Thanks For New Friends

Still feeling the turkey and stuffing bloat, yet hiding from the claustrophobic, fight-to-survive Christmas shopping, I’m opting to warm up to the end of the year by munching on left over apple pie and listening to Christmas music with a pot of turkey noodle soup simmering in the background.

As December peeks round the bend I’m thinking back on November, still counting my blessings. At the top of my list is family, but not far behind is a small group of four people I’ve never met. Even though I’ve never stood in their presence, touched their hands, or shared a hug, these four people have become very important in my life. It’s amazing, with technology, how we can come to know another and call them friend.

Last January, on what would have been my parents’ 67^th wedding anniversary. I published Alzheimer’s Daughter after I’d worked on it for four years. The story wouldn’t leave me alone even though I’d tried to stop writing many times along the way. It painfully whispered out of me, as though I was telling a friend about my journey in hushed tones with tremoring hands over coffee. The manuscript would wake me up in the night, talk to me as I was driving, grant me powerful phrases when I was cooking, doing laundry or running errands. I joined a writing group and a seasoned editor thought the story was worth telling. She helped make it something that people might want to read. But even as I pushed the ‘publish’ button, I was afraid I might be struck by lightning for telling such a private story.

Reviews started rolling in. I braced myself every time I saw a new review. I was shocked because they were kind and compassionate, thanking me for writing, for sharing a story that could help others.

In May, Marianne Sciucco, author of Blue Hydrangeas contacted me, saying she’d read Alzheimer’s Daughter and wondered if I’d like to collaborate through June, Alzheimer’s Awareness Month. I told her I’d read a lovely book by Vicki Tapia, Somebody Stole My Iron, and we asked her if she’d like to join us. Through collaboration, we learned so much about reaching out to caregivers and others interested in Alzheimer’s and dementia. We emailed nearly daily, and began using Google Plus to live chat together.

We stayed in contact as the months ticked by and read everything we could find written in a positive tone. We were struck by the beauty of What Flowers Remember by Shannon Wiersbitzky and On Pluto by Greg O’Brien. They joined us for a November collaboration to raise awareness for Memory Screening and Caregiver Appreciation Month.

Hopefully we’ve accomplished good for the cause of Alzheimer’s and dementia, but on a personal level these people have become dear friends to me. They are the people who share my story, know my journey and have given me the courage to come out of the dark corner in which I hid, afraid to speak about the personal disease which takes a toll on so many families. They’ve pushed me to speak up, move the disease into the light, and help change the voice of Alzheimer’s.

Fluff-flies

Butterflies or fluff-flies as my youngest grandchildren call them have taken on special meaning for me since my parents’ passing.

My mom and dad were believers that faith was mirrored in all of nature, so when my parents neared the hospice stage at the end of their lives I envisioned them transforming, withdrawing into the shell of their cocoon. I knew their spirits were fighting their way out of that old shell to fly away to life eternal.

You could say I have a penchant for butterflies. I’ve collected butterfly pins, earrings, necklaces for family and friends, and when I see people wearing a butterfly I always compliment the unique design.

Recently I found the tiny earrings pictured above. I’ve worn them non-stop for weeks. Every time my little grandchildren see them, they touch them and say, “Fluff-flies.” When I catch a glimpse in the mirror, I think of Mom and Dad, the two butterflies that flutter in and out of my life.

I’m reminded of this gospel hymn by Alfred E. Brumley

Some glad morning when this life is o'er, I'll fly away;

To a home on God's celestial shore, I'll fly away.

I'll fly away, Oh Glory

I'll fly away;

When I die, Hallelujah, by and by,

I'll fly away.

When the shadows of this life have gone, I'll fly away;

Like a bird from prison bars has flown, I'll fly away.

I'll fly away, Oh Glory

I'll fly away;

When I die, Hallelujah, by and by,

I'll fly away.

Just a few more weary days and then, I'll fly away;

To a land where joy shall never end, I'll fly away.

I'll fly away, Oh Glory

I'll fly away;

When I die, Hallelujah, by and by,

I'll fly away.

May you feel the soft touch of butterfly wings in your own life.

Caregiving, Simple Word, Daunting Task

Caregivers. We are all caregivers. As humans we care for one another, or we should. Most especially, we care for those close to us.

·      As a youth I loved and respected my parents, a form of caring for them in my child-like way.

·      As a young wife and mom, I cared for my husband and children.

·      As a teacher, I cared for my students.

But the logical timeline of maturation, love, and respect tipped topsy-turvy when my parents reached their eighties. They slowly began to lose their minds and act irrationally. I became concerned for their safety. I sought out medical treatment, and they were both diagnosed with Alzheimer’s disease on the same day.

Over the next decade I became the parent to my parents. I gradually, painfully made decisions they opposed in order to protect their well-being. In the process, I felt guilty taking everything away from the people who had given me everything.

As I struggled to keep the pieces of my life together­––my marriage, my own family, my career and the care of my parents­­––I grasped for resources, but found few. I am a positive person, therefore I sought uplifting resources, but much of what I read was written with a negative undertone. I found books about the ill treatment of a caregiver by an unreasonable loved one, about adult siblings who fought, and about children who had grown up with angst toward a parent continuing through caregiving years. Even so, every time I found a kernel of truth, I felt as though I could keep going, someone else was brave enough to share this upside down world as well.

I came to the conclusion that sharing my story might help others.

Alzheimer's Daughter details my journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.

Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia.

The five of us have joined together to recognize those unsung heroes, caregivers. From each other we learned that all of us felt compelled to write our books, hoping to make a difference…hoping that we might make the pathway of others traveling this road a little less painful and lonely. Perhaps you will find comfort and support within our pages.

Somebody Stole My Iron by Vicki Tapia

Vicki details the daily challenges, turbulent emotions, and painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe her book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer's/dementia patient's family.” Vicki wrote this story to offer hope to others, to reassure them that they’re not alone.    

Blue Hydrangeas by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. This work of fiction is based upon her care for the elderly. It's a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer's and Jack becomes her caregiver.

What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a small-town preteen girl, Delia, whose elderly neighbor, Old Red Clancy is failing mentally. The aged gentleman has to be placed in a care facility, but Delia will not let him wither away. She devises a way for the whole community to remind Old Red how important he has been in all of their lives. 

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Diagnosed with early-onset Alzheimer’s, Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself a sliver at a time while still fighting to live with Alzheimer's, not die with it. 

National Memory Screening Week

On my next birthday I’ll be 61 years old. Both of my parents died of Alzheimer’s. I wrote about my journey as their caregiver in Alzheimer’s Daughter. Does the thought that I might become afflicted with the disease haunt me? Yes. It niggles in the back of my mind.

I’m lucky to live in a small town and still doctor with a Marcus Welby, M.D.-type family physician. This man has treated four generations of my family; my parents, myself, my children, my grandchildren. Needless to say he knows us well.

After Mom and Dad died, I asked my trusted doctor about my risk. He answered since my parents had not been diagnosed until they were in their mid-eighties it was not really a part of my family history. He reasoned if everyone had parents who lived into their eighties, nearly everyone would have a history. This reassured me, but still the thought persists, especially when I can’t think of a word I want to use, or lose my train of thought in a conversation.

November 1-7, 2015 is National Memory Screening Week, bringing awareness to the positive aspects of screening and attempting to remove stigma. When I visit my doctor for my yearly physical, my blood pressure is noted, I’m prompted to have a mammogram, vials of blood are drawn, I’m questioned about diet, exercise and assessed for depression. All of these are types of screening. Why not routinely offer a Mini Mental to patients at age 60-65 to collect some baseline data? Comparisons could then be made as we age?

I know, health care costs are already prohibitive and many people are afraid to know. As for me, I’d appreciate the baseline data. In the meantime I keep exercising, taking my fish oil and eating handfuls of spinach and kale.

If Alzheimer’s has touched your life, and you seek connection with others who have shared this journey, below are five books written from five perspectives about the disease.

All of us felt compelled to write our books, hoping to make a difference…hoping that we might make the pathway of others traveling this road a little less painful and lonely. Perhaps you will find comfort and support within our pages.

Somebody Stole My Iron, by Vicki Tapia

Vicki details the daily challenges, turbulent emotions, and painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe her book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer's/dementia patient's family.” Vicki wrote this story to offer hope to others, to reassure them that they’re not alone.    

  

Blue Hydrangeas by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. This work of fiction is based upon her care for the elderly. It's a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer's and Jack becomes her caregiver.

What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a small-town preteen girl, Delia, whose elderly neighbor, Old Red Clancy is failing mentally. The aged gentleman has to be placed in a care facility, but Delia will not let him wither away. She devises a way for the whole community to remind Old Red how important he has been in all of their lives. 

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Diagnosed with early-onset Alzheimer’s, Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself a sliver at a time while still fighting to live with Alzheimer's, not die with it. 

  

Alzheimer's Daughter by Jean Lee

My memoir details my journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.