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 BOOKS on DLB 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 107
Post BOOKS on DLB
I was excited to read about the new book on care giving out on DLB but was wondering if there are other books that folks feel are worth recommending. I am specifically interested in books for both the care giver and books for the patient. My mother would like to read a book on DLB, but I am not sure which books would be most appropriate for her. I saw that there were four books listed on Amazon that are specifically on DLB. What books do all of you like?

Liz


Sun Feb 12, 2012 1:25 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: BOOKS on DLB
The books I am most familiar with are:
the Whitworths' A Caregiver's Guide to LBD" (considered to be the Bible on LBD),

the Throop's Living with Lewy's: Empowering Today's Dementia Caregiver (also quite good with lots of detail),

Thomas Graboys' Life in the Balance (patient who is a doctor view of Parkinson's and LBD),

Dignifying Dementia (how caregiver wife keeps husband at home until the end),

and mine Treasures in the Darkness: Extending Early Stage LBD, Alz, Parkinson's (which focuses on how to handle early stage and extend it as long as possible).

There was another new one that came out very recently in the vein of Whitworths and Throops, but it was edited badly with lots of typos. I cannot remember its name.
Genie Burkeholder is supposed to be coming out soon with a book of essays and poems about LBD, I think. She writes eloquently and I look forward to reading that one.

Problem is that there is very little out there to read. I wish more folks would write books about LBD and get the word out. There are a couple of folks on this forum who could really add to the conversation based on what I have seen them write here. One focuses a lot on current research and gathers articles for us all to read, which is very helpful. The other has a husband who has been in early stage for about eight years and writes eloquently and compassionately. Can anyone guess who I am talking about?

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri May 25, 2012 4:03 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 107
Post Re: BOOKS on DLB
Thank you Pat. I am going to order some books! Yes - there are a few folks on this list that need to write some books! I have already learned so much from them and it has made a huge difference in my mother's care and how I relate to my mother given that she has this disease. Sometimes, though, I just feel so sad for her (and for us). How do I make her pain go away? How do I give her back a life? What about all those plans to travel and write novels after she retired? She has been robbed and it doesn't matter how many times I try to make her feel more positive about the possibility that things might improve - they aren't. I can only hope that things will improve for future generations of people that suffer from this disease.

Liz


Fri May 25, 2012 8:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: BOOKS on DLB
I'm reading Creating Moments of Joy by Jolene Brackey now. It is for caregivers of persons with Alzheimer's. Much of it is not specifically applicable to my situation or to LBD. For example, I may never deal with the situation where my husband doesn't know who I am. His cognitive level does not appear to be progressing backwards on a steady path from adulthood to infancy. Alzheimer's is not LBD. But the book is so well written and the author's attitude is so broadly applicable to any form of dementia that I am finding it very valuable.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri May 25, 2012 9:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: BOOKS on DLB
I bought and read Jolene Brackey's book after having a conversation with her on the phone a few years ago in which she told me she had just had a book published on dealing with dementia. Many of her ideas worked for us and some did not. It was also clear, in reading the book, that she had never taken care of a LO with dementia 24/7. And, since, in Lewy, memory is not the issue so much as hallucinations, paranoia and delusions as well as physical issues, it did seem more geared toward AD.

Even so, any little tidbits that can bring even ONE moment of joy to our LO is worth the book. I think I loaned it out to someone or I'd be happy to send it on.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri May 25, 2012 9:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: BOOKS on DLB
Yes, the book specifically mentions AD frequently. It doesn't claim to be all things to all people.

It would really be great if she brought her attitude to deal with LBD patients. Maybe her creativity could come up with ways to bring joy to delusions!

Also her book is geared mostly to care center situations. Many ideas do not translate well to home settings.

Still, her approach is very refreshing, and if you read it for attitude rather than specific things to do, it is very positive.

Additionally, I'm finding it interesting because reading it helps me realize just what the differences are between Lewy and AD. Yes, Coy has some memory loss, but no where near the degree that is constantly portrayed in this book. I certainly couldn't promise something to Coy knowing full well I wasn't going to do it and expect to get by with it because he'd forget the promise anyway. No way! Maybe some day ...

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri May 25, 2012 10:40 pm
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Joined: Mon Oct 31, 2011 10:44 am
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Post Re: BOOKS on DLB
I am reading a book by Pauline Boss called Loving Someone Who Has Dementia - How to Find Hope While Coping with Stress and Grief. It's been helpful for me as the caregiver. She also wrote "Ambiguous Loss", which I have not read.

Lisa

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Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.


Sat May 26, 2012 7:21 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: BOOKS on DLB
"The 36 Hour Day" is a great book for caregivers -- whatever the dementia type.


Sat May 26, 2012 4:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: BOOKS on DLB
Oh, and there's the one with the religious title on LBD. Something like "Thou He Slay Me." mockturtle will know the name. I know an LBD caregiver who read the book to her husband with LBD, and both got a lot out of it. There is a copy now circulating among our local support group. I was told that you don't have to be religious to get something out of the book.


Sat May 26, 2012 4:41 pm
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Joined: Tue Apr 24, 2012 5:00 pm
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Location: Fayetteville, NC
Post Re: BOOKS on DLB
I just finished reading it. Yep, it's "Though He Slay Me" by Anne Hartman. It's journal entries and has a religious vein, but in a very truth of life way. I got a lot out of it, chronicled her life over time in a frank way about how his progressing LBD affected them and what they experienced, not to be pitied, but just letting you know their journey. Extremely worthwhile.


Sat May 26, 2012 8:49 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: BOOKS on DLB
I really like the book Lisa is reading, Loving Someone Who Has Dementia. I've referred back to it several times already. It is not about LBD specifically but it is right on target about dealing with "ambigous loss" -- the "I'm married but I don't have a partner" or "Dad's here but he's not here," situations. And by the way the author, Pauline Boss, finds that internet communities can be very helpful support systems for caregivers. We already know that, don't we?

For those whose loved one had/has RBD, the book Sleep, The Mysteries, the Problems, and the Solutions by Carlos H. Schenck is informative and very interesting reading. I bought it to read about Coy's RBD, and then the sections on sleep apnea and delayed sleep phase disorder became applicable for me! The entire book is just plain interesting.

I haven't come across a good book for persons who have LBD. I would be interested in any experience people have along those lines.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat May 26, 2012 9:09 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: BOOKS on DLB
Yesterday I read Ginnie Horst Burkholder's book titled Relentless Goodbye. I couldn't put it down. Ginnie put into words my feelings and experiences as I helped my dad care for my mom with LBD. I only wish it had come out a year ago since Mom died one month ago today. Still, I found it very helpful in dealing with the ongoing grief, faith issues, and the plethora of conflicting emotions I've been wading through. I can't wait to share it with my dad.


Sun Jul 15, 2012 9:13 pm
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Joined: Tue Apr 24, 2012 5:00 pm
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Location: Fayetteville, NC
Post Re: BOOKS on DLB
Ginnie's book touched me a great deal and yes, so many times I saw our life in her book. I am sharing it with as many of my family members as I can.


Mon Jul 16, 2012 6:15 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: BOOKS on DLB
I still like and found very valuable Delaune Pollard's Caregivers: Drowning in a Sea of Cognitive Challenge. I very much recommend it. But I would start with The 36 Hour Day. It's really the primer and will get you started on the right track. Then go to the Pollard book.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 16, 2012 10:57 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 107
Post Re: BOOKS on DLB
Thank you everyone! I am so happy to have some really good suggestions. My sister is going nuts (my mother was living near me and then she got kicked out the assisted living facility that she was in here) so my mom is going to be moving back near me soon. These books will be very useful.

Liz


Mon Jul 30, 2012 5:11 pm
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