Dementia can rip the guts out of a family.
The word itself isn’t that scary-looking. It actually has a nice sound as it rolls off the tongue.
But the disease itself is sly and slippery and sneaks up on a person while they are looking the other way.
It was probably in 2014 when I noticed the first symptoms in my mom. Looking back, I can see where the signs were there long before then.
Just little things. Forgetting ingredients in dishes she’d been made forever. The TV remote always seemed to give Mom issues but worked fine when we were home. Missing the turn to my sister‘s place out in the country.
Dementia is a disease that can strike anyone of any age. It is not just a disease that afflicts the elderly, even though we tend to associate it with our senior population as it worsens as we get older.
From what I learned over the years my mom suffered from dementia there are as many reasons why it strikes one person and not another as there are ways to prevent it from happening.
Vascular dementia can be caused by strokes, tumours or head injuries, while Alzheimer’s disease causes damage to the brain.
Frontotemporal dementia is a group of diseases in which parts of the brain (the frontal and temporal lobes) shrink, or atrophy, causing changes in personality and behaviour.
Doctors suspect an inherited cause if someone under 50 has symptoms of dementia as diseases that cause dementia can run in families.
The information above comes from the Alberta Health website which is where I started my journey into trying to understand what was happening to my mother.
Over the years I read brochures, books, websites - any literature I thought would help me understand the disease and what to expect as it progressed.
My mom was strong, independent and had a heart of gold. She was also outspoken and never feared putting her beliefs on the line and defending them.
She passed many of these beliefs on to her daughters and I remember some rip-roaring fights in my growing-up years.
But I also remember her kindness and understanding. The matter-of-fact way she dealt with problems when they occurred.
She trained in England as a midwife before emigrating to Canada in her early 20s with her best friend, Janet. They both received their certification as RNs in Ontario before my Mom made her way out to High River, Alberta.
There she met my dad at one of the parties held in the nurse’s residence.
He thought she was snooty and she thought he was arrogant.
A match made in heaven.
They had a pig farm in Alberta, where I was born before moving to Pincher Creek where Dad managed a cattle ranch.
We lived near Table Mountain and the elevation was having ill effects on my sister’s health so we ended up moving to Sundre where mom was hired on as a nurse when the hospital opened. And the years moved on. At first, mom worked solely as an RN. She organized and taught pre-natal classes and delivered a good number of the babies in town. She set up and ran the first physiotherapy department. Eventually, she became the assistant head nurse at our hospital.
A half-hour grocery trip took two hours as everyone knew her and would stop to talk. She knew all their names and their family’s names.
She joined the school board and volunteered at the local thrift shop. She was part of both the hospital and church auxiliary and always found time when my sister and I had a fundraising event to go to.
She sang in the choir and used to make me crazy growing up as she was always humming one of her favourite songs under her breath.
I thought she and Dad would come to blows when he was teaching her to drive - she fired him and got a friend to teach her instead.
She loved to cook and enjoyed having friends over to dinner on a regular basis.
The church was crammed to overflowing at her funeral back in 2022.
Why does any of this matter? It matters because this is the person who was stolen from me one piece at a time over the years she suffered from the disease.
There are three phases to the disease separated into seven stages: Stage One - no cognitive impairment, Stage Two - very mild cognitive decline, Stage Three - mild cognitive decline, Stage Four - moderate cognitive decline, Stage Five - moderately severe cognitive decline, Stage Six - severe cognitive decline and Stage Seven - very severe cognitive decline.
My mother was Stage Three when she was officially diagnosed. At the time she was living in the independent living seniors complex in town.
I got a call one afternoon in October of 2015 from my sister. There had been a couple of incidents at the lodge (Mom had gotten angry for no apparent reason we were told) and the manager had informed us we had two weeks to find more appropriate accommodations for Mom and to move her.
There was a new facility opening in our hometown the following June that would have an area devoted to residents needing full-time care.
Even the promise to hire 24-hour care to look after Mom was not enough to keep her in familiar surroundings.
She had full-blown anxiety by this time and even minor changes had a huge impact on her. She was so angry with me when I told her the news. The rest of that day she walked around the complex telling anyone who would listen that her unfeeling daughter was forcing her to move.
I had a lot of anger myself at being forced to do this to her.
I spent a week in Stetler getting her settled into her new home. A battery of assessments was performed to see where mom’s cognitive abilities were at. The end result was she was then stage four.
It felt odd the first few times I had to use the password to get into the cottage (as they called the wards) to go visit. While I could understand the rationale of preventing the residents from wandering it felt a bit like prison.
There was only one time I was grateful for the condition. In April of 2016, I had to tell my mother that my older sister had passed away unexpectedly.
I did not know what to expect and it broke my heart when she fell apart in my arms. We spent the day talking about Stacy. The next morning it was like a month had passed and the emotional rawness was gone for my mom.
This brought a whole new reality to the situation as suddenly I became solely responsible for mom’s care. In the past, my sister and I had shared any decisions to be made. Now, it was just me.
Mom began to lose her balance and fell on a regular basis. I began to cringe when the lodge’s phone number appeared on my call display. Sometimes it was to notify me of a fall. Other times to tell me she had gotten into a scuffle with another patient.
Living in B.C. I was not able to visit as much as I would have liked. I looked into bringing her out here but came to the realization that while this solution might have brought me ease of mind it was not necessarily what was best for her.
While I sent care packages throughout the year it became a habit to bring a few boxes of her favourite chocolates each time I visited. I would tear one open and we would eat far too many while we grinned at each other in delight.
We would go for walks in the hallway - up, down and back again. There was a cat who lived in the cottage and she would be so amazed each time we came across him.
On one visit I was helping mom change her shirt after lunch. It was a new one I had brought her and the opening was still a bit tight. I got the shirt stuck on her head and could not pull it off. She thought that was hilarious and before long we were both laughing like crazy.
When the pandemic hit, the lodge instituted Zoom calls as a way for families to stay in touch with the residents.
They became a lifeline for me as mom’s symptoms progressed. Each week I would mine the photo albums for pictures of mom’s prize flower beds and other things that had brought her so much pleasure in the past.
The recreation director had reached out to me and told me how much it can help to keep the mind of a dementia patient engaged. It can help slow the deterioration.
I sometimes wonder if she came to regret that - I began to sing mom’s favourite songs and recite her favourite poetry. I read her stories and told bad jokes. I pulled out recent pictures of the kids and grandkids and told her what was going on in our lives. I asked her questions and did my best to make her laugh.
Over time, the connection faded. I held up both sides of the conversation as she forgot who I was and gradually lost the ability to talk.
On those calls where I would somehow break through the wall and a spark of remembrance shone through I would cry my eyes out at the end of the call.
I grew to alternatively anticipate and dread the yearly care conferences with the medical personnel. Discussing her drug regimen, where did her cognitive abilities lie and did mom’s goals of care designation need to be changed. So many decisions to be made while trying to keep what mom’s wishes in the matter would be.
The one thing I learned in this journey is that people suffering from dementia are still people with feelings and the right to be respected.
It is easy to get frustrated when it seems like you have explained how the remote control works a dozen times in an hour. Or have answered the same question for the umteemth time. That’s where patience and understanding are crucially important.
The last time I saw my mother she was a shrunken husk, the breath rattling in her chest. She was still my mom but over the years dementia stole Anne Grisswell away.
As I kept her mouth moist and wiped her forehead with a damp cloth throughout the night I kept up a running litany of our memories from over the years. I remembered for both of us.
I had said goodbye to her so many times as the disease stole her from me over the years I wondered if I would grieve in the same way.
But when the nurse turned to me in the early hours in the morning, the dam burst and I grieved all over again.