Caregiver support: What are your book recommendations?

Posted by proff @proff, Jan 28 8:32am

One of the best books for caregivers is one by Martin Schreiber, Wisconsin’s former governor whose wife, Elaine, had Alzheimer’s and for whom he was caregiver. In the book, My Two Elaine’s: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, he tell caregivers everything he wished he had known and nobody tells you. It is available on line, is large print, and is the best read I’ve had.

Thank you. I will look for that. May I also recommend CREATING MOMENTS OF JOY Along the Alzheimer’s Journey by Jolene Brackey.

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Hi @proff This is a great topic! I always find it helpful to learn what books other caregivers find helpful. I was my wife's caregiver for over 14 years and was often frustrated with caregiving books. So many simply were a retelling of someone's individual journey, which naturally was far different than our own so not of any help to us. To me the worst were those that gave a totally unrealistic view of the true realities of caregiving. And as every caregiver knows, no caregiver ever has time to spare, let alone spend reading.

I realize that taste in books is as unique as are each of us, our patient, and their journey. That said there was one book my wife and I both found to be very helpful. It's short and due to its format a bit fun as it is two books in one. We found it in the Cancer Care Library of Mayo in Rochester, but I imagine it's available other places as well.

The front of the book is titled “When You’re The Caregiver” 12 Things To Do If Someone You Care For is Ill or Incapacitated”. When you turn it upside-down and flip it over it's titled “When You’re Ill or Incapacitated” 12 Things To Remember in Times of Sickness, Injury, or Disability” It was written By James E. Miller.

For us, the beauty of this book was that it not only explained what each of us was about to experience in our new 'roles', but also helped us greatly to understand what each other were about to experience in theirs! Both my wife and I agreed on its value.

Still far and away the caregiving book I recommend and give away most often.

Strength, courage, and peace.

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Due to my wife's recent changes in her MCI, I've been trying to understand what is causing the changes. I've talked to my daughter-in-law (who is in the medical field) about my wife's changes and she has been awesome in answering my questions but sometimes a little too technical. For our anniversary (#51), she gave us a book "KEEP SHARP, build a better brain at any age" by Sanjay Gupta, MD. I've read it once and now I'm rereading it. It has been a tremendous help in understanding what happens in the brain and how it changes with diseases (MCI/Dementia/Alzheimer's ). I like that it’s written for non-medical people and easy to understand. I also like that the writer is a brain surgeon and the book was published 2021 so it is update with all the latest research.
I’d highly recommend the book for anyone interested in trying to understand why your loved one is changing with this disease.

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Thanks for your book reviews! These are great!

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@kristin816

Thanks for your book reviews! These are great!

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Welcome, Kristin. Are you caring for someone living with dementia?

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@colleenyoung

Welcome, Kristin. Are you caring for someone living with dementia?

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Thanks for the welcome! Yes- my father is currently living with dementia – LBDementia.

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@kristin816

Thanks for the welcome! Yes- my father is currently living with dementia – LBDementia.

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@kristin816, you'll be excited to know that we just opened a Mayo expert blog dedicated to dementia. Please follow:
– The Dementia Hub https://connect.mayoclinic.org/blog/dementia-hub/

Also, on May 3, you're invited to attend the virtual Lewy Body Dementia Support Summit. See details and free registration here: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

I saw in your profile bio that you are caring for both your parents. Do they live with you?

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@colleenyoung

@kristin816, you'll be excited to know that we just opened a Mayo expert blog dedicated to dementia. Please follow:
– The Dementia Hub https://connect.mayoclinic.org/blog/dementia-hub/

Also, on May 3, you're invited to attend the virtual Lewy Body Dementia Support Summit. See details and free registration here: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

I saw in your profile bio that you are caring for both your parents. Do they live with you?

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Hello @colleenyoung – thanks for letting me know about the new Mayo expert blog for dementia – Awesome! I am always looking for new information. Also thanks for the info about the May 3rd Summit – I am in.

My parents are living in a retirement community near by – they are both currently on the Independent Living side of things – but I am involved in a lot of their "independent living" such as grocery store/ doctor visits/ medication management etc ..

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@kristin816

Hello @colleenyoung – thanks for letting me know about the new Mayo expert blog for dementia – Awesome! I am always looking for new information. Also thanks for the info about the May 3rd Summit – I am in.

My parents are living in a retirement community near by – they are both currently on the Independent Living side of things – but I am involved in a lot of their "independent living" such as grocery store/ doctor visits/ medication management etc ..

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Fabulous! How is your mom managing with your dad's LBD? How is her health?

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She is getting very stressed about my father’s behavior- the fact that some times he is ‘normal-ish’ and other times can’t remember anything- ugh! It’s wearing her down

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@kristin816

She is getting very stressed about my father’s behavior- the fact that some times he is ‘normal-ish’ and other times can’t remember anything- ugh! It’s wearing her down

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I can imagine it is wearing her down. Does she have any health issues of her own to contend with too?

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@colleenyoung

I can imagine it is wearing her down. Does she have any health issues of her own to contend with too?

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Yes – she is recovering from brain injury in 2016- and deals with Afib, hypertension and anxiety… I got her to try tapping to relive her anxiety and so far it is working a treat! So that is good!

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