I was ten years old when I first noticed the problem. My whole family was attending my brother’s hockey game on a typical Thursday night. My Papa came to every game since I could remember. As we prepared to leave, there was only one person missing, my Papa Joe.
With no sign of him in the arena, we went out into the parking lot to check if he was taking a minute and having a smoke. But to our surprise his car was gone. Confusion ensued because he never left without congratulating my brother on his performance. Luckily, not long after, he came back. He had thought he was meeting us at the house but when he got there remembered the hockey game.
Alzheimer’s is hard on a family. It’s not something you want to admit is happening and is even harder to see someone you love have to go through. In 2009 it struck my family. My Papa Joe was diagnosed with Alzheimer’s as well as lung cancer. Then, in 2013, he moved into a long-term facility.
This was especially hard on my Nana. She didn’t want to admit she couldn’t take care of him full-time and the stress that it brought, with her worrying through the days and nights, was too much. The truth is my Papa couldn’t be left alone. At the long-term care facility he is able to get 24/7 assistance. But still, my Nana takes him his coffee and muffin for breakfast every day and makes sure she’s there when he’s going to sleep.
Over the years, he has had good days where he’s more coherent and then bad days where he shuts himself away. This year, however, his memory has begun to deteriorate rapidly to the point that he is unsure who I am when I walk into the room and he has trouble speaking. But the one thing that never changes is his sense of humour and that’s something I will always cherish. No matter what has happened he can always laugh about it.
That being said, there are still tough times. My Papa loves going for drives and he’s chatty throughout the whole ride. The toughest part is bringing him home, and having the same conversation about where we are taking him. Even though I know it’s coming, it doesn’t make it easier.
Alzheimer’s disease doesn’t have a cure, but there are ways to help reduce the risk. Go out and be socially and physically active. Live a healthy lifestyle and don’t wait until you are older. You can try and prevent it now.
Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.
What is your connection to Alzheimer’s disease?
My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.
Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs. Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey. In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.
What were the initial warning signs that led you to believe your mother’s health was changing?
She began taking notes when she and I would have conversations over the phone. When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.
Mom also began repeating stories and had difficulty finding words, which progressed over time.
Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer. This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.
What support, if any, did you access?
I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.
I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.
The Alzheimer Society provided all that I needed and more. I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.
Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed. This help proved invaluable over the course of Mom’s journey.
As a family, we learned to live “in the moment” with Mom. We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.
When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.
Read more stories like Elizabeth’s.
First Link® outreach worker
Alzheimer Society of Oxford
It is difficult to understand Alzheimer’s disease until you are living with someone who has it. For me it was when my Grandma got it. She had lived with us for my entire life, and played a huge role in my upbringing.
First it was the little things, simple tasks that we take for granted, such as preparing a meal. While I could deal with changes like that, the hardest part was accepting that someone who had always protected and cared for me had suddenly become someone I had to take care of.
For a long time, I wanted to ignore her struggles, hoping that if I closed my eyes to the changes happening right in front of me, I could prevent them from happening altogether. But I soon realized that with a progressive disease like Alzheimer’s, change was inevitable. Knowing that her condition would deteriorate gave me the strength to overcome my own fears and help her.
And helping care for her only brought us even closer. Although her behaviour changed, her identity remained and she was still a person like everyone else. While many of her memories were no longer accessible, I could still remember for her. And sometimes, she would remember too.
For many people, a serious disease like Alzheimer’s becomes an emotional fork in the road. You can choose to turn your back on someone or you can choose to embrace them.
It can be far too easy to turn our backs on those who are suffering, particularly for young people, who may consider themselves too far removed from the suffering of the elderly. However, it is important for young people to face the challenge and look on dealing with the disease as part of their own personal road to growth.
Caring for my grandma has helped give me amazing insight into the struggles of those diagnosed with Alzheimer’s disease, and I truly hope I can use this knowledge to help others, both the patients themselves, and those who have yet to have any first-hand experience with the disease.
Want to share your story? Contact Ryan MacKellar (firstname.lastname@example.org).
When I think of dementia and what it entails I think of a “living loss”. On some level, no matter what our age, we look up to our mothers for guidance and advice. It is difficult to acknowledge the changes that come with dementia. Suddenly it seemed my mother was not the mother I had known for my entire life. It was a huge loss for me and for my sisters.
My mother has been my greatest teacher. She taught me to be kind, to express gratitude and to treat all people with respect. I often remind myself of this as my mother and I journey through her dementia.
Family still means everything to Mom. She often tells me that her heart jumps out of her chest when she sees me get off the elevator. She hugs me ten times during our visit and tells me she loves me, thanking me over and over and over again for coming to visit with her. Expressing her love verbally and affectionately comes more easily as her dementia progresses.
It is a beautiful thing.
She used to be very reserved this way. There are quiet times when we simply sit and hold hands or walk together down the halls admiring the art work or the wreathes on other residents doors.
On some levels my mother is aware of her failing memory and she is embarrassed by this. I try to reassure her that it is my turn now – it is my turn to do the remembering for her. I tell her that while she may forget, I will always remind her of the special times we shared as family and the moments she still shares with my sisters and me.
I visit my mother often because even if she cannot remember the visits, but I remember them. She may forget the time I spent with her within minutes of my departure and that’s okay. But while we are together she is happy and fully present – and this is what really matters.
My mother often shares with me that in spite of her failing memory there is much to be grateful for. She is grateful that she can walk and talk and breathe easily. My mother is a gracious woman. She has always been kind and compassionate. And while there have been many losses she still exudes compassion and kindness to those around her.
Often we will pick up a coffee and take it with us as we drive around the city to all the old familiar places that still light up my mother’s eyes. We drive downtown and she points out where she used to work and where the theatres were and the clothing stores and the restaurants. And we drive to the different areas of the city where she lived throughout her life and she tells me about life back then. Her face lights up and we both smile. She reminisces about going door to door selling gladiolas as a child. About lying in the fields watching the clouds drift by. About working in her father’s store and her favourite teachers. She talks about life as a young woman and mother. She talks about my dad and how much she misses him. Sometimes I play one of her favorite CD’s when we are out driving and then we sing together. It doesn’t matter that she forgets some of the words, or that we listen to the same songs over and over again. It doesn’t matter because it makes my mom happy which in turn makes me happy.
Sometimes silence is her voice and we simply enjoy being in each other’s company.
My mother has a small white board hanging on the wall just inside of her room. As I am ready to leave after a visit I will often write a quote on the whiteboard so my mom can read it whenever she enters or leaves her room. She tells me that she reads and re-reads them often throughout the day. Perhaps it really isn’t this way but for the moment she is happy to see me writing a message and she asks me to read it to her before I leave.
Today I wrote: “A mother’s love is reflected in the eyes of her children.” Her face lit up and with heartfelt expression and she said: “That’s beautiful… thank you.”
My mother will always be a gift. She was my first true love and that will never change.
Beth Haas, Behavioural Support Worker for the Alzheimer Society of Oxford, shares her connection to Alzheimer’s disease.
Can you share what your personal connection to Alzheimer’s disease has been?
First it was my grandmother who had Alzheimer’s disease. It was still called senility in the 1970s. At an early age, I had to travel every other weekend to support her as she struggled to remain in the farmhouse where she had spent all of her married life.
And then, years later, Alzheimer’s struck again. My mother began to experience memory loss. I witnessed her efforts to appear normal , but she recognized warning signs she had seen in her mother. I was 24 when she was diagnosed with Alzheimer’s disease.
And still the diagnoses keep coming. My mother-in-law was next, and this occurred while caring for my father-in-law, who had vascular dementia. For a number of years, my husband and I juggled living far away with caregiving.
Were there initial warning signs that lead you to believe your mother’s health was changing?
With my mother, it was a year and a half before she was diagnosed. She had short term memory issues but it went beyond that. She seemed more fragile, unsure of herself, handed me her car keys to drive if we went out together, deferred to my father more often and became weepy. Her handwriting became shaky, spidery.
My siblings and I thought it was depression, specifically empty nest syndrome. She had no children at home for the first time in almost 40 years. She defined herself as a mother and she excelled at it.
Years later, while tidying my parents’ bedroom, I came across a letter that she had written to a talk show host after an episode on dementia. In her letter, she described noticing signs of memory loss in herself at least 3 years before any of us recognized changes. This seems to be supported in emerging research today: subjective cognitive impairment not yet detected with today’s cognitive testing often develops into dementia. What was heartbreaking was how she was so successful in hiding this from us for so long.
There are 10 warning signs of Alzheimer’s disease. People may think these symptoms are a part of normal aging but they aren’t. Learn the signs here.
What support, if any, did you access?
The Alzheimer Society was brand new in the community where I lived. I attended one of their first support groups and it became a lifeline. I learned what we were experiencing at home was not unusual and, more importantly, that I was not alone. They provided strategies, contact information for other community resources, and an outline of what lay ahead. I inhaled it all and took it home to my dad and siblings.
Out of this came fuller understanding, more patience and tolerance for Mom and greater support for my dad who was the primary caregiver.
What propelled you to work in this field?
My original goal in university was to work in gerontology but then life intervened. My husband found employment in Europe. By then, my grief around my mother was too much to work in this field. Fifteen years after later when I was back in Canada, I was offered a position with the Alzheimer Society of Oxford.
My experiences help me understand what family members live with. It spurs me to think that I am contributing even in a small way, giving back to make the life of someone else’s mom a bit better. That may sound clichéd, but my mother’s life guides me in most of what I do at work.
Learn more about the 10 warning signs of Alzheimer’s disease.
Beth Haas, Alzheimer Society of Oxford