By Rebecca Schram
My Dad was a hard-working and career-driven man for the majority of his life. Even though he had a successful career, we would spend every weekend together when I was younger exploring the City of Chicago and trying different ethnic foods and exploring the many diverse neighborhoods. Every weekend was an adventure for us. One of our favorite things to do was eat Chinese take out, and go bowling every New Year’s Eve. I will always remember his patience and kind way of living, and the true joy and laughter he shared when we were just doing the simplest of things together. He was a wonderful father, and we loved each other very much. Through the best and the worst of times, we stuck together finding comfort, joy, and encouragement in each other’s love. I will also always remember his strength and perseverance, and how he held our family together through both trying and joyous times.
Before my father’s diagnosis, I had recently moved out on my own and was living with two girlfriends in the city. I was ready to start my life on my terms, I had just accepted a management position with my company and had also recently met the man who would later become my husband. I was thinking a lot about my professional goals, and personal life goals at the time and working really hard to build a life I could be proud of and call my own. My time and energy were devoted almost entirely to making this happen.
On Easter one year, after I had moved out on my own, I invited my parents over to my apartment to celebrate the holiday. My dad got lost on the way to a place he had driven all his life. I knew then that something was not right, but he was resistant to getting medical attention at that time. Later that same year, my parents needed to move. Before we could get my parents safely into their new apartment, my father drove off and was missing for several days. It was absolutely terrifying for everyone involved, but he was safely found and we were able to slowly start to get them into a better situation. This really marked the start of the hardest period of my life, and the most transformative.
There was a period of transition in our relationship that was very difficult, my dad was so resistant to seeing a doctor in the beginning, it was hard to understand what was actually going on with him. So many things were frustrating and terrifying. After he agreed to go to a neurologist, and I was able to go with him and become involved in his medical care, a lot changed for us because we knew what was actually happening. Our relationship returned in some ways to how it had been- filled with love, and yet it was very different in others because I understood what I needed to do to connect to him. I was able to put my frustrations aside and be there for him. I became in some ways what my father had always been for me, a protector and gentle guiding hand trying to keep him safe and let him know how much he was loved.
Becoming a caregiver was the biggest learning curve for me, as my father was a strong man who was used to doing things his way, and in the beginning, it was hard for him to accept that his diagnosis of Alzheimer’s was real. It was a crash course in caregiving, starting in major crisis mode, and eventually becoming more manageable as I found strength within myself and support through our community.
I think it was because of our special and life long bond that I was able to meet my father with love, even in the most challenging of times. Love motivated me to adjust my thinking and communication with him and to see him for who he always had been to me, and who he was inside. I never lost my loving father, even as his neurocognitive functioning and mobility declined. I saw very clearly who he was through his genuine smile and expression of emotion. I learned to listen and to see him on a deeper level, and I always found him there, truly.
I’m very grateful I found the Alzheimer’s Association when I did. After my dad’s diagnosis, I attended a care navigation meeting by myself, because my father refused to go. It was the first time someone was able to relate to me about my situation. I was 31 at the time, and my peers had no idea what I was going through or how to help. I was able to talk honestly about my situation with someone who understood what I was going through. They offered ideas, resources, and support for caregivers. It opened my eyes to the fact that there are resources available, you have to be willing to look for them, but they are out there. It also reminded me that I needed to take care of myself in order to be able to take care of my dad.
Three months before my father’s death, we moved him into an assisted living facility. He was entering the later stages of the disease at this point. However, his death was actually very unexpected, leaving our whole family shocked. One week before he passed away, I was able to visit and spend some time with him. We talked a lot about the past and the future. He knew I was applying to graduate school and he encouraged me. We told each other how much we loved one another, we didn’t know it would be the last time. I am so grateful that we had that chance, and what a comfort it has been to know that he knew how much he was loved. I have no regrets, because I really did try to do the best I could, and I know my father knew that. In some ways, we feel his passing was a blessing and that he did not have to go farther into the cruel grips of the disease. I think we find peace in that.
Alzheimer’s is a cruel and unforgiving disease that steals from those living with it. I have anger, I have hurt, it took from me someone who meant the world to me, and I miss my father every day.
I wanted to share my story because I think it could help someone else. Meeting someone who understood what I was going through meant more than I can express. As my life goes on, I hope that I can be that person for someone else, maybe many others. I hope to stay involved with the Alzheimer’s Association, and maybe even work with them one day using my skills as an art therapist and licensed counselor. As my father always said, “Life is not a sprint, it’s a marathon”. And I keep him with me as I run it.