Search

Caregiver Stories: Downward Staircase

At June Care, we’re building the best-ever virtual care team. We support family caregivers as they care for their loved ones. Our Caregiver Stories series features crowdsourced posts from our community of caregivers.

This week’s submission comes from Miriam Green--


‘Downward Staircase’


My brother Simon is arriving this Friday for a two-week visit. I am so excited to see him, and also a little trepidatious—he has not seen Mom since she moved to the closed Alzheimer’s ward. Simon has spoken to her by video chat quite often, and he gets daily updates from Daddy about how she’s doing. But this will be his first in-person visit. I hope it will not be too much of a shock.


I was with Simon in California when Mom was first moved in May. I sobbed achingly and mournfully and could not stop, and Simon’s presence was a great comfort to me. We shared that wretched, intimate experience as only two siblings could understand.


Mom is much weaker physically these days than she was when she lived at home, and more prone to crazy, disjointed conversations that run the full gamut of emotions. Yet, if I look at some of the earliest blogs I wrote, I see that even in 2014, four years after her diagnosis, Mom was exhibiting the same symptoms as today, just in a lesser form. For example, the utter confusion and blank memory to know where she was or what had just happened. We knew even then that music was her touchstone, that her moods were mercurial, and that she could no longer be trusted to function on her own within societal norms.


It was easier back then to connect with her on her level. The disease had taken less of a toll.


Facebook, in its strange algorithmic wisdom, chose to send me a photo from three years ago of the four of us, Mom, Daddy, Simon and me, standing together in Netanya. Mom has this far-away gaze as if she’s looking at the sky instead of the photographer, but she is smiling and appears happy.


We are in a different place now.


I am reminded of a friend’s description of how her son with a hearing impairment would learn new skills. “He learns like this,” she said, tracing a 90° vertical line with her hand that ended in a plateau, as if she were creating steps in the air.


I see us also following that pattern, but it is a downward staircase that we are traversing. Each new step or landing is a hard-fought emotional battle to accept Mom’s diminishment. This is what it means to mourn for someone who is still alive.


I often keep my emotions in check when I think about Mom, or if I’m asked how she’s doing. How do you explain the whole Alzheimer’s phenomenon to someone who is not living it? Will they understand the loss, the frustration of disconnected interaction, the simple encounters that give us joy?


Perhaps this is the case with anyone who is ill—the circle of our lives expands to include a world of activities that are outside the norm. And yet, my life continues with its day-to-day essential activities. It is an uneasy unbalanced existence that I negotiate daily.


My commitment to Mom remains strong despite how easy it is to say that she won’t remember whether I’ve visited or not. A friend reminded me of a quote by Maya Angelou:


“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”


And so, with Simon at my side, I hope and pray we have the opportunity to bring Mom some happiness and sunshine, and that those feelings of unconditional love last for a long time.


-Miriam Green


Miriam Green is the author of The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver (Black Opal Books,2019). She writes a weekly blog at The Lost Kitchen, featuring anecdotes about her mother’s Alzheimer’s and related recipes.


Thanks for reading. If you have your own thoughts or experience you'd like to share, you can email a post to team@junecaregiver.com.


Want to learn more about our community of caregivers? Click here




0 views