My Father Ernest Floyd Gagnon

There he lies or sits in a place built for the forgotten, washed-up people who have reached a point in their lives when they can no longer care for themselves, are no longer useful to society and believed to be nothing but a burden. They are unrecognized as the good, kind and productive citizens they once were.

If only they knew…knew that this man who sits before them was one of Alberta’s most successful farmers! This is a man whose efforts helped to develop this great province; whose hard work provided food for the people in whose hands he now puts his care.

For the most part my beloved father is left….left there to wallow in his urine with an ulcerated sore on the side of his foot that has been growing and festering for more than 4 months. Staff wonders why he responds with angry fists when he is shouted at to get up, wrestled into an ill-fitting chair and left without proper restraints to keep him from falling. His excruciating pain expressed through anger and frustration is taken personally. His desire to walk is met most times with no one to care for him, he falls…and when he does, he is injured.

While my father has been in care his falls have caused him to be rushed to hospital where he has had emergency hip replacement, tests that have indicated serious head injuries with the diagnosis of “blood on the brain”, an impacted bowel, and most scathing of all, emergency treatment for one of his eyes that was so badly infected doctors at the hospital told us that were it not for my mother, my father would have lost his vision in that eye entirely. This episode resulted in his eye being ‘permanently’ shut leaving him with vision in only one eye—that is of course if he has his glasses. He also suffered with infected sores on his feet that were only cared for by a ‘wound nurse’ whose lack of attention (and of course that of a doctor) caused him not only excruciating pain and the infection only spread deeper. Although he wanted to walk, he could never do that again.

My father has been placed in five different facilities (in two of those twice) since becoming afflicted with this horrible disease that has robbed him of his memory and character. He was first placed in Extendicare in Leduc. He was then transferred to the Sherwood Park facility then to Lifestyles in Leduc. From there he was shipped to Villa Caritas in Edmonton then back to Leduc at Lifestyles once more followed by V illa Caritas once again. In July of this year he was sent back to Leduc where is now resides at Salem Manor . If one counts the number of times Dad has had to go to hospital—his changes in environments are beyond belief! Evidently whoever made these decisions is not familiar with Relocation Stress Syndrome! Given the number of times Dad has been moved, it’s no wonder he is frustrated and lashes out. He has no stability in his life.

In all facilities (not the hospitals) my mother has had to plead with the resident doctor just to come in to my father’s room and examine him. The doctors for reasons unknown to us were (and are) unwilling to do so. In the Salem facility the doctor did not see my father for a period of 3 months! When he did eventually come into his room, he took one look at his ulcerated foot and sent him to hospital immediately. Mom had repeatedly complained that Dad’s foot was still swollen, the wound looked even deeper and it smelled of rotting flesh. Daily in the mornings when my mother would come in to see Dad, he would be lying in his bed and she could see the urine surrounding him. She pleaded with Carol, the Manager of Salem to please use soaker pads under Dad before sleeping. Mom was told firstly that were no soaker pads but Mom had seen them on other patients beds. Mom was angrily and pointedly told that Dad would be MOVED if she didn’t stop her complaints.

What is also interesting to note at this point is that Salem Manor is a publicly subsidized care facility yet there are flimsy polyester coverlets on the beds and not proper blankets such as what one might find in a hospital.

In late December 2017 Mom discovered at Villa Caritas that a patient had been poked in the face with a fork by a care giver. Evidently the patient had either fallen asleep or wasn’t paying attention to his meal.

On January 1, 2018 Mom came to the Villa Caritas to visit Dad and to give him the Christmas present that she’d just completed for him—a lovely new crocheted blanket. Dad was thrilled and wanted it on his bed.

Mom knew that she would have to ask permission to leave the blanket there overnight since it did not have a label with Dad’s name on it yet. A care giver appeared at the door so Mom thought she could ask her what she thought but she explained that she was

new. Suddenly another care worker barged into the room with her hands on her hips and yelled at Mom repeatedly that she knew the rules! Mom knew that this same care giver was the one who had poked a patient in the face with a fork. As Mom packed up the blanket, she approached the care worker and she explained to her (did NOT threaten) that if she tried to poke Dad in the face with a fork, Dad would not stand for anything like that and that she would find herself on the floor. The care giver became livid, turned on her heel and left. A short time later a security guard came to the door. He asked my Mom to come out in the corridor. He explained that visitors were not allowed to harass the staff–that they were there to take care of the patients and do their jobs. Mom told the security guard what she had said to the care worker. He repeated himself several times without listening to anything Mom had to say. He kept shutting her up then said, “Do you know that I can put hand-cuffs on you?” Imagine! Handcuffs on a small, frail 80 year old woman! Mom was scared and thought that he had a gun so she moved back toward the door. The guard aggressively told her that she ‘had an attitude’ and asked who was in the room with Dad. When my brother came out of the room he became irate and insisted that the guard put the cuffs on him. He knew that the security guard would do no such thing since he would have to take them both away to a police station and there could be no charges laid. After all, what had they done? The security guard then insisted in a very loud voice that both my Mom and brother ‘Get out’. Mom tried to explain that she’d made supper for Dad and could she at least feed him before leaving? The reply was repeatedly ‘No, no, and no!’ At no point did he or anyone else for that matter ever ask Mom or my brother what had transpired.

This is only one small example of what care looks like in these “care” facilities. The employee in question did not lose his/her position. Our guess is that s/he was probably not even admonished.

What astounds us is the reaction that many care workers have to the behaviour of dementia patients. It’s as though they believe that patients’ behaviours are well-thought out personal affronts and attacks upon their characters. Many times we’ve been given to believe that when

my father has an aggressive episode, he’s the only patient who has ever exhibited these kinds of reactions. They leave us feeling that he belongs in prison!

During February 2018 a nasty outbreak of scabies occurred at the Villa Caritas . The entire place was quarantined for 6 weeks. During the 5t h week, at her insistence Mom was allowed to visit Dad for 30 minutes every second day. She was shocked to find Dad not only unclean but so cold. The temperature had been turned down very low. The patients were given thin cotton pyjamas to wear and little hospital slippers that did not stay on their feet. Mom was a little past her time one night. The supervisor/manager of the home came in and yelled at her to ‘Get out, get out, get out NOW!’

In that same facility Dad’s eye became infected on three separate occasions ! The ‘resident’ doctor in the facility may have looked in on Dad once a month or so but we are not sure. The third time that Dad’s eye became infected Mom told the nurses at the nurses’ station that Dad’s eye was in terrible condition. When was the doctor going to look at him? She was told that he was going to be in soon 9, 10, 11 o’clock and so on. Mom was there at 9 am. Dad was in agony. The doctor showed up at 4:30. He was in no rush to complete the paperwork. Finally by 5:30 pm Dad was transported by ambulance to the Royal Alexandra Hospital. When he was seen there, Mom was told that Dad could have lost his eyesight entirely. Is this care?

A worker witnessed a caregiver picking my Dad up off the floor from his bed one morning. Dad was complaining that his leg was burning. Mom found out about this at

9:30 am. She and my brother left Leduc and drove to West Edmonton where Dad would be hospitalized. They were shocked to discover that Dad was just being loaded into the ambulance when they arrived at 10:00 am! Dad had to have emergency surgery on his hip. The emergency doctor was furious! He kept asking Dad repeatedly how this had happened. Of course Dad was unable to respond because of his dementia condition. When the doctor found out that Dad had come from the Villa Caritas facility he angrily yelled “Why are we getting patients with broken arms, legs, people who’ve fallen, bruises, broken noses? What the hell is going on over there?” He was livid! “Tell me what happened Mr. Gagnon! Tell me now!” he shouted.

My father shows evidence of new bruises all the time. He is not alone—many other patients look the same. Surprisingly no one on staff seems to know what has happened or where the bruises have even come from. My father’s room mate, who had his faculties, told our family about how mean and rough the staff is with him. The room mate’s face too, not surprisingly, was always covered with bruises and scrapes which he said were the result of his falls. The gentleman sadly passed away shortly after falling and hitting his head one last time. Odd.

My father sees no end of bruising and falling. It was interesting to note that the Salem facility balked and refused to firstly find a proper fitting wheelchair and equally importantly, restrictive belts and/or tables for my father. We are confident that this added to the brutality he suffers. It’s interesting that other facilities such as the Villa Caritas were able to fit and restrict Dad whenever he needed it.

Our family feels that my father is being over-medicated. He is getting so many drugs now that he does not wake up. We have questioned the people concerned about this. It doesn’t seem right. When he was first moved to the Salem facility in July, we were told that he was medicated to help calm him down until he became adjusted to his new surroundings. Yet he was still taking a number of other drugs as well. We discovered that the amount of his medications had also been increased. We were assured that as he settled in, some of the medications would be reduced if not removed altogether. My mother kept making appointments with his doctor asking him to review these prescriptions and to come and look at my father. After several attempts, the doctor threatened her with sending my father away to another facility. The meds have still not been altered. One of the emergency doctors in a hospital questioned why Dad was getting a drug that is normally given to cancer patients.

My mother is a victim of constant bullying and is filled with fear of saying anything against anyone. Her feeling is that a grievance of any kind from either her or indeed anyone in our family will have direct negative repercussions on my father. Private conversations with other family members who come to visit their loved ones have said that they too suffer the same feelings of fear. It would seem that the more we talk about this with people, the more we discover that we all have the same feelings— that we all have to take whatever we are givenwith a large ‘grain of salt’, be grateful and learn to shut up. Families have learned to ‘walk on egg shells’ fearing that their loved ones will suffer in one way or another.

Even patients in their moments of clarity say how badly they are treated and that no one would want to live ‘in a place like this’. My mother has been threatened more than once by the staff of my father’s present home —that he will be moved to another facility.

My mother cares for my father like no one else. She is with him every day. She feeds, washes, shaves and clothes him. She plays music for and sings with him. She

cooks at home and brings good food in for him to eat. She spends time talking and reminiscing with him. She misses him and loves him more today than ever before. She takes home his laundry to do daily and in her ‘spare time’ she crochets blankets for him. She continues to do so even though they disappear. We are left wondering why families are asked to provide permanent labeling for personal items of patients. We understand that items seem to be up for grabs since patients wander in and out of any room but when items of value such as false teeth or glasses are lost, there is no real concern expressed by the staff. The collective attitude is one of ‘who cares’. My mother has had to replace my father’s teeth and glasses 3 times—he still has neither.

We are at the mercy of the system. If we were independently wealthy, Dad would be at home with vetted, private caregivers to help out on a permanent basis. But we are not. My parents get financial assistance from the government for low income seniors. Both my sister and I live far away and we struggle also to make ends meet. Our brother suffers with a medical condition and gets a small disability pension. He is nearby and helps when he can.

We are all quite exasperated by the situation. We have had conversations with the doctors, nurses, care givers, social workers and even the managers of these facilities yet nothing seems to change. Things only seem to get worse.
As a family we feel helpless when our 81 year old mother calls us in tears because Dad isn’t awake.

There is such a lack of honest communication. It is easy to see that the social workers in these facilities also walk a fine line. They want to help but are limited by what they can and cannot say.

Can you imagine your loved ones, or God forbid yourself in one of these facilities? How would you feel?

We have decided to take a step forward and speak out.

***Since this letter was composed in late October 2018, my father Ernest Gagnon sadly passed away on November 5, 2018 at the Leduc Community Hospital.
With the exception of the Leduc Community Hospital and all other hospitals, my father’s treatment has been abhorrent at the best of times.

Whenever Dad became aggressive or violent, we were always led to believe that he was the ONLY dementia patient who EVER acted in such a manner. Why were we made to feel this way?

Yet care workers would yell at him to get up, force him to move OR grab him and hold him down to change his disposable underwear. 5 people at Salem Manor were “required” to change him and yet there were 2 very kind ladies who, when they were on duty could take care of Dad’s needs without any problems. Very few, like these good people, approached Dad with kindness to explain what the plan was. These kind caregivers are few and far between.
In hospitals Dad was only ever treated with kindness and professionalism.

Nurses and caregivers there are properly trained. The excuse that private homes for dementia patients are short-staffed does not wash. Hospitals are also very short-staffed but they CARE.

Dementia care facilities should have cameras installed everywhere for protection—both for themselves but more importantly for the patients.

On November 5, 2018 we lost our dear father and my mother lost her wonderful husband of 64 years. In all of the paperwork he was only just another patient but to us he was the most wonderful father in the world . He provided us all with a lovely home and healthy life filled with happiness and security. His thirst for knowledge led him to become a self-educated man who successfully helped grow this great province. He began farming at the tender age of 15. In his 30s he was elected to the Pedigree Seed Growers Association of Canada…something that filled us all with such pride. He helped immigrants who became good friends to establish very successful businesses and to be welcome as part of a thriving community. He gave of himself to his country, his province, his community of Falher, and mostly to his children and his beloved wife Celine.

If our story does ANYTHING to improve the agony that the dementia patients of our province, indeed our country suffer, then our father’s misery and passing will not have been in vain.
Yours truly,
Celine Gagnon, Susan Gagnon-McChesney, Gail Gagnon and Douglas Gagnon
November, 2018