Broken Hallelujah

Mark Liebenow

Parents never die as we hope or imagine. I thought mom would pass quietly in her sleep at home because she had spent her life taking care of other people, and this would be her reward. 

She was a progressive thinker in a small, conservative town in Wisconsin, but if people were suffering, she didn’t care who they were. She wanted to ease their burden. She was also feisty. When she retired from nursing, mom returned to painting, her first love, and enrolled at the University of Wisconsin to study for a Bachelor of Fine Arts degree. Some of her friends counseled against it because of the academic work. That only made her more determined.

Several years ago, mom stopped painting completely. She also had trouble recalling recent events. “Criminy, why can’t I remember that?” We suspected she was beginning to develop dementia. 

1.

Alzheimer’s is a disease that attacks the brain and is the cause of 60-80 % of the cases of dementia. It generally starts slowly and gets worse over time. The most common early symptom is short-term memory loss. As the disease advances, people withdraw and body functions are lost. There is no treatment or cure. The average life expectancy following diagnosis is four to eight years.

At the family gathering for Thanksgiving and her eighty-eighth birthday, mom was smiling and joking. While she couldn’t remember what she had just done, her long-term memory was still good and we could talk about when we were growing up, like how her whistle was so loud that we could hear it two blocks away telling us to come home for dinner. She reminded me of when I climbed an enormous tree but was scared to come down because the distance between branches was too great. She said, “You climbed up. You should have figured out a way down.” It was good training for when I began hiking mountains in Yosemite. 

In December I came up to take care of dad after cataract surgery. He needed to sit still for a week and let his eye heal. I was there to give him eye drops throughout the day, cook meals, clean the house, and check mom’s blood sugar levels.

Mom smiled when I walked through the door and said, “Well, look who’s here!” and offered a back rub with fingers that, although weaker, still knew how. She recognized me as one of her sons, but I’m not sure she remembered which one or that I lived in a different state. Then she went over to a chair, sat down, and her face went blank. 

I sat beside her and tried to engage her in conversation about past events, but she no longer wanted to talk about them. Frustrated, I began talking nonsense, and her eyes lit up. Fantasy was more interesting to her than reality. I made up stories to entertain her, like how the wrens at the feeder were all cousins, how the one on the left didn’t get along with the rest, and how the number of stripes on their wings indicated who was older. 

She had become alarmingly thin. At dinner, Dad tried to get her to eat something, knowing that she needed to because of her diabetes. He started out encouragingly and built up to yelling. With that, mom dug in her heels because no one was going to tell her what to do. At breakfast I tried a different tack and played a game with her food, trying to convince her to eat more of her omelet before the red peppers and purple onions ate them all. She liked this game. However, she had forgotten to put in her partial denture. Reminded, she swung it around like an airplane before successfully landing it in her mouth. The next morning, I used the same ruse because she didn’t remember. 

On most afternoons, mom sat in a chair and stared out the back window as if waiting for something to arrive. Rather than identify the cardinals, goldfinches, and black-capped chickadees at the feeder like she used to do, when I asked what she was looking at, she said, “Nothing.” In the evenings she wouldn’t read her books or do the daily Cryptoquotes. She watched TV until she decided it was time for bed and headed off looking determined to get somewhere, even if it was only 7 p.m. 

2.

Dementia has been known about for a long time. Physicians and philosophers in ancient Egypt, Greece and Rome noticed that people of advanced age sometimes had problems recalling events. In 1776, Scottish physician William Cullen referred to dementia as a medical ailment and said it was a “decay of perception and memory.” In the 1970s, Dr. Robert Katzman, a neurologist, went further and said that Alzheimer’s was not a normal part of aging because many older people do not lose their memory. In 1993, the first gene associated with a risk for Alzheimer’s was identified — APOE4. 

To get out of the house when she was growing up, mom both played high school basketball and was a cheerleader. We didn’t find out about the cheerleading part until a few years ago. She also learned to paint from her mother. Being practical and knowing that she didn’t want to be a commercial artist, she set her painting aside and went to nursing school near Philadelphia where, on the sly, she also learned to smoke. After graduation, she traveled around the country with another nurse, worked in different hospitals, met dad, and began raising a family. 

For the last thirty years her paintings have been her focus, yet most were abstracts and she wouldn’t tell us what they were about. One series of paintings, “Life’s Boundaries,” gave us an insight. She felt that in order for us to fulfill our purpose in life, we had to overcome the boundaries in our way. Some were physical like dealing with cancer or diabetes. Some were social like living in an environment of sexism, racism, and oppression. Some were personal like struggling with anger, pride, or lust. 

One three by four foot painting has a row of turquoise blue petals unfolding against a poppy-red background. It has Georgia O’Keeffe’s sensuality, but I’m hesitant to say what I think I’m staring at. In an acrylic painting of a spring shower, she swirled red, blue, and yellow together for the dancing of the young, rambunctious clouds, and glued flecks of mica to the canvas that sparkle in sunlight as falling rain.

Mom’s confusion is growing worse. Dad says mom keeps asking when they are going home, and he has to remind her that they are home. She also keeps taking photographs off the walls and putting them in the trunk of the car because she thinks they’re moving, and then looks hurt when dad puts them back. At night, mom doesn’t always make it to the bathroom in time. Dad helps her clean up and changes the sheets.

Sometimes when dad is busy writing another article on the history of our small town for the newspaper, mom goes out to refill the bird feeders, but she isn’t steady on her feet, and knows she’s not supposed to do this. Yet the chore needs to be done, she is bored, so off she goes, wanting to be helpful. Earlier this winter she slipped and lay in the snow without a coat for half an hour before he noticed she was gone and tracked her down.

Mom was 5’ 9”, had white hair, and looked elegant dressed up in her black dress, silk turquoise scarf with gold threads, and crimson red earrings. But she hadn’t dressed up in some time and was no longer interested in her nightly gin and tonics. The only thing she wants is to get in the car and go somewhere. After dad retired and before her dementia blossomed, they sometimes drove around the country just to drive. A couple of times they traveled 2,000 miles to California to visit when I lived there, stayed a few days, and went back home. They drove out after my wife died and helped me move.

As mom has more problems getting through each day, dad takes on more of her care. He is ninety-three and has his own health problems. Aware of dad’s exhaustion from having to do everything at home, Kurt, Linda and I, the three children, have been encouraging him to move mom into assisted living where others could take care of her and he could get his rest.

3.

Approximately 44 million people worldwide have Alzheimer’s disease, and nearly half a million will die from it each year. It most often begins in people over sixty-five years of age and will affect about 6% of them. Because people are living longer, one person in six over the age of eighty will develop some form of dementia. 

In early March, Linda calls to say that mom was incoherent this morning and dad couldn’t get her out of bed. They took her to a hospital in Madison where the doctors discover she has a fulminating staph infection and put her on antibiotics. 

Not knowing if she will survive, I drive four hours to Wisconsin from my home in Illinois, and shuttle dad back and forth to the hospital. With treatment, mom regains the spark in her eyes and begins responding to family conversations with “Whoop dee do!” instead of real answers. I’m not sure this is a good thing, but at least she’s interacting with us. Because the infection isn’t completely gone after a week, mom is transferred to a nursing rehab facility in Jefferson. 

When she finishes treatment there, dad finally agrees to move her into assisted living at Marquardt Village in Watertown, with the intent of her going into the memory care unit when a room becomes available. I begin driving up every two weeks.

In April, I take dad to visit mom in the morning. She’s unsettled and wants to go somewhere. Anywhere. When we won’t take her, she yells, “What good are you! Now I understand why people commit suicide.” Dad doesn’t react, but I’m shocked. Has she said this before? Being part of the neighborhood community brought mom joy, and she loved gathering with friends over coffee. Now cut off from them, and sensing that she is never going home, she sees no point in hanging around. She’s ready to go and is irritated that God is taking so long. The nurse says mom is mellow in the afternoon and works on jigsaw puzzles in the sun.

They celebrate their sixty-sixth wedding anniversary there. In a photo, they are sitting next to each other, but mom looks like she’s wondering who this old man is that’s holding her hand. When I congratulate dad about the milestone, he says that it isn’t anything significant because he felt the marriage ended a couple of years ago when mom’s personality disappeared.

***

In 1987, Mom graduated from UW-Madison with honors, exhibited her work in a number of galleries, and was invited to juried shows. Her large painting of the bones of the human shoulder, painted in cyan blue and white against a burnt umber background, hangs in the UW Medical School. 

When she painted, she wore a light blue shirt and blue jeans and worked in the basement where a row of shoulder-high windows provided light during the day. At night, with a lone spotlight on her canvas, she’d sit in the darkness until an image came, then lean into the light and give the image form. 

Cultures around the world inspired her. In several of her works she used a Japanese technique to create distance. During her year in Japan, she probably encountered the Japanese art of kintsugi, where the cracks in broken pottery are repaired with gold or silver to honor the pottery’s life history. Either we mended our cracks and became stronger, or we stay broken. It was in the cracks, the liminal space between what had been and what might be, that mom saw the fire of creativity burning. The French Impressionism of Monet influenced one set of paintings, and around her home are books like Women, Art, and Power by Linda Nochlin and Mexican Muralists by Rochfort Desmond.

The natural world left her in awe. From photographs I took in Yosemite, she sketched a dozen ink drawings. Her mystical watercolor of the Mist Trail along the Merced River, painted in magenta, azure blue, phthalo green and several shades of gray, hangs on my wall.

Growing up Christian, mom felt that faith required her to deal with the injustice going on in society. Her focus was reinforced when she took a course from Rabbi Swarsensky at Edgewood College. He had been in the Sachsenhausen Concentration Camp during World War II and spoke of the need to think about how our everyday actions affected others. She visited fellowship groups in prison and worked with several inner-city youth from Milwaukee. 

In 1990, mom volunteered to help at a medical clinic in the jungle of Honduras, setting aside our fears of her running into paramilitary groups, drug cartels, and poisonous snakes like the green palm pit viper. While she would later create a series of colorful paintings of the river, the village and its people, when she was there she painted blue fish, red turtles, yellow ducks, and green palm trees on the walls of the children’s ward, knowing that art can heal invisible wounds that medicine can’t touch.

Does mom know she has Alzheimer’s? Does she think about anything specific, or is she unable to hold any thought long enough to mull it over? Perhaps mom feels she’s standing in a meadow somewhere surrounded by fog, hearing familiar voices in the distance, but unable to find them. To make her room more familiar, we put several of her drawings on the wall. She knows she created them, but she doesn’t seem to take any pride in them.

Where does the core of a person reside? Is it in the heart as the ancient Egyptians believed? They preserved the heart, but the brain they diced up and pulled out through the nose. Aristotle, in the fourth century B.C., also thought it was the heart. Seven hundred years later, Augustine disagreed and said that rational thought happened in the brain.

Descartes postulated that we were real because we could think. Mom would say, like the Velveteen Rabbit, that we become real when we love others. 

We don’t know what drove mom to paint. Piet Mondrian spoke of the artist’s communion with something greater than the individual self. Rumi said the artist sees through the veil of illusions to how things really are.

While it’s hard to pinpoint when mom’s dementia began, we know when she stopped painting–2003. Some switch turned off, and even though we kept encouraging her to start a new painting, or at least a preliminary sketch, she wasn’t interested. For the last thirteen years, a dusty folder of ideas for new paintings has sat on her desk. My guess is that the early symptoms of Alzheimer’s made it too frustrating for her to paint, specifically those involving images, spatial relationships, colors, and the contrasts between light and dark. 

Shortly after we realized that her long-term memory was also disappearing, it was gone. Time was running out. She was disappearing over a horizon we could neither see nor keep her from.

4.

Besides genetics, dementia can be caused by brain damage from an injury, particularly contact sports like football. Vascular dementia makes up around 10% of dementia cases, and is caused by disease or injury to blood vessels that damage the brain. Strokes are included here.

In May, mom’s white blood count is high. Tests are inconclusive, antibiotics are ineffective, and the doctors have nothing left to try. She is put on hospice care to keep her comfortable until she dies. After months of suspending our dread, the sentence is spoken. 

As I drive to Wisconsin, I play my favorite road trip CDs. They were made by San Francisco radio station KKSF to raise money for social services when the AIDS epidemic was out of control. My wife Evelyn gave me one each year before she died in her 40s of an unknown heart problem. One of the songs is Jim Chappell’s “Gone.” When it comes on, I cry because mom’s beauty, grace, and feistiness are going to end.

When I arrive, mom is perky and sitting in her chair, interacting with us better than she has in a long time. As Kurt, Linda and I gather around for a photo, I see the fierce determination in her face, as well as her pride in her children. All mom wanted for us was to follow our dreams and she would be supportive. I could be a writer, gardener, or retail worker and she would be happy. She was a fan of the mythologist Joseph Campbell and his counsel to “follow your bliss.”

Later in May, Kurt and Linda say that mom is fading, isn’t talking much, but does comes back for brief moments. I drive up again. When I enter her room, the drapes are closed, and mom is tucked under the covers. In the diffused gray light, her face looks like a chiaroscuro pencil drawing shaded with shadows of light and darkness. Mom doesn’t wake to my voice or the gentle nudge on her shoulder, which makes me fear that she has crossed over. Then I notice her shallow breathing.

Sitting beside her on her shifting boundary, I wonder if mom is seeing her sister Mary, who died when mom was a teenager, or her parents holding a lantern for her. Larissa MacFarquhar, in an essay in The New Yorker called “The Threshold,” said this period is a time of quieting, of preparing to die.

Softly, trying to grasp what she is seeing in the shadows, I speak to her as she sleeps. Mom, do you feel the darkness approaching? How far have you drifted from us? Do your fingers long to hold a paintbrush again? Do you remember how you loved to watch the green light in the backyard disappear into the woods every afternoon? Do you remember the birds at the feeder? 

I wonder if any of her paintings are about death or her fear of dying. She probably did because she looked at other hard realities that unsettle most of us, and she had seen death up close when she worked as a nurse. 

For half an hour I wait, watching her face at peace, hoping to see the glimmer of a smile return. I speak again. She does not open her eyes, but this time she answers my questions with two murmurs for “yes,” and one for “no.” She may not know I’m her son, only that I’m familiar. I thank her for going back to school to explore painting because that’s what she wanted to do, for not being afraid of doing silly things like letting granddaughter Katie gel her hair into Billy Idol’s spikes that she wore for the rest of the day, and for teaching me to follow my heart. Finally, I ask if she wants to go back to sleep, and she murmurs “yes.” 

Touching my fingers to my heart, I rest my hand on mom’s head. Holding back the sorrow rising in my chest, I say, May you feel courage for your coming journey, and peacefulness for the parting from all you have known. May you see an invitation for the new life that awaits, and follow the winding river path home. May the shadow of death upon your face give way to light. Sleep, dear mother, in the calm of all calm. 

Kissing her on the cheek, I say goodbye, knowing that this might be the last time I see her alive, because tomorrow I leave for a conference in Montana.

5.

Doctors have identified the hippocampus as one of the first regions of the brain to suffer damage in dementia. The hippocampus plays a key role in the storage of short-term memories and the formation of new ones. Long-term memories are stored in the cerebral cortex. Researchers are hoping that detection of shrinkage in the hippocampus will help in making an early diagnosis and lead to an effective treatment.

When I have Internet access in the mountains, I follow updates from the family. In one photo, mom is hanging on to granddaughter Mandy’s arm with both hands as if she desperately doesn’t want to let go. On another day, Linda says mom raised her left arm and hugged her, then looked into her eyes for a long time without speaking. 

Two weeks later, the day before I’m scheduled to return, Linda calls and says that sometime before dawn on June 13th, mom died in her sleep. Looking into the vastness of Montana’s night sky, I watch the stars burn with the lights of my dead. Mom has gone on to where she wanted to be. She believed all things were possible, if not in this lifetime, then in the next.

As the family talks about funeral details, I mention a conversation I had with mom twenty years ago. The pastor in her church had everyone write down what they wanted for their funeral. Mom wanted celebration, not mourning, with New Orleans jazz and dozens of bright red, yellow, and blue wooden parrots. I may have brought up the parrots, but she thought that would be fun. 

Looking for her instructions, Kurt finds envelopes with her last words to us. We don’t know when she wrote them, nor do I know what she said, because I haven’t opened my envelope. She stays alive until I read it. 

Before mom’s funeral, dad sits in the front pew, and finally lets himself cry as friends tell him how sorry they are. While we are dressed in bright colors, per mom’s instructions, the funeral service is a standard one. There are no parrots, jazz trombones, or parasols. Mom would be upset. “You could have done something fun!” 

At the cemetery, as the other family members reverently add symbolic handfuls of dirt, I pick a bunch of yellow wildflowers growing nearby and place them on the top of mom’s crimson red box of ashes to honor her unconventional spirit. 

Few of us die peacefully, it seems. Yet to die after the sparkle has gone from your eyes, no longer knowing who you are, unable to paint, and unable to remember who we are, isn’t much better. That mom died in her sleep is a grace, but I do not count her as one of the lucky ones.

Back home, as I’m paging through the book of her art work that dad put together, depressed that I will never know what mom was trying to express through them, one painting stops me: “Reaching Up.” The painting is simple, yet there is something going on. Why hadn’t I noticed it before? In it, a weary-looking, yellow-green stalk of grass stands in front of a mottled gray background with smears of cobalt blue. The head of the grass is in seed, and it’s unusually taut and dark for mom. 

I check the date. It was created in the last year she painted, and it might be her final one. I call Linda to see what she knows. She says that mom saw the grass through the basement window, but doesn’t know anything more than that. 

At night, the grass would have been lit by the spotlight reflecting off a blank canvas, with the blackness of night behind it. Then I notice the grass is luminous. I may be reading too much in, but the painting could be mom’s expression of how broken she felt by dementia, and this was her final gift of light before the darkness closed in. 

Image © Europeana