I think part of it is about our public face and a reluctance to show our loved one at less than their best, to preserve their dignity at all cost. There is also perhaps too much sensitivity to the discomfort of the external world where most are ill-equipped to deal with those who are in this awkward stage of life. Many people begin to retreat from the world when their memory falters. Aware that something is off, they cut back on social encounters. My late father also lost memory, but was not one to retreat from anything. He made his rounds each day to his familiar haunts. Some people were quite gracious as he retold his litany of stories for the umpteenth time, yet I often felt that others expected him to retreat. Perhaps they felt it was a bit unseemly, preferring that he preserve the image of himself at his career pinnacle, like an aging movie star who drops from public view to preserve the myth of eternal beauty. I knew what my father would have said to that and it would not have been polite. Sometimes I thought it on his behalf.
In this world of blogging I write about what I encounter and as an artist I go one step further and paint and talk about those encounters. I use my artwork as a way to better understand my world and to create a dialogue with others. That makes it hard not to address these changes in my mother, the person who has been my hero and role model for much of my life. My sister was the first to shatter that barrier in her blog aptly called Alzheimer's Sucks, But It Is What It Is.
"It is what it is" - a phrase we often repeat to each other. My sister and I share a pretty matter of fact attitude as well as a deep love for our mother. I figure given that, anything we say comes from a place of love and confronts the realities of life. With that assessment I too decided to dive in.
I've been asked to participate in a video that is being done for a caregiver's conference. There I will exhibit this body of artwork which I am planning. They have posed three questions to me to contemplate prior to filming.
1. What is the most challenging part of having a loved one with dementia?
2. What is the most challenging part of care-giving for a loved one with dementia ?
3. What is the most rewarding part of care-giving for a loved one with dementia?
And so I've begun to contemplate this experience. Our relationship with a parent is complex. Often we are still working out issues with them when suddenly things change and they need us in ways we never imagined. I've watched friends with unresolved relationships struggle with a sense of duty towards a parent who frequently made them grit their teeth. My relationship with my mother has always been comparatively easy. We share interests in art and literature. We have some similar threads in our make-up and understand each other. Because of that I have always felt a sense of empathy for her and she for me. That causes me to join her on this journey, to feel for her deeply when she is confused or fearful, to appreciate the parts of her I still see within. And yes, to feel the loss of what we once had even as I don't want to diminish what we still have.
Suddenly this competent thoughtful woman is reliant on me. It is a switching of roles between parent and child as I gradually lose the person I knew. We used to have discussions of books we read. Now she can't retain the thread of the story. We traveled together on many trips to Europe. Our first trip followed my breakup with an old boyfriend with whom I had traveled. In its wake I decided I wanted to build and share memories with someone who would always be a part of my life and I reasoned what better person than my mother. It never occurred to me that she might not be able to retain those memories at some point in the future. So one of the challenges is the inevitable loss, both hers and perhaps selfishly mine.
One of the hardest parts of caregiving is not knowing what comes next. You know it doesn't get better, but there are plateaus. You don't know how long you get before things worsen and you don't know exactly how it will worsen. I don't want my mom to feel fearful, to worry about this loss she lives with daily. She reports to me that she is "farmisht" (Yiddish for mixed up), aware that things are not working quite right. I want her to enjoy her remaining time, to feel connected and supported and productive. And so I call her each morning and fly in often to see her. I do what I can do from many miles away. I don't take anything for granted. That is the rewarding part. It forces me to recognize that life as I've known it is fleeting and I better do everything I can do to appreciate and support her while I can. I won't get a second shot at this so I better show up. At the end of the day it is the relationships that matter.
For me it is not only my relationship with my mother, but also my sister. I am fortunate to have a sister as a partner in this. For much of our lives we followed different paths meeting up annually around the Thanksgiving table. At crisis points we talked more frequently, but for the most part we were both busy with our very different lives. Because she lives closer to my mom she takes on a lot, a weekly visit which enables my mom to live in her home. We divide other responsibilities, I deal with finances, she deals with health. I trust her completely to always do what is best for our mom. Just as I commit to my mother, I also have a commitment to my sister. We're in this together and I do my best to hold up my end of things. In the process I have learned to appreciate my sister on a whole different level. That is one of the many gifts my mother's circumstances have bequeathed me. It occurs to me that someday my mother will become memory, made of that very ethereal substance she finds so hard to retain. My sister will be one of the few people with whom I will share that precious memory.