Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

Friday, February 17, 2012

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

Thursday, February 16, 2012

Floating Heads

When I was taking care of my mother a young woman in my National Guard Unit told me not to wear black when working with my Mom.  People with Alzheimer's see black as a hole.  So if you are wearing black they see a hole with your head floating in the air above it.

After having this conversation I told this story to my mother's caregivers.  When I read Jolene Brackey's book "Creating Moments of Joy" she has a short article titled "White on White".  Until I read the story I had not realized that wearing white and standing next to a white wall had a similar effect.  Your hands and face would appear to be floating.

In the article she asked what color are bathrooms (white)? Toilets (white)?  I had my aha moment.  My mother had not been able to see the toilet or bathtub.  No wonder she fought about getting into the tub, or sitting down on the bath chair.

If I had a magic wand I would give every family a copy of Jolene's book.  It is filled with common sense.  It is filled with ways to share moments of joy with family members that have Alzheimer's and other forms of dementia.  Simply it is a great read.  It is filled with short stories that take only a few minutes to read.  It is filled with practical wisdom.

I met Jolene at a conference hosted by the Montana Alzheimer's Organization.  I only wish I had met her earlier.  I think her materials would have helped me create more moments of joy with my Mom.

Jolene has developed material to help families communicate better with their family members.  Her website www.enhancedmoments.com talks about her material and how to find ways to have great conversations when you visit.  Jolene has generously shared information and some handouts  www.enhancedmoments.com/mm/services.html  (look for handouts).

I loved listening to Jolene tell her stories.  She loved creating moments of joy with the people she cared for.  She loved even more, in teaching us how to create moments of joy for ourselves.  I am grateful for the moments of joy in my life.

Monday, February 13, 2012

"His Fans Hope He Can Keep the Lines Open"

I was watching CBS Sunday Morning and they did a vignette on Glen Campbell- his music and his struggle with Alzheimer's.  What a powerful testimony to Glen and his family!

I am always deeply saddened when I learn of yet another diagnosed case of Alzheimer's.  There are no "good" diseases, but Alzheimer's is insidious.  My Mother was diagnosed with it in 1998.  She passed away in 2007.

As I watched the segment on Glen Campbell.  I marvelled, at the power of music.  I also enjoyed listening to this talented man perform with the support of his family.

The Alzheimer's epidemic has been called the "Silver Tsunami".  According to the Alzheimer's Organization 5 million plus Americans have Alzheimer's today.  By 2050 that number is projected to increase to 16 million.  Right now 16 million Americans serve as caregivers, many are unpaid family members.  By 2050 the number of people in America is expected to rise in the neighborhood of 45 million.  Financially the outlook is even grimmer.  This year Alzheimer's will cost our nation $183 billion dollars.  By the year 2050 that cost will rise to $1 trillion dollars, bankrupting our health care system and countless families.

I recently read the blog Thirty Thousand Days, in one of the posts it said that a small tweak can create a big shift.  Shortly after that I read some work by Dr Gary Small in both the Readers Digest and care ADvantage publication.  The Dec 2011/Jan 201 Reader's Digest quoted Dr Small as saying,

"If everyone in the United States added just one healthy habit, it might prevent or delay a million cases of Alzheimer’s disease that would otherwise be expected to occur over five years, says psychiatrist Gary Small, MD, director of the UCLA Longevity Center. "


That phrase resonated with me.  Even if the best case scenario was to postpone the onset of the disease - what a fabulous accomplishment that would be.   The Alzheimer's Organization has a petition to the President  http://www.alz.org/petition/ calling for a National Alzheimer's Plan.  I challenge you to join me in taking action, moving from fear and denial and investing in a solution.  Together we can make a big shift by taking small actions.
  • Take care of your brain 
  • Sign the petition

Thank You,
Ruth Ferris


The last line of CBS Sunday Morning's Glen Campbell segment summed up my feelings well. He was singing Wichita Lineman and the commentator said, "His fans hope he can keep the lines open a little longer."


Posts of Interest

Dr Oz - Alzheimer's: 5 Greatest Risk Factors  http://www.doctoroz.com/videos/alzheimers-5-greatest-risk-factors

http://www.huffingtonpost.com/gary-w-small-md/the-coming-epidemic-of-al_b_734226.html

Readers Digest & Dr Gary Small http://www.rd.com/health/protect-yourself-from-alzheimers-disease/ 

Alzheimer's Foundation http://www.alzfdn.org/?gclid=CJXwgs38mK4CFaYaQgodfB2dHg 

care ADvantage publication http://www.afacareadvantage.org/
http://www.alz.org/petition/