Listening to dementia – “I’m Still Here”

I read I’m Still Here four years ago to learn more about my mom’s Alzheimer’s. I’m reposting my original review today for those dealing with their own loved ones going through dementia.

When you’re talking with a family member or friend who has 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 learned with my own 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 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.

Zeisel 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.”

Past —> Present Moment —> 
We are always moving from past to future.

Past —> Present Moment <— Future
The present moment represents all moments.

As Zeisel says, an Alzheimer’s diagnosis doesn’t have to 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.”

I began I’m Still Here when my mother was alive. She died before I finished it. I debated reopening it.

I’m glad I did.

Because Alzheimer’s is surely not finished with me yet. Or you. We already know many with it, and many more to come. Let’s be present with them through it.

* * *

For more, read this excellent series, “Adventures in Elder Care” by my blogging friend Barbara on caring for aging parents.

24 thoughts on “Listening to dementia – “I’m Still Here”

    1. LisaNotes Post author

      I’m sorry, Linda. 🙁 That’s an appropriate way to put it: Alzheimer’s is a long, sad good-bye. That’s how I felt too with my mom. I continue to pray for a cure for the long-run, and for understanding for those in the midst of it.

  1. Andrew Budek-Schmeisser

    You’re absolutely right, and I’m glad you reopened this discussion. It’s needed.

    Often the ‘questioning’ isn’t badly intended – it’s actually a cry from the questioner…”Do you remember what we share?”

    When you lose a “remember when” relationship, a part of you dies, and it does hurt.

    But that temptation to find comfort has to be resisted, because, frankly, it’s a triage situation, and the needs of the person who has Alzheimer’s has to be addressed first.

    1. LisaNotes Post author

      You’ve nailed it, Andrew: the questioning is usually our own attempts to find comfort in knowing we’re still remembered. That’s how I felt anyway; I wanted to know my mom still knew ME.

      And I also agree that we have to be strong enough to surrender those needs to those who are more fragile. I remember when my mom asked my older sister and I if we were twins. (We’re two years apart.) It was a sad day for me, but unfortunately that’s the way the disease works and I had to get past taking it personally.

  2. floyd

    I know this wasn’t easy for you, Lisa. I had no idea of how to respond in this scenario, none of did when my grandma passed. Thanks for the enlightenment. That opening paragraph is so powerful, I’ll never forget it.

    1. LisaNotes Post author

      There’s so much I wish I’d known earlier too. I think back to how I mishandled several situations with my mom out of ignorance, but I know now all is forgiven since she’s completely whole and healthy again, same as your grandma. We live and learn and pray for grace to cover our mistakes.

    1. LisaNotes Post author

      God continues to impress upon me from many different angles that I need to be fully present, here and now. Thanks for stopping by and blessing me with your words, Mari-Ann. You’re always so joy-filled.

  3. Betty Draper

    Lisa, thank you for posting this. My mother is suffering with dementias, getting worst every time I see her. She is a strong woman but this disease has stolen her joy and memory. My sister in law and brother tend to argue with her and it makes her worst. I remember taking my computer for a visit with my Mom hoping to have her tell me stories from her youth. She got mad and left me sitting alone and wheeled her wheel chair back to her room. I followed her and she turned on the tv and continued to ignore me. It was there I realized she really does not remember. I apologized to her and we cried a little and I have never done that again. Going to send your post to my family.

    1. LisaNotes Post author

      Oh, Betty, I’m sorry you’re going through this with your mom. I know it’s painful both for you personally as well as the empathy pains you feel for your mom. It’s such a hard disease to deal with on many levels.

      I appreciate you sharing that piece of your story. Those moments of insight really are valuable not only for ourselves but also for others to see and learn from. Blessings to you on your journey.

    1. LisaNotes Post author

      Oh, I know; I often wonder if my mother understood far more than she could communicate, or if the thought process deteriorated at the same pace as the communication one. I hope I never have to discover the answer for myself….

  4. ceil

    Hi Lisa! How smart of you to get a book to help you navigate your way with your Mom. I’m so sorry about the whole experience you had. It’s so hard to watch a once vital person just melt away.
    My mother-in-law didn’t have Alzheimer’s , but she had dementia, and your point about the present is so true. I used to tell people that if I stayed in the ‘right now’ everything was fine. If I tried to talk about the old days, or even current events, it was greeted with a blank stare.

    I like the point that the reason we test is basically so I’ll feel better. It really does little for the person dealing with the memory loss.
    So many people are and will be dealing with this disease, it seems to touch every family. Thank you for talking about your experience. It creates a community of people who now feel less alone dealing with the same issues.

    1. LisaNotes Post author

      Going to a book is my default, Ceil. 🙂 Sometimes that’s good; other times, not. But it definitely was helpful in this case with my mom’s Alzheimer’s. And yes, these principles are applicable to those with any kind of dementia.

      You’re right that hardly a family is untouched by dementia of some sort, so it is beneficial to all to learn what we can. And pray that we don’t need someone else to be learning about it for OUR own sakes someday.

  5. Trudy

    Wow! What an important resource! What really struck me is to offer free information instead of testing them and asking, “Do you remember me?” So compassionate to the person’s feelings of inadequacy. I plan to include this resource at my “book” page this month. Thank you, Lisa!

  6. Jennifer Dougan

    So interesting, Lisa, to learn about not testing them, and to rather give the information freely. Thank you! This is new to me and I am tucking it away.

    Re your comment on my post “The Tattoo Every Parent Needs,” fun! What did your 51 year old friend decide to get as a tattoo?! So much thought went into that, I’m sure that it was very meaningful for her.

    Me too, about the God vs human recognition, Lisa. Working on it with you…

    Jennifer Dougan

  7. Barbara H.

    I just put this book on my TBR list. Though my m-i-l doesn’t have Alzheimer’s, she does have dementia, and the tips you shared here I’ve found to be helpful as well.

    Thanks for the link. 🙂

    1. LisaNotes Post author

      Yes, I think these suggestions would apply equally to any dementia, not just Alzheimer’s. You’re still one of my heroes for all you do for your m-i-l in your own home. Your series was especially meaningful because I know it comes from experience. It’s my honor to point others to you.

  8. TC Avey

    It’s heart breaking, scary, overwhelming and sometimes frustrating to see a loved one live with this. My dad died of brain cancer, it affected his memory, speech, sight, and ability to walk.
    Thanks for sharing this resource. God bless.

    1. LisaNotes Post author

      I imagine it was super hard to watch your dad decline like that. 🙁 There are so many difficulties in life that we can’t explain; I’m just very thankful that this life/death isn’t the end.

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