Would you read it? Would you go watch it?

There have been a few (many?) movies and books where the main topic was about someone with Alzheimer’s or there was a prominent character in the story with dementia.  Let’s not forget about the books written by someone with Alzheimer’s too.  But as shown by the topic of this post….would you?  Would you, could you read that book or go to the movies to see that movie?  Let me clarify something for a moment, I am not referring to any books that are meant as a help or guide for someone who either has dementia or is a caregiver.  Those books I have read!

No, this is about fiction and non-fiction dealing with Alzheimer’s.  A few books are: Dancing on Quicksand A Gift of Friendship in the Age of Alzheimers by Marilyn Mitchell, Still Alice by Lisa Genova (now a much touted movie), The Notebook by Nicolas Sparks (also a movie), and Elegy for Iris by John Bayley.  I am sure there are many more but these are just a few.  A few movies are: As previously mentioned Still Alice and The Notebook, Iris: A Memoir of Iris Murdoch, Away from Her, and Still Mine.

Have I seen any of these movies or read any of these books? No.  Why? Because I cannot bring myself to read about or go see a movie about something that I watched for 14 years take my mother away from me.  I could probably write my own damn screenplay but then again, couldn’t all of us who are/were caregivers or are dealing with the disease itself?  I went to see the remake of Planet of the Apes where the actor John Lithgow, while not a major character in the movie, was a bit of the spark for what led the apes to become what they became.  He was portraying a person who had Alzheimer’s.  And you know what happened?  I freaking cried in the movie!

Did not see it coming; was totally blindsided by this emotional outburst.  To this day I have no idea why I started crying but my best guess would be that seeing his decent into the disease and his eventual death reminded me of my time and of a hurt that while I thought I was somewhat past it all, I apparently was not.  And that is why as much as the books and movies may be great and Lord I hope they can do something positive to increase awareness (and funding) for a cure/help for the disease, I cannot deal with them.  They remind me too much of what I lived through and frankly, I do not like crying into my popcorn!

I was recently blindsided (again – geeze!) by a post I read.  It was on the blog of, Frangipani, a woman in Singapore whose mother has dementia.  She  had a link on her post to the blog of a woman who is dealing with early onset Alzheimer’s.  Gill – of Before I Forget – lives in England and wrote a post about how the person with Alzheimer’s feels about the trauma we caregivers feel about taking care of them.  For one, it was wonderful to read about Alzheimer’s from the other side of the fence (my mom wasn’t able to fully communicate her feelings but there were days I could sense it) and it was an eye opener.  And it was also another Ninja attack right between the eyes for me.  Didn’t see it coming and sure as hell did not see the floodgates of emotions it unleashed.

Her post took me right back there to being a caregiver and the things I said to and around my mother somethings that at first were really really horrible and then slowly changed as she became worse and I learned better – not totally – to accept things as they were and were going to be.  I ran upstairs to where my husband was cooking dinner (yay for him cooking!) and just sobbed I needed a hug.  Him being analytical is asking what? What happened? I couldn’t explain I just needed a hug and finally he caught the clue and held me as I sobbed about some guilty feelings that I thought were long gone…apparently not!

So that is why I cannot read these books or go see the movies.  Maybe one day, maybe not but unequivocally not happening now!  It’s interesting though that I can read blog posts much more readily.  Perhaps it’s because I feel they are more “real” and that I can comment and even start a conversation with them if we both choose.  Sometimes I feel that maybe I am in some way helping by leaving a comment or a word of encouragement.  So returning to the title of this post – would you, could you read these books or go see these movies?  Or have you already?  Tell me why you have or haven’t.

 

 

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  1. #1 by justinaluther on January 11, 2015 - 5:11 pm

    I’m not a caregiver, but as someone with an elderly dad I think these movies or books would still be difficult to see. This being said, I have written a character who has the early stages of dementia and I might write one again someday. I think it’s different when I’m writing because I’m in control over how much the character goes through, whereas when I’m watching I have no control.

    • #2 by A caregivers memoirs on January 11, 2015 - 9:21 pm

      Yes. That lack of control by the caregiver and the one with the disease is frustration magnified.

      • #3 by justinaluther on January 11, 2015 - 9:23 pm

        I can’t even imagine.

      • #4 by imagesbytdashfield on January 11, 2015 - 9:25 pm

        I think it’s worse for the one with the disease. As a caregiver we get frustrated but at least we can try something else…sometimes.

      • #5 by justinaluther on January 11, 2015 - 9:28 pm

        True. I’ve tutored those with mental disorders, for lack of better term, and it’s not easy when they give me everything they have, but still don’t understand what I’m trying to teach them. Very different situation, but I imagine that’s a small part of the frustration you’re speaking of.

      • #6 by imagesbytdashfield on January 11, 2015 - 9:31 pm

        The difference there is that someone with a mental disorder (not dementia) can possibly improve or at the best won’t get too much worse than what they are (I could be wrong there too but…) but with dementia there is no cure, no medicines to keep them functional for a long time and worse thing is knowing inside that you are losing everything you ever were or knew. For the caregiver, in my case, it frustrated me when I couldn’t win the fight against the disease and bring my mother back as I wanted her to be.

      • #7 by justinaluther on January 11, 2015 - 9:33 pm

        I’m so very sorry.

      • #8 by imagesbytdashfield on January 11, 2015 - 9:36 pm

        Mom finally was liberated from the disease when she passed away in 2010. In a way we were both liberated. Thank you for commenting today 🙂

      • #9 by justinaluther on January 11, 2015 - 9:37 pm

        It was my pleasure. As a writer I’m always looking to learn more and your post was extremely enlightening. Keep up the wonderful work.

      • #10 by imagesbytdashfield on January 11, 2015 - 9:44 pm

        Thank you very much. I hope you take some time to read some of my past posts as well where you can learn a bit about mom 🙂 These memoirs are a work in process.

  2. #11 by notquitetheplan on January 11, 2015 - 6:27 pm

    I read Still Alice when my mother was in an earlier stage of the illness and I found it helpful- though rather painful. At this point I cannot imagine going to see it in the movie theater.

    • #12 by A caregivers memoirs on January 11, 2015 - 9:24 pm

      It’s the painful part which makes it difficult for me to read or see these things. I imagine if I had known about these books (that is if they even existed back then) when mom first became ill I might have read them too like you did.

  3. #13 by Before I forget... on January 12, 2015 - 11:28 am

    Thank you so much for your wonderful words. I have yet to see Still Alice but know I will need a box of tissues. When I write I don’t see myself as having this disease, strange eh? I know I have real cognitive difficulties, and some emotional difficulties that I try to keep hidden. Sometimes I take a deep breath before I press the ‘publish’ button because I write my honest raw feelings and risk my husband reading it which he says he no longer does. He cannot understanding of why I write so publicly but it helps me cope with my feelings.

    When I read your post it made me cry, humanity can do that can’t it?

    • #14 by imagesbytdashfield on January 12, 2015 - 1:56 pm

      I hope my post didn’t make you sad or cause hurt feelings; tears of understanding perhaps? I don’t know. I understand the internal battle of keeping a lid on the emotions when all of the learned “socially” acceptable ways to be, say and do have become harder to use or recall. I’m sorry your husband doesn’t understand what your writing does for you. Maybe his not reading is his way of coping as well. Keep writing 🙂

  4. #15 by Laurie Samsel Olson on January 13, 2015 - 3:43 am

    My father had a late life (55) diagnosis of schizophrenia with bipolar disease. A couple of years later One Flew Over the Cuckoo Nest came out. I couldn’t watch it for years because my Dad was in an Oregon mental hospital for a long while and he received electric shock therapy — just like Jack Nicholson’s character. It made me sick to my stomach to try and watch the film. I finally was able to get through it a few years ago. Not exactly the same as your situation — a loved one with Alzheimers — but similar.

  5. #16 by dementedgirl on February 26, 2015 - 3:50 pm

    I have seen the movies and read the books, and found them riveting and depressing in equal measure… I do like books that grip me and resonate, but yes they do linger…

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