Category Archives: caregiver challenges

caregiver challenges, caregiver's life after

Life After: A Caregiver Reflects…

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I have lost so much.  Not only the love of my life, but a way of life.  I confess to difficulties.  Challenges.  Sobbing through movies is the least of my problems.  I am lost.  Mentally wandering in a wilderness of change.

I make decisions.  Immediately regret them.  Rethink them.  Why am I the last person on my list of priorities?

I must give myself time.  Pamper myself a bit.  So I work and then rest.  Put my feet up.  Take my salad and cheese in my room on a tray, like my Grandmother used to do.  Eating on the bed where Chris and I had so many meals.  I can’t wait til I can eat at the table again, I used to think.  I was wrong.  I want to eat where we ate.

I go onto Facebook and find out that two people in my old business network group have become bestsellers on Amazon.  And I was the writer!  MY royalties trickle in.  I congratulate them.  There is no animosity toward them, only admiration for their success.

Would I like to be a best seller on Amazon?  Absolutely.  But I do not regret devoting my time to Chris.  That has given me peace.  The anguish I feel at being surpassed is not relevant.  To really work at writing—that I can do any time in the present or future.  To be Chris’ caregiver?  Was a limited engagement.  Immediate. Imperative.

I walk.  Even with an inflamed Achilles tendon, I have decided to park the car for the summer.  Not to insure it.  To make myself walk or use transit instead of driving.  To save money.  To think twice before zipping off somewhere.

The financial curve is huge.  Living without his pensions.  I am not complaining; but I am concerned.  I need my own space. My apartment is a refuge.

And I know this about myself:  I cannot share with a friend, as my daughter does. And I will not live with another family member—a daughter or a sister or a cousin.  I cannot be the ‘poor relation’ living off the charity of another, however kind and generous they may be.

Besides, I like solitude.  I love my home.  Memories of life with Chris echo in every facet of every room.  So maintaining my home will always be a financial priority.

Slowly with each decision, my life changes as I modify budgets, change how I do things.  I’m shaping a life on my own.

It isn’t easy.  I’ve been married since I was seventeen. Now I must make it on my own, know that I have the discipline, courage and commitment to manage my life and manage it well.

My life with Chris gave me the tools and resources I need.  I just have to use them in the best possible way.  Ah, Chris!  Miss you, Babe.

caregiver challenges, caregivers' feelings of failure

When Caregivers Feel They’ve Failed…

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This month is the birthday month of my twin brothers, Jerry, who is still with us (love you more!) and Jack, who passed away suddenly three years ago.  This post is written by his widow, Kamla.

Their two youngest children were in their late teens. Jack was in his fifties, Kamla much younger.  The couple everyone admired, they had a huge social circle.  Kamla is a nurse.  Jack was a trucker and later a crane operator. He was the youngest in our family, one of identical twins.

We all  thought he was in amazing shape for his age. Then three years ago, he coughed up blood at work one day.  Tests revealed an aggressive, advanced cancer.  He died a month later.

May 9th was his birthday.  The following (republished with permission) are passages from an email Kamla sent me recently. They are posted in honour of her love for him and his memory:

Sorry I’ve taken so long to reply!  I actually was thinking a lot about your request of an “expert” nursing point of view.  I honestly have to say I’m no expert. 

When Jack was diagnosed I felt so far removed from being a nurse.  I was so numb from my disbelief and denial that I really couldn’t function or think rationally. 

Somehow all I could think about was how devastated and hurt I was.  I could not even face what was happening and that denial has stayed with me for a long time.  It has only been after 3 years that I actually can admit to myself that Jack is gone. 

I have such a heavy sadness in my heart. I still want to believe that he will be back.  I miss him so much.  I felt such a profound loss that in the first year I couldn’t even face my life.  I went through the motions but can barely remember that first year. 

The second year I realized how I needed to be there for the kids. That at least gave me purpose.

But I still often found myself really needing to talk to Jack as I really felt that he was always the better parent and I needed his advice and help. He was such a natural person at being able to help me with decisions and putting things in to perspective. 

 This last year has found me finally able to talk to someone about my grief.  My counsellor is wonderful. We had to start with dealing with my disbelief as it is still there. 

I cannot describe how much I loved Jack.  He was like part of me and now I do not feel whole. He was my best friend, my hero, my mentor and my true love. 

 I feel that as a caregiver I failed Jack as it just all happened too fast.  My thoughts are with you and Chris and I love you both.

I feel a great empathy for Kamla.  She was no failure!  Life just didn’t give her time to fully be a caregiver.

Yours truly,

Margaret Jean.

Alzheimer's, caregiver challenges, caregiving and dementia, caregiving spouses

Caregiver? Caretaker? Part 3.

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Final Instalment of a continuous narrative by Gemma Tammas.

While we are regularly visiting his doctors, two more inflections added to his failing health. Hearing loss, and cataracts. Many times, I have to shout at him because his hearing aid is not in its place.

Only yesterday, he was telling me about a woman, who was interviewed on the news, saying she traveled to San Diego to learn about a diet. Tom told me that woman became a nun.

“That’s what she said,” he insisted and it was no point to dissuade him otherwise. It wouldn’t have changed his mind anyway.

I help him to read as his eyes get tired and every phone call fell on my shoulders as Tom’s voice became scratchy, mumbling his words.

Losing his health big time along with his driver’s license, still he is asking “How can I help you?”

When I give in and tell him what to do, he forgets it and I have to control myself not to tell him off.

His memory is failing but he still remembers our phone number in Hungary fifty years ago.

When we are going shopping, he gets out of the car and starts shuffling in a different direction. I have to run after him grabbing his hand.

My life, our life, changed.  We had to give up small pleasures like walking in the field for an hour with our dog, Heidi, going to the seashore for a stroll.

Heidi, our ten year old Rottweiler, recently became paralyzed from her waist down, unable to take only a few steps before she collapses, then I have to lift her up and put her on her feet.

Some days I question myself. Why, why me who is burdened to do all these things. Then I look at Tom, and I see in his eyes the suffering, the hopelessness, but still a tremendous willpower to live.

Then I pat Heidi’s head and I feel her energy passing through my body, and even in her crippled condition, she gives me strength to go on, to take every day as it comes and enjoy it to the fullest.

My heart aches, when I see both in reclining health, but still, I feel fortunate to able to take care of them.

Caretaker? Caregiver? I rather call myself a wife and mother.

Alzheimer's, caregiver challenges, caregiving and dementia, caregiving spouses

Caretaker? Caregiver? Part 2

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Part two of a continuous narrative by guest author, Gemma Tammas.

One morning I found Tom tied down in a wheelchair in front of the nursing station.

His head dropped on his chest, saliva was dripping from his mouth.

“He was climbing out of his bed,” the nurses told me, “we had to tie him in the wheelchair and roll him out to the hall to keep an eye on him.”

“All these medications make him crazy,” I argued and from there on, I had no choice but to stay with him during the nights also.

After two long weeks, still feverish, losing half of his weight with gall bladder infection and against his doctor’s advice, I brought him home.

He was weak, not able to stand by himself.  With my brother’s help, we would carry him to the bathroom, wash him on his bed and feed him, forcing the food down as he had no appetite.

Slowly he recovered his strength, what was left of it, and our pilgrimage to different specialists began. After six months and countless tests, he was diagnosed with Parkinson disease, Alzheimer and hypothyroid. As he already had a pacemaker, visiting his cardiologist three times a year was now topped with regular visits to his neurologist.

His medication ‘regime’ had to be set, and after six months, a routine was established. To help his memory and to help him to sleep better two more medications were added.

We follow a stringent schedule for his eating as he can only eat an hour before or two hours after with certain pills.

I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.

Now, from 7am till 10 pm in the evening he is on a strict schedule.

When I wake him up at seven o’clock to take his first dosage – he kisses my hand.

But at night he seems more confused.  When I try to put eye drops in his eyes for his glaucoma, I have to force his eyes open because he opens his mouth instead.

 

Alzheimer's, caregiver challenges, caregiver dilemmas, caregiving, caregiving and dementia, caregiving beginnings

Caretaker, Caregiver?  

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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.”

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.

caregiver challenges, caregiver dilemmas, caregiving, decision making

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

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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.

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.