Category Archives: caregiver challenges

Alzheimer’s Reading List

A client of mine lost her husband to Alzheimer’s last year.  As his main care giver, she  read everything she could find about people’s personal struggles with Alzheimer’s.  This literary journey hasn’t stopped with his death.  In her grief, she continues to read about other families’ experiences and the disease that took her loved one.

I read them to find out how other people dealt with it.  You know, what I could have maybe done differently?  And what I did right, she said.

This is her list of titles:

Before I Forget by B. Smith and Dan Gasby.

Come Back Early Today, by Marie Marley, Ph.D.

Slow Dancing With a Stranger by Meryl Comer.

The Long Hello by Cathie Barrie.

To Johnny With Love by Dagmar Christine Albert

My Mom, My Hero by Lisa R. Hirsch.

When Breath Becomes Air by Paul Kalanithi.

She also recommended two books that are fiction based on fact:

Inside the O’Briens by Lisa Genova and

Turn of Mind by Alice La Plante.

Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read.  I hope you find new solutions and humour as well as pathos in these books.

Thanks, Donna, for sharing.

Yours truly,

Margaret Jean.

Caregiver Attitude–The Courage To Change The Things I Can.

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. These words from the serenity prayer are familiar to many people. They make sense.

But as a caregiver, many times you feel hopeless to change anything about your current situation. For awhile, Viktor Frankl felt helpless to change his situation, too.  Frankl was a German psychiatrist who spent several gruelling years imprisoned in Auschwitz.

Suffering the most cruel and humiliating deprivations, he observed: “…everything can be taken from a man but one thing: the last of the human freedoms–to choose one’s attitude in any given set of circumstances,…”

Frankl spends a large part of his book, Man’s Search For Meaning discussing the issues of attitude and responsibilty.  As caregivers, we sometimes have this responsibility thrust upon us.

Suddenly one or both parents are no longer capable of living on their own.  Or perhaps severe illness suddenly strikes a spouse or a child, a sibling or a friend.  Or a family member becomes the victim of an accident or crime.

When called upon to respond to these situations, people may sometimes feel a certain sadness, due to a loss of personal freedom, a life schism that was unanticipated.  There are times when tempers flare and caregivers may wish to fight against the unfairness of the situation, or resist the restraints caregiving puts on them.

While the focus is on the patient, the caregiver struggles with feelings of inadequacy, disappointment and sometimes even resentment.

This is wholly natural, and bound to occur.  However, once the initial shock wears off, it is important to recognize what it is within the situation that can be changed. One aspect that affords change and which will bring the most benefit to you and to your patient is your attitude.

Take a person who resents being a caregiver.  Perhaps they were thrust into the situation, perhaps they felt they had no choice in the matter.  This attitude will create a negative atmosphere for both the patient and the person caring for them.

The effect, however, will be most harmful for the one harbouring the bitterness: every day will be a new source of irritation, frustration and general bad feelings.

But if the care giver can bring themself to the attitude that it is important to be the one who is accompanying the patient on his last journey, that it is a journey that demands dignity, humour and kindness, the days will pass very differently for both the patient and the person caring for him.

As Frankl notes, in dire situations, it is not always what we expect of life that matters.  As caregivers, we must ask ourselves, what does life expect of us?

And for each of us, Frankl believes,a ‘unique opportunity’ is presented when we find ourselves confronted with severely challenging situations; an opportunity to find in ourselves a previously unfathomed capacity to act with dignity, compassion and honour.

Paperwork? Exhausted Caregivers Battle Bureaucrats For Rights…

Like it or not paperwork is a huge part of being a caregiver.

There are prescriptions, prescription adjustments, forms to fill out for medical plans, for Red Cross equipment loans, and at doctor’s appointments (why do we have to fill out the same four page forms every time we go to the heart clinic?).

There are forms to pin on the fridge for the ambulance crew, bills to pay, rates to negotiate and battles that must be fought.

All of this when you are already exhausted, overwrought and all but ready to give in.

Don’t give in.

If the paperwork is getting you down, just put it aside for a day or two.  Let it sit.

And don’t let the agencies bully you.

You need to know when to fight and when to give in graciously.  If you can.  Sometimes we’re just too worn out to know how to be gracious.

For me the major battle was over the declaration of palliative care.

Where I live, Palliative Care means that his meds (which were costing us $500 a month in spite of the provincial medical plan) and the relief care were to be covered by the province.

In other words, I was not supposed to have to pay anything after the hospital cardiologist in Vancouver declared Chris palliative in writing on the approved form and sent it to all the proper authorities.  That happened on February 6th.

Agents from the health authority phoned me almost immediately and told me I could have the additional care the cardiologist recommended and it would begin the next day.

However, the worker came only for his usual hour.  When I phoned the agency, a different clerk said Chris would not be deemed palliative in their system until their nurse had visited and confirmed the declaration.

Even though I repeatedly phoned for an appointment, the health authority didn’t get a nurse out until the end of February.

In the meantime, the more I thought about the situation, the less it made sense to me.

Why did a nurse have to approve a cardiologist’s diagnosis?  Chris was declared palliative on February 6th in writing (I had a copy of the signed form), and that should have been sufficient.

But their inability to get a nurse out to us was their justification for billing us for all of February.  By now Chris had been ill a long time and our resources were extremely low.

I fought this.  Chris fought this.  His daughter fought this.  But they insisted I pay until the end of February.  I finally agreed to this just to settle him down, but it was too late.

In spite of our efforts to steer him away from the topic, Chris argued with the nurse in the late afternoon about this issue.

That night, he had to be taken by ambulance to the hospital with a severe heart attack.

I couldn’t help feeling the health authority was wrong on this one.

So during Chris’ hospital stay, I composed a letter to the health authority, copied it to our local MLA and the cardiologist.

In the letter I stated our case in the most logical terms possible. Enclosing a copy of the palliative care declaration form, I mailed the three letters.

After several days in the hospital, Chris returned home.  He died only days later.

I didn’t hear anything regarding the letter.  I thought afterward it was a foolish thing to argue.  It seemed inconsequential in light of Chris’ passing.

Then, some days after the funeral a man phoned from the health authority head office back east.  He said they had received my letter, reviewed the file and would refund the monies I had paid for February 6 to 28th.

It felt odd, something previously so important now seemed almost irrelevant.

But I knew Chris would have liked to have known that we got our money back.  He hated to ever feel that we’d been taken advantage of.  Especially when you’re dying.

Miss you, Babe.

Margaret Jean.

Life After: A Caregiver Reflects…

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.

When Caregivers Feel They’ve Failed…

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.

Caregiver? Caretaker? Part 3.

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.

Caretaker? Caregiver? Part 2

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.