My father, who died of Alzheimer’s disease in 1996 at age 77, lived the last year of his life in an Alzheimer’s unit in a Spokane-area nursing home.
The facility’s excellent staffers, including my sister, a nurse who oversaw the unit, were trying new ideas to preserve the dignity of its residents.
But some scenes still haunt me 16 years later. The woman who squawked “help me-help-me-help-me” hour after hour. The sobbing in some rooms. The aimless wandering through the corridors by residents, dressed in mismatched clothes.
I’ve heard and read how care facilities in the Inland Northwest – and throughout the country – have improved greatly in the past decade. The philosophy of meeting Alzheimer’s residents where they live in their reality – rather than forcing our reality upon them – preserves dignity and eases some of the worst symptoms of dementia.
After my dad died, I vowed to return to his care unit and visit some of the women and men I came to know there. I never did.
Recently, I toured the memory care unit at Aegis of Bellevue with Aegis Living founder and CEO Dwayne Clark, and with Marc Nowak, executive director at Aegis of Bellevue.
I was amazed at the innovations there. Clark, who grew up in Lewiston and Walla Walla, lost his mother to Alzheimer’s in 2010. He owns 28 assisted living/memory care facilities in three states.
Some of the innovations I saw at Aegis of Bellevue are industry standards found in the best memory care units throughout the country, including in Spokane and North Idaho. Others are cutting edge.
Here’s a look at some of the surprises at Aegis of Bellevue.
The classic nursing home smell – described by one of my sisters as “pee and Pine-Sol” – results from incontinence among residents and the relentless battle to clean it up.
Aegis uses aromatherapy throughout the memory care unit. The peppermint scent piped through in the morning helps wake up the residents. Lavender at night calms them down.
Bedroom and bathroom design also cuts down on accidents, while promoting independence.
When residents awaken in the night, sensors under their mattress turn on the light in the bathroom and turn on the pager of a staff member to help with bathroom issues, if needed.
Contrasting colors in the bathroom (sea-foam green walls, white toilets) make it clear where the toilet bowl is located.
In 1997, Aegis Living copyrighted a concept called “Life’s Neighborhoods” where residents are surrounded with familiar icons from their childhoods.
People with dementia often retain long-term memories of the work that organized their younger years, whether the work was inside or outside the home.
A fake but realistic looking washer and dryer – baby onesies hanging on the line – evoke laundry day for some of the women.
The unit is also home to two eerily real-looking baby dolls. They cost $700 each and are often bottle fed by both male and female residents.
Military uniforms, suit jackets and a rack of ties allow men to dress again for work, calling forth memories of their career years.
Agitation is a hallmark of dementia. Touch is a powerful calmer. Most of the pictures on the wall have no glass, and three-dimensional features, such as miniature curtains in a living room scene, so residents can touch the pictures.
In a sensory room, residents can relax in a soft sofa chair with fluffy pillows, surrounded by gentle music, a soothing wind machine and subtle scents.
Aegis has adapted the “Snoezelen” philosophy of care, explained this way on its company website: “Snoezelen (pronounced snooze-a-lin) was developed in the (1980s) by two Dutch occupational therapists working with autistic children … the unique application of sensory activities utilizes the five primary senses. Its use has been extended to seniors and adults with chronic pain, anxiety, mental illness and Alzheimer’s Disease.”
Relentless pacing is one hallmark of Alzheimer’s. Patients can walk up to 30 miles a day meandering through halls and into outdoor areas.
There’s always the worry that residents will escape their units. At Aegis, the main door to the unit has been painted to look like a bookshelf filled with books. So residents avoid that exit and wander back into the garden area of the unit, which is fenced and secure. There, they stroll down memory lane.
They pause at the “bus stop.” Or hop into a 1949 Cadillac next to an old-fashioned gas pump.
“Automobiles were such a huge part of our residents’ lives, from Detroit to outdoor movies,” Clark said.
Some Alzheimer’s patients lose the ability to recognize what constitutes real food. So in the memory care garden, all the plants are edible. If a resident picks a leaf or bloom and places it in his or her mouth, no worries.
Grown children who have lived through Alzheimer’s with aging parents glimpse a world where none of the rules we play by now matter anymore. Not work success. Not family achievements. We have watched our parents lose their identity, their memories, their habits, their hopes. We have seen their friends abandon them.
I learned a lot about what really matters watching my father’s identity erode from Alzheimer’s. But I also became judgmental of grown children who refuse to visit parents with dementia.
The usual excuses?
“I know Mom wouldn’t want me to see her this way.” Or “Dad would want me to remember him how he used to be.”
According to the Alzheimer’s Association, 45 percent of people 85 and older have the disease. So ignoring a parent with Alzheimer’s can be like missing out on a key chapter in a parent’s story.
I’m certain that Alzheimer’s units that feel more welcoming and homelike and don’t have offensive smells will make it easier for adult children to visit more often.
Clark agrees that the “remember her how she was” excuse is likely a cover for fear. But he takes a different approach.
“I never try to guilt people into being with their family,” he said. “It’s a personal journey. I tell people: ‘Your mom or dad will know you are there, even if they are in a coma. You can do whatever you want with that, but that is my belief. And that’s my experience dealing with 30,000 seniors over the course of my career.’ ”
Clark’s mother loved fine things, including jewelry and minks. But by the end of her dementia journey, “a diamond was a rock and a fur coat was an animal,” Clark said.
He brought her, instead, cashmere and silk blankets, because she loved the gentle texture. And sock shoes that kept her feet warm.
“I would bring her things that would bring her comfort,” Clark said. “At the end, that’s all you can give people.”