Book Review: A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth and James Whitworth

Not long after Mom was diagnosed and I realized I had absolutely no true information on LBD I began a search.  I was all over the web, and then I realized there was Amazon.  I typed in "Lewy Body Dementia" and suddenly there were books!  I must admit I was excited.  I chose the ones that made sense, and "A Caregiver's Guide to Lewy Body Dementia" did just that.  

I opened my kindle and began to sweep through the pages.  I relished the advice they gave and read through all the anecdotes of people who had shared their journeys with them.   There was also advice that I could follow.  I eagerly ate it all up digesting it and then going back in for more.  It was the most helpful source I had encountered and I was feeling blessed!  

I have had the opportunity to re-read the book more than once.  Each time I learn something more. 

I have also gone back to the book as a resource for some issues.  What I'm discovering, though at this point in our journey, is that not everything I want to have answered is in there.  It is quite comprehensive, though, and as a primer it does suffice.  It gave me more confidence and much more to consider as I work with Mom.  However, striving further and learning more in the process I find it comes a little short.  You must also realize I am not patient when it comes to finding answers....

The book begins by defining LBD and then takes you on the journey of experiences and progressions of the disease.  These are highlighted by stories and advice which bring the disease away from a clinical read.  

They discuss working with coping skills when the patient has issues common with LBD, finding a medical team, medications, legal and financial issues, dealing with end-of-life, and how to take care of yourself in the process.  You see, it's very comprehensive without being a difficult read.  It's all there.

For anyone who has any questions about Lewy Body Dementia, knows someone, cares for someone, or even suffers from the disease, this is invaluable.  You must read this as your door to the disease.  From there, there are other books which support the couple who have gone on to write even more books on the disease, which will be reviewed at a later time.  

Even though I require more information at this time, it is because of the Whitworths' book that I understand what I want to know.  It will, hopefully, be the same engine that propels you into finding out more and learning on your journey. 

A Caregiver's Guide to Lewy Body Dementia.  Whitworth, Helen Buell and James.  Demons Medical.  New York. 2011.

Available at:

Amazon                                        Powell's City of Books          Barnes & Noble

and most book retailers and libraries.  

Book Review: Going Gentle Into That Good Night by Sandra Ross

After exploring and appreciating Ms. Ross’ blog and website, Going Gentle Into That Good Night,  I discovered she had written not one, but two books on Lewy Body Dementia.  One is a sort of primer that will be reviewed later, and the other is her account of caregiving for her mother who was afflicted with LBD.  

Her account details the struggles of keeping her mother at home while attempting to understand the disease.  There is a bond between them that is very sweet, and it is strained at times, but she manages to maintain an environment of comfort and joy for her mother.  

She discusses her mother having experienced TIA’s, which are never defined.  TIA’s are Transient Ischemic Attacks which are events, sometimes called a mini-stroke with symptoms lasting less than 24 hours.  This is something many dementia patients face, I discovered in further reading, and it would have been a kindness to have had a definition so I wasn’t struggling to find the meaning on my own.  

That aside, I found myself admiring the courage of Ms. Ross, and also her relationship with her mother.  She has profound strength!  This meant finding the right doctors, firing the ones who didn’t meet the needs at the time, and ensuring the plans were on target for her mother’s care.  

I understood this dilemma of finding the right doctors.  I understood the struggle for finding out what was truly happening.  I also empathized with the guilt associated in dealing with one who used to be so vital becoming so helpless and a shell of what they used to be.  

I know I would not be able to accomplish what Ms. Ross did.  I could not have kept my mother at home.  This was another element at which I marveled.  Her mother contrasts mine.  Mine would need to be watched constantly, and she would be making demands on a continual basis.  I haven’t the source of income that the author seems to have and must work to survive, and my mental health would be in question in no time (my mother is no saintly woman!).  

I also understand Ms. Ross’ philosophy - that your parents sacrificed for you while you were young, so should you for their sake.  I believe that as well.  However, from my viewpoint (which does differ from hers) my mother is better off with others, and surrounded by others to keep her safe, stimulated, and healthy, rather than be kept at home where there isn’t anyone else there for her but myself and the occasional care-worker.   It’s a conundrum, for sure.

Through the experiences of Lewy Body Dementia, TIA’s and Vascular Dementia, Alzheimer’s and Congestive Heart Failure, the author learns a great deal and imparts her learning to the reader.

This is a very good book to read for those who are experiencing many of the same questions and issues, as well as those who have an interest as to what caregiving truly entails.  

The title of her book and website does come from the Dylan Thomas poem, which has always been one of my favorites, but it plays on the opposite meaning - which is appropriate in this case.  I have provided the poem for your reading, below:

Do not go gentle into that good night

Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

From The Poems of Dylan Thomas, published by New Directions. Copyright © 1952, 1953 Dylan Thomas.

Going Gentle Into That Good Night - Sandra Ross.  Amazon Digital Services. 2013.

This title is available in both Kindle and Paperback.  

Available at:

Amazon.com