Looking for One Thing, Finding Another

I wasn't planning on writing a Mother's Day blog, but something happened last evening that prompted this. It is the second year since my mother died, and in that time I have felt her presence every day. Last night I was looking for a file, trying each flash drive in my computer as I tried to remember where I had recorded it. In the process of looking for one thing, I ran across something else, kind of a metaphor for life, looking for one thing, finding another.

It was a folder titled simply Mom. Within I discovered a video that I had recorded of her with a memory jar I had given her long ago. Originally it had been a gift at a time when my mother's memory was quite good and I never thought of it worsening. I purchased a ceramic jar that had the label "memories" carved into it. I then wrote out memories that we shared or that I had of her, some from our trips together, some from my childhood. She had once told me that she always tried to create memories for us, her children, to carry forward into our lives. It was one of the reasons I took her on trips to Europe, I wanted to return the favor and create memories for her. The memory jar was an amalgamation of both of our efforts, an acknowledgement of the value of shared memory. It was a litany of what I loved in her. 

The jar sat on a shelf, high on the bookcase, until I noticed it on a visit. I took it down and had her draw out each memory and read it aloud. Together we remembered. I've written about this before in this blog, but a piece of the story that I don't think I shared, was the fact that I recorded it. I was just beginning to acknowledge that my parents would not always be there and this felt significant. I knew I would someday, when my mother was no longer with me, cherish this recorded moment,  even though I could not fully conceive of a world without her.

I've told the story of the memory jar many times. Somehow watching this video felt different than the retelling. It was the first time I had watched it, six years after I recorded it, both parents now gone. In it my mother and I sat at the kitchen table, the familiar turquoise blinds of my childhood to the side and the wall behind her with just a glimpse of some memorabilia from our travels together.  My father sat nearby in the gold chair in the living room. That chair now resides in my studio. It was just my mom and me interacting together in a world of our own, my father at the periphery as was often the case. Her smiling face, her voice, all the expressions and nuances we take for granted in another person, the things that create their essence and the essence of a relationship. What struck me was that each memory was an offering, a love letter to my mother, not only mailed, but received and reciprocated. If I ever doubted whether I had let her know how deeply I cherished her, I had only to watch that video.

It was 2011, both my parents together, but the cracks in memory had begun to show. My father had been losing memory for a long time, but we were just coming to terms with the fact that my mother was as well.  At the time, I remember being shocked when she could not recall some memories that I would have expected to be deeply embedded. Now as I viewed it with hindsight, I felt her largely intact, just a few gaps beginning to show. 

As her memory loss progressed over the years, I again went through the memory jar with her. She no longer remembered the story behind it and now gave me that sweet apologetic smile that indicated she really didn't have a clue, this was all new to her. Nonetheless she was happy to play along if I wanted her too. Fewer memories struck a chord the second and third time through. That meant I told her more of the story, reminding her of our shared history. "Thank you for helping me remember," she said. 

I understand much more about memory now than I did then. I understand how someone we love can be housed in our vision, in our heart and in our understanding. I understand how they can become part of the fabric of our being even in their physical absence. I understand how the mere act of writing about them can cause my eyes to fill with tears, not of sadness, but of deep gratitude.

I've included a very brief excerpt from my video.  I encourage you to try a similar exercise as a gift for a parent with or without memory loss.

Always an Artist

I recently spent a week beginning the disposition of the belongings of my late parents. It is an odd project to dispose of a lifetime of things, things that conjure the two people who were central figures in my world for much of my life. What to discard, what to keep? One thing I don't plan to discard is my mother's creative work.

I've written of my mother's collaging, or as that former first grade teacher termed it, "cutting and pasting". She began this activity in the fall of 2013 and concluded it a few weeks before her death in 2015. With roughly one a month she left 20 albums, a "legacy" she termed it. She began this project when Alzheimers robbed her of the ability to pursue her favorite activity of reading. Each morning she eagerly awaited her newspaper so she could begin to cut it up and paste it in her notebook. At the time we were just glad she had found something that seemed to engage her, but as I carefully perused her albums I was struck by how her style evolved. I could see her mind working and felt her presence surround me.

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Carefully I went through each one, page by page. I put them in date order so I could better see their evolution and took photos of those that struck me the most. My plan is to frame some of them and perhaps show them along with my painting of her cutting and pasting. They clearly underscore the fact that creativity can be sustained, perhaps even enhanced, as memory fades. With this perusal, I found myself analyzing her composition, her juxtapositions and repetition of forms. Often I felt as if she was perched on my shoulder, especially as I read her little notes jotted amidst her collages.

I was touched and intrigued and thought I'd share some of her efforts with you.

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Her albums began in October 2013 with a few pages recapping her life, her children, her teaching career, my father and how long she had lived in her home. Then she began with her first effort. Her early work was very simple, she took images that appealed to her and pasted them on a page with white space surrounding them. You can tell from the content that it was fall and she was already beginning to paste leaves in as well (1).

Soon that morphed into a more overlapping style and this is where I began to notice some interesting things. She clearly had a fascination for faces and repetition of forms. Notice the upside down burger mimicking the pumpkin face (2) ? You can see how she was using grapes to create a sense of flow in the image, drawing your eye along with it. Now her work was beginning to overlap creating a denser image.

At the end of that first book was a note that she had sung Happy Birthday to my sister and my sister told her that it made her day. I felt a surge of satisfaction. I talked to my mother each morning and my sister spoke to her in the evening. She was no longer able to remember birthdays, but I had reminded her of my sister's birthday. She had said, "But I don't have anything for her!" I had suggested she sing to my sister and the suggestion had stayed with her all day, a long time in Alzheimer time.

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She often included newspaper articles, sometimes about sports; she was an avid basketball fan. She told me she included anything she saw about Obama who she firmly supported. A newspaper article might find itself enhanced by visuals, often with repetition of form, notice the hands of the M&M guy and the basketball players (3).

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Mom was drawn to images of families and it appears that she had a fondness for William and Kate. Here they are adorned with a gingerbread house and Tinkerbell, filling out their world with sweetness (4).

While she had begun to overlap images, she hadn't firmly shifted from individual images yet. She was often conscious of the relationship between opposing pages and might divide images to get some repetition (5). She often used her pages as a notebook, noting important things like her breakfast or the fact that her paper hadn't come yet. This was the high point of her day and if it hadn't arrived by our morning phone call, I immediately called the paper to urge them onward.

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Her work often had a bit of whimsy in how she separated images. Notice the child reaching for a tidbit just out of reach (6).

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About six months into this activity she began to overlap imagery in earnest and make use of full page spreads (7, 8).

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Now she was hitting her stride turning out imagery which merged black and white and color (9) and using swatches of color like mosaics (10).

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I've been teaching classes in family history collage and on one visit I brought in printouts of family pictures and decorative papers. She did a collage while I was there, but then I left her with a bunch of family images out of which she did my favorite creations - the crowns of strawberries for her mother and my sister. It made me regret leaving images of me out of the batch I provided her.

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She continued her work for another ten months and while not everything worked, the ones that did made me take a second look. She always had an artist's eye and I admire not only her sense of purpose, but the creations that came out of it. Here is a sampling from the remaining months of some of my favorites.

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A Model of Hope

A few days after I returned from the museum conference in San Francisco, I attended a conference on dementia in St Paul. While the museum conference was small, a little over 100 rather hip attendees, the dementia conference had around 1300 people and a lot more grey hair. Many of us in our 60s were attending to learn more about how to support parents coping with Alzheimer's. Because I am doing a series of artwork on memory loss, I also wanted to see if I could learn some facts on which to build my work. Ideally each piece supports a relevant aspect of the disease.

One of my initial questions for exploration was what happens to identity as we lose memory. My sample of two, composed of my mother and late father, seemed to indicate that identity is persistent, remaining even as memory fades. My mother, the former first grade teacher, "cuts and pastes" each day. My father, the college professor, used to make his rounds to tell his stories at the university.
My observation of persistent identity was supported by our speakers. One shared several anecdotes. One was about a gentleman who each day would get up and then pull himself under a bed. What was he doing? Finally someone asked him and he reported that he was fixing the drive train. A former mechanic, he was reenacting a familiar role. They in turn entered his world suggesting he might want a pad because the floor was oily and offered him a blanket.

Another gentleman would poke his head into each room at a certain time of day and check on the residents. A former doctor, he was making his rounds. They asked if he would like a nurse to accompany him lest he start examinations and he happily agreed.

I especially appreciated a talk by John Zeisel, author of I'm Still Here and President of the I'm Still Here Foundation. Zeisel spoke about choosing the model of hope rather than despair for dealing with the disease. The public narrative is largely one of despair complete with social stigma. It is the perspective that it is all downhill from here and results in withdrawal from the world.

I remember when my father was losing memory, a friend of his suggested that his frequent presence in the world in his diminished state would tarnish his legacy. Like an aging beauty, it was presumably his time to retreat to preserve the perception. I think that is often how families respond and I understand where that comes from. My father however was never one to retreat. He would have responded with a none too polite expression.

Zeisel proposed that if we approach with hope we get curious. It occurs to me that my exploration through artwork accentuates my curiosity. When my mother speaks of feeling that she is in a wilderness, I begin to contemplate what that wilderness looks like. It has begun to bring me into a different place.

In a model fueled by hope we see the person for who they are, not her remaining skills, but her essence. We do things together, go places. Our loved one feels less lonely, as do we, for we forge a connection with the person who is there and appreciate their abilities.

He noted that a lot of programs are inspired by Montessori programming. Much of our brain is hard wired to appreciate nature, use landmarks, facial expressions, visual expression and respond to touch. An awareness of these facets can help us in creating meaning for our loved one.

There were two points that he mentioned that tied closely to my observations of my mother. The first was about identity that remains and can continue to be expressed in their environment.

The second observation is that even while they may not remember the particulars about an experience, they remember how it made them feel. My mother associates me with doing things from our prior travels. When I come in to visit she says she looks forward to the fact that we do things. No, she doesn't remember what we do, but that isn't the important part of the experience for her.
A program within I'm Still Here is ARTZ which focuses on arts programming, developing collaborative programs with artists and museums that engage those with Alzheimer's.

Sean Caulfield, director of ARTZ, spoke about their programming and the principles that underlie it. There are three parts of the creative process.

Imagination-freeing one's self from mental constraints
Action -perception, sensory reaction
Reflection - how can we do it better

The first two are unaffected, also consistent with my mother's creation of art. I have often envied her ability to suspend judgment and just create. It is a state artists often struggle to achieve. The ARTZ program works with both the visual arts and poetry and many of the artists create work that both surprises and delights.

I was especially touched by artwork Sean shared from a person who could no longer speak. It was of a tree with the word "mad" written by it. When asked why the tree was mad she wrote "No longer in the forest".

I thought of an elderly person isolated from the world, no longer able to communicate through speech. I'd be mad too. Artwork remains a vehicle for expression. If we listen carefully we might just learn something.

The Private Face

I have written about my mother and her growing loss of memory with some hesitation. It took me a long time to put words to this and even longer to share them. My mom is a private person which argued for me keeping this challenge private. My sister is on this journey with me and we have discussed the issue of privacy. Is it better to confront the stigma of Alzheimers by sharing one's story? And what exactly is behind this fear of being public about something that has touched the lives of virtually every one I know.

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.

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Into the Wilderness

"I’m confused", my mother reports when I call her in the morning. "Where is everyone? I feel like I’m all alone. Has everyone forgotten about me? It's like I’m in a wilderness".

"I haven't forgotten about you", I reply. "Here I am with your morning call and Sally will be there soon". 

Every morning I coax her through her day. "What day is it?" she asks. Time is a slippery devil, it keeps changing, never standing still. On top of the refrigerator is a large digital display with the day and time in red.

She reads it to me. "Monday, 8:35" I remind her to take her pills and she goes to her pill box. "Is today Monday?" she asks. We again establish that it is Monday and she takes out the Monday pills."There are an awful lot of pills", she says, the same statement she makes every day. "Who is coming today?" she asks again. I remind her that is it Sally. It is a short list, the same person virtually every day except when my sister arrives. I repeat myself many times matter of factly. I have long ago moved past irritation. It is what needs to be done. Each time she asks, it is a new question for her. "I’m so glad you help me to know what’s coming in my day," she says gratefully. "I couldn’t live alone without that".

My mother is losing memory. I try to pinpoint where it began. Five years ago she was fine. My late father's memory loss was more severe and perhaps overshadowed her more gradual diminishment. She has been on a plateau for a long time, not great, but not terrible either. My sister and I had adjusted to this new normal when suddenly the ground beneath us shifted abruptly, the floor of a crazy fun house dropping suddenly, our stomachs lurch with it. We evaluate what we need to do to support this change. We worry about her being afraid, but take comfort in the familiar person still there in the middle of this. The core remains despite these changes.

 

I am intrigued with her description of her experience, a wilderness. I am surprised that she can identify her confusion, perhaps a stage along the way until she is lost in that wilderness and the confusion that it represents. She is an intelligent person and has the vocabulary to put words to what she experiences. I am beginning to think through a series of paintings that capture this experience and I ponder this wilderness, this new and confusing world that she is entering. What would she take with her, what does she see and hear?

We talk about her cat, a special companion to my mother. When we returned from a trip, I was worried about her reorienting, settling back in. When I heard her speaking to her cat in the night I sighed in relief. Her cat is her companion and gives her comfort, another living, breathing creature. Her cat would accompany her into this wilderness. My mother writes a lot of notes to herself. Not always logical, she writes down times that five minutes later will be obsolete. It is the act of writing that helps fix her reality. Today I reported how long before her companion would arrive, 20 minutes, 15, 10. She writes this down as if to capture time, to make it stand still for her like her oven clock, stuck at ten after eight for countless years. 

I picture a path of yellow post-it notes, a yellow brick road of sorts with her cat leading the way, her shadow behind. A thick and tangled forest in front. The red flash of time through the trees. And my phone call reverberating in waves, an anchor for her as she stands before this forest. Into the Wilderness. I often know the title before anything else. I can picture this wilderness with its echoes of noise and light, her following her cat into the unknown. I add it to my to do list of paintings on the theme of memory.

Old Friends, New Friends

Me at 19

Recently my old college roommate was in town. About eight years ago it dawned on me that as a genealogist I was pretty good at tracking people down. I turned my lens to some of the people who I had lost touch with who were important to me at an earlier time in my life. That exploration led to a reunion with two of my college roommates, among them Toni, a woman who once knew the 19 year old me.

Back in those days my roommates studied occupational therapy and often got me to lie on the kitchen table. There they would manipulate my limbs as they applied their classroom learning to a "real" patient. After college Toni joined the Peace Corp and took off to Ecuador for a stretch. Now she sent me an email to tell me that she would be in town and would like to introduce me to her friend from the Peace Corp who now lived in my community.

As I wrote in a prior blog, my latest topic of inquiry is the loss of memory relative to identity. Interestingly her friend focused upon occupational therapy with Alzheimer's patients. Over dinner I asked what that entailed when one no longer had an occupation. She explained that the focus was on the things they they needed to do to exist in their life, but also on the things they could do to occupy their time and energies, much of which my mother managed to discover on her own. Of course I had to share my mother's story and her artistic collage creations.

She told me that the cognitive functions, reading and finance were often the first to go, but some people with strong cognitive abilities were able to sustain those skills for longer. I thought of my father, a college professor. As my father's memory faded, my mother asked him what would they do when he could no longer remember financial matters. "I'll never forget that,"he asserted. Eventually when property taxes went unpaid, I stepped in, but I was amazed that he still retained the ability to transfer money between his accounts and withdraw funds as necessary.

My mother too possessed strong cognitive skills. She returned to college as an adult and graduated with honors. A life-long learner, she loved to take in new information be it through books or experiential learning. Now faced with declining cognitive abilities, she still values being productive and focusing her energies on a consuming task. I remember her typing school papers at the kitchen table where she now does her daily collages. The same energy source fed both activities.

I google occupational therapy and dementia. Dementia, I really hate that word. As if we call someone crazy, demented, when memory flees. What I find speaks of participating in occupational tasks that meet one's need for productivity. My mother didn't need an OT to identify this need. She diagnosed it all by herself and in her "diminished" capacity she has discovered how to meet that need. And I speak of diminished in quotes as I suspect some of her success comes from the very ability to release herself from self judgment that many of us seek to achieve.

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