Ginny and Susan, 1961
This set of 14 photos and text appeared in the exhibition, "Two Belts," at the David Geffen School of Medicine, UCLA, January-March 2013.
My mother and I were always close. I was the baby of the family, born several years after my brother and sister, during a time when my parents’ marriage was happy. I grew up with the belief that I could tackle anything.
In 1998, when my mother was diagnosed with vascular dementia and Alzheimer’s Disease, there was no question that she would move near me. My siblings and I sold her house and car, and we found an independent living facility in a suburb of San Diego.
In 2006, I began keeping a photo journal of our lives together. Her disease had progressed to the point where she was starting to forget who I was, and I was starting to forget the woman she had been.
My mother died on May 11, 2007. Those last nine years were incredibly difficult, watching her slowly disappear bit by bit. Along the way there were moments of humor and lightness, and they kept me going. We were also very lucky to have great doctors who understood that there were two people affected by this disease, not just the patient.
In the end, I’m glad that I was by my mother’s side throughout this stage of her life. As painful as it was, the process made me a better, stronger, happier person.
San Diego CA
While I was caring for my mother, I had no time or energy left over to do anything for myself. I felt very isolated. My brother and sister live 3,000 miles away and it was hard to communicate what was happening. Photography helped me reconnect with her, while bringing the rest of the family, friends, and even strangers into our lives.
My mother was an artist and used material from her life in her work. She was an active participant in this documentation, although she never formally gave consent. Nonetheless the project raises questions of ethics and exposure, privacy and dignity.
Now that she’s gone, I’m grateful that I made the decision to capture this time. We went through it together, and I have these photos to remind me of the journey.
About the title, “Two Belts” — my mother was always fashionable. Even late into her disease, she continued accessorizing. Along with bracelets, necklaces and the ever-present purse, she developed a quirky habit of wearing more than one belt. I couldn't tell if she did this because she needed reinforcement and comfort, or she simply forgot she'd already put one on. It was emblematic of the difficulty in communicating with someone who has dementia — the patient can't describe what they are thinking and the caregiver has to guess. So my mother's support team consisted of our family, her doctors, the care facility staff, and a couple of sturdy leather belts.
TEXT FROM PRESS RELEASE
Dementia affects 1 in 8 Americans over the age of 65, and another person develops the disease every 68 seconds. By 2050, as many as 16 million people will have Alzheimer’s disease, the most common type of dementia. Once thought to be a normal part of aging, it’s now known that dementia is caused by damage to brain cells, affecting their ability to communicate. The disease is progressive, irreversible, and the sixth leading cause of death in the US.
Dementia hurts caregivers as well as patients. The Alzheimer’s Association states that more than 15 million Americans provide unpaid care to family members or persons with dementia. Given that the life expectancy of the patient averages eight years after diagnosis — but can be as high as 20 — it’s not surprising that more than 60 percent of caregivers rate their emotional stress as high or very high, and one-third report symptoms of depression.
Dementia has been called “a slow death of the mind.” For people caring for a loved one, that means an extended period of grieving as they watch their family member disappear. The little details go first: dates, conversations, small things that can be easily overlooked. Then important memories and relationships vanish. Eventually core personality traits and even basic instinctual functions can be forgotten.
While the brain dies, the caregiver still has to cope with a body — a human being who must be fed and cleaned; a person who might be lost, lonely or scared. The emotional toll is debilitating. The caregiver spends every moment trying to redirect behaviors, fend off problems, answer repetitive questions, ease agitation and provide comfort. The caregiver may be responsible for the patient’s financial and medical well-being, entrusted with making crucial decisions — or conversely, the caregiver may feel a moral obligation but have no legal power. On top of everything, the caregiver may be juggling a job and other family members.
This makes the medical professional’s job complicated. He or she will be interacting with a patient who has fluctuating degrees of ability, and a caregiver who may not have legal authority, but is on the front lines.
The David Geffen School of Medicine will present an exhibition of photographs, “Two Belts,” showing the perspective of a daughter and caregiver. Susan Myrland kept a visual diary of the last few years of her mother’s life, chronicling the ups and downs of their time together. The photos were publicly available on Flickr as a way for family members to stay involved. In a surprising turn of events, they gained a large audience outside of the family. People could relate to the story of Susan and her mother Ginny, because they saw dementia affecting their parents and grandparents.
The photographs and narrative show two women fighting to maintain a quality of life against the relentless downward pull of disease. They are funny, heartbreaking, and unflinchingly honest.