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Puzzles for Good supports the Alzheimer Society

Puzzles for Good supports the Alzheimer Society

By: Kirsten Wreggitt, Chief Puzzle Constructor at Puzzles for Good

My Grandma made me pancakes in the shape of anything I could imagine – giraffes, Mickey Mouse, unicorns, and of course full moons. Those childhood breakfasts are cherished memories of family gathered together with Grandma at the center in her frilly apron. I remember that she laughed easily, always had a lap for you to sit in, and that she loved frogs. Of course, Kermit the Frog was her favourite, but I remember he was among many friends in the room I slept in at her house. That bedroom was filled with frog figurines on shelves covering each wall. There was no doubt that she was a fun loving person; a pretty perfect Grandma and a wonderful wife and mother too.

That is how I want to remember her, spatula in hand laughing with us at breakfast. Unfortunately, we also had to witness a slow and painful decline until we lost her to Alzheimer’s. At first she simply misplaced things or forgot a meeting, but over time it progressed to forgetting people, forgetting how to care for herself, and finally forgetting who she was. Such a terrible loss.

Many of us joke about forgetfulness and old age. I wish Alzheimer’s stopped with a little forgetfulness. The final stages of Alzheimer’s are no joke and it would be a wonderful thing if no other families had to witness or experience this loss of a loved one.

I am the owner of Puzzles for Good. It’s a social enterprise that creates word puzzles and shares the proceeds with organizations doing great work in the world.

I hold the memory of my Grandma dear to my heart and so I picked the Alzheimer Society of Canada as the recipient for this month’s puzzle pack.

Puzzles are great for brain health and are also so much fun! Get your Memory Puzzle Pack here.

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

Coffee Break® brings the community together

Coffee Break® brings the community together

Verna Mowat

For the past few years, Verna Mowat has been hosting a Coffee Break® event on her family farm in the Westman region of Manitoba. Despite wind and rain, people in the community venture down the gravel road to Verna’s farm, where a smile and a warm cup of coffee are waiting for each Coffee Break guest.

“Lots of people from the community all come out – from Cypress, Glenboro, even neighbours down the road. I think we had 35 people last year,” says Verna.

Running with the mantra that a Coffee Break event can be as big or as small as you like, Verna goes all out in getting everyone involved. She makes the most out of the Coffee Break event kit (supplied by the Alzheimer Society) by encouraging people to autograph her Coffee Break poster. Many of her guests love this gesture as it gives them an opportunity to write a personal message about who they’re supporting.

Verna’s dedication is born out of her desire to help make a difference in the fight against dementia. Her mother lived with it for 19 years and her sister is currently going through the mid-stage of Alzheimer’s disease. Verna has seen the effects first hand and is concerned about the toll it takes on families.

In addition to raising money through hosting a Coffee Break event, Verna sells home-made pottery pins at craft markets in her community. Contributors like her are integral to ensuring the Alzheimer Society is able to support those affected by dementia. We thank her sincerely for everything she has done.

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

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

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.

What is your connection to Alzheimer’s disease?

My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.

Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs.  Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey.  In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.

What were the initial warning signs that led you to believe your mother’s health was changing?

She began taking notes when she and I would have conversations over the phone.   When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.

Mom also began repeating stories and had difficulty finding words, which progressed over time.

Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer.  This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.

What support, if any, did you access?

I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.

I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.

The Alzheimer Society provided all that I needed and more.  I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.

Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed.  This help proved invaluable over the course of Mom’s journey.

As a family, we learned to live “in the moment” with Mom.  We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.

When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

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

Tips and resources: making the most of Family Day

Tips and resources: making the most of Family Day

sharonWhen it comes to visiting Mom, I like the normal days, where my only expectation is to “connect” with my mom. The days I don’t like are holidays: birthdays, Christmas, Thanksgiving, Family Day – they all remind me of better times. I feel so overwhelmed by the Mom I have lost, that I don’t have the energy to “find” the Mom who is left behind.

On these occasions I enlist my family members or friends to come with me. I let them know I’m feeling low and I say, “I need you with me so I can face this without ruining it for Mom.” Usually, that is just enough to push me past the tough part and enjoy the visit.

Another thing is keeping it simple. The less elaborate the plans, the less deep the disappointment when she is not having a good day or doesn’t respond the way I had hope she would

Sharon Osvald, caregiver

Days like Family Day can be difficult. You never know whether your friend or family member is going to have a good or bad day. Regardless of what you have planned, following these tips can help improve communication for any visit:

  • Introduce yourself, even if it feels awkward.
  • Use humour and smile.
  • Don’t argue.
  • Go at her pace.
  • Use visual cues and gestures for direction.
  • Accept inappropriate answers or nonsense words. Don’t correct his ideas.
  • Don’t ask: “Don’t you remember?

 

Other resources for families

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

Learn more about:

 

edy_grazianiEdy Graziani with her mother, Bruna

How a diagnosis helped my mom

How a diagnosis helped my mom

scan0002At first, it was small changes. My mother was losing things and getting on the wrong bus. But then I began to notice more unsettling changes. She wasn’t taking care of herself, slept a lot during the day and was becoming even more confused.

I knew something was wrong. I took her to her doctor. We got the always shocking, but ultimately expected news. She had dementia.

I felt mixed emotions. But knowing the source of my mother’s difficulties was a relief. And with that diagnosis came my resolution to help my mother remain active for as long as possible. Because I knew that if she didn’t use the abilities she had left, she would lose them quickly.

As a first step, I got her on medication to help with her dementia. But I wanted more, so I began sending her to a local day program every day. And then I got help for myself, with a personal support worker provided by my local Community Care Access Centre and by sending my mother to respite care to give myself much-needed breaks.

And what a difference this has made for both of us. The doctors are amazed at how well she is doing.   My mom is happy. She has a great time at the day program where she eats well and gets mental and physical stimulation. She even regularly sleeps through the night, something that any caregiver knows is a blessing.

I have advice for anyone who thinks they or their family member might have dementia: see your doctor. The sooner you know, the sooner you can act. It made all the difference for my mother.

To learn more about early diagnosis, visit our website.

sharon

Sharon Roszel

Caregiver