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What’s love got to do with Alzheimer’s? A lot

What’s love got to do with Alzheimer’s? A lot

By Alex Westman

Mr. and Mrs. Alex and Donna Westman

My wife Donna and I met when we were just teenagers—she was 18, I was 16. Despite our youth, we understood early on that we had a deep connection. It was an amazing thing, really, and still is. There was magic in her and she saw something in me. I had a reputation as a bit of a scrapper, but she soon took care of that.

These days, I’m almost respectable. I’m a three-term municipal councillor in the Township of Lucan Biddulph, Ontario, and a 30-year veteran of the fire department. She made me who I am, and all these years later, Donna is still the love of my life.

Why am I telling you this? Because I want you to know that the love we share is the armour we wear when things get tough. And in 2009, things got really tough.

Mr. and Mrs. Alex and Donna Westman

That was the year she was diagnosed with Alzheimer’s disease. She was 47. I remember sitting beside her in the chair in the doctor’s office. I looked at her, and she looked at me, and I said, “we’ll get through this together.” And we have.

We’ve had help, of course. Donna’s sister Gale and our daughter Sara-Beth have been nothing short of amazing; their love for Donna shines through in everything they do for her.

My point, as I’m sure you are beginning to see, is that you can’t do this without love. This disease is big. It has teeth, and horns and claws. If we didn’t have love, this disease would destroy us both.

Now I don’t want you to think I live in some fantasy land. We’ve had our ups and downs. We’ve gone to marriage counselling. There were times we didn’t particularly like each other. But we always loved each other and we always knew we wanted to make it work.

Mr. and Mrs. Alex and Donna Westman

I remember vividly the spring following Donna’s diagnosis when we planted forget-me-not flowers in her garden. The garden has always been a special place where she tended to each plant as if it were the only one. The year before, we had planted daffodils for my parents who died of cancer. This spring, we wanted forget-me-nots for Donna.

When we finished, we stood back to admire our work. She put her head on my shoulder and I said, “It’s OK, sweetie. I’ll remember our life together for both of us.”

Mr. and Mrs. Alex and Donna Westman

Hope in the face of Alzheimer’s

Hope in the face of Alzheimer’s

One might think that having a disease with no cure wouldn’t leave a person with much hope to draw on. The truth is, if you’d asked me how I felt about the future after I was first diagnosed with Alzheimer’s disease, my answer would have been far from ‘hopeful.’ Then, one day, that changed.

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Dementia under 65: Where do they fit in?

Dementia under 65: Where do they fit in?

It was love at first sight when Sandy met Doug. They had both ended long marriages. They shared a passion for work, a love of travel, and had compatible plans for retirement. They clicked instantly.

The McLean’s married two years later and were in the midst of living the lives they’d dreamed of when Doug, a top executive, lost his job because of increased anxiety and diminishing cognitive abilities.

Things didn’t get better. Doug became depressed and delusional. He could no longer tell time or do math, and he struggled with his memory.

sandy-mclean2So they began looking for answers. Over the next three years, Doug and Sandy went to doctor after doctor without a definitive diagnosis. It wasn’t until a second neurological test that Doug was diagnosed with Lewy body dementia and immediately put on the right medications. Finally, his symptoms were manageable and the McLean’s were able to fulfill some of their travel dreams.

At 60, Doug is fit and physically active, and is keen to continue life to the fullest. Being active is good for him, but it’s a challenge for Sandy. Doug needs safe, non-judgmental environments, and many activity programs for people with dementia are for seniors 65 and older. Doug doesn’t feel like he fits in.

Sandy is his 24/7 caregiver and advocate. She makes sure Doug keeps busy and plans all of his activities. But that doesn’t leave much time for herself. And, that dream of moving into a house they built outside of their city has been gently let go.

The Alzheimer Society of Manitoba has been a lifeline for Sandy and Doug, offering activities, resources and support services. But we can do so much more.

Donate today so that we can better support caregivers like Sandy and fund vital research to eliminate this disease and its impact on Canadians like Doug. Because it’s not just their disease. It’s ours too. #InItforAlz

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At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

It’s common to think that dementia affects only particular demographics—like seniors—but Kathryn Fudurich’s story reminds us of how this disease can have a huge impact on anyone’s life.

When Kathryn was 21 and in her last year of university, her mom, Patricia, was diagnosed with young onset dementia. The signs had been there for a while. Patricia had become anxious about everyday tasks like driving, began buying household items in multiples and struggled professionally. At age 55, she could no longer keep her job or live alone. So Kathryn and other family members stepped in.

Kathryn moved back home after graduation and put her life on hold to be a part of her mother’s care. She felt very much alone in this situation at such a young age, so she reached out to the Alzheimer Society of Toronto. Later she discovered some of her own friends were also going through this experience. What Kathryn really needed was to talk to someone who had been there, who knew what it means to live with an irreversible diagnosis.

Kathryn continues to share the responsibility of care with her dad and siblings. But it doesn’t get easier. Caring for someone with dementia is incredibly time-consuming and emotional, because it’s a “living disease,” not something you just “get over.” Kathryn describes feeling the loss of her mom every day, and struggles with the need to be there—or close by—even eight years later.

Through mutual friends, Kathryn met Carolyn Poirier, whose mother also has Alzheimer’s. She joined Carolyn and her friends in founding Memory Ball as a way of raising funds for people living with dementia. “Stepping out of the caregiving role, even briefly, is really important for caregivers,” says Kathryn.

But what’s even more important? When friends step into your world. If you know someone living with Alzheimer’s disease or dementia, spend an afternoon or evening with them. Bring them a hot meal, and see first-hand what their life is like.

There are so many ways to support families like Kathryn’s, so many ways to get involved with the people in your community affected by this disease. You can also donate to the Alzheimer Society, so that we can continue to offer resources and fund research. Because it’s not just their disease. It’s ours too. #InItforAlz

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À 21 ANS, LA MALADIE D’ALZHEIMER EST LE DERNIER DE VOS SOUCIS, JUSQU’À CE QUE VOTRE MÈRE EN SOIT ATTEINTE

kathryn fudurich
On pense souvent que la maladie d’Alzheimer affecte seulement une certaine tranche de la population, à savoir les personnes âgées. Mais l’histoire de Kathryn Fudurich nous rappelle que cette maladie peut avoir de graves répercussions sur la vie de tous.

À l’âge de 21 ans, alors que Kathryn terminait sa dernière année à l’université, la maladie d’Alzheimer à début précoce a été diagnostiquée à sa mère, Patricia. Certains signes s’étaient déjà manifestés depuis quelque temps. Les tâches de la vie quotidienne, comme la conduite automobile, rendaient Patricia très nerveuse. Elle achetait les mêmes produits ménagers à répétition et éprouvait des difficultés dans sa vie professionnelle. À l’âge de 55 ans, elle n’a plus été en mesure de travailler ou de vivre seule. Kathryn et les autres membres de sa famille sont donc intervenus.

Après avoir obtenu son diplôme, Kathryn est rentrée au bercail et a mis sa vie de côté pour prendre soin de sa mère. Elle se sentait très seule dans cette situation à un si jeune âge, et elle a donc communiqué avec la Société Alzheimer de Toronto. Un peu plus tard, elle a découvert que certaines de ses propres amies vivaient la même situation. Ce dont Kathryn avait vraiment besoin, c’était de parler à quelqu’un qui avait vécu la même expérience et qui savait ce que cela voulait dire de vivre avec une maladie irréversible.

Kathryn continue aujourd’hui de partager la responsabilité des soins de sa mère avec son père et ses frères et sœurs. Mais la situation n’est pas facile. Prendre soin d’une personne atteinte d’une maladie cognitive demande beaucoup de temps et d’énergie psychique parce qu’il s’agit d’une maladie évolutive qu’on ne surmonte pas. Kathryn ressent tous les jours ce sentiment de vide devant la maladie de sa mère et essaie d’être là pour elle à ses côtés, ou le plus près possible, même huit ans plus tard.

Par l’entremise d’amis communs, Kathryn a rencontré Carolyn Poirier, dont la mère est également atteinte de l’Alzheimer. En compagnie de Carolyn et de ses amis, elle a participé à la fondation de « Memory Ball » afin de recueillir des fonds pour les personnes atteintes d’une maladie cognitive. « Le fait de sortir de son rôle d’aidant, même brièvement, est vraiment important », déclare Kathryn.

Mais ce qu’il y a de plus important encore, c’est lorsque des amis vous rendent visite. Si vous connaissez une personne atteinte de la maladie d’Alzheimer ou d’une autre maladie cognitive, allez passer un après-midi ou une soirée avec elle. Apportez-lui un repas chaud, et constatez sur place ce à quoi sa vie ressemble.

Il existe de nombreux moyens de soutenir les familles comme celle de Kathryn, et de prendre une part active à la vie des personnes touchées. Vous pouvez également faire un don à la Société Alzheimer pour lui permettre de continuer à offrir des services de soutien et du financement pour la recherche. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

I have what? Frontotemporal dementia?

I have what? Frontotemporal dementia?

As I drove us to the 9:00 a.m. meeting with Dr. Didyk a geriatrician, many thoughts ran through my head. Here we go, another appointment with another doctor. One more stupid test. I hate when they ask me to write down the clock time because I know what time it is. I’m looking forward to my Timmy’s coffee.

Once Dawn and I arrived at the hospital, we grabbed a coffee and headed off to the waiting room of the gerontology area. I asked myself, “How can I only be 45 years old and be sitting here?”

Within minutes we were led into the examination room and the nurse arrived. Same old, same old. It really bothered me that after years of battling serious depression, memory loss and behavioural changes, no one has provided me with a sound medical diagnosis. That was all about to change.

Nurse Julie began the mini–mental state examination (MMSE). Sure enough, there were the questions about time. I uttered to her that I don’t have a problem with time. We continued on. Finally, the last of 30 questions lay in front of me. My mind was tired and it had become hard to stay focused. I didn’t have the brain power to answer any more questions – we were finished. After asking Dawn and I a few more questions about my health, she disappeared to tally the results.

Soon, the door opened and Nurse Julie appeared with Dr.Didyk. Everyone sat down.
The doctor immediately started to discuss the results of the MMSE. Six months ago, I had taken the same test and scored 24. Today, my score was 18 – an obvious, significant decrease. I’m not sure of all the things she discussed, but I do remember this: “You have Frontotemporal Lobe Dementia or FTD.”

Whoa…. no one has ever used those words before. I knew I was cognitively impaired but what was this FTD thing?

The doctor went on to explain more about FTD including that my amount of education will help. More blurred talk. FTD is a rare form of dementia and is incurable. Dawn and I looked at each other. Could this really be happening? More blurred talk. You will not be able to drive anymore effective immediately.

Whaaaattttt? O.K. This is now serious. More blurred talk.

I stopped hearing the rest of the conversation. The only thing I could hear in my head was, “You can’t drive.” You don’t have a driver’s license!” I started to see red. I flew out of my chair and threw some papers in the garbage. I stormed out of the office trying my best to slam the door shut. I tried a few times.

I continued on to the hospital hall and stopped. I began to pace up and down mumbling to myself. How could this be? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? My head was in a swirl.

I continued to pace. My cell phone rang and it was Dawn asking where I was, if I was o.k. And for me to come back into the room. No! I’m not coming back into the room because I don’t want to hear anymore. I continued to pace.

Eventually, Dawn came out of the examination room and approached me in the hall. We said nothing and I handed my car keys to her. We headed out towards the car. Dawn proceeded to take my usual seat at the wheel and I took her usual seat as a passenger.

FTD had changed our lives forever.

This article was previously posted on the Alzheimer Society of London-Middlesex blog. Read more from Mary Beth.

fdd8c873df2214bMary Beth Wighton

Person living with dementia