Support changes everything when it comes to people affected by dementia.
Charlene Callander is the President of the Board of Directors for the Alzheimer Society of Saskatchewan. Her dedication to the Society’s work and mission is driven in no small part because of her experience of watching her mother develop dementia: a story Charlene shares below.
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My maternal Grandma had Alzheimer’s and I watched my Mom go through so many emotions as she cared for Grandma. It was awful to see my spry Grandma – a person who loved to travel - fade away to the point where she laid in the fetal position on her bed.
The day Grandma passed away, my Mom got lost driving home.
My sister, Arlene, was able to guide her home safely as Mom was only a couple blocks from her home. This wasn’t the first time she had gotten lost; she had called me one day upset that she didn’t know where she was. Looking back now, there were other signs of dementia, but we didn’t realize it at the time.
Around 2003, Mom stopped attending my boys’ sporting events, which she loved going to and never missed. She also stopped coming over for visits. My niece lived with Mom and she noticed Mom’s forgetfulness was getting worse and that Mom was doing things like leaving the stove on.
When we got together at Christmas to bake our special family recipes, Mom struggled with ingredients and what to do with them. Her memory was not what it used to be and we would have the same conversation several times during our visits.
We knew these things were going on but kept wondering how this could happen; Mom was only in her mid-60s.
One day, Mom called Arlene and asked if Arlene could take her to a doctor’s appointment. When Arlene asked what the appointment was for, Mom had no idea. She had been seeing a neurologist a couple times a year - he would always perform his test for dementia, and each time she would score a little worse. It was so sad that she couldn’t remember the simplest questions.
After the incidents with her getting lost while driving, the doctor thought it was best for Mom not to drive anymore. This was devastating to her. How could we make her understand it was for the best? How were we going to make this work for mom? Her independence was slowly being taken away, bit by bit.
My oldest sister started taking her for groceries every week, while I took over her financial affairs and made sure Mom took her medications. Arlene was in charge of taking Mom to all her medical appointments.
Cards and phone calls stopped coming on our birthdays, something Mom was always diligent at doing.
In 2014, we had a big scare. Mom had a seizure that landed her in the hospital for several weeks. It was at this point my sisters and I came out of denial and knew we needed to ensure Mom received full time care. During the next 4 years, she began needing to be reminded of who some people were and how to get back to her room. Mom didn’t understand what was happening; in her mind she could do all her own care. I visited mom often and would leave with tears in my eyes, hoping it wouldn’t get worse.
In 2018, we moved Mom into long-term care back in our hometown. Arlene worked at this same facility so she would see Mom often.
And then, what I had been fearing for a long time happened. In the fall of 2019 when I went to visit, Mom didn’t know who I was. I will never forget that terrible feeling, how much I cried, and how mad I was at the disease.
Mom can still motor around in a wheelchair. She prefers one-on-one visits opposed to group activities. She will join in with sing-a-longs and church services but needs constant supervision or will wheel away.
Arlene visits in the evenings and helps with Mom’s care to give staff a break. Mom goes to bed early around 6:30-7pm and sleeps for around 12 hours. She likes hearing her bedtime prayer after she is all tucked into bed:
‘Before you sleep each night, tell the Lord goodnight, he listens to every prayer, and keeps you in his care’.
I have grand hopes for the future of this disease. I hope we find a cure. And I hope we find a cure before it’s my turn, so my boys don’t have to feel what I felt when my Mom didn’t know who I was. But, I certainly hope we can find a cure before my boys get it.
Thank you to the Alzheimer Society for helping me and my family understand the various stages of the disease, for everything they do to help people live well with the disease, and for their efforts to raise funds for research to find a cure.
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