Category Archives: caregiver challenges

Caretaker, Caregiver?  

The next 3 posts are guest posts from Gemma Tammas, a continuous narrative in three parts.

Enjoy!

by Gemma Tamas          2011 October ©

I am a wife, mother, grandmother, and great grandmother.

My career started when I was only eighteen years old looking after my husband, and soon, taking care of my two boys. All of that without having to take a course and study for; it was simply ‘learning on the job.’ But, if I would have given a test, ‘an aptitude test’ called nowadays, I would have passed, because all you needed was love and I had plenty of that. Through the years while ‘training on the job,’ I made many mistakes, too many to count, but my love never suffered by it, my passion to give unscathed.

Now, in my twilight years, I am still taking care of Tom, my husband close to sixty years, as he fights his many sicknesses, with great determination, as he fought his way through many obstacles and hardships during his lifetime. Our marriage was not a perfect one but we are together with a strong bond, called love, forever.

It started four years ago when one morning Tom woke up with high temperature, shaking feverishly, talking nonsense, but still he had enough strength or stubbornness to insist to drive himself to the Vancouver General Hospital. It would have been futile to argue with him to go to a much closer one. Swaying on his feet, jingling his car keys in his hand he dropped them and fell into my arms. With my brother’s help we lifted him into the car, where he slumped down. By the time we arrived at the hospital thirty-five kilometers away, he was unconscious and stayed that way for three days. During that time he was in isolation as the doctors didn’t know if he was infectious until they put him through rigorous testing, while battering me repeatedly with their questions. Was Tom drinking? Was he an alcoholic? I was shocked, offended by their interrogations as Tom never drank, maybe a glass of wine with his meal.

When his fever was under control and his tests showed no infectious disease, he was shifted to the geriatric ward. I spent my time by his bedside from morning till night. Every morning he greeted me with stories about the happenings on the ward the previous night. “Do you know,” he mumbled, “that old Chinese woman in the next bed is a drug dealer conducting her business on her cell phone at night, and another was murdered. Last night.” He whispered in my ears. “Two men, dressed in black, came and killed her.” His eyes filled with horror. “You have to get me out of here,” he begged. “I’ll be the next one, you’ll see.”

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

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: The Decision Making Process Up at Three, Watching True Crime TV.

When you are caregiving someone who is very ill you feel as if even the slightest decision might carry the direst consequences.  And there are so many decisions to make!

Chris had been lying in bed awake for most of the night.  I finally got up with him about three.  Made him a coffee at four.  Watched true crime TV with him til five.  Helped him change his T-shirt wet from sweat, sponged him off, refilled his water jug by six in the a.m.

He would sleep, but he is coughing.  Coughing up phlegm.  Coughing himself awake if he happens to doze off.  He wants to try to sleep.  I am wide awake.  I step out of the room.

On this particular night, I find myself flustered.  Unable to make even the simplest decision.  Like whether or not to go in and close the bedroom window.

Experts at the Ethics Resource Centre online give six steps in decision making.

  • Define the problem.
    • Okay.  Chris is coughing and he needs sleep.
  • Determine a number of solutions.
    • Hmmm.  Cough syrup, let him be, change his position.
  • Evaluate these solutions to find the best.
    • Well, let’s see:  Cough syrup may interfere with his meds.  Changing his position could wake him up.
  • Make the decision:
    • Got it–leave him be. This solution is neither intrusive nor likely to affect his meds.
  • Act on it.
    • Okay, that means go do something else besides standing in the hallway listening to him breathe.
  • Evaluate the results.
    • He seems to be sleeping just fine.

I spent a lot of time on a seemingly insignificant decision.  Stress can do that to you.

When you live with someone who is terminally ill, when you feel personally responsible for their well-being, each decision seems to carry a sort of life and death weight.

I have a lot of trouble with this sometimes, because I always need time to think things through.

What I learned on this night is this:  Based on the information above, it seems like needing time is a good thing.  I guess it’s just a question of using that time to properly address the issue.

If like me, you’d like to read more about the decision making process at the Ethics Resource Centre, please go to:

http://www.ethics.org/resource/plus-decision-making-process

Yours truly,

Margaret Jean.

Spousal Caregiver’s Dilemma: Unpredictable Spending.

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.

Caregiver More Housekeeper or Bedsitter?

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.

 

Precarious Health and Exercise: A Caregiver’s Dilemma

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’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.