Most of the stories I've posted here have been happy ones, as it should be. But one of my motivations for this site is the desire to help others who may have a loved one who is struggling with dementia. In Diane's case, a mere four months after her diagnosis, she was gone. So I hope to offer some encouragement here, by way of demonstrating the balance between cherishing the good times and processing the difficult times:
My journey of grief, now in its 25th day, has taken an interesting turn. I finally realized, as I noted earlier, that I have to separate my grief over what happened to Diane (which made sense when she was alive, but not now; she is happy now) and my grief over what is happening to me. I can't carry both at the same time! Yet, while I mostly focus on memories of our happy life together, I also have to process my sadness over the last four months of our life together, even though Diane's suffering then likely is forgotten, swallowed up by the joy she now feels. But though she isn't suffering, I am, and I have to process. So I made a list of the five hardest moments of this journey, and have cut and pasted my journal entries from those days along with some commentary written today.
December 11, 2020: The unit Diane is in is near a small airport, not a commercial airport, but a rinky-dink one used for private planes. When Diane called last night, she was worried about the airplanes, thinking at times that she was going to have to fly somewhere, or that she was already on a plane, that sort of thing. She did accept my reassurances, but this shows me that she has a long way to go in her recovery process. I think that benign circumstances like this can be triggering for her. Oddly, toward the end of the talk, she said, "I hope we don't miss our connection" (likely another airline reference). Surprisingly, this felt like a good talk. I was able to enter her reality and connect with her. [Now that she's in Heaven, I can't help feeling that we have in some ways "lost our connection", and that's hard for me. One day, when I'm with her again, our connection will be even better than it was during our marriage. But in this in-between time, it's hard. I know that she still loves me, and I love her. But though our separation is a temporary one, it can be a devastating one.]
January 27, 2021 - Diane came home from the unit last night, but was preoccupied by the need to record everything we did and when we did it. She wrote down the labels on all the folders on the kitchen counter, for instance, and even the time when I set an empty white cup on the counter. It was devastating. [I now think that she was struggling with the awareness that her memory no longer worked well, and was seeking a way to compensate. She's whole now, but this still is heartbreaking for me to recall. A few days later, she tried to draw me a love note, but could only write the letter "R" underneath the heart, which also was gut-wrenching. See the top two photos, below.]
February 3, 2021 - A very important moment. I told Diane about her diagnosis last night, after she asked me, "Can things like this actually happen in the real world?" It opened the floodgates, and we had the best, lengthy conversation we have had in a long time. But she was convinced when she woke up this morning that this was her last day on earth. She made a list of life regrets going back to childhood and asked God to forgive her sins and mistakes. We both did a lot of crying. She asked me to bring each cat up to the bed with her to say goodbye in turn, and even the shyest of them cooperated with full-throated purring. We affirmed our love for each other and our deep gratitude to God for bringing us together. So if this is not really the day, it is a symbolic dress rehearsal. [She knew. In less than a month, her earthly journey was over.]
February 23, 2021 - Looking at photos with Diane. My tears are flowing copiously, for this is probably the last time we will be together in our home. I have to decide between being a physical caregiver (which has proven too overwhelming) and being an emotional support person. She will likely stay in the hospice house, and I will visit her as often as I can, perhaps three or four times each week. Last night, Diane whispered, "Jesus, hi! It's Diane!" What a beautiful prayer. So simple. I wish my faith were that childlike, and that I didn't get wrapped around the axle with problems in systematic theology and philosophy. Of such is the kingdom of Heaven. [Self-explanatory.]
February 28, 2021 - This is the hardest road, by far, that I have ever traveled. Yet, God is with us. I am grateful for being able to move a reclining chair next to Diane's hospital bed and just sit with her (eventually, try to sleep fitfully next to her) and hold her hand. I believe that she can feel my loving touch, and hear my voice, even though she otherwise seems nonresponsive. She is snoring peacefully, and it is much like when I would awaken in the night and hear her. That is oddly comforting, and I want to remember every second of this in-between time. I have never felt closer to her, even in my extreme sorrow. One life, one love. [See the bottom row of photos. Within sixteen hours of my having made this post, she was gone. It all happened so quickly, a mercy for her, but a challenging grief trigger for me.]