsitter.

I do believe that cleanliness is important when someone is chronically ill. And I like order.  Order calms me.  And I feel it adds to the patient’s feeling of serenity when his surroundings are clean and organized.

And, being a caregiver, I don’t get to do much walking, exercising, playing games these days.  I like the movement in washing floors, folding laundry, sweeping.

I asked my friend, Alma Vaugeois about this.  Alma, a clinical counsellor, told me that’s one reason some people may find comfort in housekeeping tasks.

There’s a release of physical tension, Alma, also a Yoga instructor, noted.  Your body’s moving, stretching, reaching. 

I confessed to Alma that I had been washing the tile floors on my hands and knees ever since I found out that doing so made me stiff and sore.

To me this means those muscles need to be used, I said in my Asperger’s way, so now I make a point of extending my arms and torso, really working them when I wash the floors.  Alma nodded.

My kids think I’m crazy, I added.

Alma laughed.  Housework is very physical, she said.  And you can focus completely on the task on hand.  This is mentally freeing as well. So for you, doing the floors or doing any housework gives you both a physical and mental release.

I have always liked the feeling of a clean and tidy home; polished furniture, clean kitchen, flowers on the table.  But after talking to Alma about it?  I’m going to enjoy the pleasure I now know they give me.

The important thing to remember and honour?  Is how much Chris wants me by his side. As things get closer to the end, I know I’ll be doing less housework and more bed sitting.

To learn more about Alma Vaugeois, please go to:

www.almavaugeois.com

Yours truly,

Margaret Jean.

 

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

Precarious Health and Exercise: A Caregiver’s Dilemma

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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.
caregiver challenges, caregiving, caregiving spouses, spousal caregiving

Caregiver’s Solution: An Empty Bird Feeder.

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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.

caregiver support for working spouse, caregiving spouses, spousal caregiving, terminally ill and work

Caregivers: When the Terminally Ill Spouse Keeps Working.

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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 challenges, caregiving, caregiving spouses, spousal caregiving

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

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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