The case for an Advance Care Directive –dying with dignity

Jenn and Michele
–she is so proud that I wrote about her in my book!
We created a Celebration of Life for her!

Many know how long and hard I advocate for clients. We need to know their stories. We need to know how to help ourselves, as well.
Many, in cottage country, desire to die at home, in dignity. This is a personal choice. One best made by the entire family. Not all can manage the care of a palliative patient. It is emotionally, physically, mentally draining. My mother died at home. Dad died in long-term care.

There are three parts to Advance Care Planning to ensure that you die with dignity (see below). While Margot Bentley created an Advance Care Plan, the long-term care believed that her signed plan was precluded by their need to care for their resident. This is wrong on such a basic level.

This is a terrible situation in B.C., where they have one of the best hospice programs in Canada. This only works if you are sentient, do not have dementia, and are able to access hospice care.
Margot Bentley was adamant, in 1991, writing up her Advance Care Plan. She did not want extreme measures. Her daughter, as duly appointed decision-maker, respected her mother's right to dignity. The LTC insists on spoon-feeding her; her Advance Care Directive says she did not want this to happen.

Have the conversation

Dyingwithdignity.ca members and supporters have been incensed about the case of Margot Bentley, a woman in BC who has dementia and is now in an advanced state of extreme disability. Despite having taking pains to prepare a living will in which she deliberately rejected "nourishment and liquids" she is being kept alive by staff at the Maplewood Care Facility in Abbotsford who are prodding her mouth with a spoon and feeding her pureed foods in a bid to prolong her days.

 I have had several occasions when I have helped a resident, or their families, self-advocate. It is easier at home, where you can control what occurs. The issue, then, is accessing Primary Care (doctors, nurses, pain medications) when you need it. House calls tends to be a thing of the past. Nurses, hired by RFP by the CCAC, are working for for-profit agencies, and have their own protocols. If you have money, you can buy or rent equipment and supplies. If not, you are at the whim of the agency.

Michele has a 'secret admirer!'

The problem with long-term care is that all staff are trained to manage each person the same way, following the same direction. This is right, to prevent abuse, but not if special circumstances. My paraplegic friend, in pain 24/7, wanted to have dinner in her room.

Staff believed that Ministry of Health and Long-term Care policy and procedures precluded this. It is not so. The Ministry inspector, whom I phoned, and requested she visit my friend, managed an intervention, changed their policy, and Michele no longer has to eat P.B & J sandwiches alone in her room at dinner time. She experiences extreme pain when placed in a mechanical lift. She was forced up for breakfast and lunch, and preferred to stay in bed for dinner. There isn't enough staff to put her back into her bed when she needs it, and would stay in her reclining wheelchair until two staff could accommodate her.

The shame is that Margot Bentley made a conscious decision, legally, in writing, and her daughter was trying to enforce it. The Fraser Valley Health Authority ignored her directive.

I cannot tell you the number of people I have seen spoon fed, while in a coma. This is a personal

A mechanical lift requires 2 to operate it,
to put the resident in and out of bed.

decision, and one that must be made individually.
We regularly went in and fed my father either breakfast or dinner, when he no longer could manage to use a fork or knife. I have done the same for several clients over the years.

It broke my heart when one man, without teeth to chew, complained to me he was hungry while waiting for his lunch. The retirement home where he lived was unable to provide staff to feed him at lunchtime when the others were eating. They pureed the regular meals, and, after all were fed, brought his 'meal' and I fed this to him. I bought Ensure, something he could drink, as no one had brought such in for him. After this he regained some strength, and rallied for a couple of months.

Here is what you should know, from Wanda Morris. Visit www.dyingwithdignity.ca for more information

1. Create an advance care plan
2. Appoint a substitute decision maker
3. Review and update it annually.

What is the measure of a life?

comforter quest

This post was prompted by my one of my  clients.
We were looking at old photos, and I picked up one that showed three friends, tall, 20-somethings, dating back to perhaps taken in 1957. He pointed to the man on the right, "Church Minister", pointed to the one on the left, "Teacher". Pointed to the man in the middle, "Me.", and shrugged his shoulders as if to say his life was inconsequential.

Many of my Lanark County clients were farmers, ferriers, contractors; ordinary people, with ordinary lives. Many have interesting stories to tell me.


What is the measure of a life?
It is not in the value of the car, the home, the land, a salary, or a career. It is not in the style of one's hair, the clothes one wears, nor the shape of a body. The value of a person is in how s/he is treated by those who love them. And, in return, the love s/he shows for them. Sometimes that love is simply in accepting a loved one's help. Sometimes it is in accepting the help of a stranger. Sometimes the help of many strangers.

Rest easily, December 1937 - 2011

We know that the measure of a person is...immeasurable.
God Don't Make No Junk, I've read here and there. We cannot measure some by their deeds, as many haven't climbed mountains, or won fame and glory.

We have seen the laud and praise heaped on the late Canadian Jack Layton, the late Ottawa journalist Earl McRae, Jamie Hubley, or 33-year-old Danielle Naçu.

These people have won the hearts of those whom they'be touched. But we cannot judge a person by how many attend their funeral, or whether they achieved greatness and glory. My late father had 9 people at his funeral. Predeceased by my mother, my mother's neighbour and dear friend told me she didn't have the heart to attend Dad's funeral. Mom died on Mother's Day weekend, 2006, Dad died Feb. 16, 2007. Funerals aren't for the dead, they are for the living. There is much comfort in sharing grief, even a stranger's grief.

Can't measure a person
by the cost of childbirth
$42.00 in 1937

Wee young Jamie Hubley, a gr. 10 student who died by his own hand, had many strangers at his funeral. After facing bullies, homophobics, teasing and depression. (We cannot call it committing suicide, as if this person was a felon.) He was driven into taking his life by his mental ill health.

Wanda liked the comforter

These are the sung heroes. The unsung heroes are those to toil in caring for a palliative family member, with no hope and no support. They get little attention. They get up every day and do it all over again. Family caregivers are immeasureable, too. I've been there. I know. Some receiving Home Care could have a dozen or more different PSWs and/or nurses to care for them. Continuity is difficult. We are short such staff in Ontario.
Thankfully, in Canada, we do not measure a life. All receive healthcare.

I love this message: All we need is...

Someone to love,
Something to do,
Something to hope for!

Someone to love

When my parents died, and I quit teaching, I knew I had people I loved, and family who loved me: my husband, children, grandchildren, cats. Care recipients feel unloveable and imagine themselves a burden. Tell them you love them.

Something to do
I didn't have much to do, had burned out caregiving, and had little left to do on a daily basis. I had everything I needed and wanted: family, a decent home, a modest pension. But the daily routine of getting up, making lunch, going out to work, changes your life. Many who retire find it difficult having nothing to do.

Something to hope for
I had lost hope. I was content with my life, but knew something was missing. We have enough money to repair and maintain our home, and live simply. We do not travel abroad, that is something neither of us wish for. We spend much time in the region, traveling to fairs and festival, eating at new restaurants, taking photos, capturing photos of flora and fauna.

I found something to hope for after volunteering. I hoped to make a difference. I have channelled my hopes into hoping to have a good day. I work out for a half hour. Work outdoors gardening, or raking, creating sculptures in our yard. I dug a goldfish pond in late summer. That was fun. I'd hoped for a goldfish pond and it turned out to be a frog pond!

Doing end-of-life care is very rewarding to me. This is my 'something to do', now.

I bought this Angel of Courage
for my late mom,

I took it in to my client.

I am concerned that those who are palliative do not end up like my father: angry, morbid, agitated, and in pain. I have spent many hours doing a life review with clients, something I wished I'd done with my Mom and Dad. He lost hope, and we seldom spoke during his dying of the good times; his earliest or his favourite memories, his message to his children, his favourite childhood memories.

There are things to hope for at this stage of life. Many talk about the language we use around cancer. We must eradicate the 'battling cancer' imageries, for many should not be called losers. It is not a war. Cells gone wrong is what cancer is about. You body manufacturing faulty cells.

It's not a battle. Those who die by their own hand have lost hope.
At death's door you hope for support, a kind word, a soft touch.

Hope means laughter
What helps is a good laugh. I take this book into all of my client's. Dr. Seuss. My current client calls me "Dr. Seuss", as he couldn't remember my name in the sea of names and faces or caregivers that come and go from his home. For those with poor eyesight I read it to them. Others refuse to read this "kid's book!"

Very comical and priceless for 7's to 70's!

Why fit in when you were born to stand out? ~ Dr. Seuss

Unfortunately, many are no longer able to stand.

 I usually dress up when volunteering. No uniform, bright colours. It pleases those who are feeling drab. My late mother spoke of her best friend, Darya Arden, visiting her after a miscarriage sometime in the 1950s, and her friend wore her best red dress, and a bright red hat. Aunt Darya brought me bright red strawberry soaps when MY daughter was born (1979).

You hope to be clean and pain free.
Some people find something to hope for in a smiling face of a caregiver. It doesn't matter what you say, but it is how you look at and treat another person. The comfort of someone who gives you unconditional love.

That man is wealthy beyond measure. Whether it be a son who is there when he is needed, or a stranger who gently changes a bed, or another who sits in amicable silence. That man is rich.

A cynic knows the price of everything and the value of nothing. 
    -Oscar Wilde, writer (1854-1900) 

Support groups - Day Hospice week #2

I cannot tell you how important groups are. I have given presentations to a wide variety of groups; Palliative Care Conference attendees: healthcare professionals (nurses and PSWs), managers, coordinators, and volunteers.

I have spoken to bereavement, women's, writing, caregiver groups, and Adult Day Away programs, as well as speaking to people who were meeting to resolve issues with various health issues: MS, stroke, Parkinson's, cancer, and chronic diseases. We can learn to live in dignity, and learn to live well, no matter our circumstances. In fact, many of us live with chronic conditions. We are not alone: this table is from a recent study:

Chronic Conditions	Age 45 – 64 %	Age 65+ %
High blood pressure arthritis Back problems Vision problems Heart disease Osteoporosis Diabetes Urinary incontinence COPD* Bowel disorder Stroke Alzheimer’s disease	24 20 25 4.6 6.9 6.1 8.6 3.3 4.6 5.1 1.1 0.1	52.9 43.4 28.6 27.9 22.6 18.1 17.2 11.7 8.8 6.4 4.2 1.6

*Chronic obstructive pulmonary disease

"It is estimated that 40% of chronic illness can be prevented. Epidemiological studies indicate that
25% of all direct medical costs – or nearly $9.7 billion (C$2002) a year in Canadian costs of
chronic diseases – are attributable to a small number of excess risk factors such as smoking,
obesity, physical inactivity, and poor nutrition." (THE COST OF CHRONIC DISEASE CANADA)

One of the best ways to find support is, funnily enough, in a support group. Many caregiver groups exist. More info is available through your local CCAC Case Manager. Community Home Support offices abound in Ontario.
Community Home Support is an important part of the Canadian medical scene.

I am proud to be volunteering with Lanark County's Dignity House Day Hospice.
Here are photos of week two.

Today's schedule

I cannot explain how rewarding these groups can be.

We all work as a team. Our fearless leader, Alanna Scanlon, B.Sc.N., is inclusive, comforting, and professional.

As with any support group, we work together, we are all one. Sharing, commitment, energy and excitement to living each day to the fullest.

We are very excited to have more donations. Our latest includes a wheelchair.

For those with locomotor issues, it really helps the clients to move around easily.

Another donation, a table runner, which brightens the room. Not that the room isn't gorgeous. McMartin House is a delightful place. Once the renovations are completed it will be perfect!

The complimentary therapists do their wonderful work behind an antique screen. It was my mother's, a gift from me. I asked a Manotick antique dealer to find me one.

No matter your disability or issues, and we all have them, being together is an opportunity to talk and listen. To share our stories of empowerment or disempowerment.

In our group we all work at improving our self-esteem. The complimentary therapist gives us an opportunity to receive.
The activities allow us to relax, talk, play, work, share.

As I work with various hospice clients, I learn much about accepting help. I first learned this with my mother, who found it better to give than receive. Little did she show that she gave in receiving support from others with dignity and courage and strength.



To be in a group such as this, allows us to independent, creative, productive. For there is life in the living and doing.

Playing cards, reading a paper together, talking about our healthcare system, how to self-advocate, where to get more support, is an important part of being in a group. There is wisdom in the stories of others, as much as in the expertise of those in the medical field.

Thanks to Carolina Suites for our lunches!

Dessert!

Melanie Fyfe - reflexologist

MTM - Port Carling

Not to present a history lesson, I want to laud the wee town of 'Port', as she is affectionately called, from a tourist point of view. (History was never my thing!)

I am deliberately showing some summer shots...with a morning temperature of -25 C., it just makes me feel better and to have hope for spring.

Created in 1886, it is a delightful town. You can read about her in many books. My favourite being Raisin Wine, by our former Lt. Gov., James Bartleman. If you look closely at the mural above, you can see that it is made of of various photographs donated by locals. There is more info on the township's site: The Port Carling Wall.

Currently, work is being done on the lift bridge, it slows you down - but this can be a good thing! Traffic is down to one lane. In summer the bridge lifts to allow the steamships to go by. It is an amazing sight.

This small town has an incredible library. It is pictured on the Muskoka Lakes Library site. Built by the township, with a generous donation by a local couple, the Alloways. there are many extras including cedar shakes on the roof. It is light, bright, and a perfect place to sit and read.

There is a canoe in front of the delightful building.
I donated a copy of my book, and I hear that it is in circulation!

Port has many small businesses that thrive in a tourist-season economy.


"Port Carling, one of the earliest settlement on the lakes, is destined to become one of the most important, by reason of its central location, the key of the three lakes; all whose business has to pass its locks and all whose floating population in its excursion pass to and from upon its river-lake."
--Toronto World, July 14, 1887.

Author John Denison thinks Frank Micklethwaites wrote the article.












Of course, the best part of the library is the respect they assign local authors who donate books! You can find my book at the Gravenhurst, Bala, Bracebridge libraries, as well.