The Next Chapter

(written the evening of July 31, 2018)

I made her bed with the new clean sheets and comforter, and then added the green accent pillow for a pop of color. I placed the toothbrush holder, laundry basket and waste basket in the bathroom. I arranged pictures of family and friends throughout the room — on shelving and walls — loving all the memories those pictures held and hoping they would help her hold on to those memories as well. Everything looked perfect. We were ready for the next chapter in her life’s journey.

I always imagined living out this scene with my daughter Maggie as I helped her move into her first college dorm. Feelings of joy, anxiety, sadness, and pride would swirl throughout our activities as we set up the room, but ultimately, we would celebrate her next chapter. I would be thrilled for her life ahead. Instead, I was preparing the room for my mom, who at 77 would be moving into her new room at a memory care facility in my neighborhood. After a ten-year battle with Alzheimer’s, her care needs had grown beyond those that a loving husband and family could provide. Setting up that room allowed me a time for reflection and clarified a number of thoughts and feelings, underscoring the ache that life seemed out of order.

We started seeing glimpses of dementia when my oldest daughter, Maggie, turned one. That was 14 years ago, when I was only 30. I realize now that my other two children (Anna, 12 and John, 9) don’t know my mother without Alzheimer’s. They adore her, but never knew the full woman she really was. I acknowledged that my mother was never able to be a true resource for me as I raised my children (e.g., how high can a fever be before I need to worry?), because as the disease progressed, she would only seem to remember and focus on negative information. I swiftly learned to report that “all was great” with the kids, work and family. That kept her spirits up and conversation happy. But it was not the relationship I had expected or hoped for.

I realize that I am not the only person to lose a parent or loved one. And I feel privileged to have had more than thirty years with the support, encouragement and unconditional love of an incredible mother. But I lost her too early. And I lost her while she was still on this earth. That seems particularly confusing at times. A friend recently introduced me to the term ambiguous grief. It was a new concept for me, but it’s rather spot on. I will have to think that through over the next many days, weeks, and months.

I wrote another piece which includes lots of statistics and information on Alzheimer’s, and I encourage you to read it and learn more about this disease. The math says Alzheimer’s will impact your life in some way. But I can’t get into that tonight. Tonight is my last night with my mom before she moves into her new home. We had a lovely family dinner with my parents and then I helped mum to bed. As usual, she was exhausted by the transition to nighttime and anxious as she lay in bed, trying to calm down from the hectic day. I held her hand, told her that I loved her, and assured her that I was here to help. She whispered, “Thank you for helping me.” I responded, “Of course! You helped me my whole life. You took great care of me as I grew up.” She broke into a huge smile and asked, “I did?” I smiled again and said, “Yes, you did. And it’s my turn to take care of you.” As she shut her eyes for the night, she responded quietly, “That makes me feel good.” Me too.