Shortly after my father, Ronald Reagan, was diagnosed with Alzheimer's, I began to realize that my family has been spared some of the burdens and fears that come along with this terrible disease.
As a former president, my father still has Secret Service protection, so his wandering away from home and getting lost is not an ever-present fear for us. Also, financial reserves have allowed my mother to hire full-time caregivers.
My father will live out his days at home, cared for by people who know him well and surrounded by a lifetime of mementos and photographs. My parents' home has always been filled with remembrances of a life lived in the public eye, but now that my father has Alzheimer's, these things have a therapeutic effect. Visual recognition is important, and seems to trigger memory in those with the disease, at least for a while.
Many families eventually face the difficult decision of finding a facility for a loved one stricken with Alzheimer's. The good news is, there are better choices now--ones that mirror some of the techniques that we've found helpful with my father.
Like others, I have heard the horror stories about some care facilities--dismal, understaffed places where elderly patients, stripped of their memories and their dignity, are tied into wheelchairs and medicated to keep them quiet. I know places like this still exist, but increasingly facilities are focusing on understanding and comforting those with Alzheimer's.
Irwin Ziment, chief of medicine at Olive View-UCLA Medical Center in Los Angeles, said in an interview that geriatric facilities are more aware now of "linking to a person," often through alternative therapies such as aromatherapy, even color therapy. He sees more of an effort being made to tend to the quality of a patient's life.
I've visited a few of these facilities, mostly in connection with lecturing, and I've been impressed by the thought and care that has gone into them. Attention is paid to some of the peculiarities of the disease. Simple things like stepping from a carpet onto a hard floor can be frightening for someone with Alzheimer's; harsh colors can cause them to become upset.
The director of one facility, a geriatric center in Livingston, N.J., explained to me how he and his staff try to preserve as much of the patients' past lives as possible. I'd barely walked into this facility before one of the patients approached me. The man was holding a thick bundle of letters and a few files that looked like patient records--not unusual for a doctor, but this man's optometry practice was part of a life now gone, a life that is slipping into oblivion more each week as his memory recedes.
At this center, the staff had turned a closet into a makeshift optometrist's office for the man so he could still touch his past, revisit it, for as long as possible. "We don't let him do laser surgery, though," the director joked.
In other areas, desks had been arranged to look like office settings, with old manual typewriters and rotary phones. At the end of one hallway was a sewing table with a Singer sewing machine (sans needle, I'm sure). Everywhere I looked, there was a replica of everyday life--a file cabinet, a chest of drawers with scarves, clothes and costume jewelry spilling out of it. The patients could go through it, organize the drawers, mess them up again. A little piece of what life used to be.
One aspect of the disease is that it tends to be noisy at times. As the former optometrist and I talked, a group of patients were gathered for a sing-along with a staff member who was playing guitar and leading them--or trying to. One man was having none of it. He stood up and unleashed a torrent of colorful profanities.
"Shut up and sit down!" a woman yelled back at him.
"Damn it! We're trying to sing here!" another man shouted.
The staff didn't intervene. They knew it would pass, and it did.
This was the sort of facility filmmaker Deborah Hoffmann sought for her mother. Her film--called "Complaints of a Dutiful Daughter"--is a warm, poignant, often humorous testament to the challenges of watching her mother succumb to Alzheimer's. Hoffman described to me the experience of choosing a home for her mother when that became necessary. Even though, financially, she was fortunate enough to have some freedom of choice, she still stumbled upon some horrible facilities where it was clear that the staff was just waiting for the patients to die. Too much quiet became a warning signal, she said. Hoffman knew that Alzheimer's is boisterous, explosive at times.
She began to go to facilities unannounced at lunch time. The place she ended up choosing was loud and chaotic during the meal, and staff members took it all in stride; they weren't trying to impose order out of what is inherently a disorderly disease.
"We allow people their dementia," the director told her.
On another trip, I toured a facility outside Cleveland. Here too the needs of the patient were paramount. The individual rooms were designed to minimize the chances of disorientation. The outside of the doors were all different, some painted with flowers and trees around them. Inside, the bathrooms were visible from the beds, the light switches easy to reach. Patients were referred to as residents, as if they had checked into a hotel. The communal kitchens were available to residents who could still manage food preparation and cooking.
Staff members at the Cleveland facility had collected information and insight about Alzheimer's not only from doctors but also from family members, caregivers, the people who deal with the disease on a daily basis. As a result, the door that leads to the outer lobby and street entrance--where they don't want residents to go--is the same color as the walls, which makes it less noticeable. It works; I walked right past it.
Allen Lerner, assistant professor of neurology at Case Western Reserve School of Medicine in Cleveland, said that Alzheimer's care facilities are increasingly striving to be more pleasant. The best facilities are those trying to blend medical necessities with a soothing atmosphere, he feels.
What is evolving now is an emphasis on creating a relaxed environment. An individual's past isn't treated as if it's extinct. Glimmers of it remain, and those are acknowledged, respected, nourished.
Gary Small, a physician at UCLA who specializes in geriatric medicine, thinks it's important for facilities to learn from family members and caregivers. "The truth is that doctors don't really know the day-to-day realities of Alzheimer's," he says.
There is little dignity in disease--any disease. With Alzheimer's, the anchors of a lifetime--memory, awareness, familiarity, knowledge--are pulled up and a person is adrift on a strange sea. It's up to others to create dignity around that individual, construct it from the end-pieces of a life that, hopefully, was lived well.
Patti Davis is a writer in Santa Monica, Calif.
CAPTION: Patti Davis with Ronald and Nancy Reagan, Christmas 1981.