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    • CommentAuthorcrstrob
    • CommentTimeOct 25th 2007 edited
     
    After looking at Joan's book list, I thought maybe I'd make a list of the books I've read in the past three years since Chuck was diagnosed. Some are fiction, some are memoirs, some are help guides. All of these have been helpful in one way or another. I seem to be drawn to books on Alzheimer's hoping to find a tidbit of info that will help Chuck through this terrible disease. I hope others will share the names of books they have read too. All or most of these books can be pulled up on Amazon for a description of the book. Here is my list to date (I left out the ones Joan has already shared with us):

    "The Forgetting: Alzheimers, Portrait of an Epidemic" by David Shenk
    "Shades of Grace" (fiction) by Barbara Delinsky
    "The Notebook" (fiction) by Nicholas Sparks
    "Tears in God's Bottle" by Wanye Ewing
    "Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers" (my favorite help guide) by Daniel Kuhn (I have pages marked throughout this book)
    "A Dignified Life: The Best Friend's Approach to Alzheimer's Care" by Virginia Bell and David Troxel
    "When Someone You Love Has Alzheimer's" by Marilynn Larkin
    "Young Hope: The Broken Road" by Tracy Mobley
    "When It Gets Dark: An Enlightened Reflection on Life with Alzheimer's" by Thomas DeBaggio
    "Remember" (fiction) by Karen Kingsbury w/Gary Smalley
    "Alzheimer's--A Love Story" (I really associated with this one) by Ann Davidson
    "A Curious Kind of Widow: Loving a Man with Advanced Alzheimer's" by Ann Davidson (sequel to her first book)
    "The Long Goodbye: Memories of My Father" by Patti Davis
    "Ice Cream in the Cupboard" by Pat Moffett.

    I keep a list of books I have read (can you tell?). :-)

    From Joang - All books can be purchased through the Amazon links on the home page - www.thealzheimerspouse.com. Each purchase helps keep this website running. Thank you.
    • CommentAuthorAdmin
    • CommentTimeOct 25th 2007
     
    Wow! I thought I read a lot. I, too, keep a list of books I have read - in the computer, alphabetized by author. And they say AD patients are obsessive!

    I was unaware that The Notebook was about Alzheimer's. I will definitely read it. The ones by Ann Davidson particularly interest me.

    Some of you recommended books under other topics. Please re-list them here. Whatever books you list, including all of the ones listed in the above message, I will add to the side topic - Books of Interest.

    Thank you crstrob.

    joang
  1.  
    In 1993, when I began this journey w/my husband, I had no idea what I was getting into, no idea what he was going thru, no idea of what would come next or how to handle it. I was given the 36-hour day but found it a bit too pedantic and full of info I was not ready to use or understand. I wanted & needed quick simple answers to what was happening at the moment. When I got a computer I was able to research, which I did for hours on end. Eventually I wrote 'When the Doctor Says, Alzheimer's' the simple, direct, non-medical, non-technical book I wish I'd had. Later I wrote 'Alzheimer's Surgery: An Intimate Portrait' really about my husband from the first vague symptoms thru all ensuing stages. People are misled by the title, I should not have put 'Surgery' in it, but there it is. Still, it is very intimate and takes the reader thru all the problems and joys of caring for an AD spouse.

    For those of you in No. Cal., I write a monthly column "All About Alzheimer's" for Today's Senior magazine that is available throughout the area. An upcoming column in a few months will be about AD myths, it is so misunderstood. There is certainly a wealth of info today that was not available when I started, but I think so many people are still stunned by the diagnosis and don't know what to do. They turn on the computer and find hundreds of sites & don't know where to go. They don't know what books to buy, what docs to see, what tests, what meds. So, yes, for the reader, all these books have a place. Many of them are listed in my first book. My web site is www.geocities.com/caregiving4alz. There is some basic info there and readers are welcome to print out anything of interest to put on the fridge, share with those who don't understand, or put in a file.
  2.  
    Bettyhere:

    I agree with you on the 36 hour day. It reads like a dictionary and I can only read so much of it at a time.

    AD myths would be a great topic. I can't tell you how many people asked "you mean your husband can't work because he has AD?" or "can they die if they have AD?". This week my sisterinlaw sent me an email with info on Chelation which she believes will help her brothers AD. My husband's own family still fails to realize that for us the causes are genetic and not envormental.
    • CommentAuthorbarbarakay
    • CommentTimeOct 25th 2007
     
    I have the list of books I have listen to on my MP3 player. I can do more things at once.
    "Dancing with Rose" by Lauren Kessler
    "My Father's Secret War" by Lucinda Franks, novel?
    "All over Creation" by Ruth Ozeki, novel
    "The Story of My Father" by Sue Miller, novel ?
    "The Long Goodbye" by Patti Davis (President Regan)

    I will inventory my books soon.

    Barbarakay
    • CommentAuthorPatB
    • CommentTimeMay 19th 2008
     
    I just read a great book. Not sure where I got the suggestion. Probably from a link to a link to a link. It is called "The Selfish Pig's Guide to Caring" by Hugh Marriott.

    It is a very easy read, but very informative. Lots of humor. Great explanation of burnout. It is not specific to Alzheimer's disease but very applicable. A book that discusses sex, murder, and family/friends who just don't get it.

    I highly recommend it.

    PatB
  3.  
    I can add 3 books that describe one person's experience dealing with Alzheimer's in a spouse:

    Elegy for Iris by John Bayley
    A Promise Kept by Robertson McQuilkin
    Day is Ending by Richard W. Zalar, M.D.

    Also, no one mentioned Learning to Speak Alzheimer's by Joanne Koenig Costa (unless it was in Joan's list)
    •  
      CommentAuthorStarling*
    • CommentTimeMay 19th 2008
     
    My first book is the one by the coach that the Alzheimer's Society give out free. I passed it on so I can't tell you the exact title. It is short, blunt and honest. It was the first place where I learned that dementia is a terminal disease and exactly what happens at the end of the journey. It was written by a football coach who's wife has died from
    AD.

    You can order it from their web page. They will give you up to 6 copies so it is a good book to pass on. Like I said, short and blunt and honest.
  4.  
    "Coach Broyles' Playbook for Alzheimer's Caregivers" is the name of the book. Frank Broyles was the Arkansas Razorback coach for many years. I have it at my desk at the office (along with "The 36 Hour Day" which I use as a reference book).
    •  
      CommentAuthorStarling*
    • CommentTimeMay 19th 2008
     
    Thank you Mary. I think it misses a lot of lists because it is given away free.
    • CommentAuthorkelly5000
    • CommentTimeMay 20th 2008
     
    I recommend "The Story of Forgetting" by Stefan Merrill Block. It's a fictional story of a family that carries an Alzheimers gene through generation after generation going back to the eighteenth century. Much of it is told from the perspective of a teenage boy whose mother has the disease, as he traces her family history while he copes with gradually losing his mother to the disease. I read it in less than a week, which is unusual for me. It was riveting.

    Kelly
    • CommentAuthorfrand*
    • CommentTimeMay 20th 2008
     
    I am so impressed that your all read as much as you do. I'm having a harder time concentrating these days.
    Has anyone read Final Exit? A friend who remembered seeing that on our bookshelf called to ask about it - EOAD. It was a book that belonged to my DH's deceased wife and I never read it. At the time I couldn't imagine wanting to know, but now I've picked up the book and read enough to know I want to finish it. Maybe this is a separate topic, but I'm sure I wouldn't want to die of AD. Oregon has 'death with dignity', but of course it doesn't work for AD.
    • CommentAuthorAdmin
    • CommentTimeMay 20th 2008
     
    Any books our readers recommend, I put on the front page of my website - you can click on them and purchase them through my Amazon Book store- Actually, you can purchase any book through my Amazon store (see left side of website). If you purchase them here, the proceeds go to help keep this site up and running. Thanks.

    joang
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 29th 2008
     
    Great information here. I am making a list and going to the library today.
    Just wondering if there is such a list for movies or TV programs that one could rent or purchase?
  5.  
    Frand,
    My husband bought Final Exit when we first started suspecting MCI/EOAD. He has always been adamant (sp?) about a person's right to choose how they "exit" this world. I read it. I have such mixed feelings about the whole subject. I believe as my husband does, but because we are talking about him, it is very frightening and sad. But, having said that, the idea of him going through what so many of your loved ones are going through, now that they are at the end stages, almost panics me...I don't want him to suffer like that. What a horrible thing for him to have to face, knowing that this is his future. How do I help him with that?

    He has just received a whole load of books on Alz. He got me "A Dignified Life...." and so far, it is great.
    • CommentAuthorfrand*
    • CommentTimeMay 29th 2008
     
    Kristy Holding Fast,
    I finished Final Exit and there is no way it applies to AD, unless the person is in a very early stage, since the ill person has to do everything. I'm glad I read the book, since some things I had heard would work are definitely not the thing to do. As much as I believe everyone has a right to do what feels ok to that person I just couldn't participate. Actually, I admire those who can. I wouldn't jump in when something like pneumonia sets in, but getting tubes and a plastic bag just isn't in my job description as a wife. It is terrible to have all of the final stages of AD to face, that is for sure.
    • CommentAuthorAdmin
    • CommentTimeJun 26th 2008
     
    Comment Author shoegirl CommentTime 29 minutes ago edit delete

    I just finished reading "Dancing With Rose, Finding Life in the Land of Alzheimer's" by Lauren Kessler. Not only was it insightful and unsentimental, it offered some different perspectives on how to wrap your head around AD. It is available on amazon.com. The book throws a bucket of light into the shadows of dealing with AD on a daily basis. Lord knows I will take whatever help I can get in coming to some terms with this. I have been looking for a way to not be sad all the time. For a way to say goodbye to my "old" husband and develop some sort of positive, loving relationship with this new person that I'm living with and taking care of. To find a kind, effective way to communicate with him and to understand (even just a little) what he is feeling and experiencing. This book helped!
    • CommentAuthorAdmin
    • CommentTimeJun 26th 2008
     
    Comment Author bluedaze CommentTime 18 minutes ago edit delete

    shoegirl-I read it on line and also thought it was great
    • CommentAuthorAdmin
    • CommentTimeJun 26th 2008
     
    Comment Author Admin CommentTime 0 seconds ago edit delete

    I just added the book to my book recommendations in the middle of the front page of the website. It can be purchased by clicking on its name. Thank you for the recommendation - I'm always looking for good books for our readers. I moved these comments to this existing topic - "Books"- just to avoid repetition of topics.

    joang
    • CommentAuthorSunshyne
    • CommentTimeJun 26th 2008 edited
     
    Speaking Our Minds by Lisa Snyder. This is a slim volume of interviews with AD patients who are aware of their problems and can tell us what's going on inside them, at different points in the disease. It helped me believe that it is possible to continue to have a loving relationship as my husband gets worse. (Granted, none of these individuals had developed the rage symptoms that is making life so impossible for so many of you.) It's also the first place I heard of "visual agnosia". A BIG ah-ha! moment.

    I agree with crstrob, Alzheimer's Early Stages by Daniel Kuhn is very good. I wouldn't say it was focused exclusively on the early stages -- it's useful for all stages -- and it wasn't nearly as distressing to read as The 36-Hour Day.
    • CommentAuthorJan K
    • CommentTimeJan 4th 2009
     
    I don’t know if this is the right place to list this book, because it has nothing in it about dementia. But maybe that’s why I liked it so much. It was a really nice break from dealing with dementia 24 hours a day.

    The book is The Right Words at the Right Time – Volume 2, edited by Marlo Thomas. It is a series of very short stories by different people, telling about how hearing the right words at the right time changed their lives. It is heart-warming, and since the stories are short, you can read a little or a lot, and not worry about losing track of a story like you might in a novel. Every time I sat down to read this book it made me feel better. That’s why I wanted to share it. Don’t we all need something to make us feel better once in a while?
    • CommentAuthorAdmin
    • CommentTimeJan 4th 2009 edited
     
    Yup, this is the right place to list all books. I just put up the links to both of Maro Thomas' volumes of that title. They are on the right side of the home page - www.thealzheimerspouse.com - right under the "Journey of the Souls" book links.

    joang
  6.  
    Comment on The Notebook--it was a huge tearjerker for me. I read it a good five years before my DH's diagnosis, but we always knew he might develop AD. Of course, I read it when I was recovering from surgery, and I've been told that some people become very emotional then.
    • CommentAuthordking*
    • CommentTimeJan 5th 2009
     
    "Coach Broyles' Playbook for Alzheimer's Caregivers" is must for men. It is available to download at http://www.alz.org/living_with_alzheimers_coach_broyles_playbook.asp
    •  
      CommentAuthorStarling*
    • CommentTimeJan 5th 2009
     
    That book is just plain a must. The Alzheimer's Association will send you a hard copy for free. It was the first place where I was told the hard truth, that my husband was dying, in a truly gentle and understanding way, by someone who had been there before. I passed a copy on to my son-in-law who is dealing not just with my husband, but with his own father who has also developed the disease and no longer lives in the US.
    • CommentAuthorSunshyne
    • CommentTimeJan 5th 2009
     
    Starling, you do have to pay shipping costs for the hard copy.
    • CommentAuthorfrand*
    • CommentTimeJan 5th 2009
     
    I actually haven't read this book, but saw a review. The Leisure Seeker is about a couple who both have medical issues - she has cancer and he has AD. Nevertheless, they take off in an RV and travel around. (Hopefully she did all the driving!) A comment from the book, "Now there's all the time in the world. Except I'm falling apart and John can barely remember his name. But that's all right. I remember it. Between the two of us, we are one whole person."
    • CommentAuthorAdmin
    • CommentTimeJan 5th 2009
     
    The Leisure Seeker looks really good - I put the link up on the right side of the home page - www.thealzheimerspouse.com. It's the first one under the Amazon Search link.

    joang
    •  
      CommentAuthorStarling*
    • CommentTimeJan 5th 2009 edited
     
    Actually I didn't pay for either of the copies. One I asked for and it arrived by itself. The second one was just put into the envelope with a bunch of info I'd asked for. The request for shipping money might be new however since they now provide an on line copy for free. (Referring to Coach Boyle's book)
    •  
      CommentAuthorCharlotte
    • CommentTimeFeb 13th 2009
     
    I just received my copy of 'The Leisure Seeker'. I hope to start it tonight. Am excited.
    • CommentAuthorMawzy*
    • CommentTimeFeb 14th 2009
     
    I'm reading Dewey. Great story. Vikki Myron did a good job writing it!
  7.  
    Mawzy glad you liked the book. Dewey looks just like my two red boys Dennis and Meeko. That very sweet kitten face.
    • CommentAuthorJan K
    • CommentTimeMay 11th 2009
     
    Last weekend I read “Elder Rage”, by Jacqueline Marcell. I still feel like I’ve been run over by a truck! Having said that, I think I would still recommend it. It really describes what it is like to live with “the ugly show”, and then have the person turn around and be perfectly pleasant and rational in front of other people. After a while, this makes you look like you are the one with the problem.

    The author’s situation was a lot different from my own, though, because after a while she had full-time paid caregivers, while she lived in a different town. In six years I’ve never had a day off. Fortunately in our case the ugly behavior left early on. But the irrational behavior seems to strike just about everybody. And that always waiting for the other shoe to drop sounded very, very familiar.

    Has anybody else read this book? What did you think of it?
    • CommentAuthorAdmin
    • CommentTimeMay 11th 2009 edited
     
    Jan K,

    I did Jacqueline's Internet radio show last year (home page - left side - radio interview archives), and I keep in touch with her. Although as you say, it was her father, and she had paid caregivers, she defintiely "gets it". I recommend the book too. I'll put a link up on the right side of the home page.

    joang
    • CommentAuthormaryd
    • CommentTimeMay 11th 2009
     
    I recently read "Still Alice". It was any easy read about what it is like for a woman with AD. I gave it to one daughter, who gave it to my other daughter. Now the second daughter's book club is going to read it. I was happy to hear that. The book did a good job from the woman's perspective. Her husband seemed not to get it, but their children did.
    • CommentAuthorStuntGirl
    • CommentTimeMay 12th 2009
     
    One book I recommend is titled, "The Impossible Will Take a Little while: A citizens Guide to Hope in a Time of Change"...edited by Paull Rogat Loeb. .......A quote from Parker K. Palmer in 'There is a Season" by Paul Rogat Loeb..." we must learn to 'winter through' inwardly, spirituallly, letting our inevetable failures become the seedbed for another cycle of planting new life, not the muck and mire of withdrawal and terminal defeat'.
    •  
      CommentAuthorCharlotte
    • CommentTimeAug 8th 2009
     
    Update: I read 'The Leisure Seeker' and he did all the driving. She does not know how to drive plus she is in the last stages of cancer. I found it a good adventure story, and could identify with his behavior from what many here on the site have posted. But the ending was a big surprise - a tearjerker. Easy reading because of the print.

    Read 'The Long Goodbye' by Patti Davis. It was not what I was expecting but I did enjoy the book. How ignorant they were of this disease. Two years after he announced he had it, due to his worsening condition, they thought it would be his last Christmas. He lasted 8 more years. The book says very little about his condition, but concentrates on her emotions, the toll it takes on Nancy, and the reconciliation of the family. President Reagan had 24 hour caregivers, so Nancy did not have that chore, so it was more like he was in a nursing home - she got to do what she wanted. I don't know of anyone here with that luxury of 24 hour in home caregivers.
    • CommentAuthorShanteuse
    • CommentTimeAug 8th 2009
     
    Well, how ignorant current medical science is about Alzheimer's, too. We haven't come all that far in treatments or knowledge of the disease mechanism. The greatest hope now is that something like the ketone/MCT/coconut oil research, and research in other areas, will come up with something that will help future generations. We don't even have that many good palliative medications, nor do a lot of doctors seem to have a good understanding of how to use them.
    • CommentAuthordeb42657
    • CommentTimeAug 10th 2009
     
    maryd, I read "Still Alice" also and I got a lot out of it. Even though it is fiction it is very accurate because she did so much research. My DH's daughter is in denial about his Vasular dementia. I gave her to the book when she came to visit. I don't know what she thought of it and I may never know. In the process I have learned that there is not much I can do if she doesn't get it. If she does that's good but if she doesn't that's OK too.
  8.  
    I just started Still Alice and I can't put it down. What helps is that it takes place in Boston and I recognise so many of the places and signs in the story. Must be painful read for those with EOAD
    • CommentAuthorJanet
    • CommentTimeAug 14th 2009
     
    I also read Still Alice and learned a lot from it. I just read the Long Goodbye, and I was disappointed by it. I expected it to be more about President Reagan and his struggle with the disease. Instead it was about Patti Davis and her thoughts about him. My disappointment was probably because of a mismatch between my expectations and what the book was actually like.
    •  
      CommentAuthorCharlotte
    • CommentTimeSep 8th 2009
     
    I just finished the book "Moments this Good - the Softer Side of Alzheimer's' by Bonnie Nester. I really enjoyed it. It was what I was expecting from 'the Long Goodbye'. It is the story of the author's mother's journey. It is full of the happy moments - little things that are precious. It does talk of the negative, ugly facts of the disease. Fortunately her mother did not get angry or rages but others in the AD unit did so she did witness it. She talks about 'sticky fingers' in the home and her mom's friend - a friend whose wife was very angry at the friendship/romance that developed. It reminded me a lot of my mother - signs none of us paid attention to until it was too late.

    My next book is a novel about a man who develops AD at 60. The title is: The Wilderness by Samantha Harvey. It is a 2009 release, so hopefully any info the author incorporates into the story will be up to date.
  9.  
    The 36-HOur Day" was recommended to me by DH's PCP. I found it very informative and only skimmed the parts that didn't concern us. I was impressed by how often the caregiver was told to find respite time for herself.
    • CommentAuthorAdmin
    • CommentTimeNov 14th 2009
     
    I read a lot of "escapism" books that have nothing to do with Alzheimer's Disease - usually romantic suspense. Every few months, I change directions and read what I call a "real" book. Yesterday, I started "Push" by Sapphire. That's the book the new movie, "Precious" is based on. I finished it today. Wow! It was incredible. It's definitely not for everyone - it's brutal in its portrayal of incestuous rape and physical abuse, but it is such a great story of resilience and hope. To any of us who have been teachers, it is a testament to the positive, life changing aspects of education. I highly recommend it to those of you who are interested and feel you can handle the raw brutality and language.

    I spent 25 years in a school system full of kids like Precious. I taught many of them.

    joang
    • CommentAuthoracvann
    • CommentTimeNov 17th 2009
     
    I've read "Still Alice" by Lisa Genova ... could have been my wife described in that book; hit very close to home and could only read 15-20 pages at a time ... and I've read Lisa Snyder's book, "Speaking Our Minds" which was also tough reading in those parts where 1st person accounts were paralleling my wife's experience. Both were excellent, but I've now decided not to read ANY more books on the topic; too depressing. I also don't want AD to be the focus of our lives. I say that , of course, knowing that it IS the focus of our lives, but I think you know what I mean. I don't want to dwell on AD; I want us to enjoy all the time my wife and I can still enjoy together for as long as we can. All that lies ahead will come in time.
  10.  
    acvann I think you are very wise. You know what lies ahead and are enjoying the present.
    •  
      CommentAuthorol don*
    • CommentTimeDec 5th 2009
     
    I have lots of paperback romantic novels that the LO used to read,seems she isn't much interested in them anymore but she does like the"find a word" puzzle books,anyone want them let me know I'll send them rather than throw in the trash
  11.  
    Old don...my dw also loves the find a word puzzles, but she does not need the book anymore.....she does it in her regular speech.......think of the money I am saving!
  12.  
    I'm reading Homer's Odyssey. It is a lovely book about a kitten blind by two weeks of age. As a cat lover I am really enjoying the book. It's a welcome break from reality.
    • CommentAuthorcarosi*
    • CommentTimeDec 5th 2009 edited
     
    ol don--you could take them to a used book outlet and recycle for somethings you'd like to read, or donate them. After I read books (I read a lot of them) they get recycled through the family and then some end up at the VA Home and some end up left in lounge areas at a local college.