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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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‘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.

Make your Holidays stress-free!

Make your Holidays stress-free!

The Holidays are the perfect time of year to bring friends and family together to connect, catch up, and celebrate the coming New Year! For those with dementia it is just as important to be able to spend time with their loved ones.

But managing the extra stimulation a gathering can bring and making sure they enjoy themselves can sometimes be difficult. Family and friends may also be uncertain about how to act and what to say.

To help with these difficult situations and to make your Holidays stress-free the Alzheimer Society of Ontario has created 10 Holiday tips:

  1. Ask for their help with simple but important tasks like helping prep the meal, decorating the room, or cleaning up together
  2. Keeping rooms well lit can help with reduced vision and sun downing
  3. Have a quiet space available for the person with dementia if the gather becomes over stimulating
  4. Remove major distractions such as loud music or televisions.
  5. Keep the number of guests to a moderate size to make sure the gathering isn’t overwhelming
  6. A nap can help one feel more rested for the evening’s entertainment
  7. Having everyone sit and eat together will help make sure everyone is included in the festivities
  8. Serve your meal at your usual time to make sure not to upset their normal routine
  9. Share tips with family and friends to create better communication and minimize any concerns they have
  10. Have activities ready that are suited for someone with dementia, such as revisiting old family photos or telling stories

You can find more tips and gift ideas for the Holidays at the Alzheimer Society of Ontario Website.

Holiday Reflections – Guarding Memories

Holiday Reflections – Guarding Memories

As a child, I recall the holidays were about family traditions; the plump orange and the red delicious apple in the Christmas stocking, and if luck would have it a chocolate treat. This delicacy was sparingly consumed, to preserve the experience for as long as possible. There was always a small toy to open, and something wearable, and practical.

I recall spending hours, staring at the tree with the tangled jumble of coloured lights, and painted bulbs decorated with idyllic holiday scenes. Mom always cooked the perfect turkey with all the trimmings, and lovingly baked a fruitcake with pudding, as that was a British tradition.

At the age of fourteen, my father passed, and this recreated our holiday experience. On the first year, we attended the home of extended family members, and were embraced with attentiveness and love. Mom was a guest, and her apron for the first time, was neatly tucked in the broom closet. That year, there was no homemade cake loaded with candied fruit in the pantry.

The years progressed, and eventually I became the hostess and purveyor of the feast, although admittedly, I lacked my mother’s finesse for making it all look so easy. Slowly a new pathway was woven, and my childhood experiences were changing, as well as my responsibilities.

When mom began to exhibit signs of dementia, we realized traditions would not leave us, but rather they would need to evolve with her. As a family we would have to find a common ground, and learn to embrace the “new normal.”

As her disease progressed mom struggled with Christmas shopping, and was soon content to place the conquest for a perfect gift behind her. The last present she purchased for me was a pair of pink pajamas. I recall quite vividly how proud she was that “the prize” was so embraced. I do believe at times we forget that validation of one’s efforts is even greater than the gift itself. I recall keeping those pajamas for years; long after mom passed, as they were an amazing key to a wonderful moment in time. The fact they were tattered and faded did not diminish their value to me, and I must confess I anguished when it was time to let them go.

When mom required more care than we could manage, she entered a LTC home. Just before Christmas we would celebrate as a family, and bring her to the nearest sibling’s residence. It was there she watched with wonder, the ruckus of her children, grandchildren, and great grandchildren. Less verbal now, and sleepy at times, she observed with a twitch of amusement, before sleep would win and capture her attentiveness.

Eventually, as mobility became more difficult, our gatherings moved to the LTC home, because we relied more heavily on the professional care team to insure mom’s physical needs were met.

There were times, I mourned for the return of innocence, the tall fresh tree (most often tilting to one side), the vision of mom in her apron, stuffing a fat turkey with bread, celery, and spices, and the wonderment of believing in a saintly sprite with rosy cheeks.

It then occurred to me, that although my traditions were changing to accommodate various factors beyond my control, I was not losing my past, but rather creating my future. In spite of mom’s memory changes, her family remained the gatekeeper of her life’s stories. These tales were nurtured and shared with our loved ones, and through story telling, the next generation was being primed to take possession of this legacy.

As this holiday season approaches, may we be reminded to embrace the moments, rethink traditions, and go with the flow. As care advocates, we are more adaptable than our loved ones living with dementia.

Here are some tips to alleviate holiday stressors:

Balance Rest and Activity: The stimulation of noise, a potentially new environment, and the change in routine may contribute to added stress for a loved one with dementia.

Think about Meaningful Activities: Is there a familiar task that could be delegated to a loved one so as to promote inclusion in activities? Mom was always the queen of potato peeling, and felt her contribution in the kitchen was important and valued.

Remember physical needs: In a different environment, gentle cueing to the bathroom location may be needed.

Be flexible: Would a luncheon be less tiring than a sit down supper? Is the option of potluck available?

Embrace what is: I think one of the most important lessons I have learned through this journey is that mom’s capabilities changed as dementia progressed, but she was still mom. Dementia could not take that away. Our story is never truly lost. It is like an inspiring novel, filled with adventures, laughter, sorrow, pain, and at times embellishments, depending on the weaver of the tale.

And so, in tribute to those who love someone living with dementia, I honour you as the gatekeeper of their memories. This poem is for you…

Guardian of Memories

I am the guardian of memories.

Lovingly the precious keys are fortified,

And I will carefully secure their rightful destiny.

Erosion, cast not shadows on my doorstep.

 

I am the guardian of stories.

Those vivid tales of rich adventures past,

Golden threads and woven reminiscence,

Valued above all monetary reckoning.

 

I am the guardian of heritage.

Traditions honoured, past and present merging,

Successors nurtured, ever-watchful vigilance,

We will find our rightful place in history.

 

I am the guardian of the future.

And in years to come when I am softly beckoned,

To find my rightful place beyond the stars,

My essence lives and legacy continues.

 

For we will not relinquish all our memories,

Circumstance or chance will not prevail.

A disease will hold no credence here, no merit,

Our stories will continue on their journey.

 

Seasons Greetings…

 

Ann-ChartierAnn Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.

Ann was a Family Support Counselor and Education Lead/Writer with the Alzheimer Society Niagara Region. (2012-2015) She continues to be a guest speaker, Alzheimer Society Volunteer and shares her stories from the eyes of a care advocate for her mom.

 

Finding Your Way through the winter season: tips for staying safe with dementia

Finding Your Way through the winter season: tips for staying safe with dementia

Stay safe this winter with these helpful tips!

Winter is on its way, bringing with it snow, sleigh bells, and a renewed importance around being safe in our homes and communities. To prepare, we’re putting snow tires on our cars, pulling winter boots out of storage, and stocking up on salt for our sidewalks and driveways – but for people with dementia, those safety steps go a bit further.

If you’re living with dementia or helping to care for someone with dementia, here are some important factors to maintain safety in your community through the winter.

 

Clothing

Proper clothing is one of our first levels of protection in inclement weather – so be sure to pull the sweaters, winter coats, boots, hats, scarves, and mitts out of storage so that season-appropriate clothing is close at hand. Footwear considerations are extremely important – find boots with good grip, that are well-insulated, and with velcro instead of laces for ease. For those items like hats and mitts that seem to disappear, purchase a few extras so that you’re never without. It’s a good idea to buy clothing items that are brightly coloured or distinctive in some way – if someone with dementia gets lost, it will help as an identifying marker.

If you see someone in the community this winter who isn’t dressed properly for the weather, they may need assistance. Visit our Finding Your WayⓇ website to learn how to help someone with dementia who may be lost.

 

Sundowning

Sundowning refers to the time period – usually later in the day – when confusion and agitation increase for people with dementia. With less sunlight and shorter days during the winter months, sundowning can be exacerbated, but there are ways to help ward it off.

Keep curtains open as much as possible during the day to let in sunlight. Turn lights on in the home earlier in the evening, and consider purchasing a special light box to provide specialized light therapy. If applicable, ensure that outdoor walkways around the home are well-lit, and consider adding motion-detected lights outside. Remember that people with dementia often have issues with visual perception, so helping to keep homes well-lit indoors and out is extremely important.

 

When Outside

  • Dress appropriately for the weather
  • Use handrails to walk up and down steps, when available
  • Step carefully into snow – snow drifts can hide uneven surfaces
  • Avoid or walk carefully on unsalted areas – shadowed areas can still be icy even if temperatures are above 0 degrees
  • Consider purchasing a walking aid to help with balance while walking during the winter

 

Inside The Home

  • Keep heat at a comfortable level
  • Be sure that space/electric heaters are checked regularly, and do not place them in areas where someone can trip over them
  • Make sure the phones are connected properly and cell phones are charged well to maintain communication
  • Keep wet boots on heavy duty mats to avoid slipping in puddles – but make sure all mats lay flat to avoid tripping hazards
  • Don’t spend too much time indoors – when it’s safe, take some time to get some fresh air and a change of scenery

 

These tips are just some of the ways that people with dementia can remain safe and active during the winter months. Don’t forget to consider the use of locating technologies – a cell phone, door sensor, or GPS tracker may be helpful to avoid a wandering incident or to help find someone who has gone missing. Want to learn more? Visit the updated Finding Your WayⓇ technology page!

Winter is a beautiful season, and meant to be enjoyed – so be safe, and have fun!

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

Mirror Images and Memory Loss

Mirror Images and Memory Loss

Reflecting on Communication Tips and Medical Appointments

I was raised to be a people pleaser, and I am unapologetic about it, unless I offended you by writing this, to which I would say, “I’m sorry”…

And so begins my early saga of treading lightly, and being careful to find ways to keep the peace, by

pre empting and reducing opportunities for conflict.  Little did I know this skill set would serve me well, as a daughter to a mom living with dementia.

I think my attentiveness to body language became heightened as a result of these characteristics, and I found myself acutely aware of the nuances of changing posture.  I could readily detect annoyance, generally before it evolved into frustration and anger.  In doing so, I learned ways to diffuse situations that may have had the potential for escalation.  In most cases, my approach was to solve the problem, undertake or assist with the task, offer a path of lesser resistance, or redirect, refocus, and lastly, if all else failed, introduce humour where acceptable.  It is interesting how we can contribute directly or indirectly to a situation, through action or inaction.

I also learned to train my ear to the changing tone of voice and pitch, noticing small inflections that indicated there was conflict on the horizon.  The eyes, it is said, are windows to the soul, and facial expressions speak loudly, more often than words.

I believe having lost my father at a young age, contributed to this heightened perception.  My mother was bewildered after dad’s death for some time, and needed to rebuild a life outside of caring for her family.  Dad was always the comedic relief, the gregarious one; while mom was less inclined to be the social butterfly.   In our tiny home circle, my brother was living with mental illness and was subject to fleeting bouts of anger and remorse.  My older sisters were married, so the three of us attempted to reconstruct our lives, and restructure the balance of power, as best we could.

I quickly discovered it was easier to navigate around small incidences at home, than to deal with larger ones.  Hence reading emotions and moods became as much as a survival technique, as it was second nature.

With time I married, and had a family of my own.  This caused another transition, leaving my mother and brother behind to reconfigure new ways to balance the loss of another member in our small coalition.  Eventually, mom showed evidence of memory loss and was later diagnosed with dementia.  With time, evidence emerged that her home situation was crumbling. She and my brother had become the unfortunate victims of fraud, in one of many ongoing misadventures.

In order to help resolve some of the issues at hand, mom was taken for further medical consultation and potential treatment.  I remember a stressful episode, attempting to explain risk management concerns about her personal well being, to a health care professional.  With mom beside me, I was intent on providing the information at the appointment.  Unfortunately, I left my intuitive tuning fork by the wayside, and spoke as if mom was invisible, not once deferring to her, or establishing eye contact.

I wonder how her body language changed as she listened to me prattle on.  A clearing of her throat broke the silence, as she interjected into the conversation.  She called me a liar, prefaced by my maiden name.  That was so unlike her, the tone, and indignation! In her eyes I was an errant child who had spoken out of turn, and I was too emotional to have realized my insensitivity.

Mom was struggling with language, and was reading between the lines to understand the situation.  Instinctively and intuitively she became angry, because she perceived a threat to her autonomy.  Her response was a mirror to the situation, and really, who could blame her?

My poetic reflection speaks to that day…

 

Mirror Images: Unspoken Language

 

The words were jumbled more or less,

Context, though, was accented

Like errant tapping of hail on a tin roof.

No good is to become of this.

 

But the eyes spoke clearly, words aside,

Brows lowered with indignation,

Narrowed, emphatic, sharp, unyielding,

Displeasure has befallen us.

 

The lips were absent of the curve,

Watchful, hoping, a smile emergent,

Would rescue us from unknown foes.

React, and ready my defenses.

 

The body stiff, arms woven tight,

Threaded across a posture poised.

A skilled combatant drawing closer,

Imminent danger floods my thinking.

 

The approach is quick, direct, in view,

Feet echoing thunderous, drawing nearer.

Escape eludes me, exits vanish,

Self-protection, counter quickly.

 

Moments collide, and senses falter.

The situation clearly demanded,

Primal response, and quick reaction,

Mine alone to safely render.

 

When I forget, I conceptualize,

Tone, and posture, shape and form.

My point of reference, clear to me,

A mirrored response to your reflection.

In retrospect, I should have attempted to make an appointment without mom to discuss my concerns.  I was the Power of Attorney (health) and my worries would have been voiced more constructively, in a different environment.  Her perception of the situation caused a catastrophic reaction; that could have been avoided.

Here are some Care Partner tips that may improve communication when seeking medical care:

  • Does your medical office have a nurse practitioner or office nurse that can act as a liaison to further communicate concerns to a physician?
  • Is it possible to book a medical appointment just prior to the one scheduled for the individual living with dementia, to allow for a private, confidential discussion, if needed?
  • Some communities have outreach teams that conduct home visit assessments. These appointments can be less stressful, and may offer insight into the impact of environment, on an individual’s behaviour.  Ask your family doctor if this is
  • During stressful times, organizing important points in writing allows for a better medical appointment. Prepare your thoughts in advance of the visit
  • When language and communication are impacted, never lose sight that your loved one living with dementia is watching your behaviour, listening to your tone, and observing body language
  • The Alzheimer Society can help teach communication strategies, and act as a navigator of the health care continuum. Call your local office, and speak with someone about available services

Last but not least, as a care partner/caregiver, seek ways to reduce your stress throughout your shared walk through this disease.  We all need to reserve some of our nurturing and love for self-care, because you are an equally important part of this journey.  Keeping the lines of communication open starts with a rested mind and reenergized spirit.

 

Ann-ChartierAnn Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.

Ann was a Family Support Counselor and Education Lead/Writer with the Alzheimer Society Niagara Region. (2012-2015) She continues to be a guest speaker, Alzheimer Society Volunteer and shares her stories from the eyes of a care advocate for her mom.