Finding Hope in the World of Alzheimer’s

After attending the Alzheimer’s Association Dementia Education Conference here in Charlotte, I am lit from within with a fire, a desire to make things better, to provide a sense of hope for the sea of people I saw whose faces reminded me of the Sargasso Sea that I rowed on for so many years while caring for my mother who had Alzheimer’s.

Don’t get me wrong. I didn’t start out inspired. In fact, a part of me wanted to curl up and go to sleep, not face a full day of being reminded what it looks and feels like her to care for someone with dementia.

I didn’t want to go back to that emotional place. It was hard and lonely. I didn’t want to think about other people who are facing this pain. I didn’t want to think about my mother, how I had become an orphan in a sense before my time.

It was easier to simply put a lid on all those emotions and hide them somewhere in my heart.

At the conference, I was one of four writers in the Authors’ Corner. I was there to sell my book, offer people the opportunity to win a free Kindle version of Motherhood: Lost and Found, hand out flyers about AlzAuthors (a group of 100 authors who have banded together to provide resources for caregivers in need) and share pieces of my story – how my mother showed signs of Alzheimer’s when I was in my early 30s at the same time I was trying to become a mother.

The Author’s Corner

On the drive to the conference I prayed that God would lift me out of the swamp of my past emotions and use me as a vessel. I had no idea how this would happen. And to be honest, if I had followed my own feelings, I might have stayed in bed.

After all, going to the conference reminded me of my younger self. Twenty years ago, I went to this same conference, looking for help, seeking those who would understand, picking up brochures about places where my mother might one day be cared for. The landscape of caregiving is so different now — much brighter, with so many more options and offerings.

But what I remembered most from that long-ago conference was the sense of heaviness I carried within me. My mother was not the woman I grew up believing she would be, and I had no way of knowing how to move forward in this dusky night we both seemed to be trapped in.

There was a heaviness inside as I cared for my mother.

I came away from that day so many years ago wishing that I had a book to share with the other attendees. I had already begun working on mine, but it was nowhere near finished as my mother’s story continued for at least another decade. But, even then I sensed that my story was what I could share with others. It was the thing that might bring help and hope to people who were suffering, even as I was stumbling on my own path.

This year I came to the conference not as an attendee but as an author with boxes of books as my gift. My memoir was skimmed from the 14 years of pain and loss and grief, distilled in such a way that hope and life and light rose to the surface. My faith evolved over that time period. The hardships filed away certain rough edges of my personality. My heart was changed in ways I am grateful for, even though the process was torturous at times.

The 2017 conference brought some special surprises. I ended up sharing a table with a lovely, warm-hearted author and former nurse, Mary Ann Drummond, who has written Meet Me Where I Am, a compassionate guide about caring for those with Alzheimer’s. Her tender approach was exactly what I would have wanted for my mother. I also met Barbara Ivey and Carol Howell, two other wonderful authors who are supporting others through their books.

It was so inspiring to talk with Brian and Mary Ann.

Midway through the conference, Mary Ann and I were joined by Brian Kursonis, one of the most inspiring people I’ve ever known. Brian is 56 (my age), has early-onset Alzheimer’s and has become an important spokesperson for those dealing with dementia. Intelligent, soft-spoken and self-effacing, Brian is stepping up to the challenge of reaching millions of people in need.

How could I not be encouraged and deeply moved by these amazing individuals?

I wanted to grasp the hands of all the attendees who walked by whose faces were filled with sorrow, squeeze their palms, look into their eyes and say there is more…. There is hope… This is but a moment in time. I see you, but more importantly God sees you and He sees your loved one. It is okay, even good to cry. Your deep sadness is a stamp of your love. You are not alone, even if it feels that way. Each of us here at this conference has a story, each of these stories must be held preciously. Let us share them with one another and watch our burdens grow lighter. If we link hands and spirits, we will find room for hope.

 

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Fall Leaves

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It’s a beautiful fall day, crisp and cool, and the sun shines brightly through amber, maroon and burnt orange leaves. I suddenly had to grab my camera and take photos of the horses with this new scenery. The horses are beautiful all the time, in all weather and with every background…but the changing seasons reminds me of the glory of these animals, the natural setting they inhabit, the farm we are blessed to call home.

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Fall is a time of change, the outer world is shedding itself, leaves that are no longer living flutter brightly through the air. Remember me! Remember me! they seem to call out, the way my own memories flash and twirl through my mind. My mother’s awe at the water-colored sunsets on the coast, the winking of gold and silver in the waves, the bleeding of peach into lavender cloud. My daughter’s glee at turning five, the birthday she’d dreamed about for a year, asked every afternoon after preschool, Is it here yet? Yes, my sweet one, it’s here and gone…and here again as the leaves of memory circle and float.

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I will cherish these memories and loved ones as long as possible, yet, at the same time, I must open my hands, release my grasp on things that are not mine to hold. Eight years ago next month, my mother stepped beyond my reach into a golden glow. That same day, my sweet girl rained flower petals down the aisle of a church, paving a path of fragrance for Emily, the bride.

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Yesterday, Sydney slipped behind the wheel of my car to practice driving up the dirt road to our house. When she was a flower girl, I never dreamed her feet would reach the pedals. But they did. And the years have passed. She stepped tentatively on the gas, braked when necessary. Her long, golden hair flowed gently over her shoulders.

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My own hair is greying…and the days keep moving. One day soon the branches will be bare and the frost of winter will set in. But today it is late October and the woods are glowing. The muzzles of horses are buried in emerald grass. They don’t look ahead or worry, just simply feel the warmth of autumn through their coats. And the sun shines brighter each day through the shedding forest.

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14 Years Ago …

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Sydney, with April, on her birthday.

On the cusp of my forty-first year, after multiple miscarriages and as I watched my own mother slide into the sad, indecipherable world of Alzheimer’s, I was granted the gift of a daughter. I had grown to expect grief, to steel myself for it … and instead I received a miracle. A being of pure light. On the day of her birth, I told my husband she was “made for my eyes.” I still feel that way.

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The twin towers of my childhood had fallen — my father’s heart had given out the year before and my mother’s mind was disintegrating — and our country had just experienced the horror of 9/11. A week later, Sydney entered our lives. Our hearts were more than full. I have told the story in my memoir, Motherhood: Lost and Found, spent years editing the manuscript, trying to capture the nuances of this story. But words seem so small compared to this kind of Grace.

Every day with our daughter is a joy. A celebration of life! Yes, there are challenges. I have much to learn as a Mother. And we are a very human family. But underneath whatever happens, we know we have been deeply blessed. And we are so grateful!

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Fourteen years later…on my birthday, three days after Sydney’s.

 

The people who survived the sword found grace in the wilderness; …the LORD appeared to him from far away. I have loved you with an everlasting love; therefore I have continued my faithfulness to you. Jeremiah 31:2-3


Morning After a Blue Moon

The clouds were gorgeous this morning as Sunny and I took off for our walk. I couldn’t help but marvel. There was a coolness to the air and a beauty that lifted my heart. Something about the blue moon last night reminded me that we live in the midst of a glorious story…despite the pain and suffering embedded in our lives. If we step out of our daily grind, look up, we might just capture some of the brilliance that surrounds us.

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Painting: an Evolution

I love our barn. It was built by John Black, our neighbor who sold us our land and who used to run a dairy farm. Our barn is sturdy, built with strong wood and care. Most of the wood came from June Washam’s old sawmill. June, who has a road named after him, and was recovering from open heart surgery when we knew him, came over and helped John in the building process, even though he wasn’t able to stand up straight. He has since passed away, but the quality of his wood and our barn still stands. John Black says, “Everywhere there should have been four nails, I put five.” Craftsmanship like that is a rare gift. And I am so thankful.

But ever since our tack room was built, I’ve wanted to paint the outside wall of it. It’s made of pressed particle board and has the brand stamped in black running in a diagonal line across it.  I’ve always been someone who likes the idea of transforming ugliness into beauty…so, using some old paint that I had around the house and the barn, I began the process.

I enjoy painting, but I don’t consider myself a real artist. My brother Bill was the artist in our family. His watercolor scenes and portraits mesmerized and amazed me. He could perform magic with his brush. My attempts at drawing nature and wildlife were enthusiastic, but typically the trees and the animals were somewhat ill-formed and oddly shaped. But there was something exciting about the process.

These days I enjoy the idea of transforming a plain wall into something magical. Not that I have any misconceptions about my talent. I know it’s raw. Maybe more than raw. But there is joy in the process … the idea of creating something new.

So I went to work on the outside wall of the tack room. I started by painting over the particle board with a tan color. It was a hot day, close to 100, and I had to stand on a stool, then a chair to reach the top of the board. Covering the particle board in paint proved harder than I had imagined. After about an hour, I had less than a quarter of the wall painted and I was drenched in sweat. A wasp crawled out of the wall and circled around me. I held my breath and it flew away.

I stepped back every 10 minutes or so and surveyed my progress, promising myself I would stop … after I was one-third of the way done, then halfway, and finally, gradually, I only had the top left corner to finish … so I persevered.

Then the wind kicked up and the temperature dropped from 98 degrees to the mid 80s and it felt positively cool. I went up to the house as the first rain that we’d had in weeks began falling. But after a few minutes, I thought to myself…Why am I here when it’s finally cool? So I scrounged around the house for some blue craft paint that I could add to the partial can of white paint in the barn. I found some and returned to the barn to paint the sky.

It was a pleasure to paint as the wind stirred through the barn. I could hear the horses rustling behind the barn and the occasional stomping of hooves. The coat of blue went onto the particle board a bit easier.

A few days later, when I had a few hours to myself, I began painting the green that would be the pasture. It took me a while to turn the pale blue paint into green. I don’t like to waste anything, so I stirred yellow into what remained of the pale blue paint. When I tried it out, I could tell that the sky and the pasture would be almost the same color. It took a lot more yellow and some dark green craft paint to finally come up with something dark enough to pass for a pasture.

I was most excited about adding horses to the scene. My plan was to paint each of the horses that are currently on the farm…and possibly add Crimson (looking down from a cloud). I painted Foxie (a palomino), Smokey (a grey Shetland  pony) and Misty (a paint) using silhouettes of horses I found on the internet as a guide. It was fun to add their distinctive coloring. I still need to add some shadowing on Smokey as he looks a bit ghost-like.

After painting the horses, I added some fluffy clouds and then… as is often the case… my time was up. I still hope to add Crimson and some trees and a Bible verse that I discovered as I was contemplating the dream of having horses back on the farm.

The mural on the tack room is still evolving. It’s a long way from perfect. But then so am I.

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Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Psalms 37:3

 


The Father Dance

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My father and I on my wedding day, 31 years ago.

Last week was the anniversary of my father’s death 15 years ago. Last Sunday was Father’s Day, and the week before that my friend Gilda and I did a reading in honor of fathers from our memoirs. I read a story about dancing with my father. This morning, after seeing a Facebook message and a friend’s blog about difficult father experiences, I thought again about the incredible impact these men – whether absent or present, broken or worse — have on our lives. Compared to both of my friends, it would appear that I’ve had it good… a Daddy who loved me. But the truth is always so much more complex.

My father was broken in many ways – distant emotionally and easily angered, a man who I now realize suffered from PTSD. Even though I was “the apple of my father’s eye,” according to my mother, and I knew he adored me, a part of me also feared him. He was a big man who made the house shake when he walked, and I was the youngest and smallest in our family of six. I watched his anger flare at times, saw him use the yardstick on my siblings.

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My father, in his fifties, close to the age I am now.

Born in 1920, Daddy had fought in World War II and Korea, lived through the Depression and perhaps hardest of all, lived with own father’s drinking and occasional volatile behavior. He never did say much about these tough times, but instead repeated the lighter, positive stories: “Every week, Dad walked to the Bay to Bay and bought me ice cream on a stick,” “He took us kids to the big department toy store and we all got to pick out something.” It was as if my father didn’t want to tarnish the family name with negative stories about his own father… and I feel the squirminess of guilt as I dare to touch upon this now, as if I’m opening up a Pandora’s box that I learned by his example should stay locked.

But I remember my mother’s hushed voice sharing snippets from her early visits with her new in-laws. My father’s father, who I never knew, had a short fuse. As an animal lover, Mom was abhorred that he kicked the dog under the table while they were eating, that he could speak harshly. There was also my father’s matter-of-fact report that “Dad had a nip every night.” And there were rustlings that my grandfather and maybe his father used to slap his wife.

My father’s family was affluent when Daddy was a boy. They lived in Canada during the summer months and Florida during the winter. They owned two Bentleys and drove them up and down the East Coast. My grandfather had a chauffeur named Jarvis.  But all this ended one day, during the Depression. My father, walking home from middle school, lifted his head to discover his home had turned into a square of charred earth. The story goes that all the money had been stored in their mattresses and it had burned up with the house. My father saw his mother on her knees, the tracks of tears on her face as she sifted through ashes searching for her diamonds.

From that day on, life changed for my father. He took on three paper routes to help support the family. They ate “mush” for meals, twice a day – or three times, if they were lucky. My father and his family had been unceremoniously dumped from the lap of luxury. I can’t even imagine the shock the whole family must have experienced.

When I look back at these beginnings, I can only be grateful that my father – the next-to-youngest of nine children – grew up as responsible as he did. My father didn’t drink, except for an occasional glass of sherry or an Old Fashioned to celebrate a Christmas or a special holiday. I never saw him drunk. My father worked hard. He became a colonel in the Army, worked as a civil engineer leaving the house by 7 or 8 a.m. and returning after 5. He saved his money conscientiously, perhaps obsessively.

He loved the water and spent holidays packing up the family and taking us out on the boat. I’d grip the hot plastic seat cover as we rode waves, watching my father sit or stand at the wheel, his hair blowing back from his red forehead. My father was present physically. He loved his family.

But despite all of this, at times I had the sense that something was missing. I wished that my father would talk to me about more than money and sports. I wondered if he felt things, if he knew that I had a world of feelings inside me. I yearned to understand his heart, for him to understand mine.

To survive in my family, I learned to be like him. Someone who was responsible, good with money, someone who could be counted on. Whether he wanted this or not, I also learned to be someone who hid her feelings.

While I carry an ache inside me for what we didn’t share, I don’t blame my father. I couldn’t possibly. It’s easy to see that his own history was challenging and painful, that he had no role models (nor perhaps the capacity) for the kind of heart-felt communication I desired, that he rose above extremely difficult circumstances and grew into a man of courage, a man of dedication, a man of integrity and strength. I am so very grateful for all that he was and all that he gave me…and he was more than generous. Perhaps as I’ve become a parent myself, I’m learning just how impossible it is to serve all the needs that our children have.

I’m also learning what a mixed bag each of us is…a bundle of contradictions. So much to love, so much to loathe. My own standards are incredibly high. I’m an idealist that at times can morph into a perfectionist. Who could ever live up to that? And would I want my loved ones to judge me by my own incredibly taut standards?

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My parents near the end of my father’s life. Daddy stayed faithful to my mother through her years of Alzheimer’s.

So there are lessons for me here…. Lessons of appreciation and gratitude for what was, lessons of letting go and giving grace for what will never be. My father was a good man, and I was blessed to have his strength and his love in my life. It was foundational and a tremendous gift.

But I don’t believe I was wrong to yearn for the sacred intimacy that can exist between a Father and a daughter. Perhaps within each of us, deep down, no matter what our experiences, there is a similar tender yearning. It has taken me years to realize that this intimacy has been available all along, I just needed to lift my eyes.

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Six months before my father died, I had the privilege of dancing with Daddy at a cousin’s wedding. It was my parents’ 50th wedding anniversary.


Fire in the Sky: a Time of Transition

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After losing about a month to illness…a sinus infection (hidden deeply behind my right eye) and perhaps a touch of bronchitis and/or pneumonia, I am returning to the land of the living. Out of necessity and lack of energy, I had to pull inward, drop out of many of my normal activities. As I sat with myself for so many uninterrupted hours, I couldn’t help but ponder the transitions that have been and are afoot around our place. We’re caring for horses again on our property after a good decade of having the barn empty, and six years of homeschool are coming to a close. Both of these things feel major, and one is the beginning of a new (and old) venture, the other is an ending (at least for now) and also a beginning. And as someone who likes to put things in order, this tangle of beginnings and endings has been confusing.

One of the startling things to me about bringing horses back to the farm is how familiar and different it feels at the same time. In some ways, I’ve stepped into old roles, often without even realizing it. As I’ve been teaching Sydney and Lauren-Kate about horses and giving them riding lessons, words come out of my mouth that I had long forgotten were even in me. I even find myself standing or walking differently…a stance and a pace from my 20s and 30s, the days when I taught a dozen or more kids and kept five horses at our barn.

What is also startling is that my daughter has suddenly (seemingly overnight) become a responsible horse woman. She brings horses in from the field, feeds, grooms, checks water and does every other barn chore without needing to be reminded. She seems to have a sixth sense about how to handle horses.

My last memories of having horses at the barn a decade ago were somewhat dreary – me, childless and exhausted from caring for my mom, feeling as if the day-to-day chores were endless. And so, although, I love horses, I was in no hurry to have several in my care again.

It has been such a sweet surprise to see how Sydney (and our friends) have happily taken to barn chores. I pinch myself almost daily as I walk down to the barn and am suddenly transported back to my own teenage years. I remember how I “did it all” as my mom stood to the side, and now I see Sydney doing the same thing. Not only does she not need my help, she likes being independent and showing me her new-found skills. And, of course, this is a little confusing too and requires some adjustments on my part. While I am “the professional,” I must take care to step back and give my daughter the opportunity to be “in charge” of certain things.

At the same time as barn and horses are shape-shifting in my mind, so is Sydney’s schooling. She is no longer (and hasn’t been for a while), the child who needs me to oversee each project. She has been taking the reins (pun intended) and setting her own course. And next school year, she’ll be stepping into a new situation, one where my presence will only be necessary in a peripheral way.

Most parents, who don’t homeschool, probably experience this change much earlier or perhaps in a gradual way as their children move through the grades of traditional school. But the shift from homeschool to traditional school is more abrupt, and there are bumps, even though both Sydney and I are excited about what’s ahead. She’s looking forward to fun social opportunities, days full of activity and new experiences. I’m excited to hear about her new adventures, encourage her through these transitions and have new pieces of time for myself.

But navigating these new situations will be a challenge. Figuring out my new role and respecting hers will no doubt cause friction at times. Change doesn’t occur in a straight line. We’ll both no doubt slip into old patterns and stumble our way into new ones. Learning who my daughter is becoming and what she needs and doesn’t need from me is somewhat daunting.

I’m sure that on occasion I’ll miss the toddler who ran into my arms for comfort. But at the same time, I celebrate the changes that Sydney is embracing. She is an amazing young woman who both challenges me and expands my awareness of what it means to be a loving parent. I adore her and look forward to this new stage of life! It has been the most incredible gift to be Sydney’s mother. As always, I pray for God’s grace as we travel the path ahead.