Friday, 3 April 2020

Dancing with Dementia - by Jemi Fraser

I think that dementia is one of the cruelest of illnesses.  It takes away the person you knew and loved and by the end leaves little more than a shell behind.

I am terrified by it.  My own chronic illness will make me prone to developing it, and my mother's alcohol abuse put her steps firmly on that path.  Doctors told us how lucky we/she were because she 'started from a high base' but the losses were huge and heartrending.

It is also a sneaky beast and makes its way by stealth.

Which was sadly true for Jemi Fraser and her family.  Clues were missed and the disease had a firm foothold before they realised.

So she wrote a book.

This book.






Isn't that a wonderful title?

The book follows their journey.  They so often learnt the hard way, and this book is designed to help other families on the same challenging route. 

There is love in it.  There is laughter.  There are tears and sorrow.  Their love for their mother is so very evident, and I am beyond impressed that as well as ensuring her safety they worked hard (and continue to work) to ensure that joy is still a big part of Lizzie's life.  That focus was missing in my journey with my mother, which fills me with shame. 

Reading it I wept.  I laughed in rueful recognition.  And how I wish I had thought of some of the strategies they tried.

Sadly dementia is likely to put its ugly stamp on many of our lives. 

Jemi's book was released this week, and I hope that it makes that journey less challenging, and less isolating for many, many people.  

You can buy this hopeful, helpful, inspiring book here.


Amazon.com              Amazon.ca          Apple Books       Barnes & Noble          Kobo

 


146 comments:

  1. Congrats to Jemi's new book! Stay safe out there! :)

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    1. Thanks, David! Hope you and yours are staying safe as well!

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    2. David Powers King: Welcome and thank you. I love the support Jemi's important book is receiving in the blogosphere.

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  2. I have accepted that some disease will get me, but my great fear is that it will be dementia. Forgetfulness is common in older people, and I always wonder when I have lost something or even a word, that I may be in some stage of Alzheimer’s. My dad started showing signs as he approached 90 but my mom was fine until at 85 her kidneys started to deteriorate and robbed her of her dignity. I have a way to go before I reach their ages but the fear is always there when I have a senior moment. Life is a difficult journey.

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    1. I totally agree! Every time I forget what day it is, the fear rises! I'm sorry you had to go through that with your parents - it's such a difficult journey. Sending hugs to you!!

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    2. Starting Over, Accepting Changes - Maybe: Sadly I agree with you too. I panic when I have memory slips (which makes the missing information even harder to find).

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  3. Dear EC
    My Dad died from Alzheimer's, but he was still just about like 'Dad' so we were lucky in a way. I agree, it is such a cruel disease. Any help and support is always welcomed.
    I hope the book does well.
    Best wishes
    Ellie

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    1. Thanks so much, Ellie! The forms of Dementia are varied and every person appears to react in their own unique way! I'm glad Mom continues to have her sense of humour and her love of music. Those help!

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    2. Ellie Foster: Help and support is so very welcome. I am glad that your father retained his self till the end. Hugs.

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  4. A hideous disease that robs us of ourselves. Any information and advice on the subject is welcome as we approach those dangerous years.

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    1. Yes - it truly is a hideous disease! We hope the things we've learned can help others!

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    2. only slightly confused: The MOST hideous disease. I am sorry that Jemi's book is so very necessary for too many of us.

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  5. E.C., this is indeed a terrible disease that I think I fear more than any other. Having cared for a loved one with it for several years and having another loved one I believe is in the early stages but test (such as they are) says no, I so wish this book had been around when I first came in contact with the disease. It's a wonderful and inspiring story. I too cried and laughed as I read the book.

    On a side note, I hope you don't mind I added a link to your post on Jemi's tour calendar.

    Be well and stay safe, my friend.

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    1. So few of us are untouched by this disease! Scary and heart-breaking!

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    2. Mason Canyon: Of course I don't mind. Thank you. There were a heap of tears when I read Jemi's book and that reminiscent laughter was so very welcome. I am so sorry that you have also known the scourge.

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  6. It is terrible and I'm sorry you've had to deal with it. Jemi's book will help so many.

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    1. Alex J. Cavanaugh: Too many of us have to face it. And I agree wholeheartedly about Jemi's book.

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  7. I haven't had much contact with dementia, but I do have a brother-in-law now, with symptoms, as yet relatively mild, but definitely noticeable. It is a very cruel disease indeed. Reason enough for euthanasia in extreme cases, it seems to me.

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    1. Agreed! In Canada, some people are working to put in a law that a person can decide (BEFORE they are afflicted by the disease), that if things reach a certain point, doctor-assisted death can occur. We'll see if that can get into law!

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    2. David M. Gascoigne: I agree wholeheartedly, but that is a very tricky area. The person has to decide well before there are any signs of dementia and an agreed 'end' point has to be mapped out. I fear that too many of the opponents of euthanasia would see it as 'killing the vulnerable'. I so hope that there is a suitable law in place so I can sign up.

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    3. I agree with both of these comments and I am sure that ethicists are devoting a lot of time to just such issues. I am quite happy not to be one of them.

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  8. Thanks so very, very much Sue. I know you have some painful memories associated with the topic and I'm beyond thankful for your support with my story. Sending you all the hugs!!!

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    1. Jemi Fraser: I wish so much that when I was confronted with it a resource like your book had been available. When/if dementia claims me I fervently hope that there is a heap of support for my carers.

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  9. Such sadness and hardships life deals us; and so often unexpectedly...and suddenly.

    And too often we're not ready or prepared for the battle.

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    1. Exactly! We were most definitely not prepared - and I'm hoping our journey can help others!

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    2. Lee: No arguments from me at all. Yay Jemi.

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  10. My grandma had dementia after a stroke, so I know how sad that can be.

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    1. It is! We're lucky Mom retains her sense of humour even when she is having a hard time.

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    2. Mary Kirkland: It is heartbreaking isn't it?

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  11. This sounds like such a wonderful necessary read.
    Stay safe. Stay healthy.

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    1. Thanks, Sandra! I hope it can help those just starting on the journey!
      Stay safe, too!

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    2. Sandra: How I wish it wasn't necessary. But it is, for too many of us the world over.

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  12. Thank you for sharing this post. Having had two friends who succumbed to this terrible disease, and possibly a third friend at the beginning, it is a great worry and sorrow for those whose families have dealt with this. Thank you for the link also.

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    1. I'm so sorry you've had to go through this - this disease is indeed terrible!

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    2. DeniseinVA: I am so very sorry that you have also known this pain.

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  13. I just went and ordered for my Kindle (which needs to be charged before I can download the book). Thank you so much for the recommendation. And I look forward to reading it. :-)

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    1. Thank you so much DJan! I hope you find it helpful!

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    2. DJan: Thank you. And I hope you never, ever need the information Jemi has given us.

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  14. No experience of it at all in my family, and I hope it stays that way. I'll have a look at the book for my Kindle.

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    1. I hope that good fortune continues for you and your family, Andrew! wishing you all the best!

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    2. Andrew: I am so very glad for you. Long may it continue.

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  15. This is one i will certainly save up and look for, with prayers that it we will find a cure and it someday won't be needed.

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    1. That would be amazing!!! I know there are researchers working all the time on this and I wish them all the very best!

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    2. messymimi: A cure would be wonderful wouldn't it? A cure for ALL of the different kinds of dementia.

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  16. Such a helpful book that will be for those who might need it. I'm hoping dementia passes me by, probably I'm not at risk because neither of my parents had it, but if it does happen, who will know? There is only me here and I certainly wouldn't recognise any of the clues.

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    1. River: I hope it passes you by too. I wish it would pass everyone by.

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    2. I hope it bypasses you as well! I don't know if anyone of us is capable of recognizing it in ourselves. it's a tough one. I hope you continue to stay safe!!

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  17. None of my family have had dementia but then many died quite young. I hope I don't need the book but it sounds like a great resource. I hope it sells well

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    1. kylie: I hope and believe that as word gets out Jemi's book DOES sell well. It offers a resource too many of us need.

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    2. Thanks so much, Kylie! I hope you and your family continue to be free of this disease! Stay safe!!

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  18. This looks like a very helpful resource. I've watched a number of Jemi's videos and already learned some things. My mom is not as far along as many others but the tips will help just the same. Thank you, Jemi, for sharing your knowledge, and thank you, EC, for pointing the way to this book.

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    1. jenny_o: I am so glad that you have already benefited from Jemi's hard earned experience. Hugs.

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    2. Thanks for checking out the videos, Jenny! I'm so glad you found some tips to help you out. Wishing you and your mom all the best!

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  19. It's a sad disease to get and to talk to someone getting it or having it. This I've done in my work years ago for a short time. What I found ever so hard was when no one came to visit the patient because they the patient didn't know their relatives or friends. Even when visitors did come the patient said they hadn't been...so sad.

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    1. Margaret D: Heartbreakingly sad - for the patient and for those that love them.

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    2. Margaret - my heart hurst for those people! I know Mom will always have us visit - whether she knows us or not. We know her. And hopefully we can always keep her content!

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  20. My group have just completed the 12 week course on Prevention fo Alzheimer's which was very interesting, enlightening and challenging so thanks for letting us know about this new book. I will pass this information on to them. Stay Safe and have a lovely weekend.

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    1. Margaret Birding For Pleasure: Thank you for passing the word on. I hope Jemi's experience and work does benefit your group. And many other people the world over.

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    2. Thank you so much, Margaret! The journey is different for everyone, but there are enough similarities that I hope the book should be able to help many!

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  21. Hi EC - wonderful for acknowledging Jemi's book on the subject of dementia ... with your personal knowledge about the disease ... so sad - all the best to Jemi and thank you for your appreciative review of Dancing with Dementia. Take care - Hilary

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    1. Hilary Melton-Butcher: Hasn't it been wonderful to see Jemi's book featured so widely in the blogosphere this week?
      I hope you too are taking care and staying safe and healthy.

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    2. Thanks Hilary! This disease can have so many negative repercussions for families - it's devastating!

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  22. A book that contains inspiration and about old age ..., hopefully this book will someday circulate in my country.

    Regards

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    1. Himawan Sant: Welcome and thank you. I hope this book can circulate the world over.

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    2. I believe the book is available on all Amazon outlets, but I'm not sure how many countries that covers. What country are you in?

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  23. it is a very interesting book. Love from Katowice

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    1. Gosia: It is a fascinating (and sadly necessary book). I hope you are coping with the lockdown and able to get out with your dog each day.

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    2. Thank you Gosia - hope you and yours are staying safe!

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    1. Beyda'nin Kitapligi: Thank you. I really hope that Jemi DOES get lots of readers and sales.

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    2. Thanks for the translation assist, EC! Thank you Beyda'nin for the support!

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  25. i cried while reading this dear EC as you did while reading book
    i share your shame for not being much understanding what was my own mother going through

    this is daring and kind to share their story with others ,must be inspirational read!
    blessings!

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    1. baili: Jemi's book is indeed inspirational. She doesn't sugar coat it - and it is obvious that it is still sometimes very, very hard for her and her family, but I love the strategies she has shared.
      I suspect that you, like me, did your best - and grieved because you could not do more.

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    2. Thank you so much, baili. I don't think there's shame to be had. We all do the best we can at the time - and that is enough. Sending hugs your way!

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  26. I am Dancing with Dementia myself so I will certainly look out for this book. Funnily enough I am reading a book called Dancing with Elephants, the elephants being illness.

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    1. Jo: I know that you are all too familiar with this dance. I hope that Jemi's book is helpful. Dancing with Elephants? Given the elephant in my room I will have to track that one down. Thank you.

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    2. It's a difficult dance, isn't it, Jo? I'm sorry you've had to learn the steps as well. Dancing With Elephants sounds intriguing!

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    3. Yes it was written with a man who has Hodgkins Disease and knows his daughters are likely to get hit because his mother did and several other relatives. I haven't got far, but it says on the blurb that it deals with dementia as well.

      Yes, it is a difficult dance Jemi. Through the Alzheimer Society I met a few others in the same situation (a spouse) and we were meeting for coffee for a while until this virus reared its ugly head.

      I look forward to reading your book.

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    1. Giancarlo: Thank you - and to you. It is early morning here and we have much needed rain falling.

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  28. Oh I will HAVE to read this book, Sue.
    As you know, I always had a difficult relationship with my mother...then, when she developed dementia towards the end of her life, it became even more strained.
    Whenever I am forgetful now (which is a pretty frequent occurrence), I do wonder...😕
    Oh thank you so much for recommending this book...and, yes, a great title. So positive!😊😊

    Have a wonderful day!

    Love and hugs ❤❤❤❤❤❤❤

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    1. Ygraine: I hear you on the worrying every time I forget things - and when I find new things hard to comprehend. It is an awful feeling isn't it?
      I hope you get as much as I did from Jemi's book - despite it dancing on rather a lot of my buttons.
      Stay well, stay safe.

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    2. Ygraine - I join you both in that worry! It's worrying enough with the effects of regular aging, but wondering about dementia creeping in only adds to it!

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  29. I cared for my mother and mother-in-law for 6 years at home. Both had dementia (Alzheimer's). I wish I'd has such a book. I fear for myself now, so I should probably gift it to my daughter.
    I thank Jedi for writing this book. Congratulations on its publication!

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    1. Myrna R: I don't think I could have cared for my mother at home. I applaud you, and have some understanding of just how hard it must have been. I believe that Jemi's book will offer support and help to people the world over.
      Stay well, stay safe.

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    2. Thanks so much, Myrna. I'm so sorry you've had to deal with this horrid disease twice!! I hope that is all for you and your family!

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  30. I just finished a novel called Elizabeth Is Missing by Emma Healey which I found very insightful though a work of fiction.

    I will look for Dancing with Dementia too.

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    1. Marie Smith: I have read that book too - and agree. I hope you do find Jemi's book - and know that if you do you will benefit.

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    2. Thank you Marie Smith. I haven't heard of Elizabeth is Missing, but I'll check into that one!

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  31. A lovely review! Congratulations Jemi!

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    1. Yolanda Renee: Thank you. And yes, huge congratulations to Jemi.

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  32. It's tough on folks to care for family members with dementia. There are so few decent care homes. At least here. Anyhow, I misted thinking of your regrets with your mom. I had many regrets, wishing I could have wrenched her away from "that man".

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    1. Strayer: It is very tough. Here too, care homes are very variable. I feel for your regrets - and am sure that you did as much as you could. And no-one can ask for more. Hugs.

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    2. Strayer - regrets do haunt us, don't they! We so very lucky that are care homes are wonderful and well-staffed. I wish that was universal!

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  33. NNice article. My mother is a dementia. Maybe I have to read this book.

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    1. Justcherry: I hope you can read it - and hope even more that it helps. Welcome and thank you.

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    2. Thank you, Justcherry. I hope my book can help some people as dementia is a devastating disease.

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  34. I can't imagine you needing to feel shame ... we all do the best we can with what we know or have learned. It isn't until recent years that finding strategies (other than a friendly nursing home) for dementia was even given a thought. I will get this book because I want my poor son to read it before he has to deal with me when I reach that point, Ha! But, I feel shame ... every week you stop in and have something nice to say to me and then when I come over here (on the few occasions I do that), I see how many people follow you and that you have nice things to say to all of them and I wonder how you have time to bother with my little etchings especially since I am so remis. Thank you my dear friend ... I have always hoped we would meet some day as Australia has been on my bucket list for years, but each year seems to pass and here I am still in the US with an idiot for a president and being locked down in my house by the virus that our president has not a clue what to do with ... Oh my. Well, just wanted to stop in and say thank you for being there and for being the bright light that you always are. Hopefully I will survive this rampage, though if you follow the news over here I have to wonder if I will. Stay safe, stay home, sanitize, sanitize, sanitize, wash hands and horde toilet paper ... Hope to see you again next week ... so far so good :)

    Andrea @ From the Sol

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    1. Andrea @ From the Sol: I am glad that for the moment you are free of the dreadful virus. I hope that you and yours can continue to escape.
      I DO get a lot of comments - and welcome them. As I do yours. And I love and admire your art.
      I hope you do get Jemi's book - and that you and your son benefit. I also hope that neither you nor your family ever need it.

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    2. Andrea - I agree - there is no shame. Doing our best is always enough. I hope this disease does not attack your family any further and that you stay safe from the virus. Best wishes!

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  35. My mom was diagnosed with Alzheimer's in her 90's. Probably had it longer as it would explain a lot. But it is an insidious disease. My mom, her sister, and my dad's sister all had it - which makes me wonder. I did read "Losing My Mind" by Thomas DeBaggio as well as "Still Alice". But I will check out "Dancing with Dementia".

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    1. Rian: It is indeed insidious and dreadful. I feel for you with it stomping its way through your family. I have read Still Alice - which made me weep, and will have to track down 'Losing my Mind'. Stay well, stay safe.

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    2. Rian - I agree - insidious is the perfect word for it!! There is so much sadness attached to this disease - not only in how it affects the person, but how it affects everyone around them!

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  36. Un sereno fine settimana per te.

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  37. Sorry you went through that. A very good friend of mine was diagnosed at a very young age 55 with Alzheimer's. She couldn't talk, or brush her teeth or really even eat without help. It was horribly sad. Her husband was marvelous, but as things continued he needed a facility to care for her. It became dangerous and he was still working full time, too young to retire. My dad is 94, and is showing lots of cognitive decline. During all we're all dealing with now; we're not able to see him. It was my turn to video chat with him today. The staff arranges it by taking an ipad into residences rooms. He didn't feel like talking they said. Hopefully, he will on MOnday, when it's my older brothers turn. I'm sure he's getting more confused than he was before since it's been several weeks since we've been able to visit him. Try not to beat yourself up, knowledge is different now and we're all learning and becoming more aware. Sounds like a good book, but I don't think I want to read something like that right now with the virus going on. Take Care

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    1. Sandy: I can well understand that you don't want to read Jemi's book at the moment. When/if you are ready it is there.
      Thank you - and I hope that you too stay safe and well.

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    2. 55 is so young! That's so incredibly sad. I'm so glad we found a wonderful home for our mom. We're able to Face Time with her frequently as well. Thankfully, she loves the attention from the chats. Hope your dad is up to talking with your brother on the next call. Wishing you well!

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    3. Sandy and Jemi Fraser: 55 is young. Sadly this dreadful disease hits some even earlier than that. I have a book called 'who will I be when I die?' by Christine Boden who was 46 when she was diagnosed. Her book is the story of her emotional, physical and spiritual journey in the first three years after her diagnosis - and comprehensively disproves the theory that it only hits people who were not using their brain. Keeping our brains active is always good but it isn't a magical protection from dementia. It is an incredibly moving book and many of the pages in my copy are tear stained.
      And as an aside. I am so very grateful that in your busy week you took time to respond to every comment Jemi, and I sure that everyone who commented here appreciates it too.

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    4. I appreciate you and your readers so very much, EC - what an outpouring of support and love you've generated!! Thank you!
      I hope our researchers are continuing to work on this disease - it seems to be spreading exponentially (like COVID-19) and it is terrifying!

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    5. Jemi Fraser: You are so right about its exponential spread. And wouldn't it be lovely to develop a vaccine for both Covid-19 and a cure for dementia (in all its forms). I wouldn't say no to a cure for MS either.

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  38. That book Jemi wrote is so important – more people need to know about this disease. I wish it had been available while I was caring for my husband. He started his Alzheimer’s journey in 2007. I tried to read as much as I could on the disease to slow down the progression and feel that I was partly successful, but it was super stressful. With no family close by and friends disappearing it was not easy. I constantly cooked fresh food, took him out walking, talked with him, making him read my blog and looking at the photos, and it did help. When he died in the fall of 2018 after his 11 years fight he still could eat by himself. He did not talk anymore but loved looking at books with pictures of cats or birds, listen to music and he even could walk outside and watch nature. But by that time I was totally exhausted physically and morally. People who have had no contact with this illness can’t imagine the feeling of hopelessness the caregivers have. I was isolated with him for so long that I really don’t mind being sequestered in my house because of Covid-19. I have not been out for 20 days now but can look outside at the beautiful spring sky and the buds on the trees. I hope Jemi’s book is read by many.

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    1. Vagabonde: Of course you were exhausted. Completely and utterly exhausted. And yes, I can so understand that your isolation while you were caring for him makes social distancing seem easy. I love that you can see the sky, and sights of spring.
      I too hope that Jemi's book is see by many - world wide.
      Stay safe and take care.

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    2. Vagabonde - you are an inspiration!!! What a loving thing you did for your husband - he was a very lucky man. I can't even imagine how exhausted you were after doing all of those things to ensure he was staying as strong as possible. This disease needs a cure and I'm so glad we've got some brilliant minds working on it, but I wish they had better luck (and more funding!). Sending lots of hugs your way. Stay safe!

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    3. Vagabonde, I do so understand what you are saying. My husband is going through this journey right now, for about 3 years now. Exhaustion is definitely a factor in this whole plight. Caregivers are beginning to get more attention from the medical world and there is more help right now, in Canada anyway. I too am isolated because his children live in England so we have no close family here.

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  39. Thank you for the link, and congratulations to Jemi on her book release! I bought the e-book and am looking forward to reading it. Dementia doesn't seem to run in our family (fingers crossed), but the book seems as though it would be helpful to everyone. We could all use some understanding about what others (dementia patients and caregivers) are going through.

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    1. Diane Henders: We could indeed all benefit from more understanding. In so many areas, but the burden that caregivers willingly shoulder is a big one. I book I referred to in an earlier comment uncovered another gaping hole. Christine Boden was unable to find resources to help her deal with her dementia - they were all designed for care givers.

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    2. Thanks so much, Diane! I hope it will be helpful. We were so thrown off by dementia and didn't recognize any signs at all. I hope dementia stays away from your family!

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  40. I am going to check if it's translated to Turkish or not. Thanks...

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    1. ReHiTu: I really, really hope it is. Good luck.

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    2. ReHiTu - I don't think it's been translated anywhere, just available in Amazon markets worldwide. Sorry!

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  41. Sounds heartbreaking and inspiring all at the same time.

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    1. Lady Fi: It is both of those things.

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    2. Lady Fi - I hope it is inspiring, some of it was definitely heartbreaking (and still is!)

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  42. Good luck to you and your mom, I use to be a CNA and yes it is awful what the disease can do to someone.

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    1. It really is. Thank you for doing such an incredibly challenging job! I'm so grateful that people like you do these jobs!

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    2. Tiffany: Welcome and thank you. You have seen first hand just how much damage and heartbreak this disease can do.

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  43. That is awful desease, so sad for many people. Stay safe everyone!

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    1. It truly is awful! Hope you and yours are safe as well!

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    2. Natalia: It is awful. As I said, I think it is one of the cruelest diseases. Stay safe, stay well.

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  44. Such a cruel disease, and it 'seems to run' in our family, with both my dear Gran and my mum.

    Thanks for highlighting this book.

    All the best Jan

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    1. Lowcarb team member ~Jan: It is a very cruel disease indeed and I am sorry to hear that you know it well.

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    2. Jan - I'm so sorry you've had such experiences with this disease. It robs so many of so much!

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  45. My beautiful sister-in-law survives with dementia. She was relatively young when diagnosed. She lived at home for a while with her son and neighbors checking on her. She still wrote notes to me in Christmas cards. Then she moved into assisted living. Now she is in the memory care unit. She can no longer feed herself. Dementia frightens me, too. So often I cannot think of the word I want. For now I tell myself it's because my vocabulary is so large that of course I can't think of every single word I want or need. We'll see where this goes. I often wonder how long my sister-in-law will have to go on as she does.

    Love,
    Janie

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    1. Janie Junebug: You are not alone. I think it terrifies a lot of us. I am glad that your sister-in-law is safe, but feel for her, and those who love her.

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    2. Janie Junebug, my husband has Alzheimer's, and I know what you mean about not being able to think of words, I do the same, but I believe that is something that happens with aging. It does NOT indicate dementia.

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    3. Janie - I'm so sorry your sister-in-law has been touched with dementia - it's so hard. Glad she's in a good place.
      I worry too - but a lot of that searching is from a 'full brain' and/or regular aging and stress. Take good care of you!

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  46. Thank you for sharing this book with us EC! Dementia scares me too!! It is a cruel disease!!!

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    1. Magic Love Crow: The very cruelest I believe.

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    2. It sure is, Magic Love Crow! I hope finding a cure isn't far off!

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  47. So happy to see Jemi here! I agree dementia is cruel and heartbreaking on so many levels. Hoping scientists figure out a cure or something that can greatly slow the process. Any progress is so important. Bravo to Jemi on her release!
    ~Jess

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    1. DMS ~Jess: Wasn't it lovely to see her very valuable (and heartrending) book featured on so many blogs?

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    2. Thanks so much, Jess! My #1 wish is for a cure for dementia - and even better a prevention!

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