Was She Still Able to Read

It has been over a year since I last posted to this site.  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

Do You Know Me?

My thoughts are splintered as I think about friends and life experiences.  My husband took himself off the road for medical reasons a year and a half ago.  Unfortunately that cut our income in half.  I feel isolated as I try to figure out the money issues.  I know he is suffering and until a few months ago did not even have a diagnosis. – We found out that he has herniated disks in his lower lumbar region. 

I am always humbled when I read “Living in the Shadows of Alzheimer’s” http://sherizeee.blogspot.com.  She writes from the heart.  She uses words to paint vignettes of dark despair and love.  I remember those days.  I am so glad for the increase in resources and the internet support groups that now exist.  I wish I had reached out more when I was in the eye of the storm.

Yesterday I was at a technology class.  One of the ladies facilitating the class has been a colleague for many years.  She is a librarian at a different school.  I asked her if she had read my blogs?  She said yes my favorite is Windows 2 My Life.  “They were really funny, I was surprised.” Her comment made me laugh.

I smiled and said “You didn’t know I had a sense of humor.”

“No, I didn’t – but you do!”

How often we work and live with people yet never make deep connections.  People only see pieces of who we are.  A lot like the photos that show a small piece of a bigger picture.

Maybe that’s why I feel so fragmented.

What Are You Waiting For?

By LibraryDragon

View this Toon at ToonDoo
Create your own Toon

I was reading a writing prompt on http://www.gather.com/viewArticle.action?articleId=281474978604784 by Greg Schiller about family stories.  The writing prompt itself seems important to me. 

"Write anything you want, humorous or not, fanciful or factual on the theme of family stories."

• Tell the stories that your family retells every time they get together.
• Tell the stories that were never told.
• Tell the stories that need to be told.
• Tell the stories that will be lost if you do not tell them."

These prompts bring up so many memories. Some of them are to strong for me to even articulate them.  Some are to recent for me to share them.  Though in my heart I know that I need to share them, at least with myself.  I tried to keep a journal when I took care of mother.  I kept a surface one.  Every time I tried to write about the emotions and what was going on in my mind I couldn't put pen to paper.  

Part of it was facing the facts that I was losing one of the most important people in my life - my mother.  The disease was stole her independence, her ability to communicate it also stole her memories.  It also stole my security -  here was this woman who had been so strong and independent, and now wasn't. A part of me wondered if I was looking at my own future. 

What didn't change was her love for me. The fact she may not have known who exactly I was wasn't important.  She always knew she was loved by me.  

She once told me that we don't always get a choice between good and bad choices.  Sometimes it's between bad choices and worse choices.  Families often face difficult choices when trying to find care for their loved ones. Part of making them comfortable sometimes means re-connecting our loved ones with their past - helping them revisit their life stories.

I have decided to accept the challenge and write some of my family stories.  I hope you accept the challenge too. If you do I would enjoy hearing about it. 

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Breaking Light

Yesterday slips into memory as I ponder life, wondering about the future.  A colleague just lost her husband of 38 years.  I can only imagine the pain.  I think of her as she deals with the grief and all the demands made on survivors when one life ceases.

She is in a new school teaching a new grade.  Lots of new people that are still working separately, who have not integrated as a team.  The support system of colleagues still developing.

I read this phrase recently "what all of us need: not easy answers to difficult questions but someone willing to share the pain of the struggle".  This phrase really resonated in my soul.

This morning I stood in our front yard wrestling with current life struggles.  The morning light begins to break.  This statement rings true for me, as I reflect on my life.

Comforting Hands

I remember sitting beside my Mom, snuggling up close to her on the couch holding her hands.   She would look at me and smile.  How I miss those smiles and the time I had with her. When had she gone from strong to frail? She showed her love through her hands - cooking, touching, comforting - her hands were always busy.  I miss her and her loving hands.

I have memories of my mother's touch as a toddler.  I remember sitting on her bed looking at magazines.  She would reach over and pat my hand and go back to her own reading.  Other memories were of Mother rubbing my back just before I took a nap or went to sleep as a youngster.

Ms Nelson,  in The Power of  Touch - Fall 2010 edition of care ADvantage,  talks about different forms of touch therapy that is being developed for individuals who are frail and or suffer from dementia.  Science is also exploring the benefits of skilled touch therapy.  Touch therapy has been used to lessen agitated and aggressive behaviors.  Physically it helps with circulation, softens contracted muscles, relieves minor aches and pains and of course the age old reason for massage - to help relax and reduce stress.

When other forms of communication are challenging, physical touch can say so much.  As my mother aged and the AD progressed I relied more and more on physical touch to communicate my love. I would gently stroke her cheek or the back of her hands. Very light touches, feathery whispers.  I encouraged all Mom's caregivers to reassure her in this way.  We were always rewarded with a beautiful smile of love.  The sense of touch brought all of us comfort, as we continued to communicate. I was so very blessed to feel the warmth and love in my Mother's hands.

Touch is a universal language that most of us practice, but it is great to be validated.  It is encouraging to know that we are on the right track.  The article by Dawn Nelson - "The Power of Touch"  in care ADvantage  has lots of food for thought.  In her article she used a phrase that reached out and spoke to my heart - "intentional touch".   How frustrating and scary it must be to be experiencing communication challenges.  How reassuring intentional touch must be to those we love the most.

Opening Doors

He sends his angels.

Confusion and fear can strike at any time.  I remember going shopping one day.  Mom got very antsy while we were in Michaels, craft store.  I got her to the car and she refused to get in.  I tried coaxing, I tried bribing her, begging.  This happened before I had a cell phone, so I could not call for assistance, nor could I leave her by herself to go get help. Our standoff probably lasted 45 minutes when a silver haired gentleman approached and asked: "May I be of assistance?"

I told him my dilemma that Mom wouldn't get in the car.  I remember the angel smiled at Mom.  He spoke gently to her and said "Let me get that door for you".

My Mom's eyes lit up and she grinned.  She was very pleased to have such a gallant man open her door for her.  I was ecstatic.

He turned to me and said, " I understand, sometimes an outsider can do what we can't do ourselves."

I was so grateful for his intervention.  I always worried how are shopping trips would turn out.  I could never predict what would set her off and confuse her.

She loved visiting with people. Most of the time our trips brought her great pleasure.  The other times they brought me great appreciation for the help of strangers.  I also learned to ask other people if they wanted assistance.  Sometimes a simple gesture on our part can make all the difference in the world.

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Critical Choices

I was browsing the current copy of Montana Magazine (July/Aug 2010) in the store.  There was a wonderful article about a casket maker out of Kalispell, MT.  His business is called Sweet Earth Casket and Cradle Shop. He does custom orders.  What intrigued me was his commitment to his customers.  Several of his caskets do double duty they can be other things until they are needed as caskets.  I never thought about pre-ordering my casket.

When we faced Mom's death,  I learned a lot about funeral's and expenses. I wish I had known about his Critical Choices book. We did not have a lot of money and chose to do much of the service and preparations ourselves.  I was shocked at how many mainstream churches refused hosting a funeral because Mom was not a member of their congregation. We designed and printed the funeral program. Hired the musician.

I remember talking with my younger sister and asked what do people do who don't have the resources we do.  Mom's service was very lovely.  The Unitarian Church graciously allowed us to have her service there.  One of the hospice chaplain's officiated.  My 18 year old niece gave the eulogy. My sister and niece sang, and my uncle read a favorite poem.  A friend created a beautiful photo slideshow that was shown during Mom's service.

We were not prepared for all the hoops that needed to be jumped.  It would have been easier if we had known some of the things before hand.  Mom had always told us she wanted to be cremated.  It was not in writing however. According to Montana Law all the siblings must approve cremation if there is no written instructions.  This surprised me because I was the executor of her estate and her guardian.

One of the hardest conversations to have is end of life discussions.  It is so important.  We should be having them with our family regularly, so that people know our wishes. Aging With Dignity has a booklet called the  5 Wishes that lets you write down your wishes for end of life care if you are unable to express your desires.

It is very difficult to make decisions when you are in pain and grieving.  Talking about choices when emotions are not as high is a gift you give yourself and your loved ones.

Locating People Who Wander

What Is Project Lifesaver International?

I first read about this project in the Summer 2010 publication of Care Advantage. This is a program for individuals that wander. Each individual wears a tracking device that allows first responders and volunteers to quickly find them. In 1999 32,000 people with Alzheimer's wandered away. Every year there are numerous cases of people with Alzheimer’s, Autism, Down syndrome and others wandering off and dying from misadventure.

When your loved one is missing it is a terrifying experience and time is critical. As a caregiver I did everything in my power to keep Mom safe and I watched her like a hawk. I wrote about her wandering in a previous post, and some of the things we did to keep her safe. I tried lots of things. I even thought about tracking devices but could not afford what was out there at the time.

When I read about Project Lifesaver International, I was thrilled that someone had come up with a tracking device and a way to include first responders into a program to quickly locate people who wander. They even have some family stipends available.

According to Project Lifesaver:

“The U.S. Department of Justice – Office of Justice Programs – Bureau of Justice Assistance has awarded federal funding to assist in education, awareness, equipment, and public policy efforts to help expand Project Lifesaver’s lifesaving program across the country – directly helping individuals that suffer from Alzheimer’s disease/dementia who wander.

Project Lifesaver is a network of first responders who combine the power of simple, effective tracking technologies with proven search and rescue techniques to find your loved one safely and quickly, should they wander. Now, for a limited time, up to 1,800 families may enroll in the program at no cost, thanks to a grant from the U.S. Bureau of Justice Assistance. This is our family stipend program.”

Contact Scott Nester for more information about the stipend program – snester@projectlifesaver.org or 1-757-546-5502 Ext 112.

Raising Awareness

45 states and 1,100 agencies are involved with Project Lifesaver. It is important to get your local community involved if it isn’t already. Regardless it is important to get this information out to families who have loved ones who wander. It is one more tool you can use to protect those you love who can’t protect themselves. There are grants available to communities to set up this program if one is not available. The great thing is that it is currently available in the United State, Canada and Australia. Please encourage the agencies you work with to explore this program and help bring it to more communities. For further information contact www.projectlifesaver.org or call 1-877-580-5433

Resources for living Gluten Free

If you have Celiac disease life is quite a challenge. My friend Carol has shared her worries and concerns about another friend who is gluten intolerant. I had never thought much about it until she shared her concerns. Since then I have discovered make-up, dog food, lotions, and even some medications may all have gluten in them to ambush the unwary.

Celiac disease (gluten intolerant) is an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats.

I recently joined a blog hop and found some great blogs Lisa's Gluten-Free Advise . She has a directory of other gluten-free blogs, restaurants that serve gluten-free cuisine. It is a rich source for people living with this challenge.

I looked at the recipe for her gluten-free Hawaiian Pizza it looks very tasty. At Lisa's site I clicked on the blog Gluten Free Taste of Home. I am so very excited at all the resources I found. If you or someone you know is gluten intolerant please pass on these great blogs.

Digital Storytelling and Our Family History

Story mapping is adding our own photos and stories to digital maps so other people can read them. One of the benefits that I can see is the connection between generations as we go through the photos and hear the stories. Then transcribe them into a digital format.

Research shows that photo albums often unlock memories of people who struggle with talking in the here and now. What a great way to interact. How many great memories they might revisit when they see their old house on Maple Street.

I am including 2 videos about Historypin. Historypin was developed by We Are What We Do in partnership with Google. They say Historypin is "Action 132: Share a Piece of Your History. Part of our campaign to get generations hanging out."

Take a look at the video's. Then invite someone to enjoy the magic of a memory as you go through your pictures. Telling stories so we can all remember.

Reading NPR's Update on Tom DeBaggio

I was blown away by the series Melissa Block wrote about Tom DeBaggio and his experience with Alzheimer's disease.

The early interviews were started in 1999, after Tom was diagnosed with Early Onset at the age of 57, by NPR's Noah Adams. All of the interviews were very poignant.I made some very personal connections as I remembered watching my mother succumb to Alzheimer's.

Tom wrote two books after he was diagnosed. I was particularly moved by an excerpt from "Losing My Mind" by Tom DeBaggio.

"The struggle to find the words, to express myself, has become insurmountable. I must now be done with writing and lick words instead. I will soon be stripped of language and memory, existing in a shy and unsteady forbearance of nature. I am on the cusp of a new world, a place I will be unable to describe. It is the last hidden place, and marked with a headstone.

I must now wait for the silence to engulf me and take me to the place where there is no memory left and there remains no reflexive will to live. It is lonely here waiting for memory to stop and I am afraid and tired. Hug me, Joyce, and then let me sleep."

Such powerful writing as he describes his final journey into the darkness. I am humbled as I read the interviews. I am moved to read both books and continue to learn about this disease. Because you see I am afraid that it may well be my own future that I am reading about.

Do You Know About 2-1-1?

Before today I had never heard of 2-1-1. The United Way has a website that gives the history and talks about the importance of 2-1-1.

This number serves as a way to coordinate community services. If you call the number the person who takes your call will help you work through the maze of services that are available in your community. In an emergency it helps people determine what services are available and how to get help.

I went to the United Way website that features 2-1-1 http://www.liveunited.org/211 I learned that some states have had this service since 2000. In 2004 after the Katrina and Rita disasters FEMA encouraged states to implement this service in all states.

At the website the United Way is encouraging people to contact their Senators and Representatives to support passing legislature concerning 2-1-1. I would encourage you to find out more about this program.

If you have used this number or know more about it would you leave a comment telling about your experience?

June 15 - World Elder Abuse Day

Personally I think the Tag should read "Prevent Elder Abuse Day". According to the US Agency on the Administration of Aging 5 million seniors will be abused in the United States this year. That is a frightening statistic. Elder abuse comes in many forms: financial, physical, emotional, sexual and by neglect. They also say only 1 out of every 5 instances of abuse is ever reported.

There is a website that provides ideas on how you can get involved http://www.centeronelderabuse.org

How Did Father's Day Start

Father's Day is celebrated today around the world, in at least 50 countries. It got it's start when Sonora Smart Dodd was listening to a sermon, in 1909, recognizing Mother's Day.

She felt that fathers deserved equal recognition. Sonora was inspired to help create a day that recognized fathers. She and the Rev. Dr. Conrad Bluhm - minister at the Central United Methodist Church in Spokane, WA. The approached the Spokane YMCA. The first Father's Day was celebrated June 19, 1910.

In 1924 President Calvin Coolidge recognized Father's Day and urged other states to do likewise. In 1966 President Lyndon B. Johnson proclaimed the third Sunday in June as Father's Day. In 1972 President Richard M. Nixon signed a proclamation permanently observing Father's Day on the third Sunday in June.

Father's Day will celebrate 100 years June 20, 2010. Commemorative activities are planned in Spokane, WA check out www.VisitSpokane.com

My Mobile Witness

I was going through some archived blogs on ilearntechnology and I found My Mobile Witness. It is a free service that you can sign up for. It is designed that if you are in a scary situation you can take a picture and send it to them. The picture can only be retrieved by law enforcement or a subpoena. They recommend taking pictures before a blind date, on unfamiliar trails take a picture of the sign.

It seems to me your family needs to know about it in order to let law enforcement know to check here for possible leads. But as I was reading about it I th ought about the times my Mother wandered off and before I kept current pictures of her to show to the police.

I also thought of my niece and many young people who in their daily living may be in harms way. I thought of the many hours it might save that would make a difference in finding them quickly.

Take a look at My Mobile Witness


and let me know what you think.

Living With Regrets

Today June 10, 2010 is the 3rd anniversary of my mother’s death. It is still so very difficult. In the beginning I had a very hard time moving past the pain and grief. I would go on - only to be ambushed by overwhelming waves of despair and loss. My tears turned to a deluge, flooding the present.

I felt my life was frozen in time. I was buried in my loss and pain, holding myself prisoner unable to free myself from the grief, consumed by regret.
Recently my friend, Carol, commented how lucky I was. She said, “Your mother was very loving and supportive. Even in her illness you knew she loved you. Some of us never know that kind of love from a parent.”

It is true, I am blessed. As I look back I have some wonderful memories.

I think part of the reason it took me so long to work through the pain was the regret. Mom was in a care facility the last 6 months of her life. She lost a lot of weight and became dehydrated. The hospital was unable to help. I regretted that when she needed me the most I had not been there. I had failed her.

I know that Alzheimer’s affects a person’s ability to swallow. My mother had a lot of dental problems that made chewing painful. I know intellectually that I did the best I could. Emotionally, I blame myself for being unable to take care of her. I know that the facility she was in did the best they could.

December 2006 I was hospitalized with Pancreatitis caused from gallbladder problems. I was in the hospital for 9 days. I did not have enough people to run 24 hour care while I recovered. So we had to move her to a private care facility. I wanted to bring Mom back home as soon as I recovered.

I returned to my teaching job in February. It was taking me much longer to recover than I had expected. Even when I returned to work I was unable to lift my mother by myself. I knew I was unable to care for her at home yet. All mother’s caregivers had other jobs by this point. Knowing this, I had planned to start hiring and training new caregivers as soon as school was out the end of May. Unfortunately, bringing Mom back home was not to be. She was hospitalized Saturday because of dehydration and died about a week later.

I still have regrets. There are days the tears cascade down my cheeks as I remember how tiny and vulnerable she was. I am learning to live with my regrets. Some days I just want to shout - "I want my Mom back!"

You Always Need a Place to Start

My mother loved to cook. She could make a feast fit for a king out of nothing. Mom worked as a cook on a ranch for several summers from 1977 through the early 1980's. She cooked for John Medearis and his family (4 sons 16-25)and usually a hired hand or two.

I had come for a visit during her second summer. We were just finishing lunch. Johnny was in his early twenties and was grumbling about eating to much. My mother smiled and told him he could leave the table whenever he chose. He just had to push away from the table.

I remember this good looking slender young man looking very anguished at her comment. Finally, he responded, "I dieted all winter to loose the weight I gained last summer."

Mom just laughed. It thrilled my mom that these hard working young men gained so much weight eating her cooking. They were never late to a meal! The times I visited the ranch, the boys would usually come in a little early hoping to get a head start on the meal before the others got there.

Mom had a collection of recipes and a few treasured cookbooks. Watching Mom cook - she would add some of this and some of that. I remember asking her why she needed a cookbook when she never followed the recipe. She looked puzzled that I didn't know. Patiently explaining "You always need a place to start."

I treasure the recipes that are in her handwriting and the little notes she would sometimes jot down. In some of the cookbooks she had glued recipes she found elsewhere and liked and made comments about other things that were happening. For a Christmas Present I scanned the recipes Rita and I have, and then retyped them and made copies for all the grandchildren.

Cookbooks are great sources of family and cultural history. Imagine my delight when I found a link online to "Feeding America: The Historic American Cookbook Project". This collection has also been added to the Library of Congress site.

What I Learned Caring for My Mother

Today would have been my Mother's birthday. I have been reflecting on her life and my family. As with many reflections I can see and understand things better in hindsight than I did in the moment. Perhaps it is because I gained more tools from the actual experience for dealing with daily life.

Care-Giving has been a complex part of my life. It has been diverse and individual as there were people we interacted with. There is no right way nor is there an easy way to take care of someone experiencing Alzheimer's Disease. It is stressful for all concerned. My younger sister was a great strength to me as we dealt with how Alzheimer's affected our Mother.

I think that a crisis brings up old unfinished business between family members. It acts to bring things to the surface. Things we have been stuffing most of our life. Unfortunately most of us struggle with the resurfacing of painful memories and issues when we least know how to deal with them. We often don't know how to mend the cracked places. In some cases the fissures widen as our world rocks from the shocks of our personal earthquakes and only rubble remains when the aftershocks settle.

"An earthquake is caused by a sudden slip on a fault. Stresses in the earth's outer layer push the sides of the fault together. Stress builds up and the rocks slips suddenly, releasing energy in waves that travel through the rock to cause the shaking that we feel during an earthquake." Earthquake Facts


The stresses in our individual lives and the stresses as a family rub against each other until things open up releasing energy that rocks our world. In biology stress refers to the consequence of the failure of an organism – human or animal – to respond appropriately to emotional or physical threats, whether actual or imagined.

What Causes Earthquakes
"Parts of the San Andreas fault system adapt to this movement by constant "creep" resulting in many tiny shocks and a few moderate earth tremors. In other areas where creep is NOT constant, strain can build up for hundreds of years, producing great earthquakes when it finally releases."

Yesterday I was telling my husband about experiences with my older two sisters and how I viewed their treatment of our Mother. Those family connections had been broken and severed for many years. And with Mom's death became final.

As I look at lessons learned, I have tried to use this insight in a positive way with the extended family that is a part of my life now. Like others before me and others who will follow me, it is a work in progress.

What I learned from my Mother was no matter what, she loved all her children and she mourned that her relationship with some of her children was estranged. Naomi Feil said people with Alzheimer type dementia who are in the final stage of life, are trying to resolve unfinished issues in order to die in peace. In the workshop I attended she encouraged us to start at this moment to take care of any unfinished business in our own lives.

I have learned that sometimes our relationships require us to make a decision. Are we going to work on changing the dynamics of the relationship with the hope of making it better, or are we going to move on?

Legacy Project - Across Generations

The Legacy Project has three banner programs: Across Generations, Life Dreams, and Our World. The Across Generations is a project that explores the connections with others. It encourages closer relationships between generations. They strive to examine ways to celebrate the special relationships that can be forged between young and old. The goal is to develop closer relationships between generations of family and community.

The center piece book for Across Generations is the book "A Little Something" (Softcover edition is titled "Something to Remember Me By"). the website has many free articles and activities. They also list available workshops as well as other support materials.

The Legacy Project has an annual contest"Listen to a Life Essay Contest". The next contest starts September 2010. Go online and read some of the winning essays from past contests. I am really excited about this program.




Something to Remember Me By : [An Illustrated Story for Young and Old

Finding Unclaimed Money

I have always enjoyed treasure hunts even when I don't find the treasure. This morning my husband and I were watching Good Morning America. One of the segments was on Unclaimed Money. These are the five sites they recommended checking. I didn't find any money but I knew several people who were listed.

http://www.MissingMoney.com


http://www.unclaimed.org

http://pbgc.gov (pension)

http://irs.gov

http://treasurydirect.gov


Happy hunting.