Bits and Bites of Everyday Life

I’m finally ready… to talk about ALZHEIMER’S 

True North Perspective
Alberte Villeneuve-Sinclair is the author of The Neglected Garden and two French novels. Visit her website to learn more
I have been toying with the idea of writing an article on Alzheimer’s for almost two years, ever since my sister-in-law, Arline, proposed the subject. “I’m not ready, I explained. It’s too raw! Too close to home…” You see my Dad died in the final stages of the disease. His sister, Yvette, died earlier after fracturing her hip and was spared what I call “the vegetative state” of the disease. Dad’s youngest brother also suffers from Alzheimer’s as does my mother.  

So you may understand my reluctance to talk about it! The disease has affected many aspects of our family life and has caused division. When Dad was diagnosed, I was writing a novel about growing up on the farm in Cumberland. My inspiration went down the drain as I took center stage in having him diagnosed. This novel may never be completed unless my grandchildren take a vested interest in the story of how I grew up on the farm in the 50s and 60s.  

It took a fine article by J.C. Sulzenko, “In the dark about Alzheimer’s” to give me the courage to write about Alzheimer in my family. (I will come back to J. C.’s article later.) 

As you may know, around 500 000 Canadians suffer from Alzheimer’s and other types of dementia.  Predictions are that this may double in the next generation. Some worry that it will paralyze the Canadian medical system. One in seven Canadians is now 65 and over and age is a major risk factor linked to the disease.   

  Alberte's mother is calm now, but her memory is gone.

There are various types of dementia, Alzheimer being but one. My father suffered from Lewy Bodies dementia which is a multisystem disease. The early signs may have showed up ten years before his diagnosis but they were denied or covered up by my mom and Dad, himself. He would, for instance, forget to bring his wallet during an outing, get lost while driving and would become frustrated when you had to remind him again of something. Instead of participating in a conversation, he just smiled and nodded. If you asked him his opinion, he would come up with something way out of line. 

Lewy bodies dementia (named after the scientist Friederich H. Lewy) often has a rapid onset as abnormal proteins, clumps of alpha-synuclein and ubiquitin deplete the brain of acetylcholine, causing a disruption of perception, thinking and behaviour. Lewy bodies dementia sometimes exists in conjunction with Alzheimer’s and Parkinson’s. Features of this disease, also called DLB, include greatly fluctuating cognition with great variations in attention from day to day and hour to hour. The other frightful thing is recurrent visual hallucinations. These involve perception of people or animals that aren’t there. I remember one day when my parents came over to visit. Brian, my late husband, invited Dad to sit in the living-room with him. Dad chose to sit right beside Brian and all of a sudden, he grabbed Brian’s arm. “I’m being followed by two bad guys”, he said as he looked around and panicked. “There they are! Right there! Do you see them?” When Brian looked in the direction Dad was pointing to, he realized what he was seeing was their reflection in the glass doors of the fireplace. Although my husband tried to convince him it was a reflection, my dad was unconvinced and remained agitated. 

Dad was often confused and easily disoriented. One day, we dined at a restaurant with Mom and Dad who soon needed to go to the washroom. My husband showed him the way and when Dad didn’t return, Brian went to check on him. This particular restaurant was divided into two rooms and the one Dad had to cross had a mirrored wall. This totally disoriented him as he looked into the reflection and saw no one he could recognize. He just stood there, frozen and confused! 

Soon, everyday jobs became impossible as he forgot the mechanics of chores from his everyday life: how to boost a battery, unlock a door, repair a fence, start the tractor or make a phone call… Even unwrapping a present became a challenge! Frustrated, he would yell at Mom or walk away. He started hiding things like the car keys, clothes or money in order to control the situation. Mom would often panic and yell back or scold him. He became a sloppy eater, had problems dressing himself, prowled around the house at night, frightened and confused.  

Mom, Diane and I joined The Alzheimer Society of Ottawa support group in order to better understand the disease and help Mom cope better so she wouldn’t yell at him, which usually made matters worse. Homecare support services were set up and for a while Dad enjoyed a weekly daycare outing in Ottawa. 

Before long, even that wasn’t enough! DLB sufferers often experience problems such as repeated falls, fainting and transient loss of consciousness that can be life-threatening. Dad would often run away and one day while crossing the highway, his legs gave out and he fell in the middle of the road. Fortunately, the oncoming cars were able to stop in time… but he could have been killed.  

It was high time to move him to a care facility! We chose the Sarsfield nursing home because my mother could drive there without difficulty and he would still be in a rural environment. The disease progressed quickly. Soon, he no longer recognized us; he became incontinent and needed to be helped during mealtime. The aggressive behaviour persisted and he would become agitated if told differently about something. I remember one day when he was more lucid, he announced that his Uncle Louis had come to visit. His Uncle Louis, a favourite uncle of his, had died many, many years ago. Dad didn’t recognize or remember his own children but for some reason, Uncle Louis’ memory had been clear as spring water on that day. 

Dad died in May 2001. Because he had a healthy heart and a good appetite, he lived about ten years after the diagnosis but there was no quality to his life as he moved into a vegetative state. Only music, old favourites such as “You are my sunshine”, would bring a sparkle in his eyes.  

Little did we know we would have to deal with Alzheimer’s again but it soon became apparent, except to our youngest brother, that Mom was showing signs of memory loss. She became paranoid and started hiding things, all the while accusing other people of robbing her. Healthy eating suffered as she lost most of her cooking skills. Personal hygiene decreased as she relied on her homemaker for her weekly bath. Her driving became erratic and dangerous as all rules of the road blurred and we had to force my younger brother to take away the keys to her vehicle. As happens in many families, he was in denial. Time to step in again and intervene! I got in touch with social services and asked that Mom be tested. Once diagnosed it became clear that life at the farmhouse was becoming too dangerous, so we decided to move her out. Since Mom’s Alzheimer’s is a less aggressive one, we chose Jardins Bellerive, a residence for autonomous seniors in Rockland, her hometown, where she could still be close to her extended family and friends. She wasn’t happy about the move and would constantly criticize it, all the while enjoying the new-found companionship and social activities. She became very much a flirt, something unusual that eventually made her unpopular with some of the residents.  

When it became obvious she was no longer autonomous enough, we moved her to a more specialized facility in Orléans (Résidence St. Louis) where we could visit her more often and she could get the required care. Again, the paranoia surfaced and Mom started swearing, something she had never done before. She kept saying thieves were coming into her room and stealing things. Her phone had been programmed so she would constantly call us with incredible stories. It was a very frustrating time.  

Now she is calm; the paranoia seems to have abated but her memory is gone. She cannot muster even a simple conversation as the significance of many everyday words eludes her. She simply laughs and raises her shoulders to indicate she has no clue. Last Sunday when I visited her, she must have asked a dozen times how many children I have. “Only one, Mom!” I repeated for the umpteenth time, showing her pictures of Baby Jessie, my daughter and the clan. She held a photo of Diane’s son with his two year-old boy but had no idea who they were! Even though she always enjoys our visit, it is forgotten as soon as we leave. 

J. C. Sulzenko’s “In the dark about Alzheimer’s” mentions that it is important to inform children about the disease. On New Year’s Day, I took my granddaughter with me on a visit to my sister’s place where Mom was celebrating with them. Mom was totally confused and a bit agitated. She kept asking me if I would be taking her home and although we assured her she would go back with her niece, Mélanie, it was of no use. Mélanie was a stranger to her. Lea, my granddaughter, was taken aback by her great-grandma’s behaviour. She kept looking at me with a very puzzled look on her face! When we left, she said, “Grandma, you have to keep doing yoga and writing because I don’t want you to ever forget who I am!” 

If only it was that easy! There is one consolation: DLB is not thought to be a strongly hereditary disease but there is no cure for it and like Alzheimer’s, treatments remain palliative in nature. New guidelines have been set for diagnosis because the sooner treatments start, the better as it slows down the progression of the disease. New tests such as brain scans, MRI scans and spinal taps are proving useful in the discovery of biomarkers which can indicate early Alzheimer’s. 

The purpose here is to delay the start of the disease to the point of eradicating it. One thing is sure, I wouldn’t wish Alzheimer’s on my worst enemy. When my granddaughter asked if I intended to live till 100, I explained that I wished to live as long as I could be useful, not longer. I hope to be granted that wish as I never want to become a burden to my family or to society. 

Research has shown that a healthy heart is linked with a younger brain, so stay healthy! You know the rules: exercise, eat healthy, watch your weight, don’t smoke, visit your GP and get tested, stay connected with family, friends and your social network. Love life!

Please go to this link at the Hamilton Spectator of January 17, 2011, to read JC's article.

Blessings to all!