A big thank you to Genevieve Wanucha for blogging about my campaign and being a big support through my FTD journey. Dr. Brad Dickerson connected us years ago when we were both caring for our loved ones with FTD. Today we work together – she as the Staff Science Writer and me as a Consultant – for the Frontotemporal Disorders Unit at Massachusetts General Hospital. We are using our passion, education and knowledge to take the power back from FTD. It feels good to do evil to this relentless disease!
My first date with my husband Mike had the potential to rate pretty high on the romance scale for two college freshmen. It was a cool night in September when he walked over to my dorm to pick me up. The lobby was busy with girls coming back from the dining hall, classes or the gym, talking and swinging lanyards with ID cards and keys. Noisy study groups competed with the hum from the laundry room and the crack of balls on the pool table.
Mike was standing near the doorway looking relaxed, his curly shoulder length hair wet from a recent shower, wearing patched jeans and a worn button-down denim shirt. He gave me a small wave when he saw me. The sophomore staffing the reception desk gave me a knowing smile before going back to pretending to study. Mike had a backpack slung over one shoulder with a half-full bottle of red wine hidden inside a fleece blanket. The visible blanket was practically a billboard for the attempt at sex, or at least a heavy makeout session. I was suddenly very aware of my outfit of jeans, sneakers and a gray Saint Anselm College hoodie, worried that it looked more like I was ready for a Biology field trip than a nighttime stroll with a coed. Mike suggested a walk to the soccer field to check out the stars. I smiled, and agreed that would be nice.
The fact that Mike was six foot three, almost 300 pounds, and had just suggested a walk in the dark as our first date should have made warning bells ring in my head. But, Mike was more likely to be described as a teddy bear than a linebacker. He smiled and laughed a lot. His full beard of thick, dark curls emphasized his round cheeks and deep brown eyes. He wore wire rimmed glasses and had a faint pink scar that ran across his forehead from a childhood car accident. He was both strong and gentle. More importantly, he was different from other guys I had met. He looked me in the eye when asking a question, loved to debate about politics and religion, and he seemed comfortable in his own skin.
We laid on the blanket together and watched the stars while talking about all the things we hoped to do that year, throughout college, and in life. I remember talking about my volunteer work from high school and how I hoped to “make a difference” through a career in social services. Mike talked about his love of philosophy, Yahweh (his car) and being part of a community.
The night had all the ingredients for passion; red wine in paper cups, a blanket, the cover of night and the excitement of a potential first kiss. Mike sat really close to me, his left leg leaning against my right, saying it was getting “cold” out. Yet, he didn’t make one move. When I got back to my room that night my roommates were dying to get all the juicy details. I was embarrassed to tell them the truth: we didn’t even hold hands on the walk back.
Twelve years after that first date, I am the one walking into a lobby to pick up Mike for a date. Nancy, the receptionist, knows me and smiles as I pick up a pen and sign in as a visitor. She asks if I have any recent pictures of Noah and I show her the mini-poster hot from the lamination machine that I brought in to hang in Mike’s room. It is a picture of Noah holding up a peanut butter and jelly sandwich that he has made himself. At the age of two he is a little Mike with forever eyelashes and golden blonde hair. She is only able to look at it for a moment before her phone rings “Good morning, Neuro Rehab Center. How may I direct your call?” She transfers the call, hands me back the picture and whispers “He’s beautiful.”
As I make my way down the hall, I juggle Mike’s large iced coffee with the picture of Noah and a rolled up fleece blanket. I press the button to disable the alarm and step into Mike’s unit. We see each other almost immediately and I notice he has a fresh haircut. The wiffle of his crew cut makes me want to reach up and rub his head, but he doesn’t seem to like me doing that so I hold back. Mike begins to walk towards me, yelling “Awwww!” and reaching for the coffee. As he puts the straw to his lips he looks at me and keeps walking into the common room where the “Price is Right” is blaring.
I head to Mike’s room, knowing he will follow me eventually, and look for a spot for the new picture. As I am cutting the tape to mount it to the wall, Mike’s nurse Clare comes in and immediately wants to see the new picture of Noah. She exclaims over his round cheeks and impish grin. When Mike walks into the room Clare holds the picture up higher saying “Michael, look at your son! Look! He is eating a peanut butter sandwich!” Mike’s eyes travel over the picture, but his expression doesn’t change.
I show Mike the bag of cookies I brought for him and start to walk towards the hallway. He follows me and when we reach the unit door I fumble with the key to let us out. He walks by the door and back towards me, finally following me with a little coaxing from the cookies. We walk down the hallway to the doorway for the small outdoor courtyard. We enter and begin to walk in a circle. Mike walking fast and looking around. Everywhere except at me. He eats one cookie after another and when they are gone he heads for the exit to go back to his unit. He doesn’t notice that I am on the other side of the door when it slams shut to lock him in. I leave without saying goodbye.
Mike passed away in 2012. But, FTD took Mike from our lives years earlier than that. I think of FTD as a mistress in our marital bed. Sneaky, conniving and unwanted. FTD changed the nature of our relationship and forced me to constantly flex and contort myself and the love I had for Mike to meet his ever-changing needs.
The practical aspects of caregiving are difficult. Bathing an adult can be tricky. Feeding someone with swallowing issues can be delicate. Communicating with someone who can not speak may feel herculean. But, it is the grief and loss, the many tiny deaths that make it all feel insurmountable. It was in those low, dark moments of sadness when I would draw on the love and kindness of others. I knew that Mike might not react to Noah’s picture, but the staff always would. I knew that Mike couldn’t add to my retelling of our love story, but I knew that a nurse would listen. Even though Mike couldn’t bring me a bottle of wine, I had girlfriends who showed up with Pinot Noir in hand.
Today’s date nights include ice cream sundaes, pajamas, and Disney movies. Noah and I snuggle in my king-sized bed and I tell him about Yahweh (Daddy’s car), listen to stories about first grade adventures, and we make plans for Saturday morning waffles. It is a piece of the future I dreamed about. Now I go to the soccer field to cheer on my favorite goalie. I am always sure to cheer extra loud, just in case anyone else is listening.
For as long as I can remember, I was interested in my parents’ love story. I wanted to know how they met, who liked who first, when my mother knew my father was “the one.” I always felt like that was the real beginning to our family’s story and I enjoyed listening to Mom retell it over and over.
My parents met at a “mixer” on campus at Stonehill College. My mother was an English major there and my father attended a nearby community college. He and his buddies heard that there were “cute girls” at Stonehill and so they decided to crash. Mom said that Dad was wearing a pink button down shirt and she knew right away that he was going to ask her to dance. “How did you know?” I would ask with genuine curiosity. “You just know” is how she would always reply. Mom had funny stories about Dad showing up overdressed for their first date (he wore a suit jacket), or what is was like meeting my grandparents and uncles for the first time (overwhelming). From here on, their love story may have been common, or unremarkable. But, life intervened.
My parents were college students in the late 60’s and during my mother’s sophomore year, there was a war draft. Dad’s number was up. He was going to Vietnam. They didn’t get engaged before Dad left. Mom said that Dad didn’t want to promise something that he couldn’t guarantee. What if something happened? Something did happen. An ordinary love story became extraordinary. My parents learned how to love each other living a world apart.
My favorite stories were about the phone calls. Dad was allowed one phone call each week for three minutes. He would alternate the weeks, calling my mother one week and his mother the next. Mom emphasized that these calls were very important because even though Dad wrote her a letter every day, there was a big lag time in the letters and when she spoke to Dad on the phone, she knew that at that exact moment, everything was ok.
Mom was living in the dorms at the time and did not have a phone in her room, but there was a pay phone in the lobby that he could call. The other women in dorm would know when Mom was expecting a call from Dad and they would all pay attention for the ringing phone. Mom said that when she got on the phone there would be an operator on the line who would ask for $13, which Mom paid by feeding quarters into the phone. The operator stayed on the phone while they talked and after every single phone call, the quarters would come rushing back out when Mom hung up the phone.
After hanging up with Dad, Mom would call Grandma to let her know he was alright. Grandma would do the same for Mom when it was her week to get a call. At the end of every call with Grandma, Dad would say “Tell Diane I say 1 – 4 – 3” the code for “I love you.”
The stories of their time apart always held my attention because it seemed so foreign to imagine my parents not together. They were a couple that spent a lot of time together. Sitting together on the couch at night after work, going out to dinner every week, and holding hands on long car rides. All those letters Dad wrote? Burned in the fireplace. Dad said he didn’t want the reminder of time he had to be away from my mother. Secretly, I was suspicious some of the letters might have been too romantic for his children’s eyes.
When Mom passed away unexpected at the age of 58, my parents had been married for 34 years. I remember sitting with Dad and talking with the funeral director who commented that my parents had such a wonderful, long marriage. Dad’s response? “Not long enough.”
Dad has been living with Alzheimer’s since his late 50’s. Today he is 65. He has no idea what day of the week it is, or if he has eaten breakfast today. But, some memories seem to have superpowers against the build up of amyloid and plaque in his brain.
Two summers ago, my sister was browsing in a souvenir shop with Dad down the Cape. A salesperson was showing Dad the newest bracelet, called the “1-4-3” bracelet. It was a simple silver bracelet with two charms. The first was a circle with a picture of a boat anchor and the second was in the shape of a lighthouse withe numbers 1, 4, and 3 engraved down the front. Dad was adamant that he needed to buy two, one for my sister and one for me. He told my sister that is what he always used to say to my mother and so he wanted us to have them.
Dad doesn’t remember that he gave us the bracelet. But, when I wear it I show it to him and point out the engraving on the lighthouse. He smiles and loves to reminisce about time with Mom. He always ends the conversation by saying “I miss her everyday.”
My parents’ love story lives on today. It lives on in me, my sister and our children. It lives on in Dad. Alzheimer’s has taken away so many of his abilities, but not his ability to love or to remember love. It is as strong and steady as the rays from a lighthouse. A bright spot in the darkness, calling us home.
Part of my experience becoming a caregiver was adjusting to constant change. Learning how to adapt to new roles and environments. Prior to Mike’s diagnosis, my only experience with nursing homes was visiting my Grandpa and my Memere on weekends. By the time they were admitted to their skilled nursing facilities, they had been widowed and were in their seventies. They were surrounded by other elderly people in similar circumstances. The idea of looking for a nursing home placement for my 31 year old husband was more foreign to me than buying real estate on the moon.
And yet, there I found myself, signing papers to ensure a spot for Mike on the secure unit of a neuro rehabilitation center (NRC). The moon would have felt like a safer place to land.
I had so many emotions that day. Anxiety and fear. Guilt and shame. Desperation and sorrow. I was all at once heartbroken and thankful. Unable to safely care for Mike, Noah and Dad all under one roof, I needed the help of the NRC to provide Mike with 24/7 care. I needed them to do what I couldn’t. While they were keeping him safe and clean and fed, I needed them to carry out that care with compassion, respect and kindness. But, how could I make that happen? With so many needy patients, how could I make Mike stand out as important?
I decided I would need a plan. A plan to make the staff fall in love with Mike. To fall in love with our family. I was determined that if they knew us, if they saw us as a family, then they would want to give Mike not only the care that was required, but the TLC that he deserved.
I hung pictures on the walls, large colorful engaging photos of Noah. Of Mike and Noah together. Of us as a family. I created a poster “Fun Facts About Mike” that listed his academic accolades, his love of Starbucks & Harry Potter and the town where he was born. Whenever I had the chance, I told our love story. I made a point of getting to know each staff member and I listened carefully to the opinions of the nurses, aids and activities staff. I wondered, is it working?
I thought so. The staff seemed to pay such close attention to him. He responded with big smiles and joyful noises when people said hello to him in the hall. They asked me to bring in moisturizing body wash when his skin got dry and made suggestions for toys he might like.
In January of 2009, Mike was admitted to the hospital with a fever due to aspiration pneumonia. FTD had taken away his ability to speak, walk, hold himself upright in a chair and even properly swallow his own saliva. His body was tired. So was my heart. We made plans to start hospice and I was comforted to know that he could receive hospice services at the NRC.
I followed Mike’s ambulance back to the NRC after a long emotional day. As I passed through the front lobby the receptionist let me know that they had moved Mike’s room. This didn’t come as a surprise, I thought that hospice patients might be in a different wing. But then I thought of the photos on the walls. Over sixty 12×18 images that would need to be removed and rehung in the new room. I walked down the hall feeling defeated and tried to encourage myself that it wouldn’t be too difficult a task.
When I walked onto the secure unit, I saw Mike’s room. Directly across from the nurses’s station and immediately recognizable because of the photos. Each and every poster had been carefully hung around the room. The pillowcase with Noah’s sleepy infant face. Mike’s iPod player and lullaby music. Stuffed animals and Harry Potter books. All in place. Ready to welcome him home.
It turned out that the heroic men and women who staffed the NRC were the real secret keepers. The simple acts of kindness and care bestowed upon Mike and our family by the NRC staff revealed their love and dedication to their residents. Today, my memories of their extraordinary love in that ordinary place evokes powerful emotions. I feel privileged to know their secret.
“She liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life. Alice liked remembering that.”
― Lisa Genova, Still Alice
Last week I was at the library with my son when I saw a sign for the latest book club book, Still Alice by Lisa Genova. It is a fictional account of one woman’s journey with early onset Alzheimer’s. Genova’s Ph. D in neuroscience from Harvard, experience with a grandparent with Alzheimer’s, and her commitment to research for the story drew me to the circulation desk. I opened the book today and am already drawn in.
Earlier this year I stood in the lobby of the Happy Frog Copy Center, talking to Rose, one of the owners, about my need for a logo or a picture to make my business cards stand out from the rest. I was fidgeting with the gold necklace around my neck, a gift from Mike adorned with a butterfly charm that my mother wore when I was a little girl. “What about a butterfly that looks like your charm?” she asked. I smiled and told her that I loved butterflies, and they often reminded me of Mike, especially Monarchs because orange was his favorite color. And so, the logo was born.
The theme of butterflies, their life cycle and their beauty has been one that has reoccurred many times throughout my journey as a caregiver. A few years ago my therapist said to me “We are all traveling across the ocean to the same island. Some of us are tugboats with a heavy load to bear. Others are butterflies who make the trip more beautiful for others.” That Christmas I gave my best friend a butterfly necklace.
I hope that Still Alice gives me a window into another’s perspective on living with dementia. The more that we talk about it, the more that we share, the more that our communities will know. Caregiving is hard work. In the same way that I received my son without an instruction booklet, my husband and my father came to me with a diagnosis and no manual. I am sharing my story and hoping to inform and inspire others. I am still learning and on the lookout for more butterflies in my life.
I am a co-facilitor of the Boston area FTD Support Group. We meet monthly to share stories, learn new information and ask questions about caring for a loved one with a frontotemporal disorder (FTD). All of our meetings are powerful, but this last meeting made me pause for a moment after the ritual go-around where caregivers provided updates. Anxiety, sleeplessness, fear for the future and struggles to get through each day.
Caregivers talking about themselves, not their loved ones.
I paused because I was struck by the weight of the challenges laid before us. Our caregivers were like soldiers, stopping to reaffirm the war plan, committed to staying on track, even though they weren’t sure what path the road ahead would take. Our caregivers are courageous because they live vows, honor friendships and recognize when support is needed. Courage is needed daily, sometimes hourly, to make it to a place of peace.
My indoctrination into this community of courage and care was that I loved someone with FTD. Loving Mike revealed a tigress in me that I didn’t know existed. This powerful force allowed me to make decisions, provide care, and ultimately, let go.
Today’s tigress doesn’t have to be on the lookout every moment. But, I need her in a new way. To relive my moments of anxiety, stress, and loss. To listen to another caregiver’s story and hear my own. To talk to my son about why his Dad can’t live on earth.
Today was the first day of Love Is Out There, my 36 day campaign to raise awareness for FTD, caregiving and taking the power back from rare disease. The tigress is here. Looking for every connection with another caregiver. Nudging me to share my story and reveal something powerful. To keep going even though I don’t know my destination. To be a voice that makes a difference. #EllenandKatieRDD2015 #FTDAwareness #CaregiverCourage
There are a few things that I know for sure about my mother. She loved green tea in the mornings, listening to Celine Dion in the car and could always be counted on to give my sister and I a book every year for Christmas. In 1996 she gave me the first edition of Chicken Soup for the Soul: 101 Stories To Open The Heart And Rekindle The Spirit. I was 16 at the time and Mom had been trying to encourage my interest in writing. Her inscription on the inside cover read:
I thought you might appreciate the quotes + stories in this book. Some day you’ll have your own to collect that will give you inspiration. Write them down. We all need to be reminded that love is out there.
Mom never would have wanted me to have this story to tell. She couldn’t have imagined it. Yet, she had confidence in me. A feeling that someday I would want to share a part of my life with the rest of the world. Today I am 34 years old. I am a mother myself. Eighteen years after she gave me this gift, I am overwhelmed by the confidence she had in me. Reading her words inspires me to have the courage to share mine.