Inside the Dementia Epidemic: A Daughter's Memoir (30 page)

When I pull up at Elm Haven, I have to call on my cell phone for a staff member to run outside and help me persuade Mom to climb out of the car. Inside, Mom offers a huge smile and multiple hugs to the RAs in the living room. She seems to see them as long-lost friends who mean the world to her. I’m happy for her.

B
y February of 2010 Mom has declined so much that she spends most of her time dozing in the small TV room at the end of her hallway, eats little, and ignores the group activities. I no longer see the sense in paying nearly $6,000 a month for a private facility when she qualified for Medicaid months ago. I ramp up my research of local nursing homes, and file a Medicaid application with the county Department of Social Services.

M
y neighbor, Karen, who led our community discussion of dementia, tells me about the book,
Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home
by William H. Thomas, M.D. Though I’m skeptical of the title’s promise, I find myself intrigued with Thomas’s approach to elder care. In 1991, Thomas, a Harvard-educated physician and geriatrician, and his wife, Jude, founded an international, not-for-profit organization called The Eden Alternative®. Its fundamental tenet is that nursing homes must be redesigned, from the physical environment to
programs to staffing, to combat what they call the “three plagues” of institutional care: loneliness, helplessness, and boredom.

Thomas envisioned nursing homes that practice The Eden Alternative as more like a garden than a facility—a “human habitat” filled with life—plants, animals, frequent visits by children, and impromptu interactions with the staff. The Eden Alternative also models a new “culture of care.” It’s part of the staff ’s job to not only dress and feed the residents but to sit down and talk with them, to give them a hug if they want one. Elders are encouraged to give as well as to receive this kind of affection. They’re offered a range of meaningful activities each day. Caring, and the warmth of human contact, are more important than treatment and schedules.

Unfortunately we lack nursing homes in our area that fully embrace all aspects of The Eden Alternative philosophy. Karen knows many Eden Alternative leaders through her work, and recommends an excellent nursing home on The Eden Alternative Registry two hours away, the closest. I call the home and arrange a tour, but in the end decide that I’d rather find a good place within a half hour’s drive that allows me to visit my mother more often and be readily available if she has to go to the hospital.

A
round this time I also learn from my neighbor Karen about a recent initiative of The Eden Alternative, “Eden at Home.” Eden at Home brings the philosophies of The Eden Alternative to care at home, helping to improve the quality of life for elders living at home and those who care for them. As I learn about Eden at Home, I wonder how those months my mother lived with us could have been different for our whole family if Eden at Home had existed at that time.

I learn that care at home can easily fall into a replication of the kind of care found in an institution: care that is task- and schedule-oriented instead of person-directed, with interactions that
exhaust, frustrate, and deplete everyone involved. Eden at Home emphasizes not aging in place, but aging in community. According to Dr. Thomas, its founder, Eden at Home “teach[es] people how to go beyond care giving. There’s this idea, which is very common in our culture, that care giving is a ‘pair’ relationship: a caregiver and the person getting cared for. It’s a one-on-one relationship and other people help, if they can. And that’s actually not the way care has been given in most of human history, when care needs were distributed across a clan or tribe or family network.

“So we try to help people build ‘care partner networks,’ so that the elder is a part of that care partner network, along with maybe a daughter, and maybe a friend from church.”

Would I have felt less overwhelmed when Mom lived with us if I had been familiar with Eden at Home? If there had been a social worker or counselor in our area back then who had been trained as an Eden Associate to work with caregivers (as there are now), I suspect that I would have felt less pressure to be the center of my mother’s new life. I might also have learned much earlier to see my mother not simply as another responsibility weighing me down, but as a whole, feeling, complicated individual with her own needs—as Judy.

K
aren also tells me about another alternative to traditional nursing homes called The Green House Project. Bill Thomas, co-founder of The Eden Alternative, started The Green House Project in 2003 to encourage the growth of nursing homes built not as large, hospital-like institutions, but as clusters of small houses, each with six to ten residents and a completely revamped culture of care.

Their website explains that the “green” in The Green House model means “growth.” “The intentionally designed environment, from the open kitchen to the yard, promotes opportunities for elders to live to their fullest potential. Green House homes are
designed to let in the natural world, through plenty of sunlight, plants and garden areas, and outdoor access.” To change the culture of elder care, “the Green House model focuses on deinstitutionalizing elders, moving to a small house setting, changing the organizational structure, and providing sustainable skilled nursing care in a truly home like environment and with a philosophy that supports continued growth, engagement, and meaning for elders.” Green Houses provide all of the clinical care received at a nursing home, but in a homelike, intimate setting with more interaction and affection between staff and residents, and more flexibility to care for elders—not on a schedule, but according to the elders’ needs and preferences. Each elder has their own private bedroom and bathroom, and common areas are designed to resemble a private home, with all bedrooms facing a central living room with a fireplace, a small, open kitchen, and one large dining room table.

According to the blogstream Changing Aging, cofounded by Thomas, “the Green House model enhances the quality of life of an elder by emphasizing privacy, dignity, meaningful activity, relationships, and independence as well as improved quality of care.” Instead of working all day in segregated tasks where one staff member does the cooking, another the housekeeping, and another the social interaction with residents in planned activities, all staff members are trained in every area, such as safe food handling, personal care, cooking, planning activities, and light housekeeping, and act as almost-family members caring for someone at home. Staff members feel closer to the residents in a Green House home than in a traditional nursing home, enjoy their work more, and turnover is minimal.

I wonder, though, if a Green House could truly give my mother the level of physical care that she needs in the later stages of dementia. With further research I learn that it could. According to the Green House Project literature online, “seventy-five percent of Green House elders have some form of dementia...The Green House model is not just for the healthiest seniors. In fact, the range of limitations found in Green House homes is comparable to what you would see in nursing homes.”

More About the Green House Project

With the financial support of the Robert Wood Johnson Foundation ($12 million since 2002), a non-profit organization called NCB Capital Impact has coordinated most of the creation and testing of The Green House Project. In the fall of 2011, RWJF will donate another $10 million to help NCB Capital Impact bring The Green House Project to low-income communities, the first part of RWJF’s new $100 million “impact capital” campaign to encourage partnerships to fund Green Houses in areas that would not normally attract investors.

By September 2011 there will be 113 Green Houses open in 29 states, with another 227 in development. According to the developer of one Green House project, “Green House® operators report increased occupancy, higher satisfaction levels from residents, family and staff, less decline in ‘Activities of Daily Living,’ dramatic decrease in staff turnover, reduced incidence of depression, less use of medications, and strong testimonials to improved functionality and overall quality of life by elders’ family members. Operating costs are proving to be equivalent to current nursing home costs.” Care can be paid for by private insurance, Medicare in a limited number of situations, and, if the home is licensed as a nursing home, by Medicaid. If it’s a licensed assisted living facility, Medicaid reimbursement depends on the state’s particular assisted living regulations. An average of fifty percent or more of Green House residents are on Medicaid.

The AARP calls the project “a model for aging that supports growth,” and Long-Term Living magazine calls it one of the “Top Ten Senior Design Innovations.”

I learn that several times a day, nurses visit, taking notes on laptop computers or wireless hand-held devices, and are always on call. In his book
What Are Old People For? How Elders Will Change the World
, Thomas explains that “professional nurses enter into and work within the Green House using the home health care metaphor and thus have no need for a fixed base of operations...The nurses’ station, long a fixture of the long-term care institution, has no place in a Green House... The people of the Green House counter the tendency to medicalize their home by asking, ‘Can we find this in our neighbors’ homes?’ If not, then its use in the Green House must be seriously questioned.” Doctors, social workers, and physical therapists are on call.

I wish that there had been a Green House open in our area when my mother first needed to leave Greenway. If Mom were living in a Green House licensed as a nursing home, she would have enjoyed long, deep relationships with the staff for all of the last years of her life; she would have received the same services as in an assisted living facility or a nursing home; when needed, Medicaid would have taken over payment; she would never have had to move again; and it would have been a true home. I realize now that a Green House would have been ideal.

S
adly, when researching nursing homes for my mother, I discover that the only Green Houses currently open in New York State are three hours away. (Others, two hours away, will open in 2011.) Deeply disappointed, I seek the best nursing home in our city, preferably one that’s familiar with The Eden Alternative, even if they’re not officially certified as an Eden Alternative home. Our
city has three nursing homes, plus a high-end, private-pay continuing care facility. My first choice is a mostly private-pay nursing home on a shady residential side street. I’ve heard great things about this facility, and when I visit with the assistant director, I like all the green plants hanging from baskets along the main hallway, and the down-home country motif of the dining room with its gingham curtains and wicker centerpieces. The residents seem happy enough, activities abound, and it’s clean. I assume the facility must have at least a few beds set aside for Medicaid patients, and the assistant director suggests that they can take Mom “as soon as a bed becomes available.” But even though I assure them that I can pay for her care until her Medicaid application is approved, I never hear back from them. I call and leave messages, then finally give up.

My second choice is Woodside, the nursing home where Mom received physical therapy for her fractured pelvis in 2007. Back then I appreciated the professionalism of the staff, but never liked the facility’s sterile, hospital-like atmosphere. Since the third option in town has a poor reputation, Woodside appears to be our only choice. From my prior experience with Woodside, I doubt they follow the recommendations of The Eden Alternative. This worries and saddens me.

I
n April 2010, the Elm Haven RAs find Mom on the floor of her bedroom in the middle of the night. She’s apparently unhurt, but the next day she’s walking hunched over and looks as if she’s in pain. I drive her to the E.R., where they tell us that she’s lacerated her labia but it will soon heal.