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Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

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Getting a dementia diagnosis – where do you start?

Getting a dementia diagnosis – where do you start?

It can start with something simple, like having trouble following your favourite recipe, or putting your car keys in the fridge. Maybe you’ve noticed small changes in your memory that are affecting how you do things day-to-day.

If you can’t quite remember things that should be straightforward for you, or if you notice changes in your mood or ability to communicate, make an appointment to see your family doctor right away.

Diagnosing dementia is a complex and difficult process. The first thing your doctor will do is try to rule out if it’s a treatable condition, like depression or even an infection.

By finding out what is causing your symptoms, you can get the right kind of care, support and access to treatments as early as possible.

Be prepared to start the conversation with your doctor:

  • Take the time to review the 10 warning signs of dementia. This is important because dementia is not a normal part of aging, nor is memory loss the only symptom.
  • Jot down the signs you’ve been noticing in yourself. When did these start? Have they changed over time? This information will keep your conversation focused.
  • Don’t be afraid to ask questions! Ask your doctor if your symptoms could be caused by another health condition.
  • Be sure to let him or her know about your medical history, including any medications you’re currently taking.
  • Ask your doctor to explain what tests you’ll need and how long these will take.
  • Will you need to see a specialist or a series of specialists? How will you need to prepare for these visits?

For more tips on getting ready for your doctor’s visit, download our Getting a diagnosis toolkit. It offers a whole list of questions to ask as well as detailed information about the warning signs and what you can expect during the diagnosis process.

And, if you’re concerned about someone else, we encourage you to pass our toolkit along.


Getting an early diagnosis helps you and your family take control of the situation, plan for future and live as well as possible with dementia. Learn more about the benefits of an early diagnosis

Erica’s story

Erica’s story

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.

Erica StevensonErica Stevenson

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

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.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

Why I work to support people with Alzheimer’s

Why I work to support people with Alzheimer’s

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-haasBeth Haas, Alzheimer Society of Oxford

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

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edy_grazianiEdy Graziani with her mother, Bruna