Sunday, July 17, 2016

Remember Me When This You See... Thoughts on Alzheimer's

I think the first time I ever really contemplated the effects of Alzheimer's, I mean really thought about the effects beyond the superficial understanding that it's a disease that affects your memory and your mind, was when a girl named Melanie, a student in my creative writing class, decided to base her final project on her grandmother. Who had advanced Alzheimer's. This was back in the nineties. What a lovely girl Melanie was... and how she laboured... how we both laboured... over her project. Making sure it was a fitting tribute to her grandmother, and to her grandmother's life. I still remember reading her rough draft. Wiping my tears as I read, and raising my head to notice Melanie wiping her own tears as she watched me read.  

I recently thought about Melanie and her writing project which taught me that Alzheimer's is about so much more than memory loss. I was reading Emma Healey's wonderful debut novel Elizabeth Is Missing. Healey's main character, Maud, is over eighty, and suffering from Alzheimer's disease, we assume. Whether Maud has Alzheimer's or some other form of dementia is never spelled out for the reader. But it doesn't matter, really. We learn quickly that Maud, wry humoured and obviously intelligent, has trouble remembering. The shelf in the hallway is lined with half finished cups of tea that she has made, put down, and forgotten. Her pockets are stuffed with notes she writes to herself. Reminders to not buy any more canned peaches. To wait until noon to eat the lunch prepared for her by the visiting "carer" Carla. And a note that wonders if her friend Elizabeth is missing. 

Emma Healey's Elizabeth Is Missing


And that is the main thrust of the plot. Maud's belief that her friend Elizabeth is missing because she doesn't answer her phone, and when Maud finally goes to Elizabeth's house, she isn't there. So where is she? And as Maud struggles with the loss of her friend and with, well, everything really... all the confusion, and fear and exasperation of her day to day life... she also ponders a much older mystery. Where did her sister Sukey go when she disappeared over forty years ago? Healey weaves these two plots together, jumping back and forth between Maud's present and her past in the aftermath of World War II when her sister simply disappeared.  

The book is not perfect. Maud is by virtue of her failing memory an unreliable narrator. In her review in The Guardian Viv Groskop notes that Healey's plot device eventually becomes "frustrating rather than thrilling." A sentiment I would agree with. But she also calls Healey's book an "impressive debut," comparing her work to the mysteries of Kate Atkinson in being "not quite crime, not quite literary fiction." Comparing any writer to Kate Atkinson is high praise in my book. And frustrating as the plot becomes at times, Healey brings both mysteries to a satisfying and inextricably linked conclusion. I mean, of course they're linked. This is fiction after all. 


Elizabeth Is Missing author Emma Healey
Elizabeth Is Missing author Emma Healey    source
But plot aside, I think it's Emma Healey's ability to bring Maud to life so convincingly for the reader that is the book's strongest attribute. The novel is told in the first person, so we see what Maud sees, feel what she feels. Her fear, her confusion, her determination to not be identified just by her disease. Although Healey doesn't really deal with the other aspects of Alzheimer's and dementia. And only peripherally with the burden of care for Maud that falls on her daughter, she still helps the reader to develop a deep empathy for Maud. How someone as young as Healey (she was not yet thirty when she wrote the book) can get into the head of an elderly woman suffering from dementia is amazing. And wonderful. 

And timely in a world where the number of cases of Alzheimer's disease is growing daily. Timely given the fact that most of us will be affected by the disease in one way or other. Sooner or later. Whether we're caring for aging parents, partners, or battling the disease ourselves. According to The Alzheimer Society of Canada 747,000 Canadians were suffering from the disease in 2011. And the numbers are growing as our society ages. The Alzheimer Society website is a great resource in explaining the difference between Alzheimer's disease and dementia. Apparently dementia can be caused by numerous conditions, of which Alzheimer's disease is only one. The website also outlines the symptoms of Alzheimer's, explains the stages of the disease, and what one might expect if you, or a loved one, are diagnosed. Needless to say, it's not a fun read. There are also good links to resources for family members and those who will eventually shoulder most of the burden of caring for those with Alzheimer's.

The video below is just one of many on an amazing site I found called Living With Alzeimer's Film Project. Films submitted to this project attempt to tell the story of those who are affected by the disease. In one film the narrator, Anna, says that she suffers from Alzheimer's, that she wants to tell her story not to educate or inform, not to talk about prevention or cures, but just to show that once she was "beautiful, and intelligent," that she's a "real person who mattered," that she "still matters." 

Have a look at this one. It's only six minutes long. Not too much time to invest to learn about this woman named Joy.

    
Joy from Objekt Films on Vimeo.

Now back to Emma Healey's book Elizabeth Is Missing which made me think of my former student, Melanie. And how both of these young writers managed to make their readers feel such empathy for people affected by Alzheimer's. But, you know, reading this book also made me think of the two friends who I've recently learned have been diagnosed with the disease. And of a close family member. 

My sister's husband underwent heart surgery last winter. As a result of his extreme reaction to the surgical anesthetic, he was tested for and ultimately diagnosed with Alzheimer's disease. And I think about him... and about my sister... a lot. Especially about my sister. 





Okay. Enough. As my mum always says when we talk about the past or about difficult subjects... enough of that, now.

How're you doing this week? Read any good books lately? 


Linking up with Thursday Favourite Things at Katherine's Corner

35 comments:

  1. Alzheimer's is just so much more than losing memory, is the thing:(. Might be able to read this book in a few years, right now it's too close to home. Thanks for the review.

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    1. I thought of you too, Lisa, when I was writing this. Take care.

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    2. I'd say the same as Lisa, even though I've had a few more years and my mom's condition was not full-on Alzheimer's but more conservatively diagnosed as Mild, then Moderate, Cognitive Impairment. As much as, perhaps even more than, the memory loss was her inability to read in any sustained manner after a lifetime through which she read two or three hours daily. Similarly, offered opportunities to garden, having had to give up her own, she seemed to have lost interest in an activity that used to define her. Affect was, well, affected. . . And I'm not even sure she had Alzheimer's as much as natural dementia of aging, but it does seem that personality change is a part of that profile, maybe tougher than seeing memory erased.

      I read Healey's book last fall and wrote about it, but/and I really appreciate your approach to it here, the connections you make, and the story about your student's writing.

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  2. I loved the book,even more being written by so young author.
    It is such deteriorate and heartbreaking disease,both for the patient and the family.
    During my prolonged weekend travel, I have read The Swans of the Fifth Avenue and DV,memoirs of Diane Vreeland-both appropriate for aeroplane,but The Swans made me thinking a lot about human relations
    Dottoressa

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    1. You're right...heartbreaking. We wouldn't wish this disease on our worst enemy..let alone our loved ones. I must check to see if my library has Swans of Fifth Avenue. Thanks for the recommendation.

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  3. Such an emotive subject. So painful for those who have been touched by it . The whole range of emotions are stripped bare from frustration to loss of a person you knew, but no longer inhabitants the body still in front of you. Carers of dementia victims have my every good wish. I can imagine for some 'Elizabeth is missing' would be too raw a read. Certainly too soon for me, but maybe one day. B x

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    1. Definitely painful. When I was researching this post, I had to stop watching the short films after a couple. Kept thinking of my sister and what's in store for her. I can imagine that many would find this book too close to home.

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  4. It must be a very hard subject for many people to cope with but there should be more awareness & this book may help . I have it in my book pile but need to be in the right mood for that kind of book . I'm rather a book 'wimp' these days . There's such a lot of sadness in the world , filling our sitting rooms every evening , so I shy away from too much grim realism . My latest reads have been Oleander Jacaranda , Penelope Lively's memoir of her childhood in Egypt , poignant at times but not sad & Ben Hatch's Are We Nearly There Yet ? - that made me laugh .
    Wendy in York

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    1. Me too, Wendy. Most of the time I've been shying away from books that are too intensely emotional or too dark. Life is hard enough. Must tell you I'm currently enjoying The Red Notebook, based on your recommendation a few months ago. Almost Pym-ish in it's gentle humour. It's a good follow-up to Healey's book.

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    2. I completely agree with Wendy and you
      D.

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  5. You are welcome,but Hostess recommended it in first place. However,as I said at Materfamilias reads- an interesting study of human relations and psyche
    D.

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  6. Unfortunately, alzheimers runs in my mother's side of the family. (Grandfather, mother, uncle) It is the thing I fear even more than cancer. However, my father's side of the family is quite free of it, so hopefully I have a few more of his genetics. I can't and won't read books about, or watch movies about the disease. It is far too difficult. -Jenn

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    1. It must be very, very difficult, Jenn. No need to bury yourself in fiction about Alzheimer's when real life is quite hard enough.

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    2. Oh, on a different note, I want to thank you for suggesting Mary Lawson as an author. I recently read Road Ends and absolutely loved it. I plan on getting ahold of her other books soon. -Jenn

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    3. I so glad you liked Mary Lawson. I love her books.

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  7. Hi Ms.! This post obviously caught my attention in light of what my father has been going through. I'll have to take a look at this book over the summer. A book that really helped me when my father first got his diagnosis is "Still Alice" by Lisa Genova. The movie was a bit too much for me (the book is always better anyway!), but the book is really beautifully written, and gave me a better idea of what my father was/would be going through. Its awful to see someone you love disappear in slow motion, and it can be easy to forget that the experience is just as hard on them. What was particularly important for me was that the main character, Alice, always recognized who her people were and knew that she loved them even if she couldn't remember how or why. This was a huge comfort to me back then, and I've found this to be the case with my father as his dementia progresses as well. My family and I have learned to look for positives like this whenever we can.

    Thanks for the great post! Its been so nice to have my favourite teacher's (virtual) voice back in my life again!

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    1. Thanks for this comment Sarah. Both for the reflection on Genova's book, and for that last bit:) I knew about your dad from your uncle Barry. Glad that you and your family can find positives in this situation. Still, finding positives (or at least trying to find them) is the best way to survive isn't it?

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  8. Very moving post Susan, thank you. I find myself, now in my mid sixties, often thinking about what the future holds. Although my spirit of adventure is still fully intact, I can't deny that I am often seized by worry about family members--my considerably older husband and my dear sister, who, for different reasons, give me cause for concern. I suppose it's perfectly normal to think about these things, as one reaches a certain age.
    Now, on to books... I recently reread a wonderful book (in translation from the Spanish) that dates back to 2004--The Shadow of the Wind by Carlos Ruiz Zafon. Set in Barcelona post WW II, it is equal parts dark mystery, romance, and fantasy surrounding the main theme of books, and their power over those who read them. Absolutely captivating storytelling has made this one of my favored "best reads". It's a page turner, even on second reading!

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    1. I'm with you in the worry department, as well as the older husband thing. I must try to find that book you mention at the library. That's certainly high praise.

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    2. I can also recommend The Shadow of the Wind.

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  9. Just this week a favorite friend and former High School Art Teacher, succumbed to Alzheimer's and it's consequences. It's been most difficult for her husband who devoted himself to her care the last 15 years. And more than likely she was unaware. Such a sad thing to lose control of one's own mind.

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    1. Really... being a carer consumes one's life, doesn't it? I'm so sad that this might be (probably will be) what my sister will face.

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  10. Susan-- Great post (one of my favorite things about your blog is the mixture of topics!). I just finished The Penny Poet of Portsmouth and thought it was terrific. I'm excited to read The Red Notebook (and I added Swans of 5th Avenue to my list too!). Hope you're having a good day, Beth

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    1. Ah, thanks, Beth. I'm enjoying The Red Notebook. Not heavy at all... just lovely. Recommended by Wendy from York.

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  11. Lovely post. I lost my grandmother and mother-in-law to Alzheimer's, and my spouse to another form of Dementia. It is so much more than memory loss and so sad to watch someone you love slip away even as they sit in front of you. In my experience, all three of the above knew the people they loved as people they loved, although the assumed identities might shift. My spouse was sometimes recognized as son, but often as cousin or brother, or even father, depending on where in her memories MIL was compared to the person before her. At the end, I was always the loved one for my spouse, and could be simultaneously his wife, or his mother or sister, or even daughter, depending on the day and where and when he was in his own mental circuits. This is worth remembering, and that in the fog of dementia, even loved ones can be strangers on the periphery, but once you begin to relate one on one, sometimes a spark is kindled.

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    1. Thanks, Mardel. I cannot imagine how hard dealing with this disease, let alone with multiple family members, must be. Sarah, who is a former student of mine, also mentioned this aspect. Her father suffers from Alzheimer's and she says that knowing that might be the case for her dad was a "comfort."

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  12. I was widowed 10 years ago when my husband of 46 years died very suddenly of complications due to A's disease. He had it for about 15 years. The first symptom, which we did not recognize, was his ever-so-slight difficulty remembering words. That was very unlike him, but it seemed to be a consequence of aging. Little by little other changes came and then, perhaps 6 years later, we got a formal diagnosis. He went on medication at that point. The most important thing I did as the sole 'nurse' was to learn all I could. The book that helped me most was, "All You Need to Know about Alzheimer's Disease" by a Dr. Molloy. It was a nuts and bolts explanation of the stages, which helped me stay ahead of the disease. (I checked Amazon just now but it was not there. I read other things too. I'm sure there are many books available now.) The counsel and suggestions calmed me and gave me courage to face reality rather than deny what was happening. The last years were stressful, especially when he no longer knew who I was, but I viewed him as my patient, as I treasured him as my husband. Not long before he died he finished dinner one evening, but still seemed unsatisfied. I asked him 'if there was anything else he would like?' He looked at me with calm and twinkling eyes and slowly said, as lucidly as can be, "I want chocolate!" I dug out a big Trader Joe bar and said, "Go for it!" (What, he was going to overdose?) For a flicker of time he was 'there' and had me laughing as he always had.

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    1. Thanks so much for the lovely comment. Elaine. Fifteen years... is as Lisa says below...a very "long good-bye." Hope you managed to find equanimity afterwards.

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  13. love this, great post! hope you're having an amazing day :)

    facebookpage

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  14. I found the grieving I did for my mother began when she first developed dementia and lasted for the next five years. When she died I didn't grieve. I thanked God she was free and her suffering was over.It is a real effort at times not to be overcome by fear of what might lie ahead.Mindfulness helps at those times.

    The Shadow of the Wind was fantastic.
    I have just finished The Ballroom by Anna Hope and it is still on my mind a week later.Also good, The Undertaking by Audrey Magee.Lastly,Nora Webster by Colm Tóibín.
    Enjoy your blog a lot. Thanks
    Mary

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    1. Thanks, Mary. Mindfulness helps with so many difficult situations, doesn't it? I've now put your suggestions on my to-read list:)

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  15. Alzheimer's took my grandmother away. Long good-bye. The book is going on my to-read list, thanks!

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    1. Just stopped by your blog... more book suggestions. I'll definitely be back!

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All comments, ideas, commiserations, questions, complaints... are most welcome.