By Karina H. (Alumni)
Take Note: This is For Those Who Can’t Remember
Unlocking the heavy mechanical door, you immediately notice a smell, a deep, warm, biomedical flavor that completely engulfs your senses. The scent alone could be enough to turn most away, but if you dare farther down the hall the residents themselves may prove too much to handle. The memory care unit is essentially a place where people go to die, but too often forgotten is that what comes before death– is life.
* * *
In the corner of the room, a tall, thin man waits. His eyes are set deeply in his sockets underneath bushy grey eyebrows. Feathery white and smoky black hair sticks slightly up in the front, elongating his face. He nonchalantly shakes his foot, causing his whole body to bounce up and down. He gazes off into the near distance, something making him barely curl his lips. He sits alone at a small round table tucked into the corner of a large common room at the Sunset Mountains Memory Care unit. The navy blue felt jumpsuit he wears is spackled with various dried food smears and bread crumbs. Outside the window is a small locked cement courtyard where two planters hold strawberry bushes and sage. Behind the white fence enclosing the outdoor space, little birds dance in fir trees gently swaying in the wind.
I approach the table wearing plastic gloves and a matching apron. A burger with ketchup sits atop the heavy ceramic plate I’m carrying. When I greet the lanky man, his head turns up slowly, almost methodically, to look at me. Sometimes when I come to sit he smiles. Sometimes he just stares. With long stiff fingers he grips the burger, ketchup dripping onto his clothes. I grab a napkin and offer it to him, but end up patting his hands dry myself. About halfway through the burger, he stops eating and begins gently squeezing the bread and patty over and over again. I contemplate taking the food away, but am unsure if I should let him keep playing for stimulation. Hearing my mom walk up behind me, I can tell my hour at the memory care unit is almost up. His eyes look dimly at the burger, his mouth neutral. “I think he’s done eating,” I say while beginning to stand up to pry the food from his hands. My mom watches him for another moment, her mouth in a wide smile. “Maybe he just doesn’t want the bread,” she says. Her smile has the same gentle, caring, contemplating look as it did over ten years ago, when she stood in a white lab coat by her patients at the Providence Portland Medical Center. I remove the bread from his hands, leaving the thin patty. His face is unchanging as he begins taking full bites. My eyes widen as I turn to look at my mom. How could she just know?
* * *
Thanks to countless improvements in medical technology, Americans are living longer than ever (Whiteman). As a result, an ever-growing population of elderly people has created a need and market for adult care facilities (Poehlman 650S). Types of care establishments range from intimate in-home family businesses to nationwide chain organizations. The most prominent branches of adult care are assisted living, retirement, and memory care. These facilities can be found all over the United States, but the business did not start out this way. In the early 1800s, aging Americans who required extra care lived with their families, or for the unfortunate ones with mental illnesses, asylums. The last two centuries has brought sweeping changes to the adult care industry in the United States. In 2013, Susan Jones reflects on her involvement in the businesses. Her grandmother and grandfather were the first members of the family to get into adult care when they offered elders a place to live in their home. After going to college and getting a degree in business, Jones returned to Oregon and eventually ended up joining the family practice, Health Resources Inc., as an administrator for sixteen years. “I just made sure that all the patients– I mean residents, we used to call them patients– were taken care of,” she says of her job. Over the last thirty years, adult care has evolved into what we know today as assisted living (Jones). Now, over 735,000 people are in assisted living facilities (“Resident Profile”). These residents live with moderate independence, getting help from part-time staff with anything from bringing in their groceries to taking their daily pills.
During Jones’s time as an administrator, she witnessed and oversaw yet another movement in the adult care industry: the creation of the memory care unit. Unlike assisted living, the memory care unit is what you might imagine your home to look like if you converted it into a mini-hospital. The memory care unit is outfitted with full-time staff members, called caregivers, who help residents with a variety of daily tasks, such as dressing and eating. In the memory care unit, all residents suffer from dementia, a progressive disease which impairs thinking. Over 50% of residents in adult care facilities have some form of the disease, the most common type being Alzheimer’s (Alzheimer’s Association Campaign for Quality Residential Care). First described in 1906 by Alois Alzheimer, the disease is a neurological disorder which affects a person’s cognitive abilities, resulting in memory loss and behavioral changes (Van Ort 249). In the United States, someone develops Alzheimer’s disease every 68 seconds (Alzheimer’s Association). An estimated five million Americans over the age of 65 have the disease currently, and given that the elderly population will continue to increase as medical technology advances, that number is expected to double by 2050 (Alzheimer’s Association). As of now, there is no known cure for Alzheimer’s disease.
People with dementia are not only at the mercy of their disease, but also the people who care for them. Once there was a man who walked out his front door, slipped on a patch of ice, was knocked unconscious and sent to the hospital for a few weeks. His wife had Alzheimer’s disease, and he was the only one who knew the best way to care for her. When his daughter tried to fill in his role as primary caregiver, even she could not learn her mother’s daily routines.
This is the true story that inspired nurse consultant Joyce Beedle to write The Carebook: A Workbook for Caregiver Peace of Mind. The book is designed for caregivers to record their loved one’s daily routines, favorite foods, emotional triggers, special memories, and anything else pertaining to life. The need for a workbook to store all the important information relating to care illustrates the time and effort caregivers must invest in looking after his or her friend or relative. Being a caregiver is a huge commitment, making in-home care difficult for many people. Additionally, constantly looking after a loved one suffering from a fatal disease can be depressing at times. If a caregiver is not closely related to the person, however, “there’s a little more room between the heartbreak,” says Beedle. Thus, we have the memory care unit– a place where love and care is delivered twenty-four hours a day.
* * *
“YOU WOKE UP LATE. YOU MISS-ED IT. YOU MISS-ED CHURCH,” the young female caregiver yells.
“Whe-when, is church?”
“YOU MISS-ED CHURCH. YOU. WOKE. UP. TOO LATE,” retorts the caregiver before turning her back and walking away.
Left alone in the middle of the Sunset Mountains Memory Care living room is a quiet woman in her wheelchair. She is 85. She is beautiful. Her mouth is open to speak, but her exhale is ragged and no words come out. Her shoulders droop and her eyes cast dimly on to the dull gray carpet. In her hair rests a cheery faux pink daisy. I smile and kneel down, resting my hands on a waxy leather armrest. A slight moistness glistens in the corners of her eyes as she tenderly reaches for my hand.
Caring for people with impaired memory is no easy task. Their dementia prevents many residents from fully comprehending a caregiver’s directions, which can cause both parties extreme frustration. One part of the caregiver’s battle is having the ability to focus on the positive and maintaining an understanding mindset. “Underwear on the head is funny,” says Joyce Beedle, nodding her head once for emphasis. “Socks over the shoes looks funny. Trying to use a toothbrush as a fork is funny.” She smiles widely at me, her “crazy hair” framing her dimples. “If we can look at those things and take a moment to just enjoy them, that’s healthier for everybody.” She pulls out a peachy pink paper and taps the bottom of the page where a set of bold lines indicates that in one day a preschooler laughs an average of 400 times and adults a mere fifteen (Beedle). “That sucks in my mind,” she says, shaking her head and laughing freely. “I want my– what is it?– 385 back.”
All caregivers have slightly different philosophies of care. Some have goals to create safe living environments, while others believe that enjoying being with the residents is most important. However, each caregiver’s philosophy is deeply rooted in his or her beliefs about who a person with dementia really is. The perceived capabilities, humanness, and worth of the residents directly influences a caregiver’s actions while in the memory care unit.
Drastic personality shifts and visible physical deterioration can cause some people to question whether a person with dementia is really a person at all. As stated in a research article published in Lancet Neurology, “the disease process gradually erodes personhood down to nothing” (Edvardsson 362). An alternative opinion is that during disease progression “personhood is increasingly changed and hidden, but not lost” (Edvardsson 362).
When I think about people with dementia, I visualize a daisy. Imagine the sunny bright petals closing when the sun sets. You may think that the during the night, the daisy is not nearly as beautiful as it is during the day. Once a stunning show of vibrant petals, the daisy now displays its dull underside. But consider, the flower is still alive, its color only hidden from view. The beauty is still there, and if you look hard enough, maybe you can even find the sun that coaxes the petals open.
* * *
A diva, a cowgirl, and a cat sit around a large sturdy wooden table. Soft cream and ochre walls surround the open air dining room. Printed paintings of hazy fall trees hang next to construction paper leaf cutouts. Small pumpkins rest on each of three tables amongst costume make-up and big curly wigs. About ten residents are milling about, all dressed up in Halloween decor. Donna Foster comes bustling out of a back room in the kitchen in a black dress and a purple cardigan with matching sparkly witch’s hat. She motions for me to sit at a large square table near the living room. She has a slightly southern twang to her voice, even though she grew up in Northern California, giving her the tone of a loving grandmother. Fitting, since her job is to love and take care of residents at the Bayberry Commons Memory Care home in Springfield, Oregon.
Foster began working at Bayberry Commons in 2012, but she has actively participated in adult care since she was a teenager. Foster remembers waiting at the bus stop near her home and striking up conversations with residents of the assisted living facility nearby. She began volunteering at the home after school and soon found she had a natural talent for working with people with dementia. “In this business we call it having a knack,” she says. From a young age, Foster was often pulled aside to work one-on-one with residents who were acting up. “I remember I was always drawn to people with dementia and I don’t have a clue why,” she says. “I understand people with dementia. I can understand what they need, and they recognize that in me.” Foster co-owned and operated an adult care home for several years before leaving to work in memory care units. By chance, a newspaper ad for Bayberry Commons Memory Care caught her eye last year. “This is the best job I’ve ever had,” says Foster. “I like it all the time. This is my other family.”
Across the large airy room sits a small woman in her wheelchair, brow furrowed and hand in the air. “I, I need something from my room,” she says in a raspy broken voice. “What do you need? I can go get it for you,” replies Foster. “No, no, I can’t tell you that,” the resident responds. “Okay, I’ll take you to your room so you can find it then,” Foster says before carefully backing up the woman’s wheelchair and strolling away to find the mystery object.
Foster believes that residents in memory care units need to be cared for by people who treat them with respect and kindness– people who treat them as friends. She can’t recall the number of times she’s seen caregivers, friends, and family say, “‘Remember? Remember that?’ No, they don’t,” she says. “They feel bad that they can’t remember.” She tells her caregivers to never force the residents to do anything against their will, unless they are in danger of harming themselves or someone else. “Think about how awful it would be to have the world changing around you all the time. From one moment to the next you wouldn’t know what was going on,” she says. “Our whole philosophy here if I boiled it down would be to have an atmosphere where they feel secure and they feel safe.”
Consistency is key in helping residents to relax. According to Joyce Beedle, “The reliability of a routine is comforting to a confused person . . . This can reduce anxiety about what happens next” (Beedle 56). Unfortunately, a major source of inconsistency in daily routine is the caregivers themselves. For the last year, I have been volunteering at Sunset Mountains Memory Care on the weekends. I have outlasted almost all the caregivers during this time period. In 2009, the turnover rate of caregivers at assisted living facilities was sixty-two percent (Mukamel 6). But there are also caregivers, like Foster and Beedle, who have worked in the memory care unit for over two decades. “I’ve been going somewhere once a month for probably twenty years. Right? It’s wow. The nurse who’s in charge of the memory care unit has been the same the whole time,” Beedle says, raising her eyebrows and grinning. Through my observations at Sunset Mountains, I have noticed that veteran caregivers tend to be more respectful and caring towards the residents. Some more experienced caregivers once told me that they hope that the “new ones” are not being taught “shortcuts” by the other, younger caregivers. Beedle believes that a memory care unit’s administrator is key in creating a healthy living environment. If an administrator views the unit as strictly business, then everyone suffers since the caregivers are forced to make their number one priority not the residents, but the residence. “They don’t want to feel like they’re making the people unhappy,” says Beedle. “They just have to have the freedom to be nice, and be helpful. It’s really not that complicated.” Donna Foster’s administrator was once a caregiver, so she appreciates the work of her staff. “My boss understands why I do the things I do,” says Foster. Having a caring administrator is vital to having passionate caregivers, which leads to loved and respected residents.
While Foster is busy tending to another resident at Bayberry Commons, I sit next to a woman dressed as a jack-o-lantern. She speaks solely through her eyes, accompanied by a few head motions. Her satin pink nail polish is chipped, so I am trying to remove it. While rubbing a cotton ball over her nails, I look up at her face and ask without expecting an answer, “Do you like it here?” She looks back at me, nodding.
* * *
Being a caregiver in the memory care unit is a risk. You put all your time and energy and love into your residents. You know that they are going to die, but you can’t think of them that way. You have to be compassionate. You have to be their friend. To them, life is no longer about remembering those little nothings of yesterday. Life is now.
* * *
I walk down a short hallway, my eyes fixed on the fluffy white hair sticking up over the top of the hospital bed. I tilt my head and smile at the tall thin man, but my brow furrows when I see his hand awkwardly gripping his shoulder and his mouth hanging agape. His head is sharply bent, and his eyes are open but unblinking. “Would you like me to adjust your pillow?” I ask, getting no response. Is he gone? His legs shift slightly. A couple of caregivers barge into the room. They don’t say hello. They don’t acknowledge him as a person. The caregivers talk loudly amongst themselves while hefting him out of bed to be weighed. Eventually they leave and I notice a gelatinous substance oozing from his mouth onto his face and shirt. In the corner of the room on a crumb-and-towel filled table, I find a pair of plastic gloves and napkin. Gingerly I wipe his face and clothes of the brown sludge. His shirt is bright purple and reads “End Alzheimer’s” on the front. I pull up a chair and sit next to his bed, which is completely flat, soon realizing that his breathing is very ragged. I look out the door and see the caregivers chatting away in the dining room. I pick up my cellphone and call my mom to ask if I should raise the backrest on his bed. “Yes, of course,” she says. “You can’t leave someone who is having trouble breathing lying flat.” When I hang up, the medical-aid caregiver saunters into the room and shoves some yogurt mixed with medicine into his mouth, scraping the excess off his lips with the spoon’s edge. He can’t swallow, so his mouth just hangs open and you can see the purple blob sitting on his tongue. This prompts the caregiver to walk out of the room and call a hospital to “see if we can be doing anything more” to help him since he is “actively dying.”
Behind a lamp in his room, a poster reads “Arizona’s Sensation: Sedona,” in large white letters underneath a photo of a wide river flowing from a huge burnt orange rock formation. On top of a dark wooden dresser is a pencil drawing of a young man in large glasses holding a baby dressed like a tiger. Next to that photo hangs a line drawing of a small home, the kind you get from your realtor. Another wall displays an image of a man in a bright red ski jacket at the summit of Mt. Hood. I gently hold his hand while we sit in silence. I point to the sage bush in the planter out the window and imagine his little grin and shaking foot. I replay in my mind the time I was with Foster and the resident who nodded when I asked if she enjoyed living in the memory care unit. Tears start rolling down my cheeks and I wonder if anyone will be by his side when he goes. This could have been so much different. When my hour is up I look at his face and smooth his hair. I whisper goodbye.
Alzheimer’s Association. “2013 Alzheimer’s Disease Facts and Figures.”Alzheimer’s & Dementia, 9.2 (2013): n. pag. Print.
Alzheimer’s Association Campaign for Quality Residential Care. “Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes.” Alzheimer’s Association, 2009. Web. 9 Dec. 2013.
Beedle, Joyce. “It’s Official: Laughter is the Best Medicine.” Handout. Portland, OR. n.d. Print.
Beedle, Joyce. Personal interview. 22 Nov. 2013.
Beedle, Joyce. The Carebook: A Workbook for Caregiver Peace of Mind. Rev. 1st ed. N.p.: Lady Bug, 1992. Print.
Edvardsson, David, Bengt Winblad, and PO Sandman. “Person-centred care of people with severe Alzheimer’s disease: current status and ways forward.” Lancet Neurology 7 (2008): 362-67. Print. Foster, Donna. Personal interview. 31 Oct. 2013.
Jones, Susan. Personal interview. 14 Oct. 2013.
Kelley, Erin. “Quick Facts about Alzheimer’s Disease.” Memory Care Home Solutions. Memory Care Home Solutions, n.d. Web. 9 Dec. 2013.
Mukamel, Dana, et. al. “The costs of turnover in nursing homes” Medical Care. 47.10 (2009): 1039-1045.
Poelman, Eric, and Roman V Dvorak. “Energy expenditure, energy intake, and weight loss in Alzheimer disease.” American Journal of Clinical Nutrition 71 (2000): 650S-655S.
“Resident Profile.” National Center for Assisted Living. National Center for Assisted Living, 2013. Web. 18 Nov. 2013. <http://www.ahcancal.org>.
Van Ort, Suzanne, and Linda Phillips. “Feeding Nursing Homes Residents with Alzheimer’s Disease.” Geriatric Nursing. 13.5 (1992): 249-253.
Whiteman, Honor. “Americans ‘healthier and living longer.’” Medical News Today. MediLexicon international Limited, 17 Sept. 2013. Web. 9 Dec. 2013.