World Alzheimer's Day

I've got to be honest, I did not know today was World Alzheimer's Day until I logged into my Twitter account this morning. 

On the heels of my first Alzheimer's Walk last Saturday, another day to raise attention to Alzheimer's/dementia sparks many thoughts. 

First, I'd love to recommend two books in support of caregivers. 

Vicki Tapia's Somebody Stole My Iron will touch your heart as she describes caring for both parents, first her father, then her mother as  her mom's mind dissolved away from the disease. Vicki's book describes the sadness caregivers experience as we watch the glow of recognition leave the eyes of the ones we love, as they become a shadow of themselves. 

Link to Somebody Stole My Iron

Marianne Sciucco's Blue Hydrangeas is fiction based upon Marianne's years of  experience working with Alzheimer's/dementia patients and their families. Her characters, Jack and Sarah, own a New England bed and breakfast until Sarah becomes confused with reservations and finances and is admitted to the hospital. Upon her discharge, Jack is faced with making difficult decisions for the love of his life. 

Link to Blue Hydrangeas

I read a blogpost in my Twitter feed this morning written by Pippa Kelly, @piponthecommons, a well-know Alzheimer's/dementia advocate from London, entitled ""Dementia's Where Cancer Was 40 Years Ago." Is It?" The post is well worth the read. I was intrigued by Pippa's conclusions, 

"If dementia is anywhere near where cancer was 30-40 years ago, it's in the realm of stigma reduction. The more we talk about dementia, the more we demystify it, the less fearful and more confident everyone becomes." 

Her term 'stigma reduction' will stick with me. 

I guess that's why there are organizations dedicated to Alzheimer's/dementia awareness. 

That's why we set aside days to ponder, pray, wish and strive for scientific advances and treatments. 

That's why we write blogs and books to share support. 

We do all of this to reduce the stigma of a disease that is painfully personal and private.

Thank you, readers, for all you do in your lives to bring closer the day that Alzheimer's and all dementias will have effective treatments and better survival rates like cancer does now.

Otherwise, you know, nobody's getting out alive.

Walking to End Alzheimer's

This year, for the first time, I participated in The Walk to End Alzheimer's sponsored by the Alzheimer's Association: Greater East Ohio Area Chapter. 

As I walked today with a friend who asked me to join her team, we talked about our journey. Both of us agreed that it was difficult to keep our heads above water while seeking to make the best decisions on behalf of the people who were our moral compass for our entire lives. But in the years since our parents' passing, the experience has never left us. Now we can focus on offering support to those going through the journey. 

In a sea of hundreds of other people wearing purple, we carried flowers. Purple signified the loss of a loved one, yellow designated current caregivers, supporters of the cause carried orange, and most importantly blue indicated people diagnosed with Alzheimer's or dementia. Little children, teens, adults, boomers and elderly, as well as a few canines walked. Most touching to me was the little girl who skipped in purple shoes, and a woman my own age who pushed her tiny withered mother the entire way in a wheel chair. Whenever this lady encountered rough terrain, or cement steps, strapping teenage boys helped lift her mother's chair.

This event demonstrated the best in a community coming together for a good cause and multi-generational caring. I hope to participate  every year. Thank you Alzheimer's Association for making an outreach like this possible.

An Alzheimer's Love Story

Last night I attended a picnic in my hometown and had the opportunity to visit with one of my dad's buddies. I was surprised when he told me he'd just finished Alzheimer's Daughter. 

I braced myself, preparing to be scolded for writing about the disease which took both of my parents'. Instead, he gave me a thumbs up and said, "You did a good job, Jean." 

I felt my unease replaced by a softness as I whispered, "Thank you for your kind words." 

He continued, "No one really understands what a caregiver goes through." 

During the four years I wrote, I envisioned my readers to be women like me, caregivers, caretakers, family members struggling to make good decisions for their loved ones.

Last week I received a note from a young woman in her thirties. Her grandfather recently died of Alzheimer's. She said Alzheimer's Daughter helped her understand what her mother had been going through as a caregiver——the things her mother never spoke of.  She also realized what she herself might go through if a caregiving role was thrust upon her at some future point. 

We never know who will read what we write and I never envisioned Alzheimer's Daughter having meaning for those older and younger than myself.

I've become convinced that caregiving is not something we prepare for or talk about enough. Countless daughters, sons, spouses, and partners of Alzheimer's try to give our best to the people who have given us everything, yet we remain shrouded in silence, not connecting with others who share our experience and could offer us support.  This daughter is thankful and humbled by your feedback. 

Timelessness of Music

Good music has a timelessness, regardless of the date it was released.

I love pop music. I'm not a classical girl.

Pop music energized my classroom when I taught. I'd download pop songs for every area of the curriculum, and kids counted on me to have the hits rolling when they be-bopped into the room. In collaborative learning situations, I'd say something like, "I'll give two songs to find the answer." The music would play in the background and as the second song wound to a close, students knew they'd better wrap up their group conclusions, and be ready to share with the class.

Music helped me through my years of caregiving for my parents. When we moved my mom and dad out of their home, my nephew gathered their CDs and made MP3 digitalized copies for family. My playlists run in random order, so at any time, I might hear top 40 songs bookended by songs from more than half century ago.

When I drive I like to keep up with pop music by listening to top 40 stations. I'm always amazed by the ability of today's music to bring back images and memories of my now deceased parents.

Since mom and Dad's deaths, I've been especially touched by Coldplay's "Paradise" and "A Sky Full of Stars." In my mind, these songs speak about pondering the eternal and the lasting love between two people that can endure past death, forever.

Most recently, I look forward to hearing Ed Sheeran's "Photograph."
http://youtu.be/SPKBtZHuzKY
(Sorry about the ads at the beginning of the video)

Granted my mom didn't wear ripped jeans, but Mom and Dad did, and I do

Keep their love in photographs, 
Where their eyes were never closing, 
Their hearts were never broken, 
Time forever frozen still. 

To me the most powerful line is, "It's the only thing we take with us when we die."

Thank you, Ed Sheeran, for recording this tender, timeless song.

The Senior List

Many thanks to The Senior List for including me as a guest on their blog.

http://www.theseniorlist.com/2015/08/alzheimers-daughter-meet-author-jean-lee/

Laundry

Funny how a picture can trigger memories. 

I came across this image of old clothespins and was transported back to half a century ago, watching Mom do laundry.

We lived in a big old house built around 1920. When Mom and Dad bought the house they added indoor plumbing. The backroom, painted 1950s hospital green with a speckled linoleum floor, housed the chest freezer and the wringer washer. 

Clothesline strung back and forth from side to side across the room and collapsed drying racks waited to be useful on rainy days, but mostly Mom put clothes through the wringer washer into dilapidated peck baskets and hauled the wet wash outside to the backyard where two clothesline posts looked like wooden crosses stuck in the ground with two lines of rope strung between.

The pouch which held all of the clothespins was the bodice of one of Mom's dresses cut off and sewn at the waist and sleeves, then sewn to a hanger. As the line weighed heavy while mom pinned wet clothes she'd prop two wooden poles, taller than little-girl me, notched at the top, under the clotheslines so our clothes, sheets and towels didn't drag on the ground. Breeze caught the clothes and puffed them out like sails, the lines swayed. 

If a rainstorm cropped up, we'd run outside, and pull the laundry off the line, rehanging it in the backroom. I'd play peek-a-boo in and out of the laundry outside, but when it hung in the backroom during a dark, rainy afternoon, it looked like haunting ghosts. 

Honestly, I think clothes dried faster on a sunny, breezy day than they do in the clothes dryer. And oh the smell——so heavenly to crawl into bed at night in those sheets. Granted, the towels were a little scratchy, and most everything had to be ironed.

About all that ironing——Mom had a tall coke bottle she'd fill with water topped by a cork with a sprinkle head. She'd dampen the wrinkled clothes and wrap them in a plastic bag storing them in the refrigerator until she had time to press them. Often I'd come home from school to find her standing, ironing while watching General Hospital. 

Happy to have these memories float through my mind today. Kinda wish I had a clothesline, because today would be a great day to hang out the wash. And, oh what a great night's sleep I'd have. 

Does this post trigger any memories of the old times for you? 

Family Vacation

Last night I returned from a family vacation. Twenty-two of us on my husband's side of the family went to the gulf coast in Florida to spend a week together with my mother-in-law who is 88 years old. Both of our children and our five grandchildren attended.

While in Florida, we were also able to see my sister and her family, her two children and five grandchildren. 

So many memories of happy times with my parents, when our children were little, when time stopped for family, floated through my mind because all ten of my parents' great grandchildren were together. 

While away, I unplugged. It felt good to disconnect from media, play Uno with my 8-year-old granddaughter, and zoom trucks and read books with the little ones.

I always love to become immersed in a good book while vacationing, but I didn't have much time for reading between making peanut butter sandwiches and mac and cheese. 

Most of my book choices relate to Alzheimer's and personal experiences with the disease. Book covers draw me in. Quite some time ago, I'd downloaded a book with a stunning cover entitled What Flowers Remember by Shannon Wiersbitzky. The main character is a middle school girl whose life is affected by Alzheimer's. I completed the book on the flights to and from Florida. At the risk of being rude to my seat mate on the return flight, I told this very friendly woman that I was almost done with a wonderful book. She was a reader, so understood and wanted the title so she could also download. 

Here's my review. 

Link to the book