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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.

Their memories fade, but love remains

Their memories fade, but love remains

Donate today to help find a cure.

When the doctor first told my Mom, “You have Alzheimer’s disease,” I was numb. There I was, only 30 years old, with a newborn son and a mother whose memory was starting to fade.  I tried to Google as much as I could about the disease, but panic came the second I saw the words: There is no cure.

As hard as this is to talk about, I agreed to share my story with you because I want to see a world without Alzheimer’s disease and other dementias.

Caron & Marlene

Please make a donation today. Your holiday gift to Alzheimer Society of Ontario will help fund life-saving research focused on prevention, better treatments and, ultimately, a cure. Your contribution will also help women and men across the province that face this devastating disease by providing support programs and services.

This time of year is especially hard. I have such fond memories of our family’s special Christmas traditions but that has all changed since Alzheimer’s took hold of Mom 15 years ago.

My Mom is now in the late stages of the disease. She has forgotten how to walk and is confined to a wheelchair. She can’t remember how to chew so even eating is difficult.

Alzheimer’s disease impacts so many people. And chances are you or someone you know will be affected.

I hope you will join me in donating now to help bring hope and improve the lives of people like my mother.

Thank you,

Caron Leid
Caregiver to my mom, Marlene, since 2000

What I learned caring for Grandma

What I learned caring for Grandma

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 (rmackellar@alzheimeront.org).

Andrea Shanmugarajah

Volunteer blogger