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..
caregiver challenges, caregiver's life after

Life After: A Caregiver Reflects…

Leave a comment

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.

caregiving spouses, spousal caregiving, terminally ill and work

Spousal Caregiving: The Most Stressful Situation?

Leave a comment

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.

caregiving and routine, caregiving spouses, prayer and caregiving

Caregiver Reflections

Leave a comment

Reading Kamla’s post, I recognize how precious my time with Chris was.

How lucky I was as a long term caregiver to still be in a relationship with someone who loved me.

There were times, I admit, when I was all too focused on getting the laundry done or the fridge cleaned out.  When keeping busy was my way of ignoring the fact that I was not free to go outside into the fresh air; to go for a walk, to saunter down to Starbucks and read a paper while sipping a latte.

I prayed a lot.  “Pray for courage, Maggie.” Father Obiwumma advised.  “I pray for grace,” I said.  Grace to accept that this was my decision.  Grace to be cheerful, loving, helpful.

Grace to remind myself that being entrenched in this apartment 23 of 24 hours a day was not anyone’s fault.  It was my choice.

It’s amazing how hard it can be to remember that sometimes.

Sometimes, I’d get cranky.  Then Chris would crack a joke; clown for me, make a face or deliver some harmless, lewd comment.  And we would laugh. And in that moment I would truly know how fortunate I was to be with this man on this final journey, to be his chosen companion.

We sat together for hours every day, holding hands, watching movies, Chris giving me a constant flow of data about the actors and locations and sometimes even the history behind the movies.  He cried when brave men did great things.

He cried when Doc Holliday died in Tombstone.  Not sobbing.  Just wiping his eyes and huskily asking for a coffee or fresh water.

After the TV was turned off, we’d say the rosary together.  It was what he wanted.  I would kneel beside his bedside and we would say the decades together.

I was lucky to be in that relationship right up to the end.  Lucky to have all those months and years to nurture and hold him, to understand that I was losing him.

I don’t know how Kamla copes, after losing Jack so suddenly.  How people who lose their loved ones in an accident or sudden illness or suicide manage their grief.

I miss Chris.  Miss him terribly.  But I can’t help feeling, reading other caregiver websites, that somehow, I was one one of the lucky ones.

yours truly,

Margaret Jean.

caregiver challenges, caregivers' feelings of failure

When Caregivers Feel They’ve Failed…

1 Comment

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.

Leave a comment

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

Leave a comment

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?  

Leave a comment

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.”

caregiving, caregiving spouses, help for caregivers

Chris–November 1942 to March 2015

Leave a comment

Chris 4

chris Deb at Jamie's wedding 2 Chris 2 ???????????????????????????????

This is the man who was the love of my life for thirty years.  He will be deeply missed.

In memory of him, and in aid of caregivers everywhere, I intend to continue my blog discussing and hopefully shedding light on the many issues and challenges that caregivers face.

The articles will continue to be about my journey with Chris in the last nine months of his life, and include other caregivers I have met along the way, their associations, resourcefulness, dilemmas and solutions.

I hope you stay with me.

Yours truly,

Margaret Jean.

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

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

Leave a comment

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.

Leave a comment

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.