I was driving Charissa’s car to go grocery shopping when the image hit me. I pictured myself holding Cindy and “dancing” as she held on tightly, partly because of her lack of balance, partly because holding onto me is the most secure thing in her life. I was not feeling the same emotions I do when actually in such moments, but rather the emotions an observer might feel at witnessing the touching scene. I sobbed.
When in the actual moment I am not sad. Even those moments when Cindy is particularly helpless, a shell of her former self as an “Expedition Woman,” call for something other than sadness. Compassion, practicality and good cheer, tools needed for addressing the situations at hand, are elicited instead.
During June I dedicated this blog to brain health rather than our journey together. There were no significant milestones to report. A general deterioration continued with no definitive plateau reached. That was a problem. Milestones, though negative, let me know I’ve made it to “here” as a caregiver and now need to prepare for “there.” Throughout June I did not know how far away the next “there” was or even what “there” should be.
Feeling so ungrounded perhaps contributed to my emotion as I observed our touching image in my mind. Yet I finally realized this always was when I was sad about Cindy, during time for myself. I am always shopping or driving or going for a long walk, never am I with Cindy, when the empathetic perspective of an observer overwhelms me..
Now that I’ve confronted this about myself my heart goes out to our daughters. Seldom am I not with Cindy. Even when we have companions over I usually am in the next room, keeping one ear open in case I’m needed. Our daughters, in contrast, usually can only feel from a distance, observing in their own minds whatever saddens them about their Mom. Action is a tonic for melancholy. When caregivers get depressed I suspect they feel helpless in their actions.
The sad perspective of the observer happened with my Mom. Taking care of her was challenging once we started our family, but the saddest moments came during her last few months in a nursing home. The image of a nurse holding her hand during her final breaths, with no family members present, has haunted me ever since.
Mom ended up in a nursing home because she stopped eating here at home. We responded by sending her to the hospital. From there she was sent to the nursing home to convalesce, where she passed away six months later. Had I the same knowledge then as I do now I would have called for hospice care once she stopped eating.
With that realization I now know where “there” is for the next milestone, the final milestone at that. Cindy still eats everything I do right now, as long as I quite literally spoon feed her. Given the usual progression of Alzheimer’s that will stop at some point. If she struggles to eat I will call hospice rather than the ambulance this time around.
At the time Mom stopped eating she could still walk a little on her own, Cindy, once a hiker supreme, has not been able to walk on her own now for a longer time than Mom spent in a nursing home. After a month without any discernible milestones, just continued deterioration, I needed to have this final milestone in front of me, whether near or far away still.
This identification of the next milestone gives me tremendous comfort in another way. I never could get over the dread of one morning waking up next to my deceased wife. The thought of the first morning touch being cold or rigid just gives me the creeps. Once hospice is brought in I will sleep somewhere else in the house … though I intend to be the one holding her hand at the end.