What do you know about long-term care?

It is shameful - the horror stories about abuse in long-term care. The myths and the fearmongering are even worse. There is much joy in long-term care. Laughter, and kind, caring individuals who look after our loved ones. You know, also, that if it bleeds it leads. 

CARP, which publishes Canadian Zoomer Magazine, with many false American references, continues to assault us in the area of healthcare. It seems to me that CARP needs to understand that healthcare in Canada is vastly different from that of the USA. Moses Znaimer, Toronto media baron, is on the bandwagon advocating for the ability of one to end their own lives. I think it more important to determine the Barriers to a good death.

Long-term care homes across Canada...

Here is the latest (Nov. 2012) article that had me upset.
[PDF] 

Long-term care homes across Canada...

File Format: PDF/Adobe Acrobat - Quick View

Long-term care homes across Canada have been rocked by horrifying reports of resident abuse. Why does the industry seem impervious to change?

CARP published an article in the November issues that disparages long-term care (LTC). Not all seniors in LTC are assaulted. Not all are at risk for the many things that they purport to be wrong.

Yes. Most of our retirement homes and LTC are for-profit in Ontario. (Approximately 500/600 are for-profit). That said, we have a good system to report abuse. (Myths around elder abuse, complaints about LTC). 
The incidents of abuse are truly few and far between. When they hit our most vulnerable seniors, they hit home and they hit the front page. We do not have accurate Canadian statistics of the incidents of financial, emotional, social abuse. In fact, many seniors engage in self-abuse than are abused by family members. Those with addictions, living in poverty and unable to navigate the system.

I was interviewed for a TVOntario program recently (TVOntario Video: End-of-life care), End-of-life care for those in poverty. There are ways to improve the care we get in LTC, as well as in Home Care, and increase the likelihood that we can prevent abuse of seniors.

Regulate and Track PSWs
Firstly, improve the training and begin regulation of personal support workers (PSW) who give most of the care. There might only be one nurse per shift, but many PSWs who are accountable to the busy nurse. PSWs change our senior's incontinence products, they get the, dressed in the morning, bring them to meals, feed them, if necessary. Yet, they are trained with a 14-module certificate program. They do not have a college or university degree. They know little of the psychology and sociology of geriatrics. Some employers insist on professional development, other do not. Part of this is being able to track those with little education, who are inclined to physically, emotionally, or financially inclined to abuse a senior. They are able to go from employer to employer, with no accountability. Aggressive professional caregivers in the healthcare field can do much harm in the name of good.

Legislate the Reporting of Abuse
Further, make it a requirement to report someone they see abusing another person, as we in education must do for our children. Now, the barrier to this is being able to differentiate seniors with dementia who believe they are being abused, from those who are truly unable to manage their money or their other ADLs. I cannot tell you the people, like my father, who are unable to understand what it is that they do not know or are unable to do anymore. He was unable to manage his finances but refused to hand over control of his banking, despite me having Power of Attorney.

Medical Upgrading
Secondly, both doctors and nurses must remain current on geriatric practices, end-of-life care and disavow themselves of the myths around pain management. I have had contact with many families whose physicians refrain from supplying them with a Pain Management Kit in their homes with a palliative patient. In fact, doctors are terribly reluctant to understand Comfort Measures, and fail to acknowledge that a patient is palliative. see: Signs of Pain - Pain Relief in Long-Term Care

disease trajectories

We know much about disease trajectories, yet little of this information is communicated to patients and their families. We know much about assessing the time of end-of-life, but physicians are reluctant to require nursing staff to administer these tools. I have found several:

Palliative Care and Pain Assessment Tools

I will never forget the physician who entered my client's hospital room, examined her in her coma, on CADD with morphine pump, her pain managed, and declared, 'She just won't die.' Hers was a good death. His was a criminal attitude.

Have you ever heard a physician declare, "I don't know, but let's find out." As an educator, I aid this to my students all the time. For physicians and nurses, with patients who face complex comorbidities, it is crucial that they understand end-of-life care, comfort measures, the important of 'do no harm', and when to create an atmosphere of support, rather than poking, prodding and treating patients to death. When I had a Nurse Practitioner, as part of my Family Health Team, she did her research for me, as does my current physician.

FIPPA vs. PHIPA

The healthcare profession has been handcuffed by the Freedom of Information and Protection of Privacy Act (FIPPA). They create policies, whether they be NGOs, profits, or non-profit organisations, that ignore the basic tenets of the Personal Health Information Protection Act (PHIPA), which says that if a patient is liable to engage in self-harm, they must be protected. In the case of a senior, with dementia, they are afraid of giving them a psychiatric dementia test, to determine their risk. My late mother and father's CCAC charge nurse was one such. Dad was beyond making adult, sentient decisions about his care, as have been several of my clients, yet they continue to believe more in protecting their rights to choose than determining that PHIPA over rides any privacy in order to speak truth to family members, who are trying to protect a loved one from themselves.

Patient navigators, frail seniors

This may be the way to improve the lives and deaths of those who cannot understand the system and manage their care. These are not people who are trying to dole out healthcare support to frail or dying patients, but people who will help them ask the right questions about their care and advocate for what is best for the patient, not the system or the family. Sometimes, it might boil down to helping a patient and their family have a good death, which is something I advocate for with my hospice clients.

Do you know the answers to the Five Questions?
Have you discussed this with your family?
My family knows my desires. No extreme measures. Do not put me on a feeding tube or hook me up to machines. That is my preference.

See also: The Conversation Project.

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) 

White Coat, Black Art –the back story!

I so love this show, and not just because I'm going to be on it! Dr. Brian Goldman is a medical journalist, author and ER physician based in Toronto.

The two men looking at the Tay River

Dr. Goldman interviewed me and my husband, on July 11th, for his show on unpaid caregivers, which will air November 19th. He is a fabulous interviewer. He makes you feel right at home, actually he was *in* our home! While the tape was running my cat started playing with his audio cable. We both kept on trucking. It was a hoot.


He spoke to me about my Unpaid Caregiving, both for my late parents and the volunteer hospice work I do. I consider myself a patient advocate, and work hard to improve the conditions of my clients; helping them find services, pain relief, a good death, and creating a Life Review. My most recent video of my friend, Kay Devlin: Celebration of a Life Worth Living.


After interviewing the two of us, we went into town. 

Meals on Wheels

Next, Dr. Brian went in with my husband, Joe, as the team was putting together the Meals on Wheels lunch delivery in Lanark Lodge. Hilarity ensued. There is a large team of people in our community that put together the supports to enable seniors to stay in their homes for as long as they can. We took him on a meal delivery. We consider ourselves a small part of this team.

Joe prepares to dispatch
Meals on Wheels

Next we headed off and treated Dr. Brian to lunch at Fiddleheads, where I told a guy to turn off the rude video he was playing loudly on his Crackberry! 


Then, we took Dr. Brian into the long-term care residence, where I volunteer on a weekly basis. He taped my visit with the late Mildred Flood (1940 - 2011). She was a sweet woman, who always did her puzzles in the activity room. The cats supervised her work!



Now, I made nothing in royalties for my book sales from January to June of this year. NADA! It is very hard to market a book in Canada if you co-publish, or self-publish. A 'best seller' in Canada means selling 5000 copies! Not that I am complaining, as it won't make very much difference to complain! I have given away more books than I have sold. I want people to read it and hopefully learn something from it.

Mildred (1940 - 2011) and her puzzle cat

The reward came in the writing of my story, and the research I did for the book, while I was working on my M.A. in Counselling Psychology. You better understand your life if you use a journal, and put pen to paper. This is an essential tool for caregivers to fight Caregiver Stress.

The joy has come from the people I meet when flogging my book. Since then I have been speaking to groups. I spoke at the NSM Palliative Care Conference: Stories in Palliative Care, and volunteered with Hospice Muskoka, and now Community Home Support Lanark County, near our new home.

My inspiration comes in understanding what  A Good Death can look like, and making it possible. Many cannot deal with death and dying. You can read about my efforts at finding a comforter for a Sens fan: #ComforterQuest. It was a small thing to do, but meant a great deal to a dying man.

End-of-life and palliative care is a specialty many of professionals cannot face.  For those dedicated to improving health, it is often difficult to face death. The barriers to a good death can be immense. The impact on caregivers is huge, and can have lifelong effects. There are many out there who can help. Check out the hospice associations your area. Volunteers can make a difference.

White Coat Black Art Program

—Saturday, November 19th at 11:30 a.m. and again on Mondays at 11:30 a.m. on CBC Radio One.

Also, Chris Must came to the house to interview us, and to take a photo for his article.

Author's research aimed at caregivers - EMC Perth

Chris Must, Perth EMC

Medical broadcaster Dr. Brian Goldman interviews Perth resident and author Jennifer Jilks July 7 for a CBC radio show (WCBA: "White Coat, Black Art") on the plight of unpaid caregivers, to be aired in the fall.

Honour our First Responders

Bless them all

I have long been interested and supportive of our First Responders. I spent a brief moment as a Victim Services volunteer in Muskoka.  I know that most of them are hard-working, despite the Ottawa news about incidents. Muskoka Lakes volunteer firefighters have been fighting for recognition and better equipment. The OPP deal with many horrible situations, while ambulance crews fight for the lives of our citizens. Our 2nd day here in Perth, I watched the crews work in a car rollover.

I watched weary first responders a summer ago: volunteer firefighters, OPP (6 incidents one weekend), paramedics, attempting the rescue of two men, non-swimmers. The crowds watched in awe, as they worked hard to recover the bodies. Concern, as this could be one of their own. I wrote a poem about the event, it moved me so.
the meaning of death  A terrible time that summer. We lost so many.

Bala Falls drownings video
	- 33 sec - 5 Aug 2009 - Uploaded by j3nnyj1ll Two non-swimmers drowned while trying to save a 9-year old relative who was sucked out into the river by the undertow of the rapids.

I have a friend who is paraplegic. In order to go to the dentist she needs to be sent in an ambulance on a gurney. I attended as her advocate. It is an uncomfortable trip for her, as she is in constant pain due to her condition, but the crew were fabulous.  Such TLC. It is a necessary means of transportation for some. The ladies in long-term care (staff and residents) are always happy to see the handsome male paramedics. (If only they knew!)

I recall the day we took Dad to emergency in May, 2006. Our neighbour, one of the volunteer firefighters, helped with my Dad. It was comforting to have the pros there. Dad had both dementia and delirium (the latter undiagnosed due to dementia, caused by an infection). We loaded him into the ambulance. They sent him home saying there was nothing they could do. Now I know better.

Weary volunteers

In my Mom's case - my brother decided to take her to emergency the night before she died. They sent her home at 4:00 a.m. as she was palliative and there was nothing they could do. Another issue I've written about. Too many deaths on the way or at emergency.  In clear cut cases, there should be support for those who choose to become caregivers. No one in the Primary Care team: from the physician, to the Charge Nurse, the CCAC staff, the hospital, the oncologist, told me about Hospice, or offered information on palliative care.

This death was a surprise to only me, and the rest of the community. Her respiration slowed, she hadn't been eating much beyond a few tablespoons of food a few times a day. The PPS and/or the ESAS, are excellent tools to help track and predict palliative performance. Whether they decline slowly, or quickly, levelling off at times like steps on a stair, or gradually decreasing in functions, we know what approaching death looks like. It is shameful that our society cannot speak of it. It is our right to have a good death.


Small communities have different experiences of their crews. The clerk at the local store told me it was her son who was one of the paramedics who ferried Mom to (or from?) the hospital the last time. He came home and cried at the sadness of it all. Mom had a great life. She'd bravely fought cancer and had now succumbed, in peace, with her son and husband by her side. They are good people. Kind, caring, and committed. They have a wealth of knowledge, and a calm demeanor that responds to a crisis, while managing frantic family members.

Triple alarm, Bala, Apr. 22