Friends Along the Alzheimer’s Path

When you write a book, you don’t do it alone. And when you market a book, you stand on the shoulders of your friends. Through the promotion of Motherhood: Lost and Found, I have been so blessed and fortunate to make so many new friends in the Alzheimer’s world.

One of the first people I connected with as I tentatively opened the door to social media was Jean Lee. Both of her parents were diagnosed with Alzheimer’s on the same day, and her book, Alzheimer’s Daughter, is based on that experience.

Jean is one of the founders of AlzAuthors.com, a fantastic blog full of books and resources for those who are living with Alzheimer’s. She invited me to contribute a piece for the blog, and she encouraged me to be active on Twitter. She even shared about and taught me how to do Canva, a site where you can create beautiful images that fit the different specifications needed for social media.

Jean and I connected immediately because we both believe wholeheartedly that we need each other and that anyone going through the devastation of Alzheimer’s needs support. Neither of us had had the kind of resources that are now available at the time we were living with our parents’ illness, and we both wanted to provide that for others.

If you are looking for support and a wonderful selection of books and authors who understand Alzheimer’s, check out AlzAuthors.com.

I’d love to hear about who has helped you on your journey.


Thoughts on #TheLongestDay

Late May through June always tends to be an emotional time for me. I’m not sure if it’s because there are so many endings –  end of school year, high school and college graduations, reunions,  end of spring, my pansies are dying – and new beginnings – a new rhythm for the summer, lots of weddings and wedding posts on FB, new jobs, new summer flowers.

But I think it’s more. The trees become heavy with leaves, the temperatures begin to rise, humidity sets in and there are layers of memories. It was this time of year that my 80-year-old father fell and broke his hip. Two weeks later he died. It was an unexpected ending to a life I had counted on. He had moved into my mother’s assisted living facility a couple of years earlier. Not because he needed assistance, but because my mother did. My father’s presence grounded my mother in a sea of confusion brought about by Alzheimer’s.

My father helped ground my mother in her Alzheimer’s.

My father’s sudden departure stunned all of us, especially my mother, who asked repeatedly, “Where’s Wint?” until the answer, “He died,” given every five or ten minutes (because we couldn’t keep this news from her) became a macabre joke.

All of us shifted that summer. No longer could we count on my father’s presence to anchor my mother. Her disease became both bigger and smaller. Bigger because we as a family had to consider all of her needs. Mom no longer had her “better half” to provide a boundary for her, familiar partnership routines to contain her. She had already left part of herself behind. Now, who would she be without my father?

Her disease became smaller because in unexpected ways, my mother expanded. She stepped into the space that had previously been filled by my father. She seemed to intuitively understand that if she was going to live, she had to become more of herself.

After years of living with dementia, she began walking again; she interacted, and although it didn’t seem possible, she was more present.

Mom still had Alzheimer’s. There was no way she could live on her own. But to some degree, her disease seemed to reverse itself. She made the most of the moments her family was with her. She listened. She nodded. She spoke. On occasion, I noticed the old spark. Even words of wisdom.

My daughter finished ninth grade near the end of May. A couple of weeks ago, my family returned home from an annual beach trip with my husband’s extended family. I celebrated my 35th college reunion recently. Today is the summer solstice. There are so many beginnings and endings, familiar cycles and patterns, yet each day is new.

In less than a week, it will be the anniversary of my father’s death. Daddy died the day before my mother’s birthday. This year would have been her 98th. My father has been gone 17 years, my mother almost 10. Yet their presence still echoes through my life.

Mom and Daddy on their wedding day, Dec. 1949.

***

In honor of my parents and the Alzheimer’s Association’s #TheLongestDay, the Ebook for Motherhood: Lost and Found will be offered at a deep discount for the first time. For one day only, starting at 11 a.m., E.S.T., on June 21st, Motherhood: Lost and Found will be available for $0.99. Each day after, the price will go up $1.00 until the promotion ends on June 25th.

But wait! There’s more!  You’ll be able to get the audiobook (if you purchase the Ebook, or already have it) for only $7.49. as opposed to the list price of $24.95…a savings of $17.46. So hurry and get your discounted Ebook and audiobook now.

To purchase your Ebook click here, and to purchase your audiobook click here.  Thank you for your support. A percentage of sales will be donated to the Alzheimer’s Association.


A Plethora of Resources!

In honor of my mother and the Alzheimer’s Association’s The Longest Day campaign, I’d like to share a plethora of resources for those who are facing Alzheimer’s with a loved one.

Podcasts

Ready. Set. Grit. Your Life on Purpose, a podcast by Elin Barton

My Journey with Alzheimer’s, Horses and New Life

 

Straight from the Horse’s Mouth, a podcast with Paula Slater

A Conversation about Motherhood: Lost and Found

 

Alzheimer’s Speaks Radio with Lori La Bey

Dealing with Dementia: Motherhood: Lost and Found

 

Books

AlzAuthors.com – A wonderful collection of over 100 resources for people looking for books about Alzheimer’s and dementia. A group of people who have been affected by Alzheimer’s Disease/dementia have come together to share their experiences to bring knowledge, comfort, and understanding to others on this journey. Click here for the eBook sale, which begins Wednesday morning.

 

And a Special Offer!

For a limited time, starting at 11 a.m. E.S.T. on June 21st (The Longest Day), the Ebook for Motherhood: Lost and Found will be deeply discounted. And there’s more! If you’re interested in the audiobook, you’ll be able to purchase it (if you buy the Ebook or already have it) for only $7.49. as opposed to the list price of $24.95. This promotion ends on June 25th and is in honor of my mother and the Alzheimer’s Association’s campaign to end Alzheimer’s –#ENDALZ. A percentage of all Ebook and audiobook purchases will be donated to the Alzheimer’s Association.

 

General Information

Alzheimer’s Association

 


Complicated Emotions: Mothers and Daughters

With yesterday being Father’s Day, I went digging through some old photos, and I posted the picture of my father from my wedding. I found this similar photo of my mother from the same time and realized that I have never posted it, and it got me thinking. Why?

Perhaps the emotions that this photo brings up are a bit more complicated. It was easy to smile at my father and know he was looking back at me with unadulterated pride. But my mother’s emotions were not so simple and straightforward.

Don’t get me wrong. Mom was filled with great love and tenderness, and I know she was happy for me. But she was a person who felt things deeply. I was her youngest child and I was leaving the nest. She was facing a new passage in her own life.

At times, she may have counted on me as the communicator between her and my father. I understood him in a way that she never did. And while Mom and I were similar in many ways, she and I did not always see eye to eye.

As a teenager, I was frustrated by many of her outdated ways of thinking, and I pushed against her a lot. Her emotions were always near the surface, and as I look back, it breaks my heart that I could so easily make her cry.

In this photo, I see the tender mix of emotions in my mother’s face. Her deep love for me, her awareness of past wounds and that our time together as mother and daughter was shifting.

Fifteen years later, my mother would begin showing signs of Alzheimer’s. Oddly, the disease brought us closer. Mom trusted me during those 14 years when her own mind betrayed her.

When my mother thought my father had hidden her address book, that someone was having a party without her, when she seemed inconsolable, she would listen to me. I couldn’t make everything better. But I could listen and be there for her in ways I wasn’t able to do when I was younger. We were given the gift of time to connect and heal.

I am thankful for every day I had with her.

***

In honor of my mother and the Alzheimer’s Association’s The Longest Day campaign, I’m excited to announce a special discount on the Ebook version of my memoir, Motherhood: Lost and Found, starting June 21st.


More Class Reunion Reflections: Space Travel and Alzheimer’s Intersect

What does space travel have to do with writing and Alzheimer’s? At first glance, not much. But, during my 35th reunion, I had the wonderful opportunity to do a “Coffee Talk” about my memoir, Motherhood: Lost and Found, alongside Tom Marshburn, a classmate who is an astronaut with NASA. My book tells the story of my mother’s descent into Alzheimer’s at the same time I was trying to become a mother, while Tom is one of the few people who has actually walked in space.

Sally Sharp, the organizer of the event, wanted to bring the Class of ‘82 together to give us a chance to pause in the midst of our busy lives and a full weekend of activities to talk about where we’ve been and the paths we’ve taken to get to where we are today.

Davidson College students are typically overachievers, so to sit in a circle with them can be daunting. There are doctors, lawyers and business people at the top of their fields, people of faith, artists, educators and politicians who have made an impact in their communities. Yet, one of the things I found most profound about this special time with them was that we share both a history and a common place in our lives.

Our classmates were engaged and curious. They asked questions about my experience with my mother’s Alzheimer’s and what it was like to write a memoir. Deep questions. I felt heard and appreciated as I shared a brief passage from the book about my years at Davidson and discussed the 14-year period of my life when I helped care for my mother during her illness. I talked about how the experience changed me in ways I am still discovering.

To have my personal story juxtaposed to Tom Marshburn’s exciting journey into space was fascinating. My writer’s brain was busy making connections – big and small. Each of us in that room had been on a journey. Each of us had experienced joy and loss, fear and death. We’ve all taken physical trips and undergone internal shifts. We have all been at the edge of a new world as we stepped into new phases of our life.

Tom shared about how physically challenging it was to come home and deal with the forces of gravity after being in space for an extended period of time. He said even “his lips felt heavy.” I remember times when my limbs were heavy with grief, and I felt as if I’d been on another planet as I cared for my mom.

Another classmate told us how she was involved with “Dark Skies,” an organization that works to stop light pollution in cities. We all agreed how important it was for kids to be able to see real stars, rather than only experiencing space as a virtual reality. There was a pause in the discussion as our class absorbed the impact of children growing up without ever seeing the Milky Way.

Tom had us all laughing about how it can stink in a spacecraft if people don’t practice good hygiene. Another classmate shared funny stories of her mother’s dementia and how she had made a conscious choice “to laugh instead of cry.” Her husband talked about his own mother’s bi-polar illness that he only discovered upon his father’s deathbed. Despite the gravitas of the situation, his story was infused with gentle humor.

And Tom told the poignant story of how he learned about a family member’s death while up in space. Despite the cramped quarters, the news was delivered in a thoughtful, private manner. Tom shared how work became a kind of balm.

Whether dealing with death, Alzheimer’s or a space flight, each of us in that room were human and had been touched by the fragility of life. I emerged from the event feeling as if I had been on a flight with my classmates. For a short time, we had been launched into space and had the opportunity (as Tom had) to look out our small window, view our place in the world and give thanks for each other and the beautiful, small spinning planet we call home.


Recording Motherhood: Lost and Found and Reliving Time with my Mother

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Last spring, I was blessed with the incredible opportunity of recording an audiobook version of my memoir, Motherhood: Lost and Found. I spent an exciting, fun and intense week up in Syracuse, NY, in early June. In order to prepare my voice for the marathon recording sessions, I practiced reading my book for hours. I wanted to be sure I knew every word, every nuance of each line.

Reading a book aloud is obviously different from writing a book. While you might “hear your voice in your head” while you are writing, to read the words aloud takes breath and awareness and presence. I wanted to inhabit each scene, not rush through them. I wanted to remember what it felt like not just to write the words, but to live the experience.

Since Motherhood: Lost and Found is a memoir about the loss of my mother to Alzheimer’s and my desire to have a child, it was easy for me to slide back in time and feel the tenderness of those years. I could feel the vibrations of my mother’s voice as she wondered why my father would no longer let her drive. I could almost inhale her familiar scent as I pressed against her, hoping to calm her as she waited (in her confused state) to be admitted into the hospital.

Certain experiences seem to create chords within us, a deep resounding that is old and familiar. The heartache of a miscarriage, whispered words of comfort, a mother’s hug, the touch of a loved one who is slipping away. I found it healing to relive my memoir this way, even if a part of me wanted to turn away.

Giving voice to a story adds a richness to it, a quality for which I wasn’t fully prepared. At the end of my week in Syracuse, I felt both wrung out and new. The days had been full as I recorded 75- plus pages each session, taking small breaks to sip lemon water and ease my throat. I remember emerging  from the basement where we recorded, being amazed at the sun and wind and light. I had forgotten there was another day going on around me as I had tumbled back through time, reliving my own version of some of the most intense moments in my life.

I felt I had given something more through this reading. Not just an account of my losses, but a full-bodied expression of my love for the people and animals in my memoir. My parents who struggled through their final days, my husband who stood firm beside me, despite his own callings, the horses and families who filled our barn, my siblings who linked hands and hearts with me, and my precious daughter whose unexpected birth brought light and life to Joel and me.

It’s been said that writers write to discover who they are. Reading aloud Motherhood: Lost and Found was also a discovery process. Through the experience of giving voice to my own words, perhaps  I understood a little bit more about what had drawn me to spend a significant part of my life crafting this story. And putting a voice to it somehow claimed it as mine.

To listen to a sample of Motherhood: Lost and Found, click here. This audiobook was just released TODAY on Audible, Amazon and iTunes. Motherhood: Lost and Found is also available on Kindle or in hard copy here.

 


Podcast: Straight from the Horse’s Mouth

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In last week’s post, I talked about how the process of marketing Motherhood: Lost and Found has added new layers to my story. Each time I prepare for a presentation, sit down to write a press release or have an interview about my memoir, I have the opportunity to look at my relationships anew.

I treasure this time spent in contemplation about my mother and the depth of her influence on my life.  While Alzheimer’s shifted the course of our relationship in unexpected, painful and challenging ways, it also taught me to slow down, release expectations and open myself to the gifts within each moment.

My perspective has changed, of course, with my mother gone. It is much easier to see that while the care taking and the grieving seemed endless at the time, it was but for a season. I am reminded that all of us lead lives that are a series of seasons, seasons that in the conglomerate make up who we are, seasons that lead to our final act.

I have transitioned from a childless woman in her early 30s to a mother in her mid 50s who has laid her own parents to rest. Time has evaporated. The reason I continue to share the story about my mother’s Alzheimer’s and my own infertility is to provide a message for those who have suddenly become stranded on their own island of grief. My hope is to reach out a hand, to let my readers know they are not alone.

I hope you find meaning in this podcast. Thanks for reading and listening!

Click here to listen to the podcast.

To order a copy of Motherhood: Lost and Found, click here.