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When my father became difficult, he was involuntarily committed and we lost control
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. Often, all it took to delight him was a ride to the grocery store, or attending morning mass, or a stop at Bruster's for butter pecan ice cream. A self-made businessman who ran his management consulting company in Pittsburgh for more than 30 years, he showed us how to bravely confront a future of uncertainty and little hope. By the summer of 2007, though, Dad had become confused, scared, and unwilling to take his medication. Finding and keeping in-home care was a struggle; as he became more agitated and leery of help from strangers, he would punch out and snarl. 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. During the day, when Mom wasn't watching, he would slip out and head down the road. 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, but someone we knew 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 such a home could provide; assisted-living facilities offer care for seniors who need some help with activities of daily living, yet aim to foster as much autonomy as possible. Most offer 24-hour supervision and an array of support services but give the residents privacy and space. In general, nursing home residents get significantly more care.
Sunrise 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 and cats and parakeets appealed to us since Dad had been a huge pet lover. And 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.) Because Sunrise does not accept
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. Mom visited most days, but it became harder and harder for her. She was frightened when he would grab her arm tightly and twist it, showing no signs of recognition. At first, when we left him, Dad would grasp our hands and beg us to take him along to Pittsburgh, one of the few words he could still say with utter clarity. But in time, he settled in--and even enjoyed himself. The staff offered singalongs, clowns, comedians, and similar evening treats. Those who were able could go on field trips. Sunrise, we decided, would be a fine place.
Things fall apart. But Dad became tougher and tougher to handle. Though the nurse aides would crush his 11 or 12 daily doses of pills and mix them with yogurt or ice cream, he would detect the medicine and spit it out. Mealtimes were a trial, since he started refusing to open his mouth. 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 staffers 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. The reason, according to Kathleen Koch, then Sunrise of Fox Chapel's director of community relations (and now at a different Sunrise location), was that "we hire a lot of people part time, and we're always looking for volunteers as well." Sunrise doesn't have as much turnover as many homes do, she says, "because it takes a special person to work in this type of environment."
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
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
Endless wait. Jack met up with Dad once the ambulance had delivered him to the psychiatric hospital (cost to Mom for transportation:
It was then that realization dawned: Dad was 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 need an attorney and there would be a hearing. It would be up to an administrative judge to decide whether to release Dad to go back to Sunrise or return home, or to keep him institutionalized. We were frantic--and powerless.
"We do everything in our power not to 302," Koch, who wasn't part of the decision, told me when I began looking into how common an occurrence this process is. "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 said that Sunrise wouldn't use a 302 commitment simply because a resident was being difficult, but rather because he was physically harming someone else.
But my research suggests that this is not an unusual fate for Alzheimer's residents at long-term-care facilities. It 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 federal law to give 30 days' written notice and a reason when they evict someone. They also must provide the phone number for the state agency that licenses nursing homes and instructions on how to appeal the decision. A judge will hear both sides and rule. (Assisted-living facilities are subject to state law, which varies widely. Most states require giving some notice but not necessarily a reason or a right of appeal.) Some nursing homes try to evade the 30-day notice requirement and appeal process by transferring the resident to a hospital or psychiatric unit, then refusing to take him or her back, says Eric Carlson, an attorney with the
When a person is sent out for a psych evaluation, there's generally a short holding period of, say, 72 hours, followed by some kind of adjudication. In Pennsylvania, a hearing must be held within three days of a 302 commitment to determine if a 20-day extension is warranted. But because it was Easter weekend, Dad remained in the psychiatric hospital for five days, mostly in the highchair and strapped to a bed at night. Finally, the public defender arrived, and as quickly as he had been taken away from us, Dad was back in our care.
Where to take him now? Although Sunrise had indicated Dad could come back if his medications were adjusted properly, we were so upset that we never asked. 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. Finally, because Dad had grown weak and had developed pneumonia, the doctor said he would refer Dad to hospice care.
When he arrived at the
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Health - One Family's Saga of Alzheimer's Care