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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.

meitsjustme | @meitsjustme | Apr 20, 2023

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.

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12 replies
LadyTexan | @ladytexan | Apr 20, 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.

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Greetings Meitsjustme.
A) An essay that is especially informative is called Understanding the Dementia Experience.
B) Two books I found to be especially helpful are
1-Untangling Alzheimer’s by Tam Cummings and
2-The 36 Hour Day
C) online videos by Teepa Snow regarding validation are very educational.
D) by far the most helpful resource I have found is the stories shared by other caregivers. Build a network with caregivers. Find a support group. In my experience, Other caregivers will walk the journey with you. They have real life experiences that will be valuable to you.

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meitsjustme | @meitsjustme | 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.

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Hi LadyTexan, Thanks for the suggestions. I'll look for the books and the essay. As far as a support group, I joined this group ALZ Connect within the last week. Already I've found strangers willing to help. It's something to be very grateful for.

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tgeno | @tgeno | 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.

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Here's another book. "Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers" by Jolene Brackey

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Mentor
Scott, Volunteer Mentor | @IndianaScott | 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.

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Good morning, @meitsjustme One book I found helpful was a small book by James F. Miller. It actually has two titles for each half of the book. One is "When You're the Caregiver: 12 Things to Do if Someone You Love is Ill or Incapacitated." The other half is titled "When You're Ill or Incapacitated: 12 things to Remember in Times of Sickness, Injury, or Disease." I found this book to be very helpful, especially in the early portion of my wife's journey.

This also helped me look at things from my wife's point of view.

Strength, Courage, & Peace

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meitsjustme | @meitsjustme | 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

Thanks for taking the time to recommend these. I appreciate it,

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meitsjustme | @meitsjustme | Apr 21, 2023
In reply to @tgeno "Here's another book. "Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and..." + (show)
@tgeno

Here's another book. "Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers" by Jolene Brackey

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Wow. Just the title of that one makes me happier. Thank you.

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cmiddlet | @cmiddlet | 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

The Four Agreements by Don Miguel Ruiz helped me and my children. Though my husband may not understand or abide by them, it has been a sanity saver for us. We see a family counselor who helps us work through things. Yes, sometimes we have to engage in therapeutic fibbing to get through my husband's catastrophic breakdown events (never argue and sometimes you have to play along with the hallucinations to keep the peace). Don't take anything personal and do your best. Really good read that helps in alot of other areas in life.

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1 reply
meitsjustme | @meitsjustme | Apr 21, 2023
In reply to @cmiddlet "The Four Agreements by Don Miguel Ruiz helped me and my children. Though my husband may..." + (show)
@cmiddlet

The Four Agreements by Don Miguel Ruiz helped me and my children. Though my husband may not understand or abide by them, it has been a sanity saver for us. We see a family counselor who helps us work through things. Yes, sometimes we have to engage in therapeutic fibbing to get through my husband's catastrophic breakdown events (never argue and sometimes you have to play along with the hallucinations to keep the peace). Don't take anything personal and do your best. Really good read that helps in alot of other areas in life.

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Thanks for the tips cmiddlet. I'm needing all the helpful bits I can get my hands on.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 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

@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?

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