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..

A Compassionate Insight Into What Dying People Want by Dr. David Kuhl

What Dying People Want is a doctor writing about his very human journey through the suffering of the terminally ill and the desired emotional and practical responses from health care professionals. Most importantly, Kuhl addresses situations and how to approach them for best results, always bearing in mind that what the patient most seeks is some sense of control over his life and the treatment of his illness.

I remember it was always a hassle getting out the door on the morning of Chris’ doctor’s appointments.  He liked them to be early in the day, I think because he felt best able to cope then–his energy levels seemed slightly higher in the morning, though he soon flagged.

We lived a good thirty kilometres drive through rush hour traffic, and at the end, paid horrendous hospital parking lot fees.  Then there were the interminable hallways, steps and elevators to negotiate within St. Paul’s. For Chris, these sessions were exhausting.  Near the end, the toll on him was severe.

But he had been treated at St. Paul’s from the night of his very first heart attack, when we lived in the West End five minutes drive from the facility. And in the end, the young doctor who had treated him then became the head of St Paul’s Cardiology Department, and in the years between, he and Chris built up a good rapport.

So David Kuhl’s book, based on research done at St. Paul’s struck a chord with me.

Several aspects of the book appeal to me.  Kuhl introduces each chapter with quotes from patients, followed by an anecdote, legend or myth that speaks to the theme of each chapter.  He uses his own experiences and those of terminally ill people to illustrate their concerns.

I found it to be practical and profound. Any comments you may have on the book would be appreciated.  Just email me at margaretjean64@google.com

These next few blogs are based Dr. David Kuhl’s book, What Dying People Want., based on his research and experience as a palliative care physician serving at St. Paul’s Hospital in Vancouver, B.C.

Local Hospice Societies Offer Caregiver and Bereavement Support.

During the days of tending your loved one, you are constantly engaged.  Doctors, health agencies, pharmacists, family and friends are all involved in the work you must do.

But who do you talk to when you’re suddenly feeling overwhelmed or dismayed?  Or when you need respite care?

Or perhaps, like me, those days are over.  And like me, you may suddenly find those days that were filled with innumerable tasks suddenly stretch before you in an endless array of emptiness.

Everything is quiet and still and you begin to feel the pain.  Where do you turn for help?

Thrift shops have always been a mecca for me when I’m down–looking over the items seems to help me focus on something other than my present state.  One day when I was in the White Rock Hospice Thrift Shop, I mentioned to the clerk that I was trying to find a source of grief counselling.

At once she said that the Hospice Society provided such a service.  She handed me a pamphlet with a list of all the services they provide.  I was surprised to see that these included bereavement walks, as well as grief counselling individually or in groups.

The best part?  It was all free!

For caregivers the hospice societies offer many services including counselling for both the family and the patient.  They also act as a resource centre offering information about services they and others provide, including respite care, one on one support and palliative care.

So if you’re looking for any of these services just Google your community hospice society or head on out to your local hospice thrift shop.

Once I found the hospice services, I no longer felt alone in my grief.  And I’ve found it easier to situate myself in my new reality.

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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.

Alzheimer’s: Poetic Response

My mother had Alzheimer’s.  Well, actually the doctor said it wasn’t possible at that time to distinguish between Alzheimer’s and other similar conditions.  This poem is a response to her condition and the research I did at the time.  And no, it doesn’t rhyme.

Grasping at Research Straws

Frontotemporal dementia (FTD)

not so innocent as online florists:

scientists redefining quality of life.

A protein—progranulin-necessary to

nerve cell function; to remembering

luncheon dates and appropriate

behavior for same.

Clinical research indicates inadequate

progranulin production’s a genetic

mutation causing FTD.

Too late for Mother. Send her roses;

long-stemmed burgundy  petals

peeling down, like the velvet dress

I once found in the back of her closet:

stunning, sensuous.

deliciously sexy on anyone  capable

of flirtation and desire…

does progranulin or lack of it affect

sexual behaviour?

Initial research may lead to treatment

in time, but Mother hovers nears the finish.

I wish researchers Mackenzie and Feldman

Mothers with progranulin rich minds.

ii

frontotemporal dementia

frontal portal into the brain:

sensors removed, wires crossed.

boundaries demolished.

isolation, depression, short circuitry

rerouting synapse to blank space.

gummed up placque, synapse

box cars skidding off the rails.

scientists probe cause and effect:

in effect the brain shrivels

and we die, wandering homeless

in a vast carapace of skin.

Margaret Jean.

Grief: The Natural Course

 

I have come to learn the hard way that grief must run its natural course.

Kind of reminds me of a river I once knew, a mountain fed stream called the Salmon River that runs through Williams Park in Langley, B.C.  One year when heavy rains came, the river flooded, washing out bridges and banks, uprooting small willows and bushes that stood along the water’s edge.

The engineers at the park’s department set about rerouting the creek to minimize the damage the next time it flooded.  The idea was to redirect the path of the tumultuous waters so that even in extreme conditions, the force of the current would be less hazardous to its environment.  To this end, wire cages called Gabions filled with rock were installed along the river bank to change the course of the river.

Several weeks after the project was completed, a downpour came, lasting several days.  Agents of the parks board came to see the effects of their efforts.  As caretakers we already knew the result: the raging river had not only done just as much damage as before; it had also dislodged the Gabions in order to resume its natural course.

Like the Parks’ engineers I thought by pouring my overwhelming emotion into a new relationship, I could reroute the emotions of my grief.  I could get on with my life at a much earlier time than predicted.  I could avoid all the pain and loneliness of grieving.

But what I learned was that at the first sign of issues and challenges in the new relationship, I was easily derailed.  My judgement was almost non-existent.  I missed many warning signs that this person was not suitable for me;  Not because he was a bad person, but because I had just grasped at what my grandmother used to describe as “any port in a storm”.

It was a painful lesson.  Painful for me and for the other person as well.

Be grounded in your grief.  It’s a natural process. Don’t fear or shun it.  With God’s help will you make it through.

To learn more about Williams Park, go to: http://www.tourism-langley.ca/williams-park/

 

Caregiving & Grieving: Close Companions.

A Caregiver’s life seems overwhelming at times.  Most of the time, in fact.

Some of us try to juggle work and family and caregiving another relative, God help them. Others just try to make it through another day of being inside, sitting, trying to get a grip on what can be let go of, and what needs to be done.

It’s exhausting and all-consuming, caregiving.  And at the end of it all?  Grief swoops in.

I’m finding grieving different from caregiving. Less constant in its demands I thought.  Grief not only comes and goes, but I’ve found it can disguise itself as some other emotion.

I thought because my husband’s health was in decline for so many years, my grieving process would be short, and not so intense.  I didn’t break down sobbing at the funeral.  I didn’t go home and weep over his clothes, his bed, his shoes.  I just wanted everyone to go home so I could be alone in the flower-fragrant silence of my home.  I wanted to be alone with thoughts of him.

And then suddenly seven months later I was overwhelmed with emotion.  Emotion which I misplaced.  It was like being on a roller coaster ride: what you tell people is a thrill is really terror.  And I was not recognizing my fear.  Life was suddenly entirely and only my responsibility.  And I wanted to be safe.  I desperately wanted someone to look after me.  Like Chris had.

z Chris & Marg Marg's 40th birthday house on 76th
I wanted to be safe.  I wanted someone to look after me.  Like Chris had.

Fortunately friends, family and a group called Griefshare helped me sort it all out.  Helped me see that I am grieving, deeply and furiously the loss of my husband of thirty years.  And in starting a new relationship all I did was complicate the process.  Hurt others.

Because I didn’t recognize, couldn’t own my grief.

Adam women are strong, Mom always used to say.  I hope that’s true.  I hope that like it says in the book of James, chapter 4, suffering builds endurance and character.

Just like knowing how your caregiving days are going to end doesn’t make the process any easier, knowing what James has said doesn’t make grieving any easier, either.  But like caregiving, there is a sense of pride in honoring the process.

If you need help, like I did, contact your local Griefshare group-note, it is faith-based.  Other alternatives?  Contact your local hospice society or funeral home.  They should be able to help you find a group that will fit your needs.

 

A caregiver’s Remembrance Day.

chris Deb at Jamie's wedding 2

There are no parades.  No uniformed men and women marching in the sleet or rain.  No pounding of feet to the rhythm of pipes and drums.

There is only silence as I lay a bouquet at the graveside, or later as my hands linger on rosary beads, knees bend to pray at the bedside where I once calmed and bathed and comforted Chris.

 It is Chris’ birthday, A time he celebrated with family and friends, Poochie on his lap, the kids teasing him about being an old man now, his friends laughing with him, his hazel eyes taking everything in.  Salad on the plates, roast in the oven, children and grandchildren milling about. He always insisted there be more than enough food, a hangup from a childhood spent in a Displaced Persons Camp where there was never ever enough.

Today I struggle with waterless faucets at the graveside, cutting my finger with the box cutter I have brought to cut the red roses and white lilies down to size for the vases the cemetery provides. My tears mingle with the rain.

I am soaking wet and it feels good to be sodden and alone as if it is a physical expression of my grief.

And ahead looms the thirteenth, the anniversary of his passing. It is not a day the nation will mourn with me, the day I kissed him one last time and stood helpless as he suffocated in cardiac arrest.  Watched the agency worker drag him to the floor.  Perform CPR.  Shout at Chris to breathe.

As I place the flowers in the insert, I push the memory of his dying aside, try to concentrate on us in the late ’80s slow dancing in the White Eagle Hall on New Year’s Eve.  He always held me too tight, so I felt slightly off balance on the dance floor. It was pleasant emotionally.  Physically discomfiting.

But it was nothing to how off-kilter my life is without him.

I drive home from the cemetery the stereo blasting his favourite jive song:  Give me that old time Rock ‘n roll. He could really cut up a dance floor.

Later, restless and weary, I drive through the dark and the downpour, past the house we once lived in.  I am torn with guilt by the fact that I still pulsate with life, that life resonates through me even now that he is gone.

My favorite Garth Brooks song: The Dance is playing. I remember being at the Queen E. Theatre in Vancouver.  It was 1990, I think.  Brooks was the opening act for the Judds that year and Chris and I first heard this song at their concert. No one even knew who Garth Brooks was, but he was a star that night.  He brought the house down. Made the Judds seem like an afterthought.

I drive by our old house, memories rolling through my head like frames in an old home movie. Rain splatters against the windshield; the heavens weep with me.

There are days when to be honest I feel slightly uncomfortable about always having a dead man in my head.  One who glares disapproval or smiles tenderly or protests violently against his inability to reach out and hold me, grab me and shake me, take my hand, sit beside me, kiss me.  Be my resolve.  When he furiously fights the fact that he is now merely a shadow, a mere memory of love shared.

I have to move on.

But he will always be a part of my every day.

Because every day has become Remembrance Day.

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.

Caregivers: The Best Defense: Five Steps to Being ProActive in Your Patient’s Care.

How many times have you noticed something you felt was unnecessary, unfair or just plain wrong, in terms of the care of your patient?

When you’re already exhausted, it’s easy to give in even though in your heart you want to fight like mad.  You simply don’t have the energy to face what seems like a sea of paperwork and stand up to an equally daunting herd of bureaucrats.  The secret is to be armed with information.

Here are five simple rules that will help you accumulate that information so that you can deal with stressful situations successfully.

  1.  Take notes.  Date them.  Note who the participants are.  At every meeting with a doctor, specialist or clinician, note down key terms and what is being said about them.  This applies not only to medical concerns but also to status definitions and treatment options.  I preferred to keep these notes in one notebook, so that I wasn’t forever searching for slips of paper to find the information.  This will help you feel more comfortable if it becomes necessary to challenge a medical decision later.

  2. Get copies.  Ask for any piece of paper generated about the condition of the patient. You may not get it, but you can ask for a copy.  I found doctors were usually willing to have an assistant photocopy documents for me. I even got ECG printouts when I asked for them.

  3. In our province (BC) you also have the right to a printout of any lab test results requested by your doctor.  However you must ask for the results to be given to you when you submit the requisition to the lab..The lab can give you a card with your name and the internet address where you can access your results, or you can have them mailed to you.

  4. Photocopy the original prescription requests.  I used to ask the pharmacists to copy the script I gave them.  This allowed me to compare the prescription bottle dosages to the original doctor’s orders.  It also allowed me to check against what I already had at home to recognize changes the doctor may have made.  In rare cases, it served to help me recognize (with the help of the pharmacist) that the prescription was either inaccurate or inadequate.  I used Costco Pharmacy, and in my opinion, if they will do these things, any full priced pharmacy should.

  5. Don’t back down. If you have gathered all the information and know you are right, don’t yield. Be calm, courteous but insistent.  Do your research. If you are lucky enough to have a nurse or doctor in the family discuss the issues with them.  They may put your mind at ease or indicate possible strategies for intervention. Then make phone calls. Write letters. But always maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands.  Use phrases like “It seems that this is the case,” as opposed to “You did this”.

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.