Summer 2008

Outside-the-Box Care Management
By Irene Zelterman, LCSW, C-ASWCM
Aging Well
Vol. 1 No. 3

As a private geriatric care manager, I readily accept the opportunities, responsibilities, and honor of helping very frail older adults. Elder law attorneys who have been appointed as legal guardians for older adults who can no longer care for themselves frequently enlist my expertise. Elders who come to the attention of the courts often suffer from psychological, physical, and medical neglect.

 When there is no family involved, the guardian and I frequently enter the older adult’s life with little or no information about past medical or social history. To provide the best care possible for older adults, we must possess the ability to be creative and develop innovative solutions. Pat’s case was one that required creative ideas and significant thinking outside the box.

Confronting Curveballs
The real challenge of Pat’s case lay in developing a team of skilled professionals who were willing to work with an extremely frail older adult about whom we had no history. It was critical to structure a team that would treat Pat in ways that respected her individuality and dignity. It quickly became apparent that not only would we need to push ourselves beyond our comfort levels, but we would also need to challenge the myths and unwritten rules about the ways certain things should be done.

Sarah, a geriatric care manager, planned to leave her job caring for Pat and pass Pat’s case on to me. Because the court had appointed a guardian when Pat was already in late-stage dementia, little information was available about her. The first time I saw Pat, she lay curled up in a fetal position in her bed, very thin and nonresponsive. Sarah explained that Pat’s current home care worker, Paula, had been with her since before the guardian was appointed.

Since Pat had hired the home care worker before Sarah became involved with the case, Sarah felt uncomfortable about replacing the worker, despite the fact that the home was dirty and in poor repair and the worker spoke little English. We weren’t even sure of Paula’s primary language.

Sarah told me that Paula had her own bedroom, but Sarah never entered this room because she felt uncomfortable doing so. When I questioned Sarah about the home’s state, she said she had not mentioned it to Paula. She was reluctant to upset Paula for fear she would leave the job, leaving Sarah with the huge challenge of replacing her.

During my second home visit, I spent a fair amount of time talking to Pat. I stroked her hair and face as I spoke to her. My touch appeared to elicit a connection, and Pat responded to me by making eye contact. At one point, she looked behind me toward the doorway. I turned to see what had caught Pat’s attention and saw a woman, who was not the home care worker, walk past. I questioned Paula about the other person and where she had been when I arrived. Clearly, the only place the woman could have been was in Paula’s bedroom. Although I was very suspicious, I needed time to develop a plan of action.

After consulting with Pat’s legal guardian, I hired Margaret, a new home care worker. She accompanied me to Pat’s apartment at about 9 in the evening. We arrived unannounced and quite unexpectedly, particularly in light of the late hour. Surprisingly, we discovered several people living in the apartment. Clearly, Paula had been renting living space to other people. There were two people asleep in Paula’s bedroom and one asleep on the couch in the living room. I let them know in no uncertain terms that they had one hour to pack their belongings and get out.

In consultation with the legal guardian, we decided to handle the situation without involving the police. If we had called the police, it would have resulted in chaos in Pat’s apartment. Without a doubt, Pat would have been taken to an emergency department and probably hospitalized. In her extremely fragile condition, Pat may not have survived all the commotion. At the very least, she would have been troubled and upset by all the activity in her home. We handled it in a way that resulted in a minimal amount of disruption.

Building a Team
Margaret, a very take-charge person, emerged as precisely the right player for the team, and she immediately began to clean and spruce up the apartment. She also expended her efforts toward increasing Pat’s strength. Within a few days, she had Pat out of bed and in a wheelchair. When I returned to the home, I found a completely different Pat. She was sitting in her chair, smiling, and feeding herself. She had also begun to speak a few words of English, along with another language I was unable to identify.

Since Pat lived in a neighborhood with a large Russian-speaking population, I suspected that she may speak Russian. So when I sought a physical therapist for the case, I looked for a Russian-speaking therapist. The therapist eventually succeeded in getting Pat to take a few steps with a walker. Within a few weeks, Pat was sitting in her living room, watching TV, and speaking in short sentences.

As it turned out, Pat was not speaking Russian, and to this day I am still unsure what language she was speaking. What she was saying may have been made-up words, given her aphasia.

Although it was difficult, I located a physician who was willing to care for Pat, despite her extremely frail state and unknown medical history. Dr. Smith agreed to make home visits, a tremendous benefit in this particular case. I was happy to find a physician who shared my philosophy that older adults do better at home than in hospitals. Dr. Smith trusted that between Margaret’s caregiving and my care management, we would be able to care for Pat at home.

With Margaret’s help, I replaced broken furniture and dirty curtains and turned Pat’s apartment into an appealing and comfortable home. Margaret succeeded in getting Pat not only to eat regular meals but also to sit at her kitchen table. Margaret and Pat began to have fun together. Margaret painted Pat’s nails, and they enjoyed watching TV together.

Pat regained a fair amount of her ability to speak but despite our urging, we were still unable to prompt her to tell us anything meaningful about herself. Her speech was limited largely to verbalizing what she did or did not want.

Pat and Margaret shared a love for cats and the two of them would sit together looking over a book with photographs of cats. Pat was able to make small jokes. She told Margaret one cat was very pretty, but the cat on the next page was ugly. That cat, she said, was the husband.

During favorable weather, Margaret would take Pat outside. Pat would point to stores she wanted to visit because she loved to shop. She also loved to watch children and talk to people she encountered. Strangers on the street responded very positively to Pat. They would stop and have short conversations with her. Pat loved the interaction. The Pat I was seeing bore little resemblance to the Pat I saw during my initial home visit.

Creative Solutions
As the years passed and Pat gained more strength, she also became more headstrong. When Margaret would tell Pat it was time to go to bed, Pat would reply, “You go.” Pat preferred to stay up late and then sleep until 10 the next morning. I suggested that Margaret should adjust her own schedule to Pat’s rather than the reverse.

As Pat got stronger, she began to try to get out of her bed. As a precaution, I bought hospital rails for the sides of her bed. One night Pat managed to get over the rails and fell out of her bed. When Margaret contacted me, I immediately called the doctor. He suggested that we not call 911 because that would result in Pat’s having to spend the night in the ER, with hospitalization likely to follow.

Dr. Smith suggested that since Pat seemed not to be in pain, we could wait until the morning when he would make a home visit. We both agreed that spending hours in a hospital ER was not in Pat’s best interest. He called me the next morning from Pat’s apartment to tell me that her hip was probably broken, and he recommended a very sensible and humane solution.

He explained that we could have Pat hospitalized where the staff would x-ray her hip and tell us it was broken, or we could leave her at home. He reasoned that since she was not walking very well before the hip fracture, there would be little difference even with the fracture. He recommended that we leave her at home where she was comfortable. As time went by, it was clear that the doctor’s assessment was correct. Pat’s movement was no different from her movement before the fall.

Dr. Smith’s recommended course of action departed somewhat from typical procedures in similar cases. He placed Pat’s best interests ahead of his own fear of liability or litigation, and he truly did what was best for her.

A few years later, Pat died peacefully in her bed during the night. Since I had already arranged for the funeral, I simply called the funeral director, who consulted with the doctor and then went in the morning to pick up Pat’s body. A call to 911 would have summoned the police and an ambulance. The situation would have involved the medical examiner as well. All of this would have resulted in noise, drama, and delay. It also may have made it impossible for Pat to be buried the next day, in keeping with her Jewish tradition. Pat was treated with dignity to the very end.

Assembling a team of people who were willing to take good care of Pat, despite knowing little about her previous life, made Pat’s final years more meaningful and dignified. The team wanted more for Pat than to allow her to continue fading away. The team remained willing to stay focused on whatever was in Pat’s best interest and committed to thinking outside the box. Exerting such a significant impact on a person’s life is one of the great rewards of being a geriatric care manager.

— Irene Zelterman, LCSW, C-ASWCM, is founder and executive director of Hearthside Care Coordinators care management agency in Brooklyn, NY, which serves the New York City metropolitan area.