Time to Take Charge

Anyone with progressive memory loss will need to eventually make a choice about housing. The first thing to think about is quality of life.

Myriam Marquez has always lived an interesting life. An attorney, she worked for the Maryland General Assembly, as a law professor at Georgetown University, and in private practice in Annapolis before moving to the Pacific Northwest to work for AARP. She has traveled the world, spent a month in India studying with a guru, and raised four daughters. In her 50s, she became a public defender in Washington’s Skagit County. And that’s where her story took a turn.

“I came to a four-way stop near my house, and suddenly I didn’t know where I was,” she recalls. Although she was fine within seconds, that was the moment Myriam knew she had Alzheimer’s. She was 62 years old.

Myriam has a rare genetic form of the disease, passed through her father’s family; DNA testing confirmed that she carries the gene. Not knowing how many good years she’d have left, Myriam chose to leave her career and focus on advocacy, working with the Alzheimer’s Association and the State of Washington.

Now 71, Myriam’s life continues to be interesting. She lives in a SHAG (Senior Housing Assistance Group) apartment complex in Seattle, with her spaniel Joe Cocker. It’s a good fit financially and she has a lot of activities available. She goes out with friends to dinner, movies, and plays. She takes advantage of community activities for people with memory loss. And she relies on technology to help cover gaps in her memory. “I went out and bought GPS right after the four-way stop,” she says. “I use all the tools—cell phone, laptop, GPS. I don’t take any chances.”

Anyone with progressive memory loss will need to eventually make a choice about housing—or their family members will. The first thing to think about is quality of life, which is more than simply meeting physical needs. Emotional fulfillment through social contact and stimulating experiences is essential to well-being, explains Genevieve Wanucha of UW Medicine’s Memory and Brain Wellness Center.

People in early stages of memory loss may choose to continue living independently. Community senior centers and the Alzheimer’s Association are good sources of ideas to stay engaged and involved, as are these Seattle examples:

  • The Frye Art Museum’s Creative Aging Programs offer a monthly Alzheimer’s Café, with music and food; creative arts projects for people in their homes; discussion tours of the galleries; and art-making classes.
  • Seattle Parks and Recreation teams with UW Medicine’s Memory and Brain Wellness Center to create monthly tours of various public gardens.
  • Momentia is a grassroots movement empowering people with memory loss to stay active. Its website is a source for all kinds of activities.

Adult day programs offer physical, social, and cognitive activities. Rosewood Courte, a secure memory care community, also offers a day program at its Edmonds location. Its Senior Day Stay takes this type of service to a new level of convenience.

“We’re available 365 days a year, 6 a.m. to 11 p.m.” says administrator Patrick Shepard. “People can come for 30 minutes or the whole day; you don’t have to maintain a schedule or use a minimum amount of time.”

There’s an initial admission process, including medical information and personal history. After that, participants in Day Stay can attend whenever they want. There are activities every day, all day, including field trips. There are meals and snacks; there are showers; there are places to take naps. Some participants come several days a week.

As memory loss becomes significant, it’s time to consider moving into a place with more services, especially if there are safety concerns. Memory care is typically a secure residence.

“You’ll definitely want to do a tour,” says Karen Clay, a social worker with the UW Memory and Brain Wellness Center. “Look around. Do people who live there seem happy? Is staff happy? Do classes sound interesting? Do you like the food, and are there choices?” For family members, Clay also recommends talking about a potential resident’s personality traits and asking what approach would be taken to manage those. For example: “My father is shy, but likes to be around people. How can you help him be more engaged?”

Check out common spaces and bedrooms, staffing levels, and amenities. At Quail Park Memory Care in West Seattle, executive vice president David Haack gave me a tour just before the center opened to residents. There were bright red plates in the dining room and tiny indoor gardens with interesting plants. Residential hallways had themes to help people orient themselves: a park bench and chirping bird sounds in one, a marketplace in another. Interesting hats hung on a wall to stimulate conversation.

The center is using IN2L (“It’s never too late”) technology. With it, residents’ life stories, interests, and other information can be gathered so staff get to know and understand residents and engage with them through interactive programs. Pets are encouraged, Haack says, and staffing is based on the individual needs of the people who live here. Activities sounded interesting and varied. It all felt appealing and comfortable.

When you tour a place, advises Haack, trust your instinct. Are residents being treated with dignity and respect? A key point is how a potential resident is recognized when accompanied by a family member. Staff should communicate in the same manner with both people; always take note how they address a potential resident.

Myriam is starting to consider her next move. She plans to ask one of her daughters to help manage her finances, and she’s researching senior communities that offer both assisted living and memory care. She advises people to look for the right place before they’re ready to move, to be sure there’s an opening when they need it.

Many senior living communities provide multiple levels of care, including secure memory care. In the Seattle suburb of Shoreline, the Courtyard at Cristwood includes three sections called neighborhoods: general assisted living, light memory care, and secure care. Residents in all levels interact daily, sharing common spaces, activities, and events.

“We make a conscious effort not to segregate populations,” says administrator Debra Hawkins. “They do activities together, and friendships are formed.” Those friendships help smooth the stress of moving between levels of care.

Residents in the lighter memory care neighborhood come and go as they please, while secure care has its own outdoor space so residents can use it without wandering away. In both areas, the focus is on individual needs.

“We believe people still have their purpose when they come here,” says Hawkins. “Our person-focused programs honor a person’s past and what they want to continue to do.”

Expense is an important factor when choosing your next home. Rates vary depending on things like location, amenities, and staffing. It’s best to determine what you can afford before you start your search, then ask about costs upfront when you call to arrange a tour.

There are many options, many questions to ask, and the search might feel overwhelming at first. But here’s the thing: Our generation is getting older with technology. We have the Internet to help us search. And we have people like Myriam leading the way. “I am planning for the future,” she says. “I’ve been in charge of my disease since I came to that four-way stop.”

And that’s the way to do it.

Priscilla Charlie Hinckley has been a writer and producer in Seattle television and video for 35 years, with a primary interest in stories covering health and medicine, women’s and children’s issues, social justice, and education. She enjoys taking a light-hearted approach to serious topics.

Discussion1 Comment

  1. This is a great story. My mother’s symptoms began 38 years ago and she passed away 28 years ago. At that time, there were not a lot of choices for Alzheimer’s patients. I hadn’t really thought about how today’s technology makes a big difference for research and as tools for patients. Very good news!

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