Share your thoughts

If you have read Dignifying Dementia or attended one of Elizabeth’s presentations, please share your thoughts with everyone.

The comment box is at the bottom of this page.  Thank you!

31 thoughts on “Share your thoughts”

  1. Well done …very good book

  2. Diana Daschel said:

    I downloaded your book last night, and finished it this morning. There are passages so familiar I could have written them word for word.
    My husband just turned 60, and has had noticeable symptoms for nearly a decade. He was diagnosed with LBD in 2011. What a dreadful disease. It starts slowly and dulls the most important parts of its victim’s identity. Mike is now in the later stages- he rarely says anything that makes much sense, he is thin where he was once strong and muscular, he can not do anything without assistance. I am still able to do the work I love because one of my adult sons lives with us and helps care for his father. Still, there is little time to pursue my many interests. I steal a joy here or there, but nothing is nearly as much fun without being able to talk about it to Mike. The awful things are so much worse without him to tell me “everything always works out”, the phrase that used to irritate me with its optimism and now infuriates me because it is a lie. It will not work out.
    I have wonderful friends and family, but I parse out my dementia talk is small doses, so as not to overwhelm or chase away or frighten those still living normal lives. I cry a lot. I am sometimes less patient than I ought to be and guilt pierces me. While we are currently financially solvent, I worry about how easy it would be for that to change. I worry how I will cope when my beloved dies and I wonder how I will cope if he does not.
    And for every “I” written above, there is another person who can not make his feelings, his wishes, or his regrets known. After 35 years of marriage I feel fairly confident that I can guess, but can I? Is he the same man I have known since I was 19 years old? Or has dementia changed him as much as it has changed me?
    Thankfully again for your honest and insightful book. It helped me to feel a little less alone.

  3. Tammy said:

    My mother was diagnosed as dementia about a year ago so I have taken to reading what ever I can find on the subject, but your book by far is the best, tells it like it is….I have just begun the journey and have experienced meltdowns already, but you have been an inspiration for me to do what needs to be done, the part about anticipatory grief was right on……thanks for putting your story to paper…..you are one amazing lady and did Jim justice in the sacrifice you made to give him the best during the years he had left!

  4. Elizabeth said:

    Cynthia, I am so sorry that you have had to deal with this dreadful illness and terrible loss, and I am grateful that my book and experience served you in some way and that you took the time to share your thoughts. Know that my heart is with you.

    Elizabeth

  5. Cynthia Cardoza said:

    My husband of 49 years died at home from Lewy Body Disease three weeks ago. I purchased your book several years ago and it has been my constant companion and source of support throughout our struggle. I am an RN and was the CEO of a Visiting Nurse Association, hospice and adult day health program until his illness forced an early retirement. Having been both a provider and consumer of home care, I found your experience particularly enlightening.
    The caregiving journey has been isolating and lonely among other things, but you were my hero. I desperately wanted to keep my husband at home and despite hearing repeatedly that it couldn’t be done, I had your wonderful book to give me encouragement during the most difficult times. Thank you.

  6. Excellent book. Thank you for sharing so generously. I take your insights with me and know they will benefit my experiences. Thank you.

  7. Well done …very good book. Such a brave and strong person you are. God bless you.

  8. Opal Joy Brown said:

    Thank you so much for your book, it gave me courage and hope when I thought I was going mad trying to get help for my beloved Jacques.

    God bless you and everyone in this situation.

  9. I read your book in one evening. It was given to me by a friend, Lisa Grossman.I have been taking care of my 91 yr old Grandmother she was diagnosed with Lewy Body Dementia approx. 3-4 yrs ago. I too have found a few private care people and an adult day care that I can take her to for some respite for myself. Things haven’t gotten to out of hand thus far. I really enjoyed your story.

  10. Rosabelle said:

    Dear Elizabeth,

    I have just listened to your video comments. I will get the book . I am a nurse by profession, however you never know it all and it is a diffirent situation when it is someeone so close to you.
    I recently had my husband checked because I noticed behavioural changes and short -term memory loss. My suspiciouns were correct and he was diagnosed with AD.His memory loss made me take early retirement to care for him at home. Thus far things are going well as he is on treatment to slow down the progression .My boys and my sisters have been very supportive. But, it is early days. I am aware that this will become difficult as time goes on andI have no dought that your book will be of assistance to me.
    What I have noticed thus far is, that some people can be very insensitive , laugh and pass silly comments. I have chosen to tell my family and friends about my husbands condition and take him along with me where ever I go. Whoever has a problem with his condition well, that will be their problem. I refuse to make it mine.

    I admire you for being unselfish and sharing your experience
    .

  11. Mimi Turque said:

    I began reading your book last night after a long day of caring for my husband who has dementia. Of course just because the day was done doesn’t mean my husband’s needs were taken care of for the night. His needs, in some respects, were intensifying. I read your book for comfort between attending to my husbands needs and felt so close to you. When he banished me from our bed at two in
    the morning I rested on the couch in the living room and continued your book. Thank you for sharing your difficult journey. It is comforting to know that the sources of my fears, angers, and frustrations would make you feel those emotions, too. Also, as it seems to have been with you, my husband’s children don’t ever call him. He would love to hear their voices.Visits rare as that proverbial hen’s tooth. My husband was traumatized by a visit to the ER last month and responded like a POW. It seems the experience kicked him down a couple steps in the progress of the dementia. I haven’t come close to arranging for the full time care needed. The details of your journey are heartbreaking and though different in the externals so deeply familiar on the inside. Thank you for sharing as you did.

  12. Carolyn Thaxton said:

    Thank you for sharing your journey, and Jim’s journey, with all of us. My father is 88 years old, and was diagnosed with “dementia” – nothing more specific than that – in the fall of 2008. I wish I had known more about the disease at that time. My mother died in June of 2009, and we moved Dad into an assisted living facility because he could not live by himself, but he was not ready for a nursing home. After two years, his dementia is progressing. He moved in with my husband and I in our home just this past January. i am now his full time caregiver. It is so difficult to realize how much of his life he cannot remember. He was a civil engineer and surveyor, and a very intelligent man who read constantly, loved to travel and worked for over 20 years researching our family history. He now reads a little, and sometimes will do crossword puzzles, which he used to do on a regular basis. I am still somewhat in denial. I am angry. I don’t understand why this is happening to a man who never harmed a soul, was a wonderful husband and father and friend. I am reading everything on the subject that I can find, trying to learn so that I can better understand what he is going through. Doctors basically “go through the motions” because I really believe that they figure, at his age, he won’t be around much longer. I am always looking for ways to help him, but it is a frustrating process. Just as you did, I give him vitamins and make sure he eats well and has exercise, fresh air and sunshine. I want to make his life as comfortable and meaningful as I can. He suffers from the “sundowner’s syndrome” and some evenings are very trying. I feel so guilty when I lose my patience. I truly understand how you cried all the time. I am learning ways to keep him mentally engaged which helps. Your honesty and willingness to share the painful details of your experience are greatly appreciated. I don’t know how long my father will be with us, and I may experience many of the things that you went through with Jim, and I will be better prepared for having read your book. Thank you again.

  13. Love the “new” look of the website. It’s very well done, easy to read, and has lots of information!

    Looking forward to hearing about your upcoming trip to Ireland, Elizabeth! Sincerely, Susan

  14. Joanne Moore said:

    When I read your book I said “EXACTLY”. I am taking care of my birth mother and she would think I was betraying her with the story but I will tell it. I have my “Carrie” and to hell with memory care facilities and assisted living. My book will be “Good luck with That” and I’d say I have 2 years to go maybe more maybe less. I will give this woman I have known since I was 20 dignity and maybe nothing else in the end. Thanks for sharing your story.

  15. Elizabeth, [my mother’s middle name]
    I just finished reading your book and I’m so very grateful for your determination and unbeatable Love. I am equally grateful for the book you wrote and shared with Life!

    My mother was diagnosed with dementia a couple of years ago and she lives with my father, in Brasil. They are very happy – as I never seen them so happy before! Her memory is faulty but she still participates and remembers a lot of things.

    Reading your book was a long and very touching experience for not only the informative character of the details and narrative but also the example of your ‘tireless’ dedication on the preservation/rescue of your husband’s suchness.

    I enjoy every second of my parents and I video conversations, through the computer. I know now that her recognition will vanish at some point and having read your compact but detailed little big book advises me to keep that in mind.

    I cried, I laughted and my heart goes fully to you. Thank you for helping and raising, for many of us who read your work, our level of awareness and compassion. All the best!

  16. Maria del Carmen said:

    I have read your book on Kindle and found it both heart wrenching and informative. My dad has been diagnosed with LBD this past year. My mom and I have consolidated our resources and lives so that we together can care for him in my home. I am a full time practicing Family Physician with two young children and two dogs. We have such a close relationship with my folks, and this rather dramatic decline of my dad has been devastating to all of us. The blessing for him is that, despite his still brilliant surgeon’s mind, he is unable to see what is unfolding.

    Your book was a bit difficult to read objectively, because as a physician committed to body, mind and spirit of my patients, I felt you often broad brushed the medical community in a negative light. Swallowing my pride, I read on. I do agree that in our current medical model — with the worsening intrusion of government mandates — the sacred doctor-patient relationship has been damaged. And this has led many physicians to practice what I call “High tech. Low touch” medicine. I also believe that, were I not a physician, my dad would have been dead by last year because of the sloppy and breezy approach taken by the many specialists we sought evaluation from. Essentially I have become my dad’s “concierge physician” managing day to day problems and helping my mom to adjust our home to accommodate the rapid changes that LBD brings almost daily… We are sad, tired, grief stricken and at times feel abandoned by the medical community. I am thankful for my two young children who delight in their relationship with my dad, aware of his changes, but loving him all the same. We are at the beginning of this tough journey.

    What struck me most in your memoir was the absence of your daughter and Jim’s four children from the picture. I am sorry that you had to face this alone, but commend you for dedicating your life to your husband in the absence of extended family. There is no way my mom could do this without us siblings and grandchildren and our church communities.

    I will pray for your continued healing from your ordeal. Thank God you had so may wonderful years with your husband prior to his illness. No manner of grief can take way the love you had for one another.

  17. It does, indeed. Thanks for your prompt reply and your good wishes. Shari

  18. Elizabeth said:

    Shari, bravo to you for creating a non-profit organization, and I am sorry that you too had to live with this dreadful disease. My publisher would be more than happy to have you embed the video on your site; however, we would both feel better if you read the book before you do, lest you are uncomfortable with anything that I have written.

    Does that make sense? Again my best to you and your work. Elizabeth

  19. I was moved by the video presentation of you describing your husband’s decline, the challenges you faced, the many indifferent caregivers and medical practitioners you had to weed through to find someone with empathy, and your articulate rendering of the frustrations involved with all the above. I have not read your book yet, but I have many shared experiences in caring for my parents which prompted me to establish a non-profit organization in Israel called In Their Shoes. May I have your permission to embed your video on our website? Our website is available in both Hebrew and English and can be viewed at http://www.intheirshoes.org.il.

  20. Terri Westergren said:

    My husband has never been a doctor person. At 76, he recently had his first overnight stay at a hospital and it was traumatic for him. I suspected the beginnings of a cognitive disorder a few years ago. He refused to go to a doctor. I finally got him in to see a neurologist who gave him a verbal test, a prescription for Aricept, and a suggestion that he get a CAT scan. He took the pills but refused the CAT scan. Over time, symptoms got worse, but he was still in charge. He got urine frequency after about three months of Aricept, then refused to take it anymore. Agreed to try something new so called the doctor and he was prescribed Namenda. Finally agreed to a CAT scan several months ago. Doctor described the results as age-related brain shrinkage and said see you in a year. If it wasn’t for a dear friend who gave me your book, I wouldn’t know the half of it. After a short two nights in a hospital for dehydration and our experiencing severe adverse reaction to some meds they tried to give him, I started thinking perhaps he has the Lewy Body Dementia. Further research into dementia shows also that those symptoms could also be delirium from the dehydration. At any rate, over the last five years or so, I have been at my wits end, not knowing what to do or who to talk to. With my friend’s gesture, a bell or light went off that there are many books out there that will help me figure this out. Yours was the best start. Following up with our primary physician (who I did get him to start seeing, though on an irregular basis, a few years ago) we discussed seeing another neurologist. I won’t stop until I find someone who specializes in neurocognitive disorders and will address my concerns as well as my husband’s condition. So far, the only test he’s had is the CAT scan and I just know there is more that can be done in that regard to learn more about what we’re dealing with. Because of your book, I’m being so much more vigilant about any medications they try to give him. Only when he started seing my primary doctor several years ago was he ever on any medication. That’s Crestor. With the dementia, he was put on Aricept, then Namenda, then Celexa for depression. We have tapered off and are no longer taking the Celexa. He had severe adverse reactions (loss of reality, hallucinations, agitation, etc) to Benedryl and Ativan (for sleep) and Flaggyl (antibiotic) while in the hospital. We are just beginning this journey with the medical professionals, and he was in denial for the prior five years or so I was noticing congnitive changes. He has finally acknowledged he has a problem, is scared, feeling worthless, and so forth. I don’t know what the future holds but we will approach it with faith, hope, and determination, none of which would have been possible for me had I not started my educational journey with your book. Thank you.

  21. Dan Zittel said:

    A touching, moving and powerful video. Thank you for sharing it with the world.

  22. Michael Wheeler said:

    I started reading Elizabeth’s book on my blackberry–line by line–and could not put it down except for the drive home where I transferred to my ipad and read straight through. I laughed, even cried, learned a lot about a disease I knew little of and was inspired by a true love story. This truly is a “must read” for anyone. If dealing with dementia Elizabeth’s book will inform, and provide solice to you. It is written with wit, compassion, hindsight and foresight, and eloquence and simplicity. Dignifying Dementia is an important contribution to society and everyone, including the medical profession and services. Here is to Elizabeth for her courage and commitment during and after and for sharing this story and part of her life.

  23. Thank you for sharing your story in this wonderful book. I couldn’t put it down. My brother was diagnosed with LBD in September. He is 64 and a marathon runner. In the last 30 years he has run and finished in 170 marathons. Right now he can hardly walk. He knows that my mission right now is to find a cure for him. He is in a skilled nursing care facility and only up until recently was I able to stop crying. I know there are more tears, but for now I’m going to be strong. I have been giving him some Chinese Medicine (ganoderma lucidum) that has been around for 4,000 years that helps with dementia and the Parkinson’s like symptoms. I’m hoping this is the miracle I have been looking for. So far it seems to be helping. He is walking better and most days knows who I am instead of calling me Mommy! We are all here to help each other. It is so helpful to me to hear other people’s stories. Blessings to all who read this.

  24. Dignifying Dementia is like reading someones personal journal. The only difference is that this journal consists of one’s Heart, Mind and Soul…and the challenge is trying to decide which one you agree with at the various stages of their journey. This book is the Gold Standard for anyone brave enough to walk down the aisle and utter the words “in sickness and in health”. This book should be reprinted with the title Compassion for Dummies. And, finally, this book could and should be used as a manual for caregivers of anyone in need of care. If ET set out to Dignify Dementia and her Husband’s Final Years, she achieved that goal and much, much more.

  25. Elizabeth said:

    What I do know is that every experience, every victim, every family member, and every situation is different.

    Sadly what is a constant is the cruelty of these diseases. I can only hope that the book touches, educates or moves people in some way.

    Thank you.

  26. T. Litvak said:

    I watched your video this morning, and was touched by your compassionate approach to your husband’s journey. Thank you in advance for writing this book. I am headed to Barnes and Noble today.

  27. Elizabeth,
    What a gift, perhaps divine, to meet you this past Thanksgiving at the same restaurant where my parents and I spent the last Thanksgiving meal together before LBD robbed her, and us of that simple pleasure. We continued to enjoy the Village Inn’s delicious and thoughtfully prepared food for 5 more years, but in the comfort of their home at Lenox Heights until she passed away in January 2011. I have begun to read your book. My father may already be on the second pass. We both look forward to more connections with you and the broader LBD community. I will be in touch with the producer of The View regarding her thoughts on doing a show about LBD. Fond regards, Philip

  28. susan s darer said:

    To ET SHS1960 from SSD SHS 1956
    Just listened to your video comments and plan to get your book. Relate with the issues as going through similar with my husband who has Alz.. Managed until this year at home- now he is in assisted living specializing in Alz -aides wonderful as you describe a good aide- know when to re-approach a subject like shower, dressing etc. It is heartbreaking to see a loved one struggle with dementia…and as a caretaker try to evoke “memories” that connect in the moment via a photo .

  29. Dot Cooler said:

    ET Great book, I read it at one sitting and plan to read it again. Brings back such great memories

  30. IreneM said:

    I just lost my husband on November 10, 2011 after 5 years of a courageous battle against LBD … always victorious. I am sorry for all of the heartless doctors and aides you were both subjected to. In that aspect, I was lucky. We had an immediate diagnosis and except for one aide who left him reclining for 4 hours soaked in his urine, we were blessed with caring aides. I wish I had heard about your book before but I wish you success in helping those still fighting the fight.

  31. I downloaded and read the book over the weekend in New Hampshire. I laughed, I cried and it truly felt as if it became a part of me. A true love story where “to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish,; from this day forward until death do us part” had sincere meaning and weren’t words just being recited. “Between a rock and a hard place” was exactly where you (and Jim) were. I admire your perseverance and appreciate you sharing your story because every caregiver struggles with so much of the same feelings and dilemmas. This will be a tool for many to use in their own personal struggles while caring for a loved one and watching them succumb to a hideous disease/illness. I often said, with my Mom and her diabetes, that it was taking her one organ at a time. You are strong, brave and I admire you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s