We lost him a little at a time. In 2000, my Dad, then 80, was diagnosed with Alzheimer's disease, and it began: He moved off ever so slowly, calling back at us as he went, trying to keep us in his sight.
For the most part, he was joyful, although keenly aware of what was happening to his mind. He smiled, sang, and danced the Irish jig; often all it took was a ride to the grocery store to delight him, or attending morning mass, or a stop at Bruster's for butter pecan ice cream. A successful, self-made businessman who ran his management consulting company in Pittsburgh for over 30 years, he showed us how to bravely confront a future with uncertainty and little hope. He told us how much he loved us as often as he could. And we, in turn, were lovingly resolute about keeping him at home with Mom as long as possible.
By the summer of 2007, though, Dad had become confused, scared, and unwilling to take his medication. Finding in-home care was a struggle; as he became more agitated and leery of help from strangers, he would punch out and snarl. Someone would show up one or two times and then not again; many times a call first thing in the morning left Mom to cancel her plans. My brother, Jack, who lives nearby, would arrive each evening and coax Dad upstairs, then struggle to get him—fighting all the way—to swallow his medicine and undress. Sometimes, he got up in the middle of the night and would start down the stairs before Mom woke up and found him befuddled, frantically searching for something he could no longer put into words. During the day, when she wasn't watching, he would slip out silently and head down the road.
An adult day-care program for people with Alzheimer's gave her a few hours a week to catch her breath, but her fatigue, the constant worry, and the stress soon grew impossible for the four of us kids to ignore. We had to look out for her health, too.
Searching for a home away from home
We were distraught at the realization that he needed to go. Much as we wanted to keep Dad with us, he wasn't safe at home, and Mom, though 10 years younger than he, was wearing out fast. Beds for Alzheimer's patients were hard to find, so we consulted a physician who is an Alzheimer's specialist, someone who had cared for Dad at various stages of his illness. He recommended Sunrise of Fox Chapel, a senior assisted living facility in Cheswick, Pa., whose "memory care unit" is designed specifically for Alzheimer's and dementia patients.
As it turned out, Dad probably required more care than an assisted living home could provide, but we didn't know the difference between assisted living and nursing home care. Now we know that an assisted living facility such as Sunrise provides care for seniors who need some help with activities of daily living, yet wish to remain as independent as possible. It aims to foster as much autonomy as the resident is capable of. Most offer 24-hour supervision and an array of support services but give the residents privacy and space. In general, nursing home residents require significantly more care, including help with getting around, eating, bathing, and taking medication.
Sunrise was located about 15 minutes from my parents' home in a suburb of Pittsburgh. It was small—61 residents—and seemed a warm, friendly place, with a garden courtyard, small living rooms, cozy dining areas, and private bedrooms with windows. The resident labradoodle, Hudson, plus a couple of cats and some parakeets, appealed to us since Dad had been a huge pet lover. Sunrise had something else in its favor. Jack's house, where he also works, is just 2 miles away. My sister and I both live several hours from Pittsburgh, and although my brother Mike lives nearby, his work/family schedule is not as flexible as Jack's. Dad was admitted, and we were advised to bring clothes that he liked and to decorate his room with personal items to make it as comfortable as possible. Because Sunrise does not accept Medicare or Medicaid, this would be a private-pay deal: some $4,800 a month out of pocket.
Jack visited twice a day, at random. And he became friendly with a few of the nurse aides, figuring that knowing staffers and being engaged would translate into more attention for Dad. Still, sometimes when he arrived, no one knew where to find Dad. My brother would eventually catch sight of him walking the hallways alone. Or he would find Dad locked in his room. When he asked why, the answer would often be that perhaps Dad had locked himself in. Mom went most days at first, but it became harder and harder for her to visit. She was frightened when he would grab her arm tightly and twist it, showing no signs of recognition. The rest of us visited as frequently as we could.
At first, when we left him, Dad would grasp our hands and beg us not to go, to take him along to Pittsburgh, one of the few words he could still say with utter clarity. But in time, he settled in—to even enjoy the regular Sunrise events. The staff offered singalongs, clowns, comedians, and similar evening treats. There was a Christmas party with presents from Santa. Those who were able could go on field trips to parks and to lunch. Sunrise, we decided, would be a fine place.
Things fall apart
But he became harder and harder to handle. Though the nurse aides would crush his 11 or 12 doses of pills each day and mix them in with yogurt and ice cream, he would frequently detect the medicine and spit it out. Eating was a trial as well, since he started refusing to open his mouth. Jack began to visit at breakfast and dinner, to feed him and to make sure the pills went down. Still, at 95 pounds, he now weighed about half of what he had before his decline. His mood began swinging wildly.
The impression we had was that Sunrise was doing the best possible job under difficult circumstances. But we observed that aides regularly worked overtime, and the nurse aides responsible for much of the hands-on resident care seemed to come and go. Outside the building, a large sign always advertised for help. Kathleen Koch, Sunrise of Fox Chapel's director of community relations, tells me that staffers often like to work overtime for the extra money and says, "We don't have as much turnover as some of the other places do because it takes a special person to work in this type of environment." She notes that "the reason we have that sign is we hire a lot of people part time, and we're always looking for volunteers as well."
But I've since discovered that high nursing staff turnover is not unusual for long-term care facilities. According to a 2008 survey by the American Health Care Association, a yearly turnover rate above 70 percent in certified nurse assistants is common in rural nursing homes, for example. Nurse turnover rates are also high-50 percent annually or more.
After Dad developed a staph infection from an open sore on his elbow, his downward spiral accelerated. Dressing the wound daily required sedating him, but afterward he would be even more agitated than before. He started to bother other residents, trying to shake hands with them and reaching out to grab them. Finally, on March 19, 2008, Dad hit a nurse who had begun to work on his bandage—by her account, a glancing blow. A superior, who witnessed the incident, insisted that she file a complaint with the Allegheny County Health Department, which immediately sent out two representatives to interview Dad. Jack was called and informed that Dad had been reported for aggressive behavior and that Sunrise had recommended to the county officials that he be sent to a nearby inpatient psychiatric facility to have his medications regulated. She assured Jack that Dad could return in a few days once a doctor had evaluated him.
Jack met up with Dad once the ambulance had delivered him to the psychiatric hospital (cost to Mom for transportation: $603). For five hours, the two sat in a waiting room, watching an assortment of troubled people parade through the doors. But no doctor arrived, and there was no room with a bed. Finally, around 10 p.m., Jack was told Dad would be sent to another psychiatric hospital, where, when Dad awoke the next morning, he was placed in a sort of adult highchair that only allows for arm movement. The nurses set him down in front of the nursing station, telling Jack they were afraid someone would hurt him if he were free to move around. The doctor never did come to evaluate his medicine that day, and Jack grew nervous. This is insane, he thought—why send an 88-year-old man with advanced Alzheimer's to such a place? Distraught, he announced to the nurses that he was taking Dad out of there. No, he was told, "you can't."
It was then that realization dawned about exactly what our family was facing: Dad was a ward of the county and no longer in our care. He had been committed for a 72-hour involuntary hold, called a "302 commitment" after the part of a Pennsylvania law the process is named for. The law says that a severely mentally disabled person may be subject to involuntary examination and treatment when physicians or certain county mental health personnel or police officers observe that he or she poses a "clear and present danger" and "has made a threat of harm to self or others." In order to get him back in our care, we would have to have an attorney or public defender come in, and there would be a hearing at the hospital. It would be up to an administrative judge to determine Dad's competency and decide whether to release him to go back to Sunrise, return home, or remain institutionalized. We were frantic—and powerless.
"We do everything in our power not to 302," says Koch, who wasn't part of the decision that day. "The only reason we do 302 is if there has been physical harm done to someone. It does not happen very frequently, but, unfortunately, there are times when we don't have a choice." Koch says that Sunrise wouldn't use a 302 commitment simply because a resident was being difficult, but rather because he was physically harming someone else. "We deal with difficult behaviors every single day, because it is an Alzheimer's community," she says. "We try to calm and soothe them."
But in researching how common our situation that day was, I have learned that this is not an unusual fate for Alzheimer's residents at long-term care facilities. My reporting shows that seems to happen less often at assisted living facilities than in nursing homes, perhaps because the eviction laws are looser for assisted living units. Generally, nursing homes are required by the federal Nursing Home Reform Law to give 30 days' written notice before they evict someone, giving the reason for the eviction along with the facts of the case. The notice must provide the telephone number for the state agency that inspects and licenses nursing homes and instructions on how to appeal the home's decision. An administrative law judge will hear both sides and rule. (Assisted living facilities are subject to state law, which varies widely state by state. Most states do require some period of notification, but there may not need to be a reason given for the eviction or a right of appeal.) Some nursing homes try to evade the 30-day notice requirement and possible appeal process by transferring the resident to a hospital or psychiatric unit, then refusing to take him back, says Eric Carlson, an attorney with the National Senior Citizens Law Center in Los Angeles. "Hard-to-manage nursing home residents with Alzheimer's and other dementia are often committed involuntarily from nursing home facilities to psychiatric units," Carlson says.
When a person is sent out for a psych evaluation, the process falls under the jurisdiction of state law. Generally, there's a short evaluation or hold period of, say, 72 hours, which varies state to state. That is followed by some kind of adjudication, which allows for the person to be held against his or her will for a longer period or returned to the care of his family. In Pennsylvania, the law provides that within three days of a 302 commitment, a hearing must be held to determine if a 20-day extension is warranted.
Dad's case was to have been reviewed in 72 hours, but it was Easter weekend. So for five days, he remained in the psychiatric hospital, mostly in the highchair and strapped to a bed at night. There was no change in medication that we know of. Finally, Monday morning, the public defender arrived and Jack explained the situation. The hearing was held. And, thankfully, as quickly as he had been taken away from us, Dad was back in our care.
The last stop
Where to take him now? Although Sunrise had indicated Dad could come back if his medications had been adjusted properly, we were so upset that we never asked. We heard about a local hospital with a geriatric psychiatric unit and decided it was our best option. During the almost three weeks Dad was hospitalized, Jack and my brother Mike's wife visited more than a dozen nursing homes with advanced Alzheimer's care units. Each time, they were told a bed might be available. Each time, after receiving Dad's records, the home said there wasn't a room. I've since learned of dozens of other Alzheimer's families who were confronted with a similar dilemma after an involuntary commitment. My guess is that facilities are scared off by the prospect of taking on a resident who has exhibited aggressive behavior.
Each day, Dad grew weaker. His time in the psych ward had left him bedridden, and he developed pneumonia. Finally, the doctor pulled us aside and said it was time to let him go. He suggested that if we were willing to forgo life support, such as a feeding tube, he would refer Dad to hospice care.
After a family meeting that was surprisingly unemotional, we agreed that it would be right to allow Dad to finally find peace. When he arrived at the Good Samaritan Hospice in Cabot, Pa., the nurses believed he had two days to live. He wanted more—and, doting on him, they gave it. He started to speak. He smiled again and even laughed. It was an amazing experience, and I can't say enough about the magic these nurses do. Seven weeks later, he died in his sleep, as the sunshine crept in through his window and strains of "Too-ra-loo-ra-loo-ra...That's an Irish Lullaby" played softly on the stereo. It was May 29, 2008. He was 88.