Where Are the Keys? Unlocking Alzheimer's

A friend gave me an article quite some time ago.  It took me awhile to read it.  When I did I was inspired.  Then I lost the article.  Tonight she and I talked about the article and told me it was from the Parade Magazine.  Tonight I googled Parade Magazine & Alzheimer's.

Up popped a number of articles.  The one I was looking for was titled "Unlocking the Silent Prison" .  Christine Wicker tells how Michelle S Bourgeois, a speech-pathology professor is an expert at communicating with people who have dementia.

One strategy she recommended was memory flashcards. She said, "that people with Alzheimer's can read words if the print is large enough."  Bourgeois has been using these strategies for the last 20 years.  She has trained countless people how to use them.  When I was taking care of my mother, I wish I had been trained by her.


She has written a book about her methods and strategies, "Memory Books and Other Graphic Cuing Systems: practical communication and memory aids for adults with dementia".  The title is a little wordy, but it looks like it has some very valuable suggestions.


When my mother was diagnosed with advanced Alzheimer's in 1998, I knew next to nothing about the disease. As I started my journey, I did not know where to go.  I was fortunate to have great family support and the support of good friends.  I also met caring professionals that made a positive difference in our lives.  Little by little I found help.  I tried many different things, some worked some didn't.  Sometimes I wonder if I could have had more training with follow up, would things have been easier?


I continue to read research about Alzheimer's, I try to keep up on what other people have found that works.  Thankfully it is easier to find information and support.  Doctors and other medical professionals are more informed about the disease.  


My mother lived with me from 1998 until Dec 2006 when I was hospitalized with Pancreatitis. She passed away June 2007.  Today I learned that Alzheimer's is the third leading cause of death world wide.  This silver tsunami, this thief of memory needs to be stopped.  But until it is stopped we need to share information so caregivers have the best tools available to care for people with neurological disorders like Alzheimer's.  


When I was in the middle of caring for Mom, I just needed help with how to take better care of her.  How to deal with issues like her fear of showers.  How to keep her safe when she wandered.  I experimented with many things.  Now there is GPS in shoes.


I have read many stories of how family members have taken their talents and applied them to caring for and loving their family member.  The photographers who have made documentaries, the authors who have written books, the techie people who have developed software.  The list goes on.  We have been faced with great odds and we have used our talents to try and make a difference.  We have done it for our loved ones. We continue on because we have the experience - we were the first responders - we were boots on the ground.


I hope that I can share some of the things that worked with my mom.  I also try to share information that looks promising.  Networking and sharing information with each other is the key to solving these neurological diseases and the dementia that accompany them.

Was She Still Reading?

It has been over a year since I last posted to Bridging Memories (this is a cross post).  Juggling life is always a challenge.  Even though a lot of time has passed since my mother died, my emotions are still a little raw.  I also have not posted to my education blog at Li-Bear-Y Corner.  I have however kept up with Windows 2 My Life.  Mostly writing short slices of life stories.

I decided tonight that it was time to return.  Thank you for sharing my journey  I am sure there will be detours and probably some bumpy patches up a head.  I hope you will add your thoughts.

Books have always been a part of my life.  My mother read to me as a child.  My mother loved books and reading.  When she developed Alzheimer's I would read to her.  I mostly read children's picture books and we would look at the pictures.

One day I read an article about Lydia Burdick.  She had written a picture book for her mother who had Alzheimer's disease.  The title of the book was called "The Sunshine On My Face:  A Read-Aloud Book for Memory Challenged Adults.  I ordered it.  The first time I read it to Mom, she responded.  It was amazing.  She connected to the book in ways she never had with the children's picture books.

Lydia Burdick has developed a new literature genre.  I have recently noticed a few more authors publishing books in this category.  I would encourage you to check some of them out.

I recently learned a fact I did not know when my mother was still living.  Reading is one of the last skills that a person with Alzheimer's lose.

Years ago my mother would attend a cooking school.  If I was in town I would join her.  After I moved to Billings I attended The Taste of Home Cooking Show every fall.  I would go with my sister-in-law, her two adult daughters and my mom.  Every person who attends gets a goody bag, complete with their cooking school magazine with that nights recipes.  They also set up big screen tv's so you can see the person cooking.

Mom had her magazine in front of her.  I had turned the pages to match the dish being prepared.  I got side tracked and didn't turn my own page.  When the cook moved to the next dish mom nudged me and let me know the page needed turning.  She looked like she was intently reading the new page.  I remember feeling amazed.

Carol a friend shared an article about individual's with Alzheimer's still being able to read.  Thinking back I see that Mom probably was reading.  What doors that would have opened if I had understood that.


Related Posts

Many Alzheimer's Patients Find Comfort in Books - NYTimes.com

http://melissahoward.suite101.com/prevents-alzheimersread-to-kids-a42031

http://www.alzpoetry.com/reading/

http://www.alzinfo.org/09/blogs/give-anyone

I'm Reading It In My Head

One of my kindergartner's chose a chapter book (reading level 3.9) to check out.  I asked him to read a page aloud to me and we would do the 5 finger test together.  I reminded him to put up one finger each time he came to a word that was hard or he didn't know.  If at the end of reading the page he had 5 fingers up is to challenging, 0-1 probably to easy 2-4 a just right challenge.

The kindergartner just looked at the page.  He didn't say anything.  I prompted again.  I asked, "Why aren't you reading it to me?"

He looked at me with confidence and said, "I'm reading it in my head."

What do you say to a comment like that?

Are There Whales in Montana?

One of my young kindergartners is a live wire.  He skitters like a droplet of water on a hot skillet.  The energy just emanates and sizzles.  He always has a smile.   Every morning I see his grandpa pull-up.  I watch as the boy runs to the school door.  He’s always in hyper drive.  Slow is not in his vocabulary.  Neither is quiet.

In the afternoon his grandpa is waiting as he runs through the doors.  Smiling up into his grandpa’s face I see him rapidly spilling out the day’s happenings.  I imagine his words running over themselves as they hurry to escape.  He wants to share everything with his grandpa as quickly as he can.  His grandpa is raising him.

He shares snippets of his life as he flashes past me.  “My grandpa quit smoking, so he can live longer for me.

I have never heard about a grandma. Pieces of the story zing past, his father lives elsewhere.  Now he lives with grandpa. 

He loves to hear stories.  His exuberance is contagious.  I read the “Three Bears” last month.  I asked who had previously heard the story, only a few hands went up.  The boy with eyes the size of saucers, claps and at full volume, “You have to listen, the story is AWESOME!”

When I read a story he is familiar with he retells in a staccato rhythm as I read it to the class.  He just can’t help himself.  I now choose books that he can echo as I read.

Friday he excitedly shared that he and his grandpa were going fishing.  Then with candor, “My grandpa’s fishing pole can catch a whale.  A really big one.”

For landlocked Montana that is a "good day's fishing".  I know that in the boy’s eyes his grandpa is bigger than life.   

As he runs through the door, the air whooshes out leaving a vacuum of silence in his wake.

Why Join a Group

What makes you decide to give up your time and energy to belong to a group?  Why attend meetings?  These are some of the questions I have been grappling with.  I belong to a group called MERC.  When I first joined (In the last century) we averaged 100 plus members.  It has dwindled down to about 20 dedicated members. 

Next year I may be in a leadership role.  A role I have avoided in the past because of time commitments.  None-the-less I believe literacy and reading is important and I want the organization to be a success.  A few years ago we ended up in the hole.  The last few years the leaders have worked hard at rebuilding the organization.  Through their efforts we are again in the black.

From the brochure sent out to recruit members:  “The Midland Empire Reading Council (MERC) is a nonprofit educational organization whose members are dedicated to improving reading instruction and promoting literacy needs in the community.  MERC contributes to the professional growth and development of its members and addresses literacy needs in the community.”

These are lofty goals that the organization generally meets.  I come back to the question what do we need to do to – (1) Build membership numbers (2) Make it so people look forward to attending (3) Make it fun  (4) Meet our mission statement?

I keep looking to the PLNs  (Personal Learning Networks) that I belong to. - lots of knowledgeable people,  lots of support,  and an online community.  I think that is what is missing in MERC.  As an organization we have not connected personally.  We have not built a community where everyone feels included and welcomed.  How do you build that community?  How do you build that membership base?

When you have a small membership base, the same people end up doing all the work.  That builds resentment and disenchantment, as well as burnout.  I know that many service organizations across the nation are feeling the pinch of dwindling membership.  Our young members are extremely busy people.  How do we recruit them?  What can we offer that makes for a fair exchange - for the time, money and effort that they contribute?

We stand on a pivotal point, our world is changing at a rapid rate.  How do we keep up?  How do we move forward?  How do we convince others to take the journey with us?

A line from an old song comes to mind, “the answer is blowing in the wind”.  Here is a funny coincidence – 2 teachers just came in and were looking for the book “The Wind Blew”.  Maybe the answers to my questions are blowing in the wind.

"Mom, this is Mrs Ferris Wheel"

School has been in session here in Billings, MT for several weeks.  Last week we had open house.  The kids and their parents come in and say hi.  Many of my former students drop by to see their old stomping grounds.  When they come back they are tall and handsome young women and young men.  They change so much from 6th grade to high school.

Three things made this open house memorable for me.  (1) One of our new Kindergarten students brought her Mom in and introduced us. "Mom, this is Mrs Ferris Wheel, the librarian."  Mom looked a little puzzled with that introduction.  I smiled as I explained that my name is Mrs. Ferris.  I had told the kids to think of the ferris wheel at the fair, then they would remember my name.  The Mom smiled and told her daughter that she didn't have to say the wheel part next time.

The second memorable conversation came from one of my 2nd graders and one of his younger siblings.  I was eaves dropping on their conversation.

 "Is she the princess?"

Older brother, "No she is the Queen of the Library."  As they left he turned and waved and said, "Good by Queen."

Sometimes I really wish I had a window into their thoughts.  It certainly made my day.

The third memorable experience was from a previous student accompanying his Mom and younger sister.  This handsome strapping young man is now in high school.  He shared with me, "Because of you I became a reader.  When I was in 7th and 8th grade I read constantly I read the Harry Potter series in three weeks.  All of the books.  I read another series in two weeks, all I wanted to do was read."

His Mom looked at me with pride shining in her eyes and said she had to threaten to take away his books to get him to do anything else.

He chimed in, "ya, I lost my books when I got in trouble."

I thanked him for sharing his story with me.  He seemed puzzled as he commented, "You were really excited when I told you about loving reading."

I told him I was and that I was very proud that he had become a life long reader.  I think this year will be memorable.