1. < Caregivers: Dementia

Caregiver support and dementia: What are your book recommendations?

Posted by proff @proff, Jan 28, 2021

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.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

ed1937 | @ed1937 | Apr 21, 2023
In reply to @meitsjustme "It's very early in our journey. My husband has not received a diagnosis, yet, but he..." + (show)
@meitsjustme

It's very early in our journey. My husband has not received a diagnosis, yet, but he scheduled for tons of tests. I wonder if there's a book you'd recommend about dealing with the emotional side of things. How to let go of the future you had planned? How to consistently show respect to (and not get frustrated with) the one who needs so much help? How do you honor the person that WAS there while loving and honoring the person who is there now? I'm trying not to be selfish. I'm trying to be loving and kind. I could just use some help.

Jump to this post

Lady Texan mentioned "Understanding the dementia experience". I am not able to post a link here, but if you go to alzconnected, you can search for the title. The link should show up.
She also mentioned videos by Teepa Snow. You can find her videos on youtube if you search for them. Another one I really like is "Careblazers", and you can find that by searching youtube too. Both of these women are excellent teachers, and they can give you a lot of great tips.

REPLY
1 reply
meitsjustme | @meitsjustme | Apr 22, 2023
In reply to @becsbuddy "@meitsjustme Other members have given you some wonderful book recommendations!! You could also think ahead and..." + (show)
@becsbuddy

@meitsjustme Other members have given you some wonderful book recommendations!! You could also think ahead and explore what’s available in your community. Senior Centers have lectures for the caregiver and day programs for the care-receiver. Many of them also have resource counselors who can point you in the right direction. You may also wish to find a counselor/therapist for yourself. You need to feel free to unburden yourself as time moves on.
I loved reading your posting. Your attitude was so upbeat and you’re thinking ahead.
May I ask how you found Mayo Clinic Connect?

Jump to this post

Hi Becky, You asked how I found Mayo Connect. First, I was looking for any and all support I could find. I checked out ALZ Connected and members there said that Mayo was a good site. So, I joined here, too.
Thanks for the suggestions. So many people have been willing to help. I'm grateful.

REPLY
meitsjustme | @meitsjustme | Apr 22, 2023
In reply to @meitsjustme "It's very early in our journey. My husband has not received a diagnosis, yet, but he..." + (show)
@meitsjustme

It's very early in our journey. My husband has not received a diagnosis, yet, but he scheduled for tons of tests. I wonder if there's a book you'd recommend about dealing with the emotional side of things. How to let go of the future you had planned? How to consistently show respect to (and not get frustrated with) the one who needs so much help? How do you honor the person that WAS there while loving and honoring the person who is there now? I'm trying not to be selfish. I'm trying to be loving and kind. I could just use some help.

Jump to this post

Thanks, Ed. It looks like I have my reading and viewing lists cut out for me for a while! But, I'll save some time for fiction, too. 🙂

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 22, 2023
In reply to @ed1937 "Lady Texan mentioned "Understanding the dementia experience". I am not able to post a link here,..." + (show)
@ed1937

Lady Texan mentioned "Understanding the dementia experience". I am not able to post a link here, but if you go to alzconnected, you can search for the title. The link should show up.
She also mentioned videos by Teepa Snow. You can find her videos on youtube if you search for them. Another one I really like is "Careblazers", and you can find that by searching youtube too. Both of these women are excellent teachers, and they can give you a lot of great tips.

Jump to this post

Hi @ed1937, you will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Understanding the Dementia Experience by Jennifer Ghent-Fuller, B.A., R.N., M.Sc.N. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun

Teepa Snow https://www.youtube.com/channel/UCSXrEX7LkWOmfTaV6u1C7wQ

REPLY
1 reply
jan83404 | @jan83404 | Apr 22, 2023
In reply to @meitsjustme "It's very early in our journey. My husband has not received a diagnosis, yet, but he..." + (show)
@meitsjustme

It's very early in our journey. My husband has not received a diagnosis, yet, but he scheduled for tons of tests. I wonder if there's a book you'd recommend about dealing with the emotional side of things. How to let go of the future you had planned? How to consistently show respect to (and not get frustrated with) the one who needs so much help? How do you honor the person that WAS there while loving and honoring the person who is there now? I'm trying not to be selfish. I'm trying to be loving and kind. I could just use some help.

Jump to this post

Finding Grace in the Face of Dementia by John Dunlop, MD is a great book.

REPLY
ed1937 | @ed1937 | Apr 22, 2023
In reply to @colleenyoung "Hi @ed1937, you will be able to add URLs to your posts in a few days...." + (show)
@colleenyoung

Hi @ed1937, you will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Understanding the Dementia Experience by Jennifer Ghent-Fuller, B.A., R.N., M.Sc.N. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun

Teepa Snow https://www.youtube.com/channel/UCSXrEX7LkWOmfTaV6u1C7wQ

Jump to this post

Thank you, Colleen.

REPLY
FWW | @fwentz | Apr 24, 2023
In reply to @meitsjustme "It's very early in our journey. My husband has not received a diagnosis, yet, but he..." + (show)
@meitsjustme

It's very early in our journey. My husband has not received a diagnosis, yet, but he scheduled for tons of tests. I wonder if there's a book you'd recommend about dealing with the emotional side of things. How to let go of the future you had planned? How to consistently show respect to (and not get frustrated with) the one who needs so much help? How do you honor the person that WAS there while loving and honoring the person who is there now? I'm trying not to be selfish. I'm trying to be loving and kind. I could just use some help.

Jump to this post

I recommend The Caregiver Helpbook. It provides comprehensive practical help covering a wide range of topics useful for caregivers. It is used in the Powerful Tools for Caregivers class which can be taken virtually online.
REPLY
0616 | @0616 | May 4, 2023
In reply to @meitsjustme "It's very early in our journey. My husband has not received a diagnosis, yet, but he..." + (show)
@meitsjustme

It's very early in our journey. My husband has not received a diagnosis, yet, but he scheduled for tons of tests. I wonder if there's a book you'd recommend about dealing with the emotional side of things. How to let go of the future you had planned? How to consistently show respect to (and not get frustrated with) the one who needs so much help? How do you honor the person that WAS there while loving and honoring the person who is there now? I'm trying not to be selfish. I'm trying to be loving and kind. I could just use some help.

Jump to this post

I would like to share an article I read in the NYT that I found supportive in caring for someone with Dementia/Alzheimer's. It is entitled "When My Father Got Alzheimer's, I Had to Learn to Lie to Him". The author is Sandeep Jauhar. The author is a cardiologist who frequently writes about medical care and public health.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2023
In reply to @0616 "I would like to share an article I read in the NYT that I found supportive..." + (show)
@0616

I would like to share an article I read in the NYT that I found supportive in caring for someone with Dementia/Alzheimer's. It is entitled "When My Father Got Alzheimer's, I Had to Learn to Lie to Him". The author is Sandeep Jauhar. The author is a cardiologist who frequently writes about medical care and public health.

Jump to this post

Thanks for the article @0616. I moved your post to this related discussion.
- Book recommendations for dementia and caregiving? https://connect.mayoclinic.org/discussion/book-recommendation-1/

For those interested in reading New York Times article, here is the link:
- When My Father Got Alzheimer’s, I Had to Learn to Lie to Him by Sandeep Jauhar https://www.nytimes.com/2023/04/07/opinion/alzheimers-dementia-lying.html

REPLY
1 reply
2me | @2me | May 5, 2023
In reply to @colleenyoung "Thanks for the article @0616. I moved your post to this related discussion. - Book recommendations..." + (show)
@colleenyoung

Thanks for the article @0616. I moved your post to this related discussion.
- Book recommendations for dementia and caregiving? https://connect.mayoclinic.org/discussion/book-recommendation-1/

For those interested in reading New York Times article, here is the link:
- When My Father Got Alzheimer’s, I Had to Learn to Lie to Him by Sandeep Jauhar https://www.nytimes.com/2023/04/07/opinion/alzheimers-dementia-lying.html

Jump to this post

Colleen, thank you for those links! Unfortunately I cannot open the article you linked to the NYT without paying for a subscription. I’ll try Googling it.

REPLY
View MoreView Less
Please sign in or register to post a reply.