Marcia passed away at 1:15 a.m. on Tuesday, April 7th. Her graceful, courageous and inspired fight against Alzheimer’s/Lewy Body Dementia mercifully came to an end. Marcia had been in an irreversible, progressive condition for more than 4 years, and we saw her slowly fade from the energetic, fun and outgoing women I married 22 years ago on April 3rd. But the last month was particularly hard on her, and those that cared for or saw her regularly.
I don’t have a handle on my emotions yet. I knew this day would come once the diagnosis was made. I knew this day was coming when we saw such drastic changes in early March, and I knew death was imminent once hospice care was involved. I had been praying that she go quickly and comfortably, and in her last hours with me, she did seem comfortable, and she also seemed ready to let go. I cried when I saw her after she died, but I believe these were tears of relief for her, and joy that she was now in God’s arms. I felt a sense of calm that I left nothing unsaid to her, and while I don’t know if she heard or understood, I believe she was able to process how I felt about her, that I did the best I could to care for her, and that she had truly been a blessing in my life. But the concept of her dying, and me being a widower is the other side of her passing that I really hadn’t spent much time thinking about and tugs at my emotions in a far less joyful way.
It will be a few months before we know exactly what disease Marcia had. Clearly she had Primary Progressive Aphasia, but whether or not she had Early Onset Alzheimer’s is not so clear. Over the last month of her life, her symptoms more closely looked like Lewy Body Dementia, and it’s possible she had both. I will write what might be a final blog entry once have all the facts. I believe she had Lewy Body Dementia based on the symptoms/behavior we saw, and I just don’t think it was a coincidence that she stopped eating and sleeping the weekend Riley was home from school. To me, it seemed like a weekend our family together was the ideal time to say goodbye, and this kind of rationale thinking, and other examples I could cite, isn’t what one sees in advanced Alzheimer’s cases. We’ll never know whether she consciously stopped eating or if this was just part of the progression of her disease. But knowing how much she loved her kids, I just think she had decided she had had enough, and was ready to go after we were all home together.
Doctors, nurses, health aids, etc. have told me they have not seen anything quite like Marcia’s situation, where so much change had happened in such a short period of time, and all agreed that hospice was the right decision for her. Once under hospice care, she was taken off all medications and seemed more alert than I had seen her in weeks. But she didn’t eat and continued to lose weight and strength. The last four days of her life, she never left her bed and was given increasingly frequent doses of morphine to make her comfortable. I had always expected Marcia would one day be in a memory unit of a Long Term Care facility and thought we might be there by the end of the year. I thought she would minimally live in a LTC unit for a few years. Never in my most pessimistic thoughts did I think I would be planning a funeral before her 55th birthday.
As I reflect on Marcia’s life, she was a blessing to me and to so many others. We will celebrate Marcia and the life she lived prior to life with aphasia and dementia. We will celebrate the way she handled herself throughout the course of her disease. We will be grateful that Marcia seemed to control her own fate at the end. And being able to say goodbye, have Marcia’s sister come and see her, and several close friends tell her it was okay to let go and that they loved her is not something everyone has a chance to do before someone they love dies. Once Marcia was told she likely had Alzheimer’s 4 years ago, she knew what was coming in the years ahead. And she lived those years with as much grace as possible. She never stopped trying to do as much as she could, she had very few days where she didn’t smile and laugh, and she never lost her enthusiasm for seeing friends and familiar faces. She is the most inspirational person I’ve ever met. Though I’ve been missing the Marcia I married for some time now, today I’m missing her and the privilege I had of caring for her after all she did for her family for so many years. And I think about her all the time.