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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

Canada to become 30th country with national dementia strategy

Canada to become 30th country with national dementia strategy

The Alzheimer Society of Canada celebrates the passage of Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias. Canada will now become the latest country to develop a national dementia strategy to address the overwhelming scale, impact and cost of dementia.

“For the more than half a million Canadians living with dementia and their families, this is an important milestone,” says Pauline Tardif, CEO of the Alzheimer Society of Canada. “A national strategy enables a coordinated approach to tackling dementia in Canada that will impact the lives of those affected in tangible ways.”

Bill C-233’s co-sponsors, the Honourable Rob Nicholson, MP Niagara Falls, and Rob Oliphant, MP Don Valley West, are to be commended for their leadership and support, as is the Standing Senate Committee on Social Affairs, Science, and Technology. They have been dedicated champions of the Bill on behalf of Canadians living with dementia, their families, and caregivers.

The Alzheimer Society has long called for a national dementia strategy to enhance research efforts and ensure access to quality care and support so that Canadians with dementia can have the best quality of life. Now that Canada has committed to such a strategy, work begins on implementation.

The Society and its federation partners look forward to continuing to work collaboratively with government, stakeholders and, above all, people living with dementia, to create and implement Canada’s first national dementia strategy.

To learn more, visit www.alzheimer.ca/advocacy.


LE CANADA VA DEVENIR LE TRENTIÈME PAYS DOTÉ D’UNE STRATÉGIE NATIONALE SUR LES MALADIES COGNITIVES

Parliament of Canada

La Société Alzheimer du Canada salue l’adoption du Projet de loi C-233, la Loi concernant une stratégie nationale sur la maladie d’Alzheimer et d’autres démences. Le Canada va maintenant devenir le dernier pays à mettre sur pied une stratégie nationale sur les maladies cognitives pour répondre à l’ampleur, l’impact et au coût de ces maladies.

« Pour les plus de cinq cent mille Canadiens atteints de la maladie d’Alzheimer ou d’une maladie apparentée et leurs familles, il s’agit là d’un jalon important, a déclaré Pauline Tardif, chef de la direction de la Société Alzheimer du Canada. Une stratégie nationale nous permet d’avoir une approche coordonnée pour aborder les maladies cognitives au Canada, ce qui aura des impacts concrets sur la vie des personnes touchées. »

Il convient de féliciter les co-parrains du Projet de loi C-233, l’honorable Rob Nicholson, député de Niagara Falls, et Rob Oliphant, député de Don Valley West, pour leur leadership et leur soutien, tout comme les membres du Comité sénatorial permanent des affaires sociales, des sciences et de la technologie. Ils ont été des champions dévoués au projet de loi au nom des Canadiens touchés par la maladie, des familles et des aidants.

La Société Alzheimer réclame depuis longtemps une stratégie nationale sur les maladies cognitives afin de renforcer les efforts de recherche et assurer l’accès à des aides et des soins de qualité pour que les Canadiens touchés par la maladie puissent jouir d’une qualité de vie optimale. Maintenant que le Canada s’est engagé dans la voie d’une telle stratégie, le travail commence pour la mettre en place.

La Société et les partenaires de la Fédération se réjouissent à l’idée de continuer à collaborer avec le gouvernement, les intervenants, et, par-dessus tout, les personnes touchées par la maladie d’Alzheimer et les maladies apparentées afin de mettre au point et d’instaurer la première stratégie nationale qui y est consacrée au Canada.

Pour en apprendre davantage, rendez-vous à www.alzheimer.ca/defensedesinterets.

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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What will your legacy be?

What will your legacy be?

Death is a fact of life. Because the transition from life to death is an unknown, humans are full of fear. And fear drives us to avoidance. Even though there has been increasing media attention to end-of-life issues recently, we seem to live in a death-phobic, death-avoidance culture. While our television, movie and video game screens are often filled with images of violent death. And news reports remind us every day of various threats to life.

Can we shift our perceptions to think about our Legacy instead of our deaths? May is Leave a Legacy month in Canada.

May is national LEAVE A LEGACY™ month across Canada. LEAVE A LEGACY™ is a national public awareness program designed to encourage Canadians to leave a gift, primarily through their Will, to a charity of their choice and to raise awareness of the importance of including a charitable gift in the estate-planning process.

The main goal of estate planning is usually to have the greatest amount of one’s estate pass to the owner’s intended beneficiaries. This includes paying the least amount of taxes. A legacy gift can benefit your favourite charity while significantly helping your family save taxes.

We are living in a time when an unprecedented amount of wealth is being transferred from one generation to the next. According to the Canadian Association of Gift Planners, in the next two decades 3.5 million Canadians are expected to die, leaving an estimated $1.5 trillion to their families and community.

Recent data on estate planning

A recent Scotiabank study found that half (50 per cent) of Canadians have a Will and just over half of Canadians (54 per cent) said they have spoken to their family about their intentions for their Will. The study also found that only one third (33 per cent) of Canadians have a Power of Attorney for property, while 59 per cent do not have one and 8 per cent say they don’t know what it is.

The disturbing part is that 50 per cent of Canadians currently don’t have a Will. According to the LEAVE A LEGACY™ program, if this trend continues, about two million Canadians over the next two decade will end life without a Will to protect their assets and their families. Without a Will, people lose the ability to control distribution of their estate to their chosen beneficiaries!

A common myth is people think you have to be wealthy to make a legacy gift—this is simply not true. Anyone can arrange to leave a charitable gift from their estate, regardless of its size.

People give for many different reasons; to ensure their memory lives on, to ensure that their favorite charity is able to continue its important work, to minimize the tax liability that comes with the transfer of one’s estate to surviving family members.

You have the ability to help the lives of people with dementia and create a lasting legacy. Gifts left to the Alzheimer Society of Ontario gives us the security of future funds. This May, get into action, do your Will, leave a legacy and create a brighter future for communities across Canada. We are here to help, request our free Super Hero Estate Planner and Guide. Not all Super Heroes wear capes. At the Alzheimer Society our Super Heroes leave a gift in their Wills to fight our #1 foe – dementia. Take a stand. Get the job done. Protect and help others and gain peace of mind. To learn more, and to request a free estate planner and guide, go to alzsuperhero.ca

 

Written by:

Colleen Bradley Chief Development Officer, Planned Giving Alzheimer Society of Ontario
Colleen Bradley
Chief Development Officer, Planned Giving Alzheimer Society of Ontario

 

Is it time to move to long-term care?

Is it time to move to long-term care?

You survived the holidays and you’re now getting back into your regular routine. For many people, the holidays are a time to get together with friends and relatives that you haven’t seen in a while. As joyful as these gatherings can be, they can also bring new worries. You may have noticed that your father seems more forgetful.  Perhaps your aunt’s dementia seems to be getting worse.  Or, a dear friend may have seemed frailer than you remembered.

We try to care for relatives and friends in our own homes for as long as possible.  But when a person has dementia, this can be especially challenging. Even families who are well resourced and living close to each other often struggle to support someone who needs a lot of care at home until the end of life.

As difficult as it is, moving to a long-term care home is more the norm than the exception for families of someone with dementia. Research shows that 57% of seniors living in a residential care home have Alzheimer’s disease and/or another form of dementia. And, 70% of people with dementia will eventually die in a nursing home.

At the Alzheimer Society, people who have dementia often tell us they worry about someday moving into long-term care.  Their families tell us that it can be the hardest decision they’ll ever make:  “How will I know it is time?” “What about the promises we made to care for each other until the end?”  “How do I choose a home?” “How much will it cost?” “Will my partner get the care she needs?”

That’s why the Alzheimer Society has created a new series of checklists to help families know what to ask and look for when choosing a long-term care home, and how to adjust to the transition. These come in four easy-to-use brochures with lots of practical tips:

  • Considering the move to a long-term care home
  • Preparing for a move
  • Handling moving day, and
  • Adjusting after a move

You can download these free resources in English at www.alzheimer.ca/longtermcare and in French at www.alzheimer.ca/soinsdelongueduree from the Alzheimer Society of Canada’s website.

You can also get printed copies from your local Alzheimer Society. To find the Alzheimer Society closest to you, please visit: www.alzheimer.ca/en/provincial-office-directory or call toll free: 1-800-616-8816.

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

Marilyn Lemay loved the outdoors and would spend every waking moment there. Inherently creative, she crafted, embroidered, quilted and painted everything in sight. If you stand still for more than a moment, her 17-year-old granddaughter Deborah jokes, Marilyn just might paint you.

Some of that changed eight years ago, when Marilyn was diagnosed with Alzheimer’s disease. Deborah’s grandfather Ron moved from their beloved Elliot Lake home to be closer to Deborah’s mother and family. Managing Marilyn’s care himself wasn’t an option. He knew he would need to rely on a close family network.

Marilyn Lemay
Marilyn and Ron Lemay

Deborah loves being closer to her grandmother. She still goes to her with questions about nature and for advice about life. While Marilyn’s memory isn’t what it used to be, she still has a wealth of knowledge to share. And the two of them have joined an inter-generational choir started by the Alzheimer Society London and Middlesex.

“About 15 to 20 high school students get together with seniors living with Alzheimer’s disease and we sing old, war-time songs,” says Deborah. Marilyn loves this choir. It reminds her of her childhood when her mother and aunts would sing and dance in her home.

Deborah loves hanging out with her grandmother, whether they’re walking, having tea parties, or watching episodes of I Love Lucy. There’s so much hope, wisdom, and joy in her grandmother, and Deborah wishes more young people could see that. The chance to connect across generations, to learn from each other and spend valuable time together, is really important.

When Deborah describes her grandparents, her voice lights up: her grandfather is still so in love with her grandmother, even though they met at 13 (63 years ago!). Ron takes Marilyn out on dates, will dance with her whenever music comes on, and the two of them tease each other still. Marilyn is still Marilyn, in other words, and she still lives with deep joy.

Family support systems are an integral part of living with Alzheimer’s and other dementias. And those systems themselves need support with resources, groups, and hope for a cure. Please donate to the Alzheimer Society, so that families like Deborah’s have more time to walk, and sing and laugh. Because it’s not just their disease. It’s ours too. #InItforAlz

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NOUS AVONS TELLEMENT DE CHOSES À APPRENDRE DE NOS GRANDS-PARENTS : PERSPECTIVE D’UNE ADO SUR L’ALZHEIMER

deborah-dravis
Marilyn Lemay adorait la vie en plein air et passait le plus clair de son temps à l’extérieur. D’une nature créative, elle faisait de l’artisanat, de la broderie, des courtepointes et peignait tout ce qu’elle voyait. Si vous restiez juste un moment sans bouger, elle vous prenait comme modèle pour peindre, raconte en riant sa petite-fille Deborah, 17 ans.

Il y a huit ans, la maladie d’Alzheimer a été diagnostiquée à Marilyn et les choses ont changé. Les grands-parents de Deborah ont quitté leur domicile du lac Elliot, qu’ils aimaient tant, pour être plus près de la mère de Deborah et de la famille. Le grand-père ne pouvait prendre soin de Marylin par lui-même et il savait qu’il pouvait compter sur le réseau tissé serré de ses proches.

Deborah adore être à proximité de sa grand-mère. Elle lui pose plein de questions sur la nature et lui demande des conseils de vie. Même si la mémoire de Marilyn n’est plus ce qu’elle était, elle possède toujours de précieuses connaissances à transmettre. Deborah et sa grand-mère font maintenant partie d’une chorale intergénérationnelle mise sur pied par la Société Alzheimer de London et Middlesex.

« Environ 15 à 20 élèves du secondaire se réunissent avec les personnes âgées atteintes de la maladie d’Alzheimer et nous chantons de vieilles chansons du temps de la guerre », poursuit Deborah. Marilyn adore faire partie de ce chœur. Cela lui rappelle son enfance lorsque sa mère et ses tantes chantaient et dansaient à la maison.

Deborah aime beaucoup passer du temps avec sa grand-mère, que ce soit pour faire une promenade, prendre le thé ou regarder des épisodes de « I Love Lucy ». Sa grand-mère est tellement pleine d’espoir, de sagesse et de joie, et Deborah souhaiterait que plus de jeunes puissent profiter de son expérience de vie. La possibilité d’établir des liens entre les générations, d’apprendre les uns des autres et de passer de précieux moments ensemble est vraiment importante.

Lorsque Deborah décrit ses grands-parents, sa voix s’illumine : son grand-père est toujours amoureux de sa grand-mère, même s’ils se sont rencontrés à l’âge de 13 ans (il y a 63 ans de cela!). Il invite Marilyn à sortir, danse avec elle au son de la musique, et les deux adorent toujours se taquiner. En d’autres mots, Marilyn est toujours Marilyn, et elle continue de vivre le cœur rempli de joie.

Le réseau de soutien familial fait partie intégrante de la vie avec la maladie d’Alzheimer ou avec une autre maladie cognitive. Mais il faut appuyer ce réseau avec des ressources, des groupes d’entraide et l’espoir de guérison. Pour aider les familles comme celle de Deborah à disposer de plus de temps pour faire des promenades, chanter et rire, nous vous invitons à faire un don à la Société Alzheimer. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

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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‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

When you’ve seen the effects of dementia before, noticing even minor changes in your cognitive abilities can be alarming. Both Yvon and Susanne lost their mothers to Alzheimer’s, so they’re no strangers to the disease.

When Susanne began to show small signs of forgetfulness a few months ago, they immediately went to their doctor. After a series of tests, Susanne was diagnosed with Mild Cognitive Impairment (MCI), which can be—although not always—a precursor to dementia. Susanne was given appropriate medication and is showing signs of improvement. MCI is “just barely on the scale” of neurological impairment, but because of their shared family histories of Alzheimer’s, the couple is not taking any chances.

Yvon has made changes in his life now that he’s supporting a partner with MCI. He’s learning different ways of saying and doing things, taking on new tasks, and researching as much as he can about cognitive impairments and dementias. He’s reading about the importance of nutrition, exercise and mental activities. He’s also grateful for the support of friends and neighbours.

And MCI is not their only health concern. Susanne also lives with lupus and Yvon has diabetes and glaucoma in his right eye. To help manage these multiple health concerns, Yvon and Susanne are looking for new supported living arrangements to relieve some of the stress of handling everything on their own.

They’re hopeful. Being proactive about the disease gives Yvon a sense of clarity and calmness. He encourages Susanne in the kinds of activities that keep her engaged and active – doing household finances and crosswords, knitting and reading. They’re learning everything they can about the disease and have joined a support group, one of many programs available at the Alzheimer Society of Cornwall.

“The more education people have, the better prepared they can be about what’s ahead,” says Yvon. That’s why supporting the Alzheimer Society’s work in raising awareness and funding research is so critical for couples like Yvon and Susanne. Making a donation helps. Because it’s not just their disease. It’s ours too. #InItforAlz

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« On ne peut pas se sauver de la réalité » : Un couple fait face à la possibilité de se voir confronter à la maladie d’Alzheimer

Yvon and Susanne Brazeau

Même des changements mineurs dans nos capacités cognitives peuvent nous inquiéter quand on connaît les conséquences de la maladie d’Alzheimer. Cette maladie a emporté la mère de Suzanne et celle d’Yvon. Tous deux savent très bien de quoi il en retourne.

Il y a quelques mois, Suzanne a commencé à montrer des signes de perte de mémoire. Tout de suite, elle a consulté son médecin. Après une série de tests, un diagnostic de déficit cognitif léger lui a été confirmé. Même si cela n’est pas toujours le cas, ce diagnostic pourrait être un signe avant-coureur de maladie cognitive. Suzanne prend les médicaments recommandés pas son médecin et montre maintenant des signes d’amélioration. Le déficit cognitif léger est un trouble neurologique mineur, mais, en raison de ses antécédents familiaux, Suzanne ne veut courir aucun risque.

Yvon a modifié un peu son style de vie depuis qu’il prête assistance à sa conjointe. Il apprend de nouvelles façons de dire et de faire les choses, prend en charge de nouvelles tâches, et s’informe du mieux qu’il le peut sur les questions entourant les déficiences et maladies cognitives. Ses lectures lui ont fait prendre conscience de l’importance de la nutrition, de l’exercice et des activités mentales. Ses amis et ses voisins le soutiennent et il en est très reconnaissant.

Mais ce n’est pas tout. Suzanne est également atteinte du lupus et Yvon a le diabète, en plus d’un glaucome à l’œil droit. Pour ne plus être livrés à eux-mêmes dans leur combat contre la maladie et pour évacuer un peu de stress, Yvon et Suzanne tentent actuellement de trouver des services d’aide à la vie autonome.

Par-dessus tout, ils gardent l’espoir. Grâce à son attitude proactive face à la maladie, Yvon éprouve un sentiment de clarté et de calme. Il encourage Suzanne à rester active en participant aux finances du ménage et en faisant des mots croisés, du tricot et de la lecture. Ils apprennent tout ce qu’ils peuvent sur la maladie et font maintenant partie d’un groupe de soutien, qui est l’un des nombreux services offerts par la Société Alzheimer de Cornwall.

« Plus on s’informe, mieux on se prépare pour l’avenir », déclare Yvon. C’est pourquoi il est si important de soutenir les initiatives de sensibilisation du public et de financement de la recherche de la Société Alzheimer. Votre contribution est importante parce que les maladies cognitives ne concernent pas seulement les personnes atteintes. Elles nous concernent tous. #TousContreAlzheimer.

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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.