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Driving with Dementia

Driving with Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

Driving had always been an important part of my mother’s life. She loved to tell stories about her adventures as a young woman chauffeuring friends from her home in Campbellford to Peterborough, Ontario to watch the Petes play hockey, or taking a carload of women to Buffalo, New York, to shop.

After she was married, my father’s poor eyesight meant that my mother was the main driver in the household and her ability to drive assumed an even greater significance.

My mother was devastated when her doctor notified the Department of Motor Vehicles that she had dementia.  After her driver’s license was suspended, she refused to attend social gatherings and resented that she needed me to take her grocery shopping or to the drugstore.  Ordinary tasks became an ordeal for both of us. She soon became obsessed with the notion that her doctor had acted in bad faith by reporting her illness and she was determined to have her license reinstated.

One day, she told me that she would be able to drive again if she passed a standard road test. I knew that information wasn’t accurate but I agreed to take her to a Driver Licensing office for the test.

When we arrived, I sat at the back of the room and waited while my mother approached the front counter.  A clerk typed information into a computer and then gently shook her head.  She explained that there was a detailed process my mother would have to follow if she wanted to get her driver’s license back.

“But the doctor was just acting out of spite,” my mother protested.

By the next day, my mother was furious with me. According to her, just as the clerk was about to return her driver’s license, I held up a sign declaring that she had dementia. The clerk saw the sign and immediately withdrew the license. I was stunned.

At the time, I didn’t understand that driving a vehicle meant more to my mother than a way to maintain her independence. The ability to drive was an integral part of her identity and losing her license was another way that dementia was affecting the life she had long known.

People with dementia should be allowed to drive for as long as possible but when their ability is impeded and they pose a risk to themselves or others their license must be suspended. Contact your local Alzheimer Society to learn how you can support your loved one through this significant life change and help them stay connected with their community.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Staying Connected and Living With Dementia

Staying Connected and Living With Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.

My mother was embarrassed when she was diagnosed with dementia.  Rather than tell her friends about her illness, she stopped meeting them for lunch or coffee and declined their invitations to concerts and other gatherings. As her disease progressed, she became angry and paranoid. She withdrew from the church group that she had belonged to for over thirty years and refused to attend my son’s hockey games, school concerts and swimming lessons as she had always done.

My friend’s mother, Mrs. McEwan, was also diagnosed with dementia but she wasn’t embarrassed by her diagnosis nor did her symptoms include anger and paranoia. With the help of her friends, Mrs. McEwan continued to attend her book club and ladies auxiliary even when she was no longer able to fully participate in the meetings. She and her husband went to the symphony and the ballet and they joined organized tours to avoid the potential confusion of independent travel.

Over time, her memory gradually declined, until she was dependent on others to help her complete simple tasks. Despite this, she was always cheerful and she accepted her disease and the limitations it imposed with grace.

My mother and Mrs. McEwan had dramatically different experiences when they were living with dementia. Mrs. McEwan’s psychological well-being was fostered by staying connected with her community and participating in activities that she had always enjoyed. She had a positive attitude about her life, despite her limitations.  My mother resented her illness. She cut herself off from her friends and family, and felt isolated, lonely and depressed.

We can all play a role in reducing the stigma of dementia and making the lives of people who have the disease as rich as Mrs. McEwan’s. Educating ourselves about the symptoms and learning how to offer appropriate assistance will help people with dementia feel supported in our communities.  By fostering environments of inclusion in organizations, clubs and faith groups, as well as in common spaces like the library, coffee shop or grocery store, we can create environments that encourage their independence.

Together, we can work to create communities that are dementia-friendly and help everyone who is diagnosed live the quality of life they deserve. To learn more about how you can help contribute to a dementia-friendly community, contact your local Alzheimer Society.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

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.

A Family Affair

A Family Affair

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

When my son, Davis, was young he used to say that he loved Mommy best, Grandma second and Daddy third. My mother returned his feelings tenfold.

Her devotion to him only increased as he grew from an infant to a toddler to a boy. Her house was transformed into Davis’ second home, complete with his own room, toys, books and clothes. She was constantly thinking up new activities for them to enjoy together – a large cardboard box was turned into their clubhouse and the basement rec room became an imaginary hockey rink.

After Davis started school, my mother attended hockey games, music lessons, choir recitals, and even some parent-teacher interviews. No matter how wonderful he was through the rose-coloured glasses of his parents, Davis was even more wonderful through my mother’s ruby-tinted lenses.

When Davis was in Grade 3, my mother forgot to attend Grandparents Day at his school – an event that they had both long anticipated. Davis was heartbroken, but my mother was contrite and he readily forgave her. The incident should have raised a large red flag but I chose to ignore the possibility of a larger issue.

Two years later, my mother was diagnosed with dementia.

As her disease progressed, she refused to come to Davis’ activities. She declined my invitations to visit my son at our house, as well as my offers to bring him to hers. Davis didn’t see my mother for months at a time and he missed her terribly.

“Why are you fighting with Grandma?” he often asked, thinking that their lack of contact might have had something to do with me.

In retrospect, I didn’t properly educate Davis about dementia or its symptoms. I tried to protect him from my mother’s drastic changes in behavior, but in doing so, I didn’t equip him to understand the progression of her disease.

Dementia affects families – not just the person who is diagnosed with the disease.  It is important that children and young adults be informed so they can better understand what is happening to their loved one.  With the help of your local Alzheimer Society you can find the resources you need.

Contact a local Alzheimer Society near you to learn more.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

‘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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It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

David, a kind, quiet and intelligent man, connected to his family, with lots of friends, and very active in his community, started to become withdrawn and apathetic. His wife Wendy knew something wasn’t quite right.

The Hughes sought help early, but much time passed before they found out that David has Lewy body dementia.

Wendy became an advocate for her life partner. David was initially diagnosed with Parkinson’s and Alzheimer’s disease. As she did more research, she wondered about the symptoms. David’s memory loss fluctuated, rather than declined. And what Wendy noticed most was not so much memory loss, but that his personality had changed significantly.

After several years of persistence, David was finally diagnosed with Lewy body dementia.

Their story is a reminder that getting a diagnosis can be a long and uncertain process. Know the symptoms of dementia. Get help as soon as possible. And play an active role in seeking out the best health care options for you and your family.

David’s new status came as somewhat of a relief for the couple and Wendy continues to learn as much as she can about Lewy body. Now they have access to the right treatments and support, and she and David can get on with their lives.

“You can’t do this on your own, and I’ve realized it’s perfectly okay to ask for help,” says Wendy. She has reached out to her local Alzheimer Society (Hamilton Halton) and made a point to seek out new friends. Socializing gives her a much-needed break and allows her to better care for David.

Each year 25,000 Canadians are diagnosed with dementia. Wendy believes everyone needs to learn more about Alzheimer’s and other dementias-“awareness can only lead to better understanding and acceptance of this disease.”

This January, you too can make a difference. It’s not just their disease. It’s ours too. #InItForAlz

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Il NE S’AGIT PAS TOUJOURS DE L’ALZHEIMER : L’HISTOIRE D’UN COUPLE EN QUÊTE DU « BON » DIAGNOSTIC

Wendy & David Hughes
David est un homme sympathique, calme et intelligent. Il a toujours été attaché à sa famille et fidèle à ses amis. Lui qui était si actif socialement, il a commencé à devenir renfermé et apathique. Sa femme, Wendy, a su que quelque chose n’allait pas.

Les Hughes ont rapidement été cherchés de l’aide, mais beaucoup de temps s’est écoulé avant de découvrir que David était atteint de la maladie à corps de Lewy.

Wendy a pris fait et cause pour son compagnon de vie. David a tout d’abord reçu un diagnostic de Parkinson et de maladie d’Alzheimer. Au fil de ses recherches, Wendy a commencé à douter. La mémoire de David subissait des fluctuations plutôt qu’un déclin. Mais, par-dessus tout, ce n’était pas tant sa mémoire qui était en cause, mais sa personnalité qui avait énormément changé.

Après plusieurs années d’attente, la maladie à corps de Lewy a finalement été diagnostiquée à David.

Leur histoire nous rappelle que le diagnostic est parfois établi à la suite d’un processus long et incertain. Informez-vous sur les symptômes des maladies cognitives. Obtenez de l’aide aussitôt que possible. Et jouez un rôle actif dans la recherche des meilleures options de soins de santé pour vous et votre famille.

Le couple a accueilli avec un certain soulagement le nouveau statut de David. Pour sa part, Wendy continue de se renseigner le plus possible sur la maladie à corps de Lewy. Ils ont maintenant accès à des traitements adéquats et à du soutien, et ils peuvent poursuivre leur vie.

« Vous ne pouvez pas tout faire par vous-même et j’ai réalisé qu’il est parfaitement acceptable de demander de l’aide », déclare Wendy. Elle a communiqué avec sa Société Alzheimer locale (Hamilton Halton) et s’est promis de se faire de nouveaux amis. Le fait de socialiser lui donne le répit dont elle a tant besoin et lui permet de mieux prendre soin de David.

Chaque année 25 000 Canadiens reçoivent un diagnostic de maladie cognitive. Wendy croit que tout le monde devrait s’informer sur la maladie d’Alzheimer et les maladies apparentées. « Être bien renseigné nous aide à mieux comprendre et à accepter ces maladies. »

En janvier, vous pouvez vous aussi apporter votre contribution. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

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’ll Love You Forever

I’ll Love You Forever

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

I was pregnant when I first read I’ll Love You Forever, Robert Munsch’s book about the unconditional love between a mother and her son. I didn’t yet appreciate the bond I would have with my own child but the story brought me to tears as I thought about my relationship with my mother.  I vowed that I would always care for her just as she had cared for me.

I couldn’t have imagined what would happen twelve years later.

Shortly after she was diagnosed with dementia, my mother’s driver’s license was suspended. As she waited for me to review the Notice from the Department of Motor Vehicles, she sat on the couch in her living room, her arms wrapped tightly around her body.

“It’s just not right,” she sobbed.  “I didn’t do anything wrong.”

When I was young, I frequently woke in the middle of the night and imagined that a burglar had broken into the house and was creeping towards my bedroom.  I would call my mother and she would comfort me until I fell back asleep.

I wished that I could chase away her sorrow as easily as she had chased away my fears.

As my mother’s disease progressed, caring for her became a challenge. I was terribly hurt when she said that she wanted nothing more to do with me and I resented that she interpreted everything I did as acts of malicious intent. Sometimes, I was relieved when she wouldn’t let me into her house and I didn’t have to confront her. I constantly worried that I was breaking the vow I had made so many years before.

Enough time has passed that I now know I did the best I could in those difficult circumstances. I also know that the bond I had with my mother was strong, and that despite how our relationship changed, our love for each other never wavered.

I still think of my mother whenever I read I’ll Love You Forever. 

“For as long as I’m living, my Mommy she’ll be.”

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.