“I’m Still Here”—Book review

If you’re in a conversation with someone with a memory problem, hear this:
Don’t test them. Please.

I'm Still Here by John Zeisel Ph.D. That’s what I heard in I’m Still Here: A New Philosophy of Alzheimer’s Care. And that’s what I’d already learned with my mom.

Unless you’re questioning for a medical evaluation, why make someone with dementia feel even worse about himself than he already does?

Give them the answers for free instead.

Instead of saying, “Do you remember me? Do you know why I’m here?” (maybe they do, maybe they don’t), say, “Hi, Mom! It’s your daughter Lisa. I’m here to sit and visit with you.”

“Don’t test” is the fourth of the Five Rules of Communication from author John Zeisel, Ph.D.:

4.  Don’t test!
For a person living with Alzheimer’s, from the very beginning of the illness, posing such questions feels increasingly like a test of memory they are sure to fail.

Every test is a reminder of failings and losses. Every test increases the person’s feelings of inadequacy.

Why do we test? We test to make ourselves feel better. We want to know that we exist in the person’s mind as we have always existed.

…If we are more interested in the relationship and the person’s enjoyment, we can give him the answers rather than ask questions. This achieves the same results while decreasing anxiety and agitation.

The other 4 rules are:

1.  Hear and respond to the other person’s “reality.”
2.  Be honest.
3.  Always address the person directly.
5.  Don’t say “don’t”; divert and redirect instead.

I began I’m Still Here when my mother was alive. She died when I was about ¾ finished with the book. I debated about reopening it.

I’m glad I did.

Because I don’t know if Alzheimer’s is finished with me or not. Probably not. I’m sure to know many more people with it in my lifetime, including a roomful of friends that I hope to visit again soon.

Zeisel’s book puts a very human face on this disease. He centers on how to stay connected in a loving relationship with the person living with Alzheimer’s.

His final chapter “Being in the Present Moment” highlights two gifts that you receive and can give to those with Alzheimer’s (and to anyone else!):

Mindfulness and Compassion

Through compassionately being present, focus on skills and capacities that don’t fade with the disease, such as emotions, the response to touch, facial expressions, music. 

And learn to diminish the 4 A’s of Alzheimer’s Disease that are often only secondary symptoms anyway: apathy, anxiety, agitation, and aggression.

Like people with Alzheimer’s do, learn to live in the “point of time” rather than just the “line of time.”

THE LINE OF TIME
Past —> Present Moment —> 
Future
We are always moving from past to future.

THE POINT OF TIME
Past —> Present Moment <— Future
The present moment represents all moments.

As Zeisel says, an Alzheimer’s diagnosis doesn’t have be seen as an Alzheimer’s sentence.

Throughout the more than decade-long progress of the disease, the person is crying out, “I’m still here.” We all need to start hearing that cry before it fades away completely.

* * *

Who do you need to listen to today?
Give them the gift of your full attention and compassion.

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16 comments:

Whidbey Woman said...

My mother in law has Alz. Also, I work with seniors with various forms of dementia. So, this is a book I need to definately read! Thanks for sharing it for Spiritual Sunday :)

Lisa notes... said...

I’m sorry to hear about your m-i-l. Alzheimer’s is a rough disease to have for everyone involved.

What a blessing for the seniors that you work with them! I do recommend this book; it was very informative and “relational”, which I liked.

Blessings,
Lisa

INSIDE THE SHRINK said...

Sometimes we need help with knowing how to communicate with someone who is having cognitive problems. We either make them uncomfortable or we turn the other way and refuse to acknowledge they exist. This sounds like a great book to help those of us who need a bit of tact. Thank you for addressing the subject. Great post. God bless, Dr. Bobbi Jo

Dianne said...

Oh, there is a LOT of wisdom in this. Thanks, Lisa, for sharing it with us. None of us know when we might be called upon to use this wonderful knowledge. God give us the wisdom to use it wisely.

Renee said...

This book sounds like one we could all learn from. Sending prayers your way Lisa....

sarah said...

there's a real need for this information. I work in a hospital....and see families struggling. Compassion goes a long way with whatever is going on...it always makes a difference.

Carolyn said...

Hi Lisa,

I am so sorry you lost your mother. My mother has Alz as well. It is a terrible monster that lives within the mind. Thank you for sharing this....I should probably get the book!

Hugs, Carolyn ~ Cottage Sunshine

Beautiful pear tree lane said...

Thank you for taking the time to share this book. Thank you for reminding me to always! always take the time to give the gift of my full attention as well as compassion.
What an Awesome Title.
Blessings,
Sue

Happy Cottage Quilter said...

We have an aunt who has dementia. I read "the 36 Hour Day" and it really helped us to see the difference and to recognize so many of the traits of memory loss. Thanks for sharing this information.

Jocelyn
http://justalittlesouthernhospitality.blogspot.com/

Dianna said...

Lisa, I have been away from the computer for blogging for close to a month and I am just now realizing your great loss. I am so sorry for the hurt that you are now suffering. I will be praying for you.
Gentle hugs to you.

Charlotte said...

Thank you for sharing your knowledge of Alzheimer's with us. I think every family is touched by it in some way. If not a family member, a dear friend. I like the advice the post started out with. We need to be sensitive to their condition and their needs.
Blessings to you,
Charlotte

Ginger~~Enchanting Cottage said...

Thank-you for sharing this book with us. This is a hard subject. I will pray for your family.
Blessings,
Ginger

nannykim said...

Great points. My MIL died this past Feb and she had had alz. for quite some time. I just enjoyed bing with her--her days varied but I could tell she was the same person---it almost felt like the way you deal with a very young child who has not learned to talk. She could recognize me as someone she new and loved even if she wasn't sure exactly who I was.

Lisa notes... said...

Kim,
Yes, that’s how I felt, too - similar to being with a young child. You don’t even have to have language to enjoy each other’s company. Sounds like you were quite a blessing to your m-i-l.

John Zeisel, Ph D said...

Dear Lisa
What a wonderful conversation your recommendation of my book "I'm Still Here" has generated. Your own mindfulness and compassion is clear in your sensitive and personal summary; your reader's compassion is clear in their responses. thank you and thanks to all. I hope my words carry both insight and peace to others.
John Zeisel

Lisa notes... said...

Dr. Zeisel,
Yes, your book has generated some great conversations. I’ve had several people tell me they also want to read the book, either because they work with the elderly in a facility and/or have family members living with Alzheimer’s.

I pray that the care and sensitivity that you have written about in "I'm Still Here" will be carried out by all who read your words. I know that I have been blessed by the reading. Thank you for your sensitivity and the use of your gifts to help others.

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