Alzheimer’s Disease

Don’t Go To See Still Alice…Yet

Still Alice

Warning: This post shares nonspecific pieces of the story/movie Still Alice by Lisa Genova that could be considered spoilers.

If you haven’t seen the movie Still Alice, playing now in theatres, I urge you to read the book first.
Still Alice by Lisa Genova, is a beautiful and touching story that explores the devastating truths about the destructive disease Alzheimer’s.

Like many a book-turned-movie, there is a certain amount of disappointment for those whom have read the book before watching the movie; it’s nearly impossible to capture and translate 300 hundred pages of events and relationships into a 90 minute movie.

Perhaps the movie skips over your favourite part of the book or the director doesn’t cast the characters the way you pictured them; there are many reasons that movies don’t always live up to their respective literary counterparts.

READ THE BOOK BEFORE SEEING THE MOVIE

In the case of Still Alice, I am particularly adamant that one should read the book before watching the movie. It’s not that the movie isn’t good or that the acting isn’t top-notch; it’s that Alice Howland‘s (the main character) story is so profound and the relationships between the characters so complex that you need to absorb every single sentence to appreciate the full extent of the story.

It is my opinion that everyone should first experience Still Alice in its original form. The movie skipped over some very key pieces from the book and changed some others that are essential to the beauty and heartbreak of the story.

In order to fully appreciate the loss that Alice experiences through her struggles with Early Onset Alzheimer’s, one needs to understand that Alice’s identity is almost solely based on her mind. She is a cognitive psychology professor at Harvard and a world-renowned expert in linguistics. I don’t feel that the movie paid enough attention to this.

One also needs to be aware of the convoluted relationship that Alice has with her youngest daughter, Lydia, to be able to appreciate how this relationship evolves throughout the story and demonstrates perhaps the only ‘upside’ to her diagnosis.

I feel that these are two key pieces from the book that aren’t depicted to their full and necessary extent in the movie version of this story.

In both the movie and the book, there is a scene where Alice, now fairly progressed in her disease, gives a moving speech to a respected audience on the topic of Alzheimer’s. I feel that this part of the story is the essence of Still Alice as it shows that Alice, despite her disease, is in fact still Alice.

The movie misses the mark on capturing this scene; it portrays Alice in a less confident and more fragile state. It does not depict this moment to be the powerful event that it is in the book.

There are a few other key pieces of Alice’s story that aren’t shown in the movie that help to paint the picture of just how frustrating this disease is. I won’t mention them here today because I don’t want to give away too much but I encourage you to make the comparison yourself.

WHY I’M SO ADAMANT

Alzheimer's Stigma

Perhaps I’m a little biased on this topic; you see I have experience with this awful disease. I know what it is to watch someone you love and respect change for no apparent reason. I know the feeling of seeing it in their eyes; seeing that they don’t know who you are, only that they must have loved you at one time. I know how Alzheimer’s made me feel watching someone I love drift away.

Now that I have read Still Alice, I feel that I know a little more about how my loved-one must have been feeling when the first signs of Alzheimer’s started to show. It must have been terrifying, confusing and heartbreaking.

Like other mental illnesses, Alzheimer’s has a stigma attached to it and I believe this stigma is captured perfectly in the book:

And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be an outcast. Even the well intentioned and educated tended to keep a fearful distance from the mentally ill. (Genova, 117, 118)

I want people to read Still Alice to help spread awareness on the topic of Alzheimer’s disease, to help end the stigma and to gain a little understanding about what those plagued with this disease might be experiencing.

I want you to be able to enjoy the whole story of Still Alice, not just a piece of it. Even if you are not an avid reader, you will find Still Alice to be an easy and rewarding read. You will put the book down after you turn the last page and be glad that you devoted the time to reading it.

Then by all means go and see the movie as it, too, is a lovely story with an excellent cast and wonderful acting.

For more information on Alzheimer’s disease visit alzheimer.ca

Have you read Still Alice? Have you seen the movie? What are your thoughts?

City Mom

What My Grandma Means To Say: Helping kids understand Alzheimer’s Disease

I’ve had this gem of a story in my hands for a number of months. I’ve been hanging on to it to share this month because January is Alzheimer’s Awareness Month. I am so happy to be able to share it with you today.

What My Grandma Means to Say written by Canadian author JC Sulzenko, is an amazing story about an eleven year-old boy named Jake and his struggle with understanding the changes his grandma undergoes while battling Alzheimer’s Disease.

I have a story to tell you. It’s a story with a lot of truth in it. Once you’ve heard it, you can make up your own mind about whether it leaves you a little bit happy, hopeful or sad – or a mix of all three. That’s up to you.

This story is written for children in grades 4 to 6, but to be honest it spoke to me on such an intimate level. You can learn about my experience with Alzheimer’s Disease through a previous post on City Mom. What you’ll notice is that my story is almost identical to Jake’s.

Reading this story reminded me of my struggles with understanding what was happening to my Grandpa and my Grandma. It caused me to reflect on a time that I felt like I had lost them. A time that caused a constant battle in my heart and mind; visiting them was too painful but not visiting was just as upsetting.

I wish that What My Grandmas Means to Say  had been in circulation at that time in my life. The author accurately captures the feelings that a young child experiences when dealing with a loved one experiencing Alzheimer’s and dementia.

FOR PARENTS

This story helps to create a dialogue for parents when discussing and educating their children about Alzheimer’s Disease. It assists in answering those tough questions that perhaps even adults have trouble understanding. At the end of the story there is a section included of questions and answers that covers things like the different stages of the disease, tips for visiting loved ones suffering etc.

FOR CHILDREN

As mentioned, this story is intended for children from the ages of 9 -11 but I think that it is suitable for children of all ages who are old enough to understand that their loved ones are changing. It will help to comfort the child and provided that feeling of “I’m not alone.”

BUY IT

What My Grandmas Means to Say can be purchased through General Store Publishing House online and through Chapters.ca for $12.95.

What experience do you have with Alzheimer’s Disease? How have you educated your children on the topic?

Alzheimer Society Walk For Memories 2011

 Every year in May, my family and I participate in the Alzheimer’s Society Walk For Memories. We walk to support the individuals and families who are affected by this devastating disease. We walk for our own reasons too.

My Grandpa was one of the best men in the world. This is not an exaggeration. He used to walk my sisters and me wherever we wanted to go, usually the park. He would watch and wait, watch and wait. It felt like we spent hours there and I don’t ever remember him telling us we had to leave.

He did whatever it took to make us girls happy. He had endless patience.

He served his country as a Flight Lieutenant in World War II. He flew 37 missions as a Navigator over enemy territory and he was awarded the Distinguished Flying Cross for showing courage and completing his service. He provided for his family and took excellent care of his grandchildren.

FORGET ME NOT

I remember when the sadness started. One day I overheard my parents talking and their tone seemed to be filled with worry. My Grandpa, who loved his long walks, had gone missing. He left one afternoon for his stroll and never came back. He was later found by a nice couple who called the police and got him home safely. He couldn’t remember how to get home.

I think this happened a few more times. I remember when the decision was made to place him in a home. He was sent to live at Parkwood Hospital.

We were lucky to have a place that we could trust to care for my Grandpa. I asked why he was going and I was told. It’s not something I wanted to hear because he was my hero.

I heard of a night that he got up and ate a banana. Being the clean and thorough man that he was, he peeled the banana and placed the skin in the garbage. After finishing one banana he had another and another because he couldn’t remember eating the one prior.

When I went to visit him at the hospital my heart broke. We were very close and spent so much of my childhood together, but now he didn’t know my name. He just referred to me as ‘dear’. He knew he loved me and recognized my sad, childlike face but didn’t know my name.

I was only 15 at the time and too young to know regret. I started avoiding the visits. Coming up with excuses as to why I couldn’t go. It was so hard for me to see my Grandpa suffering like this and so hard to see this man change into a stranger.

A number of years later we had to watch my Grandma go through the same transition. Sadly I was prepared and had experience with this. I had tough skin this time around. I would visit on my own because I could handle it. Then she would ask me the same questions each visit and multiple times in the same visit.

I stopped going by myself and needed my parents to accompany me perhaps for support or maybe distraction. I started going less and less, my heart breaking each time.

My Grandma passed away last year and honestly I am happy for her. She is free of this debilitating disease and she is with my Grandpa now. Both in a far better place I am sure.

I have painted this picture today to draw focus to the import role the Alzheimer’s Society plays in our community. With an estimated 185,000 Ontarians living with Alzheimer’s disease or related dementia, the Manulife Walk For Memories plays a critical role in supporting individuals and their families facing this disease.

Manulife Walk For Memories 2011

 

PARTICIPATE IN THE CAUSE

The Alzheimer Society of London & Middlesex Walk For Memories is Saturday May 14, 2011 at Springbank Park. Click on the link below to register as an individual or as part of a team.

Participate

SUPPORT THE CAUSE

If you’re unable to participate in the 2011 Walk For Memories you can support the cause by making a general donation or by finding a volunteer position.

You can also support me in the 2011 Walk For Memories by clicking on this link and donating towards my fundraising goal.

This year I have a personal goal of raising $250 towards my family’s overall goal of $1000. The smallest amount to the largest amount are equally appreciated.

Thank you in advance for supporting such a worthy cause!

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