My dad, Bill, was diagnosed with early-onset Alzheimer’s disease at the age of 51. I was 17 years old. When my parents sat my two younger siblings, Molly and Will, and me down to tell us about his illness, we didn’t really understand what it meant for all of us, but my mom explained that in a few years our dad might not remember who we were.
My mom noticed the first clue that something was wrong. She and my dad have always been very much in love. They truly like each other and we have witnessed their respect and commitment all our lives. My mom will tell you that the first sign of my dad’s disease was not memory loss or confusion, but his grumpiness towards life, including her. She thought at first that this was just what happened to old married people, but my siblings and I began to notice, too. My dad had always been very calm and soft-spoken, but he had begun occasionally yelling or raising his voice to us, which was really out of character.
What truly concerned my mom, however, was when my dad missed a credit card bill. My dad was a numbers guy – his career was in investment managing, and he had never been late paying a bill in his life. He and my mom started visiting doctors, visited the Cleveland Clinic, and the diagnosis of early-onset Alzheimer’s disease was made.
His disease progressed more quickly than we anticipated. Within a year dad couldn’t be left alone.
We had moved to a new home to make it easier for us to get help during the day, and at first dad was able to go out for a stroll or walk the dog, but then a few times he got confused and couldn’t find his way back.
The loss of the dad I had known became real for me when I was swimming in a national competition for Kenyon College. When I was ten years old, I was more interested in books than anything else, and wasn’t much for physical activity. My dad asked me to join a local swim club as a Father’s Day gift to him. I thought that would be an easy (and cheap!) gift and agreed. I have been swimming ever since – it is a huge part of my life. Molly and Will swim, too. Anyone who listened to my dad talk about our swim meets were led to believe we were all the next Michael Phelps. Trust me, we are not, but we do love the sport and have been blessed with great coaches and supportive parents.
My dad was involved right from the beginning. He was president of the Upper Arlington Swim Club, and president of the high school athletic boosters. He would sit in the crow’s nest for three full days straight managing the scoreboard for meets and tournaments. He loved it. He believed in the program, and even as the disease progressed he still recognized the positive impact swimming has had on our lives.
As time went on he had trouble navigating the heat sheets, had to be reminded when one of us was in the water, and couldn’t remember our coaches’ names. The reality of his condition hit me when I was in the water during a collegiate national meet, and my dad turned to my mom and said “I’m bored, I want to go home.”
I still swim. I still love the sport and I love my teammates, who have become great friends, and who understand my situation and support me, but now I swim without my dad in the stands.
HOME AWAY FROM HOME
Finally the point came when we knew that dad needed more care than we could give him at home. He had been admitted to the hospital, and shortly afterward we moved him into an Alzheimer’s care center close to our home. We covered the walls of his room with photographs of us that he has always loved and that make him smile. Some are, frankly, not the most flattering photos of us, and not a staff member or resident entered his room without a chuckle at our expense! He seemed well cared for and through his interactions with staff we would see moments of clarity, such as when he said “thank you” when a meal was brought, and when he said “thank God” when a volunteer told him Ted Cruz had beaten Donald Trump in the Iowa caucus.
Like my dad at that point, the residents at the care center had no filter, and often appeared in his room whenever they liked. He became a favorite with a few of the residents who liked to look at his pictures, or who talked to him, sometimes in Spanish or Russian, while he listened intently. It was difficult for us to be apart from him, but we were grateful he had people to interact with, and was well cared for.
SECOND HOME AWAY FROM HOME
Eventually, my mom decided to move my dad to his next home away from home – The Ganzhorn Suites. The move was facilitated by my Uncles Joe and Tim, who helped normalize it, moving stuff like it was “no big deal,” and by the wonderful staff at the care center whose kindness and attention extended beyond the care of my dad to the moving of pictures, Steelers paraphernalia, a dozen baseball caps, and bags of goldfish, and the giving of many heartfelt hugs. I was at school studying for final exams, but my mom kept me updated with texts and pictures, and in every one my dad was smiling.
I had been against this move at first. However, after dad got settled in at Ganzhorn, I realized this was the best place for all of us. We have heard mom say many times to friends that my dad’s move to a “home away from home” allowed us to accept his disease.
While we had understood that he had Alzheimer’s, when he was still at home with us we were anxious. We were always hoping that when we returned home from school that just maybe he would be better, ask us how our day was, run us on an errand, cheer us on at a swim meet, or that when friends were over he would be ‘normal.’ We weren’t embarrassed, we just wanted our dad back.
At Ganzhorn we have the best of both worlds because dad gets the care he needs, and we can still do things like celebrate his birthday the way we always have: bake his birthday cake, served with Graeter’s raspberry chocolate chip ice cream; inflate the infamous inflatable birthday cake that appears at all our birthdays; and give him an assortment of golf shirts that he always insists he doesn’t need.
CHRISTMAS TO REMEMBER
We even spent Christmas with my dad at the Ganzhorn Suites. It was my mom’s idea, and Molly, Will, and I were apprehensive at first. We questioned how it would feel to spend Christmas at a memory care facility. We were still teenagers after all – we worried about having our traditional over-the-top Christmas decorations and whether our stockings would be filled, and if we would play games, watch football, and do all the things we have done for years.
We did all of this, and more.
In the weeks preceding Christmas, my mom helped decorate dad’s home – it looked like our home. There were Christmas wreaths all over the place. My mom brought our Christmas china, new matching pajamas, Santa’s gifts, cookie making needs, and anything else you can think of to ensure that Christmas felt like Christmas.
Christmas Eve morning we moved into the last available wing at Ganzhorn after unloading four cars filled to the brim with Christmas stuff. Each of us moved into our own private room with our own bathroom, brand new sheets, and a double bed, which was quite a step up from sleeping in sleeping bags, sharing three to a room, and waiting on the bathroom! We felt like we had checked into a five-star hotel, but yet it also felt like home – Christmas pajamas and stockings were waiting at our doors.
Our friend Father Watson visited and said mass for us. He was very personal in his homily and brought up times he had spent with our family. My dad smiled when he referenced my dad’s golf game.
We spent the afternoon baking cookies and preparing Christmas Eve dinner. We prepared my dad’s favorite, beef tenderloin with béarnaise sauce. The staff were wonderful, and the greatest gift of all. They would pop in and check on my dad, share a story, and have a cookie or two. We were reminded again and again how lucky we are that dad is so well cared for there.
On Christmas morning Will dressed as Santa, and Molly as an elf, and they delivered presents and treats to all the residents. My mom reminded us that before we were born, dad would dress as Santa and visit friends and family on Christmas Eve. Our traditions continued.
My dad typically dozes off during the day, but not this day. He sat with us and took it all in. Friends stopped by, we played games, put puzzles together, and dad watched – he didn’t want to miss anything.
Our Christmas was awesome.
My parents’ love for each other, and us, has not diminished with my dad’s diagnosis. In fact, it has gotten stronger. When he was still living at home, within ten minutes of mom leaving the house he would call her asking when she would be home, and would sometimes sit by the window waiting for her. Early on in his disease he decided to buy tickets for my mom to see Earth, Wind, and Fire. My dad has always hated crowds, and when he found out it was at the Toledo zoo, he was very grumpy, but we all convinced him to go. I’m not sure if he would have agreed prior to his diagnosis, but my dad has always adored my mom, and we continued to see it throughout his disease progression, just in different ways.
My mom has been a rock through all of it. My dad is the love of her life and it is rare that a day goes by that she doesn’t visit him.
She believes that everything happens for a reason, and her faith in God has helped her deal with the changes in her life while still putting dad, me, and my siblings first. She has been there for us 24/7. We have come to experience first-hand that adversity brings people together, puts life in perspective, and allows you to see and feel the goodness of people.
Early in his diagnosis, while he was still living at home, dad loved to go to lunch with friends, and the invites were so numerous my mom joked that juggling dad’s lunch dates could be a full-time job. He enjoyed his friends and lunch dates so much that we decided for his birthday we would invite all his lunch buddies to a “Men’s Night Out” at the local Country Club. The only problem – they did not typically offer béarnaise sauce.
My dad loves béarnaise sauce. In fact, after his diagnosis, he would sometimes refuse to go to a restaurant that didn’t offer it, which was tricky because it is typically only served in fine steak houses.
On this occasion we arranged for the Country Club restaurant to serve the sauce, but because my dad knew they did not typically have it, he initially refused to go. After some real convincing he agreed to go, but only if he could bring a packet of béarnaise sauce with him to give to the chef.
We were a bit embarrassed as he came barreling into the party with the packet in his pocket, insistent on giving it to the hostess, but when he saw his friends gathered he forgot about it, at least momentarily. Then he was beyond pleased when we told him that the chef had actually prepared his favorite sauce, and afterwards said it was the best meal ever!
A few months later, at the local July 4th parade, he spotted the general manager of the Country Club and motioned him to the side, in the middle of the parade, to tell him that the club’s bottom line would benefit greatly if they were to add the delicious béarnaise sauce to the menu permanently! Thankfully, the manager accepted this recommendation with smile.
CONTINUING WITH OUR LIVES
Shortly after he moved into his first ‘home away from home,’ our family spent our first vacation apart from my dad. We went to Sanibel, one of our family’s favorite spots, thanks to my dad. We went to his favorite places, walked the beach, rode bicycles, and enjoyed our vacation just as if he were with us. My mom tried to change it up a bit knowing full well there would be a void, and she was right – we missed him.
We were uncertain if he would miss us, or be aware that we were gone, but on mom’s first visit afterwards she was greeted with a big smile, and he told her “you made my day” when she showed him pictures from the vacation.
At that time it was rare for him to speak in complete sentences, so his response suggested to us that he loves us and wants us to continue to live our lives just as he has hoped and prayed we would. It doesn’t make a difference what we are doing – being a college student, going to swim practice, lying on a beach; we miss him, but also know he would want us to continue living our lives.
At first, I kept asking why. Why was this happening to my dad? Why was this happening to my family? I didn’t understand why my dad had to have Alzheimer’s, why he had to forget his family and friends. I was sad because I simply didn’t understand why.
It took about a year for me to process through this grief, and start asking the questions how and what. What can I do to end this disease? How can I make a difference in the lives of millions of people suffering with it? How can I help ensure that other families don’t have to watch a loved one be taken by Alzheimer’s disease?
The answer was Bill’s Buddies, a team that raises money for the Alzheimer’s Association and walks in the “Walk to End Alzheimer’s.” To date we have over 1,000 members and have raised over $150,000. Bill’s Buddies means everything to me, and is the very beginning of my mission to end Alzheimer’s disease. It has been a huge help to my family and me – it has benefited our family more than you can imagine and is more than a fundraising tool – it is our how.
Bill’s Buddies is how we are fighting Alzheimer’s disease. The money we raise goes to Alzheimer’s support, education, awareness, advocacy, and much needed research. This is particularly important to me because, since early-onset Alzheimer’s disease is relatively rare, there are very few support resources for someone my age who has a parent affected by the disease.
ALWAYS WITH ME
Our lives, just like yours, are very busy and filled with experiences and opportunities. Five years ago my dad would have been right in the middle of all of it. He would have celebrated, advised, supported and worried about each and every venture. Today he is unable to join in our everyday activities. His days are spent watching the residents at Ganzhorn make crafts, watching them put together puzzles, watching them bake, and watching old television shows. He also loves a good nap and a taste of Graeter’s ice cream. He is content and well-cared for, but is now wheelchair-bound, can no longer communicate, has trouble swallowing, and doesn’t recognize me when I visit. Yet I know he is still always with me.
As I graduate from Kenyon College, in the back of my head I will hear him talking about my first day at Montessori School.
As I recount my first day of my first real job, I will hear him asking me about co-workers, what I had for lunch, and how I liked my cubicle. I would have told him that I loved my cubicle – and he would have called me a nerd. He also would have asked me if I threw foam peanuts at the other associates in my area. I would have said no, but that was something my dad did at his job! We would have laughed.
As I move into my first apartment, I will hear him laughing at all of the clothes and knick-knacks I have. As I unpack my shoes, especially boots of any kind, I can hear him laughing and singing “These Boots Are Made for Walking,” by Nancy Sinatra, which was a common joke he made.
As I walk down the aisle or dance at my wedding, I will hear my dad telling me not to trip over my feet, and that I need to make sure I don’t step on his feet while we dance. I would also see that sweat is dripping down his forehead – my dad was always nervous in a crowd.
As I hold my child for the first time, I will hear my dad tell me that “seeing your baby for the first time is the best feeling in the world.” I know that this would have been one of his most favorite moments – he has always loved babies.
Every day I am sad because my father is dying in front of me, but he wouldn’t want me to stop living. I am still going to graduate from college, move into my first apartment, walk down the aisle, and have my own children. And yes, I will be sad he isn’t there, but in my heart I know my dad will always be there. Alzheimer’s can change a person, but it will never change the relationship I have with my dad – a relationship that will continue to grow in spite of this terrible disease.