Alzheimer’s disease affects the person who is suffering, their family and their caregivers
It’s hard to describe the feeling of looking into someone’s eyes who you love more than anything and knowing that they can’t remember who you are. Every time I looked at her, I could see the confusion. I could feel the pain of her being surrounded by “strangers,” the strain that must have been on her mind. I wanted more than anything to just hold her, tell her that my family was taking great care of her, tell her I loved her and to hear her say she loved me too. But I couldn’t.
When my gramma (my grandmother) was first diagnosed with Alzheimer’s disease in 2012, it came as no surprise. I was relatively young, but old enough to be able to see what was unravelling. I could tell in the little ways that she was starting to be forgetful.
It began with her getting frustrated by not remembering certain names or words, or misplacing items. Slowly, it turned into her momentarily forgetting where she was, or the year. She would talk about her siblings or her husband — both long passed — as though they were still alive. It would be moments of lucidness, followed by disorientation.
For a long time, when I went to see my gramma she was in a good mood most days. I was fortunate that she was excited to see me because I wasn’t someone who was always around. She was the type of person who loved company and was constantly inviting people over to the house. “Oh wow, it’s been so long!” she’d say to me with a big smile on her face, regardless of whether or not that was actually the case. And she still had so much personality. She never lost her sense of humour or ability to crack jokes at just the right moment.
The last few years, it rapidly got worse. She started forgetting more and more words, and often I couldn’t even understand what she was saying. Her once positive disposition and her desire for everyone to visit changed. The last time I ever saw her, at the beginning of this year, she was no longer the same person I had always known. She was angry — rightfully frustrated. She said words I never pictured coming out of the mouth of my sweet little gramma. As much as it hurt me to have those moments with the woman I loved so dearly, it hurt me more to think of what disarray must have been going on in her head.
April 6, 2020 my heart stopped as the words flashed across my phone screen: “I hate to tell you this but gramma passed away this morning.”
I was in Europe at the time for school, during COVID, with none of my friends and family from home. Yet I didn’t feel alone. I could feel her looking down on me, finally seeing the person I had become over the last few years that she had missed. I could feel her pride. And more than anything, I felt satisfied knowing she was at peace.
You see, I had lost my gramma years before she died. I could still see her, talk to her, sometimes hug her — and I do miss that — but I no longer have to feel my heart breaking all over again every time I see her. I know she is no longer in a battle with her mind. I know my aunt no longer has to dedicate her life to taking care of her, having the courage to face her every day and experience that feeling I wanted so desperately to avoid. And that’s what I don’t think is talked about enough: just how many people are deeply affected by Alzheimer’s.
Approximately 747,000 people are living with a form of dementia in Canada, a number that stretches to 44 million worldwide. Alzheimer’s disease is the most common type of dementia, accounting for 60 to 80 per cent of cases. It impacts a person’s memory, thinking and behaviour. It is a progressive disease, which means that it gradually gets worse over time.
At the moment, there is no cure for Alzheimer’s and no way to stop it from progressing. There are treatments — pharmaceutical and otherwise — that can help with common symptoms in an attempt to improve quality of life for those living with the disease and for their caregivers. The issue is that the drug treatments come with side effects, and in the case of my gramma, made her dizzy. This was difficult because I wanted to help, but didn’t really know how.
Lori Schindel Martin, a professor at Ryerson University’s school of nursing and president of the Canadian Gerontological Nursing Association, explains that people with forms of dementia, such as Alzhiemers, often experience intense emotions that range from feelings of joy to deep frustration. She says helping the individual focus on the strengths they still have can be a step in producing a more positive environment.
“We tend to live in a society that focuses almost exclusively on what we call responsive behaviours associated with dementia or personal expressions associated with dementia in a negative, stigmatizing way,” says Schindel Martin. “Individuals we know with dementia can experience joyfulness and belongingness and friendship in an equally, possibly stronger, perspective.”
Schindel Martin explains that it is important to allow people with Alzheimer’s to still engage in activities that they would have done in the past and are meaningful in some way, such as peeling a potato. Even if you only give them a scraper or let them rub it with their hands, it creates an emotional response.
She also discusses how it is essential to give those with the disease a bit of a reality check when needed, without invalidating their feelings. Family members and caregivers should acknowledge the emotion the individual is feeling and ask questions about it, while reminding them of the past in a way that distinguishes it from the present. The moment you can articulate this, says Schindel Martin, is when you can begin to give them back their memories.
“If you consider the brain like an onion, or a ball of wool, the more you peel off the layers of the onion and the stuff from at the core of their memory is accessible. We just have to help them find those memories and bring them back in so they feel a little bit safer,” explains Schindel Martin.
But there is no “right way” to deal with Alzheimer’s, which can make it even more difficult for families. Naturally, each person’s relationship with the individual is going to change. Family members take on different responsibilities, and might not always agree on what is in their loved one’s best interest. Family conflicts are common due to the nature of how different people are able to cope or react to the situation, or how much time they can spend with the individual.
“It is important to remember that different people react to the same situation in different ways,” reads an excerpt from the Alzheimer’s Society of Canada. It explains that some people cannot cope with the changes as easily, and therefore will need distance from the family. “However, some people who care for a family member with dementia find that their families experience a new kind of closeness, as they work together to deal with stressful situations.”
Some of the most common feelings families and caregivers experience are guilt, grief, loss and anger. I know these feelings personally. I have experienced them. Still, what is most important is to recognize that you are dealing with a stressful situation, and to do what you can to make sure the experience is the best it can be for the person dealing with it.