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

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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