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‘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.

Erica’s story

Erica’s story

I was ten years old when I first noticed the problem. My whole family was attending my brother’s hockey game on a typical Thursday night. My Papa came to every game since I could remember. As we prepared to leave, there was only one person missing, my Papa Joe.

With no sign of him in the arena, we went out into the parking lot to check if he was taking a minute and having a smoke. But to our surprise his car was gone. Confusion ensued because he never left without congratulating my brother on his performance. Luckily, not long after, he came back. He had thought he was meeting us at the house but when he got there remembered the hockey game.

Alzheimer’s is hard on a family. It’s not something you want to admit is happening and is even harder to see someone you love have to go through. In 2009 it struck my family. My Papa Joe was diagnosed with Alzheimer’s as well as lung cancer. Then, in 2013, he moved into a long-term facility.

This was especially hard on my Nana. She didn’t want to admit she couldn’t take care of him full-time and the stress that it brought, with her worrying through the days and nights, was too much. The truth is my Papa couldn’t be left alone. At the long-term care facility he is able to get 24/7 assistance. But still, my Nana takes him his coffee and muffin for breakfast every day and makes sure she’s there when he’s going to sleep.

Over the years, he has had good days where he’s more coherent and then bad days where he shuts himself away. This year, however, his memory has begun to deteriorate rapidly to the point that he is unsure who I am when I walk into the room and he has trouble speaking. But the one thing that never changes is his sense of humour and that’s something I will always cherish. No matter what has happened he can always laugh about it.

That being said, there are still tough times. My Papa loves going for drives and he’s chatty throughout the whole ride. The toughest part is bringing him home, and having the same conversation about where we are taking him. Even though I know it’s coming, it doesn’t make it easier.

Alzheimer’s disease doesn’t have a cure, but there are ways to help reduce the risk. Go out and be socially and physically active. Live a healthy lifestyle and don’t wait until you are older. You can try and prevent it now.

Erica StevensonErica Stevenson

Christine and her mother’s story

Christine and her mother’s story

hilda_and_christine_thumbWhen I think of dementia and what it entails I think of a “living loss”. On some level, no matter what our age, we look up to our mothers for guidance and advice. It is difficult to acknowledge the changes that come with dementia.  Suddenly it seemed my mother was not the mother I had known for my entire life. It was a huge loss for me and for my sisters.

My mother has been my greatest teacher. She taught me to be kind, to express gratitude and to treat all people with respect. I often remind myself of this as my mother and I journey through her dementia. 

Family still means everything to Mom. She often tells me that her heart jumps out of her chest when she sees me get off the elevator. She hugs me ten times during our visit and tells me she loves me, thanking me over and over and over again for coming to visit with her.  Expressing her love verbally and affectionately comes more easily as her dementia progresses.

It is a beautiful thing.

She used to be very reserved this way. There are quiet times when we simply sit and hold hands or walk together down the halls admiring the art work or the wreathes on other residents doors.

On some levels my mother is aware of her failing memory and she is embarrassed by this. I try to reassure her that it is my turn now – it is my turn to do the remembering for her. I  tell her that  while she may forget, I will always remind her of the special times we shared as family and the moments she still shares with my sisters and me.

I visit my mother often because even if she cannot remember the visits, but I remember them. She may forget the time I spent with her within minutes of my departure and that’s okay. But while we are together she is happy and fully present – and this is what really matters.

My mother often shares with me that in spite of her failing memory there is much to be grateful for. She is grateful that she can walk and talk and breathe easily. My mother is a gracious woman. She has always been kind and compassionate. And while there have been many losses she still exudes compassion and kindness to those around her.

Often we will pick up a coffee and take it with us as we drive around the city to all the old familiar places that still light up my mother’s eyes. We drive downtown and she points out where she used to work and where the theatres were and the clothing stores and the restaurants. And we drive to the different areas of the city where she lived throughout her life and she tells me about life back then. Her face lights up and we both smile. She reminisces about going door to door selling gladiolas as a child. About lying in the fields watching the clouds drift by. About working in her father’s store and her favourite teachers. She talks about life as a young woman and mother. She talks about my dad and how much she misses him. Sometimes I play one of her favorite CD’s when we are out driving and then we sing together. It doesn’t matter that she forgets some of the words, or that we listen to the same songs over and over again. It doesn’t matter because it makes my mom happy which in turn makes me happy.

Sometimes silence is her voice and we simply enjoy being in each other’s company.

My mother has a small white board hanging on the wall just inside of her room. As I am ready to leave after a visit I will often write a quote on the whiteboard so my mom can read it whenever she enters or leaves her room. She tells me that she reads and re-reads them often throughout the day. Perhaps it really isn’t this way but for the moment she is happy to see me writing a message and she asks me to read it to her before I leave.

Today I wrote: “A mother’s love is reflected in the eyes of her children.” Her face lit up and with heartfelt expression and she said: “That’s beautiful… thank you.”

My mother will always be a gift. She was my first true love and that will never change.

 

Why I work to support people with Alzheimer’s

Why I work to support people with Alzheimer’s

Beth Haas, Behavioural Support Worker for the Alzheimer Society of Oxford, shares her connection to Alzheimer’s disease.

Can you share what your personal connection to Alzheimer’s disease has been?

First it was my grandmother who had Alzheimer’s disease. It was still called senility in the 1970s.   At an early age,  I had to travel every other weekend to support her as she struggled to remain in the farmhouse where she had spent all of her married life.

And then, years later, Alzheimer’s struck again.  My mother began to experience memory loss. I witnessed  her  efforts to appear normal , but she recognized warning signs she had seen in her mother. I was 24 when she was diagnosed with Alzheimer’s disease.

And still the diagnoses keep coming. My mother-in-law was next, and this occurred  while caring for my father-in-law, who had vascular dementia. For a number of years, my husband and I juggled living far away with caregiving.

Were there initial warning signs that lead you to believe your mother’s health was changing?

With my mother, it was a year and a half before she was diagnosed.  She had short term memory issues but it went beyond that.  She seemed more fragile, unsure of herself, handed me her car keys to drive if we went out together, deferred to my father more often and became weepy. Her handwriting became shaky, spidery.

My siblings and I thought it was depression, specifically empty nest syndrome. She had no children at home for the first time in almost 40 years. She defined herself as a mother and she excelled at it.

Years later, while tidying my parents’ bedroom, I came across a letter that she had written to a talk show host after an episode on dementia. In her letter, she described noticing signs of memory loss in herself at least 3 years before any of us recognized changes. This seems to be supported in emerging research today: subjective cognitive impairment not yet detected  with today’s cognitive testing often develops into dementia.  What was heartbreaking was how she was so successful in hiding this from us for so long.

There are 10 warning signs of Alzheimer’s disease.  People may think these symptoms are a part of normal aging but they aren’t. Learn the signs here.

What support, if any, did you access?

The Alzheimer Society was brand new in the community where I lived. I attended one of their first support groups and it became a lifeline. I learned what we were experiencing at home was not unusual and, more importantly, that I was not alone.  They provided strategies, contact information for other community resources,  and an outline of what lay ahead. I inhaled it all and took it home to my dad and siblings.

Out of this came fuller understanding, more patience and tolerance for Mom and greater support for my dad who was the primary caregiver.

What propelled you to work in this field?

My original goal in university was to work in gerontology but then life intervened. My husband found employment in Europe. By then, my grief around my mother was too much to work in this field. Fifteen years after later when I was back in Canada, I was offered a position with the Alzheimer Society of Oxford.

My experiences help me understand what family members live with. It spurs me to think that I am contributing even in a small way, giving back to make the life of someone else’s mom a bit better.  That may sound clichéd, but my mother’s life guides me in most of what I do at work.

 Learn more about the 10 warning signs of Alzheimer’s disease.

Beth-haasBeth Haas, Alzheimer Society of Oxford

I have what? Frontotemporal dementia?

I have what? Frontotemporal dementia?

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

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

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

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

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

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

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

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

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

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

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

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

FTD had changed our lives forever.

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

fdd8c873df2214bMary Beth Wighton

Person living with dementia