An article in the October 30, 2010, New York Times, “Money Woes Can Be Early Clue to Alzheimer’s,” reminded me of how important it is for everyone working with older people to have knowledge of aging, including the signs and symptoms of dementia. While it may not be so obvious that lawyers and financial planners should have training in dealing with older people with diminished capacity, it should be particularly obvious that social workers should. Unfortunately, recently a social worker lacking such knowledge created a bad situation for me and my uncle.
I took over the care of my Uncle John five years ago when my Aunt Mary died at age 68 of colon cancer. Aunt Mary, a licensed practical nurse, had been caring for her husband for at least five years prior. He had suffered two strokes, one of which was brought on when he was severely beaten with a metal pipe; he suffered some brain damage at that time as well. Despite these setbacks, Aunt Mary and John loved each other and had lived a very happy, if isolated, life together in a trailer home in the Poconos. On her deathbed, Aunt Mary asked me to take care of John; they didn’t have children. She also tried to tell me what I already knew–that John was not 100%, or as they say, he wasn’t dealing with a full deck.
My first two years of caring for Uncle John consisted of finding an appropriate assisted living faculty in the Poconos, where I thought he could be visited by friends. However, no friends came to visit, his health began to deteriorate, and it was a nuisance to rent a car every few weekends and drive six hours round trip to visit him. So I looked into nursing home care in Manhattan. I was very fortunate to find a private room available at Isabella Geriatric Center in Washington Heights, just a few blocks from my apartment.
I rented a van and moved Uncle John and his belongings to Isabella. The facility soon evaluated him for his clinical depression, and he began taking medication and talking to a psychologist every week. He started to engage in life again. He participated in art and pottery classes. The center put up shelves in his room to hold his numerous, meticulously hand-glued models of ships and planes. When he complained about the food, I bought him a small refrigerator and kept it stocked with his favorite foods. I visited him on a weekly basis and took him out to lunch and then food shopping. Yet as good as I thought the transition was for him, Uncle John complained all the time. He felt his freedom was restricted. He didn’t like that he couldn’t take his electric wheelchair out of the facility by himself, that he couldn’t drink beer and whiskey whenever he wanted (there was a happy hour once a week), that his diet was restricted (he was gaining weight and having trouble breathing), and that he couldn’t find a girlfriend. He also suffered from frequent urinary tract infections that landed him in the hospital every other month or so, where he would stay for a few days and then return to his room at Isabella.
However, one such hospitalization discharge did not follow this pattern. I am not sure if this was the first time a social worker visited John during any of his hospitalizations. If so, no one had ever contacted me before. This time the social worker did contact me, at 3 pm the Friday before Memorial Day. She told me that John refused to go back to Isabella and wanted to go to another facility. She had found John to be competent and able to make his own decisions, so the two of them had worked together to identify another facility. As it happened, one place had a bed available for the next day, so the social worker made plans for John to be discharged on Saturday of Memorial Day to this facility somewhere in the Bronx.
The social worker told me that because she found John to be competent, the family did not have to be involved in this decision-making process. When I asked her then who is responsible for moving all of John’s belongings to the new facility, she said the family, of course. By the time I rushed to the hospital to meet with the social worker, she had already left for her holiday weekend. Uncle John was adamant about not returning to Isabella. So once again, I rented a van and moved his belongings, this time from his single room at Isabella to his shared room about an hour’s drive to the Bronx.
Needless to say, I was furious. I was furious with Uncle John for what I felt was a rejection of all that I thought I had done for him. But I also knew that he could not truly be held accountable for this decision. He didn’t have all the facts, and he had never made such serious decisions on his own before. However, the social worker should have known better. If she had bothered to include the family in the discussions or had contacted the social worker at Isabella, she would have had a fuller story. Now John was sharing a room, and I would not be able to visit him unless I took a subway and then a train and spent a full day for a visit, which I could not do on a regular basis as I was finishing up doctoral courses in social work.
Early in my career as a social worker I, too, worked as a social worker/discharge planner. It was my job to conduct a psychosocial assessment of all patients 65 and over. An important part of that process was interviewing family members, caregivers, and any health care professional who was or needed to be involved in the patient’s care. I realize the world of health care and hospitalization has changed since then, but I still believe there is no excuse for not taking into consideration an older patient’s psychosocial and medical history and discussing a discharge plan with the only caregiver and relative. Also, Medicare regulations in section 482.43, Condition of Participation: Discharge Planning, state that for all participating hospitals under Medicare, “The patient and family members or interested persons must be counseled to prepare them for post-hospital care.” As I was John’s only relative as well as his health care proxy, the social worker should have discussed the discharge plans with me prior to discharge. This situation was all the more frustrating for me, because I knew that if the hospital had programs like Care Transitions or BOOST in place, this bad discharge outcome could likely have been avoided.
Uncle John hated the new facility. He said that it was more restrictive and that his roommate was stealing his money and his clothes (which was true). After two months he transferred back to Isabella; once again, I had to rent a van and move his belongings. He was welcomed back like a prodigal son. The staff at Isabella had become fond of John–he is a character. They had enjoyed his childish pranks, and his unique art form–everything he drew or molded was a devil. John moved into a double room at first, and got along well with his roommate. Eventually he moved into a single room. Everyone commented on his improved attitude. Perhaps he needed to see for himself that I had his best interests in mind and that Isabella provided him with the best quality of life that he could have given his circumstances. If only the social worker/discharge planner at the hospital had done a little more investigating, she would have known that, too.