Chapter 1
                                             
On My Mother’s Behalf
            Stand up in the presence of the aged, show respect for the elderly…Leviticus 19:32

I am calling on my mother’s behalf." Was the phrase that I used on dozens if not hundreds of phone calls made over a short couple of years.

Sadly, my mother was falling victim to the merciless effects of aging and dementia, and I was doing my best to navigate through the Health Care System. This proved to be beyond challenging. On this journey, I would speak to countless government representatives and Long Term Care employees. The majority were desperately ill informed, and seemed to be comfortable with their ignorance. There was an occasional light in the darkness, but this was the exception not the rule.

We would all like to believe that our seniors are cared for with respect and dignity when they find themselves, without choice, relying on the health care system. Unfortunately, too often, what they receive is neglect, and a lack of compassion. The result: inadequate personal care, little or no basic medical intervention, and unnecessary suffering due to otherwise preventable physical, and emotional distress.

My mother lived in Long Term Care for nearly two years. Shortly after entering the system, her health rapidly and significantly deteriorated, and her quality of life was severely impacted. My family and I met with management on many occasions to discuss concerns regarding the care she received. We never asked for special care, only that her basic needs be met.

During our meetings, management acknowledged our concerns, and agreed with many of our issues. However, there was no evidence of improvement. The excuses we heard repeatedly were lack of funding, lack of training, and "the System" is broken. At first, we believed them, but as time went on, we began to question their excuses. Was "the System" really broken, or was there an underlying, perverse lack of accountability?

There were numerous incidents when my mom required medical intervention, but none was provided. She had rashes that went untreated for weeks; she had open wounds because of a lack of proper hygiene; she had undiagnosed urinary tract infections. On every occasion, medical intervention was only given after the family’s continued, and repeated persistence—from simple podiatrist appointments to requiring transportation to hospital by ambulance.

After one particularly serious incident, the family felt it necessary, and a moral obligation to open a complaint with Protection for Persons in Care (PPC). This was a long and tedious process, which required much time and dedication. When talking to a PPC representative, I mentioned the amount of time required to submit a complaint. The representative replied, "When people realize the amount of work required they usually drop the complaint. Most do." I believe she expected I would follow suit.

Two complaints were submitted to PPC. One complaint was confirmed, and the staff found guilty. The second complaint was denied, and I appealed. As a result, the Appeal Panel overturned the original decision, and found the complaint justified, and the facility, and staff guilty. Unbelievably, it was up to the Director of PPC, the person who originally rejected the complaint, to address the guilty verdict, and follow up with actions and recommendations. She felt it unnecessary to take any action. In the end, this meant there was no difference between a verdict of guilt or innocence. Her lack of action re-enforces the message: there is no accountability.

My experience has led me to believe that the objective of Long Term Care is the warehousing of seniors with no regard to their quality of life. Some in the medical community, like my mother’s assigned doctor, who stated it would have been a blessing if her chest cold had turned into pneumonia and she had died, confirmed this understanding. He expressed disappointment when I intervened, and insisted that she be treated. I was stunned as she was not at end of life; she was actively participating in bible studies, ladies’ luncheons, and a full social calendar of family and friends.

If I were caring for my mother in my home, and treated her in the same manner as Long Term Care facilities, I would be arrested for neglect and abuse. Why are facilities repeatedly allowed to neglect, and abuse our seniors without accountability or concern as standard operating practice?

It should not be acceptable for facilities to hide behind policies, procedures, and budgets as an excuse for allowing neglect and harm to come to our vulnerable and valuable senior citizens. We are entitled to accountability from our government, and the systems they oversee and endorse.

It has been my experience that when a person enters a Long Term Care facility and can no longer care for themselves, their basic needs will not be met, they will likely endure neglect, they will suffer needlessly, and their dignity stripped from them. They will simply be another body occupying a bed in "the System" until their inevitable death—a death hastened just by being there.

Even if you are lucky enough to have loved ones who are concerned with your wellbeing, no matter how much time or effort they expend, they will be helpless to assist. You and your family will be at the mercy of "the System".

Everyone has a story; this is ours.

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Introduction

                                                                      A Call to Action
                      Be sure you put your feet in the right place, then stand firm.—Abraham Lincoln

As I lived through each experience in this book, I thought, "No one would believe this is happening. Not here. Not in Canada!" Each challenge unraveled into a new and more horrific experience. This included witnessing my mother’s neglect and abuse, blackmail, top political leaders wanting to ‘wash their hands’ of the situation, while other leaders wanting a front row seat. My sister and I were nearly thrown in jail, lawyers held back disclosure, and our story hit the media. I kept thinking, "I have to write a book!"

There is always more to a story than can be covered in media headlines and cursory interviews. In your hands, you hold the complete story, a story of loss, grief, and heartbreak. A story of disappointment as individuals who were trusted, and counted on failed to fulfil their promises. A story of government systemic failure, as departments, and leaders walked away from their responsibilities with no accountability to fulfil their mandate. If nothing changes in our medical system, potentially this could be you, and your loved one’s story.

As sad and discouraging as the story is, along the way, I have encountered many empathetic, caring, and compassionate health care professionals. Their compassion, and acts of kindness, encouraged and uplifted my spirit. We can take heart that there are many trying to do the right thing in a ‘‘System’’ gone wrong.

Through the course of this story, I have chosen not to disclose the names of the Long Term Care facility, the private care home, or identify specific individuals. This is for a couple of reasons. First, this story is not about those specific individuals or facilities; it is about failure of "the System". Secondly, our story is not unique. The camera operator filming the news story, the lawyer, the Executive Director of Public Interest Alberta, and many others shared their own personal experiences of their senior family members trapped in the Health Care System, and Long Term Care. Repeatedly, I heard the same story. Different places, different faces, but the underlying themes were always the same.

The lack of compassion, and appropriate medical care is epidemic among seniors. It is time for those who have a voice (and vote) to unite, and demand change. "The System" is not an entity arbitrarily inflicting its will. It is individuals; it is people. "The System" can be fixed. We can do better; we should do better. Otherwise, we will find ourselves in the same situation—helpless, and at the mercy of "the System".

Finally, if I reference my Christian faith in this story, that is because it is who I am. Without my faith, this book would not have been written. However, I would not classify this as a "Christian Book." No matter what your faith—Hindu, Muslim, Buddhist, or whatever your beliefs—we all expect our loved ones to be treated with care, compassion, dignity, and respect.

Contents
Foreword by Joel French............................................................. vii

Introduction - A Call to Action...................................................1
Chapter 1 - On My Mother’s Behalf...........................................4
Chapter 2 - Becoming Equipped................................................8
Chapter 3 - Storm on the Horizon............................................13
Chapter 4 - The Inevitable........................................................19
Chapter 5 - A Crack in the Rose-Coloured Glasses................29
Chapter 6 - Now the Challenges Really Begin........................39
Chapter 7 - When is Enough … Enough?.................................52
Chapter 8 - The Final Straw.....................................................60
Chapter 9 - Not All That Glitters is Good...............................76
Chapter 10 - In Search of Justice ............................................83
Chapter 11 - Profit Trumps.......................................................89
Chapter 12 - Betrayal of Trust.................................................101
Chapter 13 - Politics, Media, and Deceit................................ 114
Chapter 14 - Pushing Forward, Pressing On......................... 126
Chapter 15 - Fight the Good Fight.......................................... 136
Chapter 16 - Saving Grace....................................................... 143
Conclusion - A Journey Toward Change................................ 154
Afterword - A Gift of Remembrance...................................... 156

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