Whose Story Is It

Embrace, 39″ x 34″ x 2.75″, Mixed media on board, ©Patricia Steele Raible 2019

Sometimes I feel that I am not so much the painter as the conduit for a painting. That is the case with many of the pieces in my current series about dementia. “Embrace,” the one you are viewing here, is about my personal journey with my mother, but it is also about other people. First, it is a story created by people who traveled the same path before me, though with less science and perhaps less support. It is also a story about those that traveled with me, those that cared for and about my mother. Finally, it is also about the people who are still on this path.

My Story

To me an embrace is normally a good feeling, a comforting feeling. But the term also describes how the lead and partner function on the dance floor as they glide across the floor. I always thought dancing was magical. Yet, after taking lessons, I found out about the hard work and frustrations as well as the rewards.

My husband and I were taking ballroom dance lessons just about the time my mother was diagnosed with dementia with Lewy Bodies. My father had already died; my brother was in another state and ill as well. So her care fell to me. I usually just take charge, but that doesn’t always work with someone whose judgement is impaired. She resisted strongly; I became frustrated. Much like a dance, we went back and forth and back and forth. I came to wonder was I her lead, or her partner?

Her Story

In reading Daniel Siegel’s The Developing Mind, one quote stood out : “A story is created by both teller and listener.” The quote made me question if this could also true of the visual story in my paintings.  When I paint, is it my story alone or is the viewer involved?

With my mother I attempted to understand how she was feeling? But I also realized that my capacity for endurance, pain, and suffering was different from hers or even my husband’s. I was left with my imagination and hopefully, my empathy. But I did wonder how she felt about being told she must move into assisted living, that someone would to be there when she showered to make sure she didn’t fall, and when she toileted to keep her clean.

Their Story

So what about the viewer or the listener?  I now recognize their part and know that they can add to the story or even change it.

I look at myself and other artists as both archeologists and architects.  We are diggers of history and truth, gatherers of ideas, and manipulators of bits and pieces. Perhaps none of my of my paintings are completely my own for I am history, a bit of this and a piece of that, a part of her and some of them.

Art Stops Us In Our Tracks

“Can-Can,” Jane DeDecker, Brookgreen Gardens, South Carolina

This past weekend I had the experience of a sculpture stopping me in my tracks, moving me to tears, and sending me on my way—feeling better and almost hopeful.

The Moment of Intrigue

My husband and I were camping at a state park on the coast of South Carolina and decided to visit Brookgreen Gardens on our way home. We were leisurely walking the paths admiring the plants as much as the sculptures when a small piece drew me forward. At first all I saw was movement, then I recognized them as figures. Finally, I saw them dancing. And since I’ve been working on a painting called “Come, Dance,” I was intrigued.

The Moment of Connection

Called, “Can-Can,” the artist Jane DeDecker, shows five dancers, which represents a cancer victim with four friends helping her through the process of dying. It was possibly more moving because of my mother’s recent death or because I could see the stroke of fingers in the work and was moved by the intimacy. Whatever the reason, I stood for a long time and walked on with a sense of awe in the human spirit.

That is art. It takes you in and moves you forward.

What Being A Caregiver Taught Me About Art (The Last One For Now)

“Reflection,” 16″ x 20″ x 2.75″, mixed media on deep wood panel, ©Patricia Steele Raible 2018

Doing What Is “Right”

Even with help and support, when you are guardian for someone like my mother who has dementia with Lewy Bodies, you never feel you have done enough or even the right thing. You feel that you should always be there, always be in control. It means I travel very rarely and usually within a few hours of home. I do not want to put this burden on my daughters who have young children. Still they occasionally get the calls. Life doesn’t work on my schedule.

Just this past week there was an “episode.” I was 15 minutes from my mother’s assisted living facility and had planned to visit after my swim at the Y. With 10 laps still to go my husband hovers over the lap lane with phone in hand.  My daughter has texted, and he has called the EMTs who are ready to transport my mother to the hospital.  The aides are concerned that my mother might have had a stroke, but she is combative and doesn’t want to go to the hospital. Since only one person can be guardian, I am the one who must make the decision. They describe her symptoms, and I make the call not to transport her.

My mother decided long ago she did not want to be bed-ridden and on a feeding tube like her own mother. So I dutifully filled out a MOST form (which indicates wishes for scope of treatment). I also know from two previous experiences there is little the hospital can do. They will run four or five hours of tests and may possibly strap my mother to the bed. Making these decisions never gets any easier.

Thirty minutes after the phone call, I am at the facility, and she is napping in a chair. When I wake her, she is angry and not rational. She points at the bouquet of flowers in my hands and yells, “no…out of here.” My mother now has language difficulties and primarily indicates displeasure, not pleasure. She complains frequently about the food, the staff not responding, etc. Today she is simply not happy at all. I spend time thanking the aides and the techs who are doing their job the best they can. They are strangers, yet most of them remain patient and kind even under difficult circumstances.

I do not know what the aides, the med techs, or the facility director thinks of my choices for my mother. Some days I think I have failed. Making decisions for someone else’s life is hard.

The Opinion That Counts Is Yours.

Making decisions about art is also difficult. You not only must choose what to paint, what colors you should use, or what tools, but also you must select what shows to enter, what pieces will grab a judge’s or a collector’s attention. Others may suggest that you should enter a particular show or art fair, but right or wrong, you are the one who must decide.

Like a lot of artists I get rejections. Enough that I could wall paper a large bathroom if the rejections did not arrive by email (Yes, I can remember when they arrived by mail.). I could tell you it doesn’t hurt, but it does. It can ruin a morning. I want to be in every show I enter. Realistically, I know other people’s opinions are only that—opinions. They matter for the moment because they are judging a show or deciding whether to buy a painting. What’s left is only the disappointment. There is a whole world of judges and buyers out there.

In the end, my art must please me. It must occupy my mind, delight and heal my soul, and communicate my feelings to the world. Truthfully, I make art for myself, and if I get to share it with others it is an additional blessing.

What Being A Caregiver Has Taught Me About Art (Part III)

Remembered
“Remembered,” 10″ x 8″, mixed media collage on board

Make Mistakes—It Means You’ve Tried

There are laws in every state designed to protect the elderly, especially in situations where their judgment may be impaired. I was grateful to learn this when I began this caregiving process 9 years ago. My mother needed help, mine and also the help of many others. Unfortunately, few people, especially attorneys and court clerks, knew much about dementia with Lewy Bodies (LBD or DLB) at that time. They understood memory loss and Alzheimer’s, but not LBD, which is defined by fluctuation in cognitive functioning, impaired comprehension and lack of judgment. Even many physicians and directors of assisted living facilities lumped all dementia together.

When my mother was first diagnosed with LBD in 2010, I was urged to seek guardianship. I began that process immediately, but soon found that her appointed guardian ad litem (GAL) was focused on whether my mother knew what day it was, whether she could identify who was president, and whether she could perform most daily living tasks. The GAL was not really interested in whether my mother understood her long-term care benefits, could prepare her taxes, or make appropriate investments to secure her future.

Work Hard and Be Prepared for Change

Realizing that my mother needed some protection, I convinced her to give me Power of Attorney (POA) and Health Care Power of Attorney (HCPOA)—but only after she had injured her leg and could not physically get out of her apartment for several weeks. What I didn’t understand (and what is the law in my particular jurisdiction) was that POA status only gave me some control. Even though documents were filed with the court, my mother could change it without warning. Also, if my mother disagreed with a decision and could identify herself, she could reverse that decision no matter how sound the decision and how risky her own might be. Yet there was little option at this early stage.

Luckily with art there are always options. Each day I work on my paintings, filling my tables with “wet work and markings” before I begin any reading, research, or writing. I am at my best early in the morning, and unless I am working on a specific piece I make every effort just to let the paint flow and to work in the moment. When I make a mistake, I am prepared to use my tools and my skills to change it. It’s also what you do in life

Make Connections That Are Meaningful

For five years, my mother and I just kept plodding along together for the most part. Most of her days were good, though because of her medication and diagnosis, she was limited in her activities. She did not look different, but she now had some awareness that something was wrong. She rarely wanted to go out. The Parkinsonian symptoms began to be more pronounced such as a flat expression and shuffling feet when she walked. When these symptoms occurred, I began to panic a bit. While current research does not indicate LBD is hereditary, my maternal grandmother had Parkinson’s Disease. At the very least I have a higher chance.

Everything that is happening, every worry, every concern, makes me glad for my art.  I believe there is a physical connection that happens: Whatever is in my subconscious thought passes through my mind and my hands, healing me and bringing richness to the paintings themselves. Once the paintings are dry, I add another layer (perhaps something I learned reading) that may be symbolic or literal. After all, it is human nature to attempt to impose order. We want to see a pattern. We want to make sense of things even when they don’t, even when we fear our own threads are not connecting, but unraveling instead.

So I work my back and forth process, putting on a layer, taking off part of another, adding a bit of drawing or sgraffito. I am building a painting. I am constructing and describing a life.

 

What Being A Caregiver Has Taught Me About Art (Part II)

detailcrosstobear
Detail, “Cross to Bear,” ©Patricia Steele Raible, 2018, Mixed Media on Deep Wood Panel

 

No matter how hard you try, you may not always get it right. Two years ago my mother who has dementia with Lewy Bodies (LBD) was at a relatively steady point. I forgot about how the disease tends to “ebb and flow.” So I readily agreed when her doctor suggested changing the medication that helped prevent hallucinations. At the time I was her Power of Attorney (POA) and her Healthcare Power of Attorney. I managed her money and usually just provided input on her healthcare. The hope was that if she was unable to make decisions, I would be in place to do so.

Results May Vary

In order to change her medication, my mother had to come off the current medication for at least a week or 10 days. But once she was off the medication, my mother declared she was “cured.” She refused to take any substitutes. This resulted in increasing paranoia and inappropriate, almost aggressive behavior. As HCPOA I did not have the power to correct this, and she became increasing agitated even with the staff at the assisted living facility. She even became convinced I was stealing her money.

To calm her fears, I (along with other family and professionals) tried many things. We brought out copies of her “papers.” She was showed bank statements and financial records. Everyone assured her that all was in order. I’d like to tell you that all was well in the end, that she began taking medication that helped control the paranoia, that she started trusting me again. But there was much more to come.

It May Be A Bumpy Ride

Someone with LBD will not get better. Their decision-making and ability to understand complex problems will only decrease over time, even if their memory remains mostly intact. And without the correct medication for them, they are more likely to be paranoid and have hallucinations. It is important that that family take legal action early and find the right person to be guardian. While the process varies from state to state and county to county, it is not easy. In some jurisdictions family is rarely appointed.

Often the person with dementia strikes out at those closest, accusing them of acts they have not committed (Of course, this must be verified because unfortunately it does happen). But for the innocent caregiver, this is frustrating, embarrassing, and time-consuming. And yes, it’s like a “slap in the face.” The person with dementia may even seek legal counsel. They may call social services. They may also call the police. Each time the response must be immediate, careful, and blameless. Careful documentation and thoughtful observation are the key here, as well as much patience with the process.

Once You Gain Altitude…

Art is very similar. Every encounter, every challenge connects you more closely. You may work diligently on a piece, sometimes painting over portions, other times sanding the entire board down and starting again. But every once in a while, even as tenacious as I am, I have admit my efforts will not work—at least not in this way on this particular piece. It especially hard to start on the same painting again when you feel you have just failed. Some times I wait and give myself space to figure how I might compose the piece differently—what I liked about the piece, what needed to be changed.

In the case of my mother, I ran to my studio and shut the door. I applied quinacridone gold (my favorite) to a canvas and hired an attorney. I tore pieces of old drawings and outdated books and hired a geriatric care manager. I applied layer after layer to numerous pieces of art and went to court along with my mother, her aide, and her guardian ad litem. Luckily, after almost three months and a postponement, all agreed on the need for a guardian.

Sometime even when creating art, or maybe especially when creating art, we have to do things we aren’t comfortable doing—because deep down we know we must. It may mean many wrong pathways, but in the end, there is nothing else we could do.

 

What Being A Caregiver Has Taught Me About Art (Part I)

watertimpani1 2017MKRcafe
“Water Timpani,” 48″ x 6″ square, Four-sided painting, mixed media on wood

Making Connections

You create your best art when you are focused, motivated, and care about your work. I can photograph beautiful waterfalls, lovely sunsets, and expansive views of oceans and be truly moved by these natural wonders. But my best work is not capturing the light or the movement of the water, but rather making connections—personal connections. Connections with places, sounds, smells, and memories.

When I take photograph for a study, I always try to learn something about the area, even if it’s just about the topography. When I kayaked in earlier years I knew that straight line I saw across the river was a fall line, the hard ledge across the land that indicated where the water fell vertically into a pool below. I’ve since learned a waterfall is formed when a creek or a river flows from soft rock to hard rock. And of course, the size of the fall and the formations within the fall area continue to change over time and sometimes with each season.

Noticing the Little Things

For someone with dementia, especially dementia with Lewy Bodies like my mother it is similiar. When she was first diagnosed, trips to the doctor were much the same as they had been before—except I was there to listen and guide her. Now taking my mother to the doctor requires at least four hours. Because she is a fall risk I have her transported by the assisted living facility, and I meet them there. Once we are done with the doctor and all of the various tests, I again contact the facility and they meet us to transport her back. It wasn’t always this complicated, but in the last year while she can walk with a walker, lifting her feet more than a few inches is impossible.

While I am with her at the doctor I often work in a sketchbook or play in my head, connecting the photographs I have taken to the process of caregiving, illness, and dementia. In some ways it’s easier to see the changes in land and water than in a person you care about. The changes are so small, so subtle that you dismiss them at first as just “aging.” There are no piles of dead leaves, fallen limbs, or huge boulders that alert you to the changes. But they are there. And I believe we sense the changes, although we don’t always acknowledge them.

Finding Ways to Let Go

When I get into the studio, I have learned to focus, to let go of the problems outside the door, and to hopefully find ways of putting those feelings into the artwork. So while I am applying textures with brushes and palette knives and fingers, I am both painting a river and painting a life.

I am remembering and recording the physical and emotional changes in my mother and in the leaning tree, in the broken branch, in the free-flowing water, and in the symbolic windows and doors I place throughout my work.