All posts by Margaret Jean

An Undiagnosed Autistic, I discovered my situation when my grandson was diagnosed and my daughter phoned me and said, "Mom I know what Dustin has, and you and I have all the symptoms!" I grieved the loss of the hope of being 'normal'. But later I decided that I was my own kind of normal. I write to encourage other autists and to promote the unique advantages of being autistic..

Ten Best Ways to Acknowledge the Family Caregiver.

Nowadays many families experience a situation in which one or more members find themselves in the position of caregiver.  And it’s Christmas.  What better time to offer the gift of a helping hand.

Most people want to help, they just have no idea what to offer in view of their own time constraints.

If you really want to make a caregiver’s day, here are ten ways to do that.

  • Before you call with offers of help, check your own schedule so that you know before hand when you can deliver on these offers.  Never arrange for deliveries or visits during a caregiver’s respite time.

  • Be specific. If you are sincere, saying If you need anything just call me, is not helpful.  Decide what you are willing to provide: time sitting with the patient? Meals?  Baking? Help with housecleaning or other chores?  Running errands?

  • Bring or send flowers. Flowers brighten up any space, cheer up a sick room, and are a beautiful reminder that somebody loves you.

  • Phone first.  Arrange the visit for a time when you can stay at least half an hour.  Do not stay more than one hour. Visit with the person being cared for to take that responsibility out of the care giver’s hands.

  • If you are the care giver’s friend, stop and say a few words to the ‘patient’, and then continue your visit in another room with the caregiver.  This allows the caregiver to vent if necessary.

  •  If you live far away or are busy building a career and can’t help physically then send flowers, money or a gift card.  Or arrange for a housekeeping service to come in once a week or twice a month.

  • Express appreciation. If you’re related to the person being cared for?  Be grateful.  And show it.  Remember that old saying?  But for the grace of God… Praise is sincere and nice to hear. It costs nothing and can make someone feel much better.

  • Be reliable. If you say you will help in some way, do so and do it at the time you stated.  Caregivers are often weary, sometimes lonely and always overwhelmed, so be the bright, steady star in their lives—show up when you say you will.  Bring what you said you would bring.  And along with it?  Your cheerful, smiling face.

  • Keep in touch. Caregivers often get left out of the family loop because they can’t get away to visit with relatives and friends, attend family events like birthdays and anniversaries and even casual get togethers.  Phone them.  Text them.  Keep up with their facebook page. Let them know they are not alone in this.

  • If you’re internet savvy, offer to do on-line research for them. Maybe they need to find the palliative care/hospice alternatives in their community, or the parameters for these kinds of care.  Maybe they’d like to know more about certain medications, or even caregiver associations or Red Cross equipment depots in their area.

  • Keep your own troubles away. Caregivers have enough to bear. If you’re visiting because you want a sympathetic ear, stay home. Find a counsellour or a different friend to confide in.  Bring only your best face to the care home.

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.

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.

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.