How Dementia Healed Me: I Don’t Have Dementia. but Dementia Is Part of My Story.

By Ally Burch

It was a mind-blowing and humbling moment when Ally Burch realized that God had chosen to use her work with people living with dementia to bring her deep and lasting healing. A survivor of childhood trauma and a failed marriage, Ally has been on a journey of healing for-practically-ever, and God has brought healing in ways that were so intentional, so personal, that there was no doubt the circumstances and people related to her healing were only of God. How Dementia Healed Me tells the remarkable story, while giving hope that folks with dementia can be loved well and know joy, and people caring for them can be touched in powerful ways in the process.

• Language: English
• Publisher: WestBow Press
• Release date: Oct 3, 2019
• ISBN: 9781973675594

Ally Burch

Ally Burch earned Bachelor of Science and Master of Science degrees in Occupational Therapy and has worked mostly with folks with a few gray hairs for the last decade. She is a Certified Dementia Practitioner, speaker, author, content expert, trainer, consultant, business owner, and lover of people. She is the Mom of four great kids, a daughter, sister, niece, and friend. Most profoundly, she has been a woman of faith since she trusted Jesus Christ at the ripe old age of four. And, she is a survivor; one who decided early in life that she wanted to do it different, to get it right.

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Introduction

Something really special and unexpected happened as I worked with a kind, skillful, and loving approach with people living with dementia. I was shocked at first, then realized the long-lasting effects the work had on my day-to-day, on my future. I want to share the story in the hope that working with people with dementia can be a two-way street: those with dementia can be loved well, and those with particular struggles can find healing in loving people with dementia while providing care.

Our labor pool is limited—those prepared to care for folks with dementia and provide the support that their care partners need. That labor pool must grow. My intention is to beef up that labor pool with people like me—people who desire to love well, and people who struggle with various issues that need remedy.

Dementia brings healing. I know it because I’ve lived it.

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The Healing Power of Dementia

Encountering persons living with dementia can change our lives and make us grow in our humanity; indeed, our own personhood can be bolstered by such encounters.

—Daniel C. Potts, MD, Reflections on Personhood

I don’t have dementia. But dementia is part of my story. And it has given me the courage to write this story, in the hope that others might find healing and that folks living with dementia might be loved well.

Dementia is an umbrella term used to describe symptoms that accompany diseases of the brain that affect cognition (the way we think). Specifically, dementia affects our memory and thinking skills to a level that affects our ability to perform everyday activities.

Most of us have been touched by the sadness and suffering that walk hand in hand with the effects of dementia. And the future for folks with dementia looks bleak. But I am proposing that dementia has the power to heal, and in this process, folks with dementia can find joy and comfort. But let me qualify these statements a bit. I’m not implying that the physiologic changes that are happening in the brain of someone with dementia can magically heal someone else. No, this is about how loving well the people with dementia has the power to heal others. These are bold statements, but I’ve lived it.

I am an occupational therapist, and for the past ten years I have worked primarily with folks with a few gray hairs. I’ve focused on care for folks with dementia and care for those who walk alongside them. I intuitively found meaning in the work.

What I didn’t know until recently was how this work would bring me healing.

Deep breath.

This is my story. A story of trauma and tumult. A story of hardship, faith, and hope. Renewal. And second chances. And a story of hope for those living with dementia, PTSD, anxiety, or a history of trauma.

Let me see if I can explain.

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Beginning

For you created my inmost being; you knit me together in my mother’s womb.

—Psalm 139:13

T ravel with me to the year 1968. A chilly spring day in Akron, Ohio. A humble little Christian family of Mom, Dad, and eight-year-old and three-year-old boys. They welcome a chubby little girl into their family: me. I was the second daughter born into this family; the first daughter, Sharon, was born and died the same day in May 1962. Her death was likely the result of physician error.

I’ve been told that my mom was proud and so happy to have me, her little girl. My mom was a kind, giving, conscientious mom and a lovely woman. She was a good friend and sincere in her faith. My dad was said to be happy to have a little girl as well, and so was my oldest brother, Mark.

Our little family packed up and left Ohio six months later, one of many job changes for my dad. We made our way to Santa Rosa, California, where he commuted to and from San Francisco each day, a commute of a bit more than an hour nowadays.

Of course, I don’t remember anything from those early days in California, but I’ve listened well to the stories and asked lots of questions.

This is the season of my life I would chronicle as the beginning of chaos. And I’ve spent the last decade trying to make sense of it all.

I’ve been told that this was when the prescription drug Valium became available. According to WebMD, Valium is used to treat anxiety, muscle spasms, and seizures and typically produces a calming effect. I’m not 100 percent sure why my mom took Valium; maybe she was after this calming effect. But I wonder if the doctor was aware of or shared with my mom any of the risks. Valium can cause paranoid or suicidal ideation and impair memory, judgment, and coordination. The story goes that my mom went to see her doctor, and I suppose in response to what she shared, he opened his desk drawer, took out some Valium, and said, Here; try this. My mom was, after all, the mother of three young kids, and her husband commuted a ways to work and worked full-time. He’d had job changes, so the family had moved several times. I know that my mom had girlfriends, but I wonder how deep those friendships became when there was a lot of moving going on.

My dad served as an officer in the US Marine Corps Reserve and was a member of the USMC national shooting team. Translation: he was gone from the family and the family home quite a bit.

My dad is a quiet, careful man. He’s a Kansas farm and ranch boy. He is more agreeable than not, the product of a dominant father and acquiescent mother. He married my mom when he was almost twenty-two years old—so young. He was probably barely prepared to be a husband, and they had my brother not quite two years later.

I suppose there were signs of trouble fairly early in the marriage. But I wonder if my mom and dad were even aware of the struggles or if they had any idea how to address them. They were from a different generation; subjects like marital or life struggles were taboo.

My mom grew up in a less-than-stable home situation. She was the middle of three sisters, all born eighteen months apart. Her mom and dad married when their mom, Louise, was just eighteen. They divorced when Louise was barely into her twenties and already the mom of three very small girls: Carol, Peggy (my mom), and Evelyn. The history included stories of two jobs for my grandmother, with the girls left home alone and responsible for a steady list of household chores. There were lots of men in Louise’s life; I know of five marriages, but I’ve been told there were nine. Nana, as she was called by her grandkids, was known to be a difficult woman. She was very particular with her possessions; she’d worked hard for what she had, which wasn’t much, so she wanted others to respect her things. I suppose she most deeply wished for others, especially her family, to respect her, to love her, and to want to be around her.

I wonder why Nana married so young. Maybe eighteen wasn’t all that young back then, but I know that my grandmother was a very pretty woman, and her father had died young. She had grown up in a Christian home, and I know that her mom was a woman of faith. I believe that it was the prayers of this great-grandmother, Nana’s mom, that helped me survive.

But I digress.

Nana became a dental assistant. She kept a very clean home, where she lived with her three little girls. Their home was often near her mom, who was raising Nana’s four younger siblings as a widow. Nana was the oldest of five, and her siblings were young enough that they became playmates for my mom’s oldest sister. But I get the sense that this was a pretty different history from my mom’s; she rarely spoke about her aunts and uncles, and I met them only once in my life.

My aunt Carol has spoken about how my mom was the only one of the three sisters to be a diligent student in school and take school seriously. My mom was a delicate girl. Pretty. Long and thick, dark brown hair. Quiet and serious about life. A middle child.

She and her sisters grew up poor. I don’t think they went hungry, but I know their playthings were limited and included baby mice. They had a bicycle one time throughout their childhood, and when her little sister took it for the first ride, she wrecked it. Pictures from those days show three pretty little girls on a dusty farm. But it was the late 1930s and early 1940s, after all. The country was barely recovering from the Great Depression, and many of the photos from the day show the same: dust, dirt, and barrenness.

I suppose that while those three pretty little girls seemed to have enough food to eat, they were likely hungry for the nurturing, time, and attention from a mom and a dad who, it seems, were largely absent. It seems that at least my mom was missing the careful, loving attention that she deserved—and needed.

As I said, I’ve spent the last decade trying to make sense of the season of chaos. And this written account is one more step toward me becoming who I was meant to be all along.

It must have been unsettling to grow up in a home with a mom mostly gone and a mom with relationships (I wonder if we can even call them relationships) with several men. There was violence too. The man to whom she was married during most of the years I was growing up, Jack, was in the military. I’ve heard stories of the military police on the post where they lived being called to their home to break up the fighting going on between Jack and Louise.

I believe now, through my quest for learning and healing, that my grandmother suffered from borderline personality disorder, and she made life rough for those around her. What I remember about her was that she was very critical and negative; she was more particular about her home and her car than she was about tending lovingly to the relationships she had with her family. And I’m not sure anyone felt she liked them; I know I didn’t. Nana was known to be demanding and manipulative, and one never knew what version of her they were going to encounter: angry with a penchant for words that hurt or desperate to be loved. She left her people feeling inadequate, manipulated, and frustrated.

But society wasn’t very well educated yet about mental health issues. The National Institute on Mental Health was formed in 1949, and a 1955 Mental Health Study Act called for an objective, thorough, nationwide analysis and reevaluation of the human and economic problems of mental health. My grandmother was never, to my knowledge, evaluated or helped with her mental health issues. Her family was left to do their best to keep the peace with Nana, which usually wasn’t all that successful.

It was on the military post in Jacksonville, North Carolina, where my mom was living with her mom and stepfather, Jack, that my mom met a handsome, young officer in the United States Marine Corps.

My mom had become a pretty young woman. She had a pretty smile; she’d been the only one of the three girls to wear braces. She had a tiny nineteen-inch waist, and her frame was slight. She’d taken a little bit of business school, where she learned shorthand and the skills needed to work as a secretary.

She dressed well and cared about her makeup, probably her whole appearance. I know that as an adult woman, she spent considerable money on high-end face creams, an expense our family probably couldn’t afford, but it must have mattered to her a lot. She was a woman of class and grace. Her outside was lovely, and no doubt she attracted attention from men. But it was my dad who caught her eye.

They met in late 1957 at the Officer’s Club on the post in Jacksonville. They were each on blind dates with other people. It was less than six short months later when they were married in the military chapel on the military post where my dad was on active duty. My mom was in her lovely white wedding dress with the tiny waistline, hooped skirt, scooped neckline, small pearl beads and sequins adorning the bodice, and cap sleeves. Her pretty hair and bright smile made her a lovely form to meet her handsome young Marine, sharply dressed in his dress blues, at the altar. She deserved to wear white; the one thing she ever told me about boys was "Nice girls don’t do that." I was old enough by then to know what she meant, and I knew that she had been a nice girl.

My dad’s grandfather was the one who walked my mom down the aisle. Wow! I am just now thinking for the first time in my life how sad that must have been for my mom. I know that my biologic grandfather, Bud, had remarried and lived in Arkansas, and I also know that I met him only once before he came to live with us the several months before he died from lymphoma. Wow. That must have been so hard for my mom—to hardly know her father (or so it seemed) and then care for him in his dying days.

I was ten when he came to live with us. It’s blowing my mind right now, because I was so very close with my dad’s dad, and here my other biological grandfather comes to live with us, and I didn’t even know him. I remember only a little bit about him even now; he was a tall, lanky cowboy with weathered skin. He wore round, wire-rimmed eyeglasses and cowboy boots. He loved peonies and chicken noodle soup. He had lymphoma. He lived with us, in my brother’s room. And he died. That’s it. That’s all I know. My mom sure had some deficits in her life.

None of my mom’s family was at her wedding. Her mom and stepdad had moved to California. Her sister Carol had married and had a new baby boy. Her sister Evelyn was living at home with her mom and stepdad, along with the youngest baby sister, Grace. So it was just my dad’s family there—his parents, his sister, and his grandparents. My heart hurts even now as I consider the loneliness my mom must have felt on her wedding day. She never spoke of this to me. In fact, she didn’t speak to me about many parts of her history.