As I stood on a strip mall sidewalk in the dark, the misty rain that defines the state of Oregon falling on my head, I was silently crying inside. How did it come to this? How had I come to telling my dad, a man who had taught Astronomy most of his life, that when it’s dark it means the earth has rotated away from the sun and it’s nighttime? More baffling still was the blank stare greeting me as I tried to speak his language, to explain things in terms I had heard from him for as long as I could remember.
“Don’t you believe me dad?”
“Don’t you believe me dad?” I asked.
“Well I don’t think you would lie to me…” He responded hesitantly. “But it doesn’t make any sense. It’s 9 o’clock, it’s time for me to go to work.”
My dad had been diagnosed with Alzheimer’s a few months before this event and believed he was a volunteer at an adult daycare he went to each morning at 9:00. His confusion of day and night, his nighttime wandering and irritation were relatively new. There was more to figure out about this disease than I ever imagined, and I didn’t know how my family or I would make it through…
Standing under that drizzly night sky, I felt so lost, scared and alone. In front of me stood my father who had been a pillar of wisdom all my life, now arguing about whether it was day and night. Behind me, my mom was in the car, at the end of her rope from privately dealing with things like this for years.
My dad was never aware and never accepted that he had Alzheimer’s, even when told by a neurologist. He simply replied, “No I don’t.” and that was that. While his lack of awareness made things harder for us for a long time and was the cause of much conflict and resentment, I am now thankful that he never realized what was coming.
My Alzheimer’s Journey
That night stands out as one of the most stressful events, during one of the most stressful periods of the Alzheimer’s journey for my family. My dad was fighting for his life, for his memories, for his independence; and he believed that we were all against him.
We didn’t understand the scope of Alzheimer’s or what challenges were to come. Before we were personally affected, we thought dementia was all about memory, but now we understood that it is so much more.
We were at a crossroads: Alzheimer’s was here and there is no cure. Our only choices to make are about how we, as a family, would respond to it.
I began to see patterns emerge in how others responded to their loved ones having Alzheimer’s. Some seemed to wrap themselves in grief as if it were a comfortable blanket: unable to stop the cycle of worry and tears. Believing that they are honoring their loved one by staying in pain. They chose to repeat the same story and reject any suggestion that things could feel better. They isolated themselves, had trouble sleeping and other health problems that seemed to stem from long-term stress.
Others who had similar “facts” had a very different response. They too, were grieving and overwhelmed, but they made a point of focusing on the good things that were happening – however few. They could hold onto happy or peaceful moments and describe them in such detail that a smile would come to their face.
This second type of person had figured out how to plan for the challenges ahead and remain focused on the good things that were happening now. I wanted to be one of those people!
I got to work getting organized. I researched what we needed to do immediately and worked with my mom to make sure we knew exactly what they had in place legally and financially. Alzheimer’s is a costly disease. I knew that understanding the resources that would be available was going to be the key to making decisions about the eventual how, when and where for care as my dad got worse.
As a family we had many discussions about some of the common challenges we would likely face and how we wanted to respond.
In addition to all the planning and decision making, I learned about what was happening in my dad’s brain and body as the Alzheimer’s progressed. I wanted to understand why his behavior and thought processes were changing so drastically so that I could help him feel more at peace. I also wanted to learn how to connect with him now and as he changed so that the time we had left wasn’t all about what we were losing, but also included new memories I could cherish.
When big things like this happen, you become very aware of how well you manage stress and take care of yourself. It became blatantly obvious to me that I needed to up my game in the self-care arena! My emotional eating and stress levels added pounds to my waistline, and I went through more boxes of tissues than I care to admit. At times this journey is HARD… and SAD. Sometimes you need to have a good cry. But you also need the tools, skills and habits that allow you to pull yourself out of grief and enjoy life.
My dad is now in the late stages of his Alzheimer’s journey. He rarely speaks and when he does, he doesn’t make sense. He hasn’t known my name for well over a year, but I believe he knows that I love him and that we are connected. We communicate through expressions – for example, I can usually get him to wink if I wink. He makes gestures to let me know when he wants me to look at something, if I’m being too loud or if he wants something. He’s a long way from the father who raised me, but he’s still my dad and I love him with all my heart.
I’m on a mission to help family caregivers navigate the dementia and Alzheimer’s journey. While no one can change the outcome, with the right help, you can certainly change the journey.
ABOUT TARA REED: Tara Reed is an artist and the creator of www.PivotToHappy.com – a website dedicated to helping family caregivers of people with dementia and Alzheimer’s. She is the author of “What to Do Between the Tears… A Practical Guide to Dealing with a Dementia or Alzheimer’s Diagnosis in the Family” and has personal experience with Alzheimer’s as well as professional certifications from the Alzheimer’s Association.