I left the meeting puzzled but with a ray of hope. We had a name for the disease and a possible treatment. I was unacquainted with Aricept, the standard drug for Alzheimer’s. Maria was familiar with it, so she knew more than I did about what the prescription meant. Maria’s concern was that she had read that Aricept is only effective for six months. That is not true but the effectiveness of Aricept is still a debatable issue.
When we got home I immediately went to the computer. When I called up the literature on Dementia with Lewy Bodies, the first sentence I read was: “This disease is progressive, completely destructive, and always fatal.” The news did not get any better after that. I looked in vain for any glimmer of hope. The description of the disease said that people live with it an average of seven years. Averages in such a case tell you nothing about an individual. One person might live one year, another person ten or twenty years. With Maria’s health record she was not in imminent risk of death. But living for years or decades with a destroyed mind was truly dreadful. I am sure there are worse things in the world but at that moment I could not think of anything worse than watching the person you love slowly losing her mind.
I was furious at the neurologist, much of it displaced anger. First thing Monday morning I called, hoping to learn something – anything – that would be helpful and positive. I was told that she returned phone calls only between 3 and 5 PM on Fridays. That added to my ire but I said I would be sitting by the phone from 3 to 5 on Friday. Come Friday I waited until it was after 5 PM. When I called her office, I was told that she had been busy. I concluded that she did not want to talk to me. At that point I didn’t want to talk to her, either. I was disgusted at her handling of the situation. On reflection I guessed that she did not want to discuss the horror of the disease in front of Maria. But she could have taken me aside and said something human to human. She is supposedly a brilliant researcher but her interpersonal skills left room for improvement.
We went back in three months and received an additional drug. Maria was subjected to more long mental tests. She resisted doing the full line of testing; they obviously thought she was a good candidate for research and asked us to participate. I did urge Maria to keep going back because I thought that if any breakthrough in treatment occurred this Institute was a place that would know. Columbia Presbyterian is one of the four main research centers in New York for Alzheimer’s. Later, I tried to switch to NYU Medical, one of the other four. I was told that they were interested only in people with Alzheimer’s not Lewy Bodies.
Dementia with Lewy Bodies can most simply be described as a combination of Alzheimer’s and Parkinson’s. Maria had lately complained about stiffness in her left arm. I did not connect that to the other problem she was having but it was evidence of the “Parkinsonian dimension” of the Lewy Bodies. Alzheimer’s is the main form of dementia so that many people equate the two words. Lewy Bodies is the second most common form of dementia but I found that many medical people had never heard of it.
Alzheimer’s was first diagnosed in 1907 by Dr. Alois Alzheimer. For more than half a century, the disease given his name was thought to be a rare disease found among middle-aged people. Amazingly, no one made the connection between the “senility” of the elderly and this supposedly rare disease of people in their 40s and 50s. Hardly any research was done until 1980, a fact that I think is one of the great tragedies of twentieth-century medicine. Lewy Bodies was not diagnosed until the 1980s so that there is even less research on it than on Alzheimer’s. The treatment of Lewy Bodies is difficult because of the physical and mental dimensions. The drugs for one side of the problem can interfere with drugs for the other side. The relation of the two treatments has to be carefully calibrated.
How much progress has been made in research on dementia is unclear. I had thought that a breakthrough might be just on the horizon. One constantly sees reports in the press of discoveries in the area. The only infallible test that a person has the disease is an autopsy. Despite the advances in studying the brain, researchers are still at the beginning in trying to track the growth of plaques in the brain that destroy short-term memory. At the 2003 meeting of the main researchers, there seemed to be little agreement on where we are. Some of the experts were skeptical that the present drugs had any effect at all.
I never told Maria the whole story of Lewy Bodies. By this time the computer was beyond her so she had to rely on my reports. When she would ask me what I had read, I never lied to her but I also did not share all that I knew. I think she was able to maintain the fiction that Lewy Bodies was not as bad as Alzheimer’s though in fact it is worse. I do not know if she really believed that, but I was not about to correct her false belief.
I know that research is important and I wanted to be cooperative with the Neurological Institute. Nonetheless, my primary concern was getting clinical help. Going up to 170th street every six months was not going to be enough. Maria was attached to her primary care physician of many years. The woman was always kind and available to give what help she could. I did not think she was the right person to help us. I was still innocent of where to turn.
Adjusting to the Horror (Dec., 2001 to August, 2002)
After an initial shock, human beings have a resilient tendency to adjust to whatever the situation is. Conditions of life that a few hours, days, or months previous would have seemed intolerable can become the “normal.” One has to try to live with whatever has become the day to day experience. There is a blessing in not having to look into the abyss at every moment of the day. There can also be a disadvantage in shortening one’s perception, thinking only of managing the immediate situation. Both of us started living in what the literature would probably call “denial” but denial is not all bad (as Kübler-Ross acknowledged while she placed it first in the stages of dying).
Maria sometimes would ask: “What is going to happen to me?” I would answer – truthfully – “I don’t know; no one knows.” Both of us knew that the long term prognosis was horrible. For the care giver, the later stages of dementia are the worst to observe. For the patient, the earlier stages must be the worst, when one is fully aware of what is happening. For my part, I would sometimes think: This is the worst experience of my life. But then I would also think: This may be the first time in my life that I am doing something that I am sure is good.
Hannah Arendt wrote that only really bad people have good consciences. That is, most of us most of the time, live with conflicts of conscience; we constantly submit our motives and actions to re-evaluation. In this case, however, I knew exactly where I had to be, what I was called to do, and why I was doing it. She would sometimes ask: Why are you doing this for me? That question had a very simple answer: I am doing for you exactly what I know you would do for me.
An extraordinary moment occurred in December, 2001. Maria’s dearest friends invited her to a beautiful spot across from New York harbor called Breezy Point. I was not invited; it was a women-only event which I fully understood. A dozen or more of her friends wished to celebrate the greatness of her life while she was still able to join in the ritual. From what I gathered later, it was an event of profound joy and sorrow. As her obituary in Newsday noted, not many people would have the courage to take part in what was essentially a good bye to her life of sanity. Such an event could have been cruel but the women knew Maria well and the ritual supported the mix of emotions that was inevitable. Maria knew that day exactly what was at stake but her only feeling later was gratitude for the care shown by the women. They could have waited a little longer but they wanted to be sure that Maria could fully participate in the music, prayers, and conversations of the day.
In an effort to keep things normal, I went ahead with plans to use our time-share in Aruba. We owned week one in Divi Village where we had gone many times. I thought it would be a good break from the winter cold and a way to forget for a while. I was just coming off twenty-one days of intravenous antibiotics. The oral drugs had not been able to dislodge the deeply buried lime disease; my last hope was intravenous drugs. The treatment succeeded in killing off the spirochetes but it also knocked me around. Still, it seemed like a good idea to go to Aruba so as to sit on the beach and eat at our favorite restaurants.
The week did not go well. Maria came down ill after a few days; it was diagnosed as food poisoning. Although she was not very sick, they recommended she stay overnight in the hospital. When I left at the end of visiting hours, Maria had already made friends with the half dozen other women in the ward and they were pleased to have her with them. However, I got a call in the middle of the night that her behavior was disruptive and she was demanding to talk to me. On the phone she described terrible things happening in the hospital and claimed that people were trying to harm her. She had awakened in the night and being completely disoriented was frightened. I tried to calm her down and told her I would get her as soon as I was allowed into the hospital.
When I arrived, I found an exasperated hospital staff and patients in the ward who were upset at her behavior. It was several hours before I could get her released from the hospital. During that time she was not making much sense. However, as soon as we left the hospital, she seemed to return to a grasp of reality. Unfortunately, I got sick the next day which did not help the trip. But Maria was always at her best when she had to take care of me during sickness. We managed to make the journey home but I knew that was her last trip to Aruba.
As soon as we arrived back in New York, I set about with a more serious resolve to get some help. Her behavior in the Aruba hospital impressed upon me that her hold on reality was tenuous. I knew that the medical resources of New York City are almost limitless. I had good health insurance from the university. But it was a mystery to me how to start. I tried at first to get in touch with one of the nursing professors (NYU’s nursing division has a palliative care unit). It was in between semesters and I was not able to reach the people who might give me advice.
I had the bright idea of calling the wife of one of my colleagues in the department. Cindy Hosay is a professor with a specialty in gerontology and was concerned about Maria. I knew she would at least sympathize with my plight and give me some advice but she did better than that. She put me in touch with a social worker. What I first needed was an assessment of the situation, someone who could oversee the problem as a whole and recommend specific steps.
This social worker, Kathy, proved to be an invaluable aide. She visited the apartment every other Monday. She would not only talk over things with Maria but she became the “gatekeeper” for other services we needed. She got us an appointment with a psychiatrist at Beth Israel Hospital who is an expert on Lewy Bodies. We began to see him on a regular basis and I finally had some confidence that the medicines were being carefully watched. On one occasion I made a separate appointment with him and he gave me a mini-course on the drugs involved. He was candid in admitting that there were no universal protocols; he had to feel his way with each patient.
The other big move in January was dumb luck on my part. In thinking about a primary care physician for Maria I went over to where I had found one for myself. NYU runs a health care center for students just a few blocks from us. There is a small faculty practice at this center, staffed at that time by two young women physicians. I spoke to the one who was available; she was willing to take on Maria but said that her colleague, who specialized in gerontology, was better suited for the job. I hoped that Maria would feel comfortable with this energetic young woman, Alexandra. She and Maria hit it off immediately and I had no difficulty in getting Maria to leave her primary care physician.
From that point on, Alexandra watched every aspect of Maria’s health. After prescribing a B12 vitamin, she called and said it would be better if Maria came in every first of the month to receive a B12 shot. Each month when we came in, Maria would get a big hug and a generous amount of time for an examination of every aspect of her health. On two occasions, Alexandra phoned on a Saturday evening to recommend a change of treatment. On one of those occasions, she tracked us down in Montauk, called the pharmacy in Montauk which was closed, and finally found a pharmacy in East Hampton so that we could pick up the prescription first thing on Sunday morning.
One striking thing about many of the people we dealt with was they weren’t just in the work for the money. Alexandra mentioned to me about six months into the shots that she had just discovered it was not covered by insurance. She did not like to ask – but would I pay for half of the expense already incurred. I said I would gladly pay the whole bill; she should not have to subsidize the cost of Maria’s treatment. It was a similar case with Kathy, the social worker. She mentioned after about six months that she had not been paid yet. I was shocked, having assumed that she was receiving money from the insurance company. What really shocked me was that she would travel to the apartment, sit with Maria for an hour and supply me with useful information – while not getting paid. We fixed it up and got the proper papers filed. Filing health care claims and following up on delays and mistakes can be almost a full time job in itself.
With the social and medical aspects of Maria’s illness being monitored by competent people, I could turn my attention to two other areas: nursing homes and legal affairs. I did not want to be suddenly forced into deciding about a nursing home in the midst of a future crisis. I wanted to get a sense of what the options were, even if all the possibilities were somewhat depressing. Maria was willing, if not enthusiastic, about taking a tour of a few nursing homes. I picked out two of the best in Manhattan. An inviting aspect was that each was within fifteen minutes of where we lived. However, both of us had bad vibes as soon as we walked into them.
I think that if you are not used to nursing homes the first impression is almost sure to be a shock. These two homes were clean, well-run, and equipped with numerous services for the patients. They still felt like warehouses. A lot of effort went into putting a happy face on sad and lonely lives. There were jarring elements, such as a loudspeaker system that would drive me crazy. The first place required documented proof that we had $100,000 in ready cash. The visits were worthwhile for us and on the whole not negative. But I hesitated before arranging visits to other places.
Maria would sometimes say: “Don’t put me in a nursing home.” I would reply: “I am not going to put you anywhere. Whatever is decided we will decide together.” I was not sure I would be able to keep that promise but I would do so if at all possible. Some time during that year I received a message via a friend from the director of a nursing home in Brentwood, Long Island: “If ever and whenever Maria needs a nursing home, she should know that she has a place here.” Nothing was more helpful to my sanity than receiving this message. I knew with Maria’s history that no place would be as compatible as Brentwood. Through the next year and a half, having this available option was a great relief.
On the legal front, I gathered that I needed an elder care lawyer, someone knowledgeable in the increasingly complex legal world of the aged, sick and dying. My total experience with lawyers was making out a will in the early 1990s. We went to a lawyer we knew nothing about except that he came to the aid of a group of Buddhist nuns we knew. How does one find the right lawyer? I looked up elder care lawyer on the Internet and I was faced with one thousand names in Manhattan alone. I figured my best approach was to call Maria’s cousin, Michael O’Brien, a lawyer on Long Island; it was the right move. Michael was particularly devoted to Maria and proved to be extraordinarily generous with his time and help during the subsequent three years. He said he knew just the right person that I needed.
I thought an hour’s consultation to answer my questions would be enough but I was naive about lawyer work. It required many meetings and several months before we left with a dozen legal documents (wills, living wills, power of attorney, health care proxies...). Maria came to the first few meetings and could express her views. She did not understand much of the proceedings, but neither did I. Michael insisted on coming with us to make sure we understood all the legal talk (he would not hear of taking money for all the time he put in).
I was trying to avoid having Medicaid take over my life (sixty percent of people in nursing homes are on Medicaid). Of course, at the current New York area average price of $10,000 per month, everybody except the very rich would eventually run out of money. One of the first things the lawyer recommended was that I should get maximum coverage of long term care insurance for myself (we each had modest policies). I was surprised I could get it at my age but if you look at nursing homes you can see that not much insurance money is being paid out for men. The coverage for me was to protect her in case I went into a nursing home first. That did not seem implausible to me. At that time, I thought it was still likely that she would outlive me.
In the Spring of 2002 I considered quitting my job. Maria did not want me to do so and neither did I. If I were to quit work, I would have more time to attend to her but I feared that the world would close in on us. Having a job gave me perspective and periodic relief. Of course, I could not have kept most jobs but being a university professor has its advantages. My office and classrooms are about a three minute walk. During the Spring of 2002 I could still leave her alone for two hours at a time. She came to some of the classes, not as a visiting teacher but as an interested student.
An incident in April pointed to the difficulties of her traveling alone. I had gone to Montauk on the train; she was to follow on the bus. When the bus came in and she was not on it, I panicked. I got no answer when I called New York. I pictured her lying unconscious in the apartment or wandering the streets of Manhattan. Without thinking to leave a note, I took the next bus back to New York. Her bus had been delayed and detoured. When she arrived and I was not there she immediately called the police to report a missing person. Two cops from East Hampton took the information and calmed her down somewhat. As soon as I entered the apartment, I had a call from the police. The message: Your wife is looking for you. The department at NYU was curious as to why the East Hampton police were looking for me.
The next week I got two cell phones so that nothing similar would happen again. However, she was intimidated by anything technological and never became adjusted to the cell phone. I would show her repeatedly that she could reach me and some of her friends by pushing one button on the speed dial. It was still too complicated. The part of the brain that handles pushing even one button was no longer working.
In July, 2002, I went to Norway for the ISREV conference. I would be gone for just a week and Maria’s longest and closest friend, Joanmarie Smith (a.k.a Dulcie) came to Montauk to stay the week with her. Dulcie and she had a history of fifty years; Dulcie could do things with her that I could not. Although Dulcie has lived in Ohio for more than twenty years, she and Maria remained as close as ever, talking on the phone almost daily. I had no misgivings leaving Maria with her dearest friend who could handle whatever came up. I called each day from Norway and found Maria to be lively and enthusiastic. The only peculiarity was that she kept referring to the nuns taking care of her and the two Dulcies who were there. That seemed like a minor slip of the tongue but it presaged another stage of development and confusion about me.
A Turn for the Worse (August, 2002 to Dec., 2002)
One of my most vivid memories is of a Sunday evening in late August, 2002. We had been watching the last round of the PGA tourney. Suddenly, with no provocation, Maria did not know who I was. I must have reacted strongly and tried to argue with her. That made things much worse. She said she wanted to leave and go home; I insisted she could not leave and that she was already home. At one point I called Dulcie in Ohio to see if she could talk her through this confusion. That helped a little but she still wanted to leave. When I would not let her, she asked me why I was keeping her a prisoner. It got so bad that she asked me if I was going to kill her. I don’t know how we got through the night. I was hopeful that by the next morning she would have forgotten the whole incident.
Although she was calm in the morning, she still did not know who I was. The mother of a close friend had died that weekend so we went to the wake on Staten Island. On the ferry boat, at dinner, and in the funeral home she still did not know who I was. I said to my friend: “Something seems to have snapped; I think I have lost her.” On the cab ride back home, she said it was amusing that all the people there thought I was Gabriel Moran. I suggested to her that perhaps they were right but that did nothing to convince her. The confusion continued until Wednesday when I went back to Staten Island for the funeral; she preferred to stay home. When the funeral took longer than I had anticipated, I called to let her know I would be late. She recognized my voice on the phone and said excitedly, “Where have you been for the last four days; I have been looking for you.” The recognition carried through when I arrived in person.
That was the first of numerous occasions when I had to cope with her confusion of who I was. When I had first heard that hallucination was part of the disease, I assumed that I could be her bridge to reality. Instead, I was what she hallucinated about. The psychiatrist said it was fairly common, a form of hallucination called “reduplication.” It is directed at the people who are closest. Only with me and Dulcie did this confusion seem to occur. Maria could recognize by name people she had not seen in twenty years. But sometimes in the blink of an eye she would not recognize me.
The fortunate thing was that she usually got along with all of us. After the first incident, I learned how to react and simply go with wherever she seemed to be. Neither reasoning nor facts made any penetration once she became convinced I was another person. The metaphysics of the brain constantly surprised me. We would seem to be having an ordinary conversation and she would suddenly say: “You never married did you?” I would calmly answer: “Yes, I did; I married you at the NYU Catholic Center.” She would just smile and listen, wondering perhaps at my confusion. She asked me one morning at breakfast where I had slept the night before. When I said in the bed next to her, she said: “There were three of us in the bed?” I assured there were just two of us.
At times, she almost seemed to be on the inside of a playful joke. She told the psychiatrist that she could not use the toilet when she wanted because we had a public bathroom that she shared with ten men. I hastened to tell the psychiatrist that was not the case. In subsequent visits he would ask her how many men she was now living with. With seeming playfulness, she would say four or three. I had several names; her favorite was one that went through a couple of evolutions before ending as “Bonaventura.” She always got along well with kindly Bonaventura. I sometimes had the feeling that she was seeing a younger version of me, someone she knew from thirty-five years ago. She told me one day about a nice young man who had taken her to the subway. When I told her that I was the one who had accompanied her, she said, “Oh, no; he was a young man.”