One day she said to me: “How do you know I have this disease?” I replied: “I was with you when we received the diagnosis. She said: “No you weren’t; I went with my mother.” One’s instinct might be to correct the person and say: “Don’t be foolish; your mother has been dead for ten years.” Such a response could cause the person great sorrow. It might be like hearing the news of her mother’s death for the first time. Like others confronted by a person living in another time zone, I learned never to force my world on hers, wherever in the past she was.
Only on a few occasions did her confusion become a situation difficult to manage in public. I finally recognized that travel often brought about the confusion, and the psychiatrist recommended that we not go out to Montauk. What she needed was stability and a consistent environment. Although our house in Montauk was a place where she was at home, the travel to there caused confusion.
Once on the bus she became extremely agitated because she had left her husband behind. Why had I rushed her on to the bus without waiting for him? I had to physically restrain her from getting off the bus in Southampton. She wanted to ask if anyone had seen her husband. A few minutes later when the bus ride continued she went to the toilet at the back of the bus; on returning to her seat she recognized the back of my head. Where had I been, she wanted to know. All my talking to her had brought no conviction at all; one glance at the back of my head did the trick.
A particularly difficult incident happened in a hotel in Philadelphia. Maria had been active in a professional organization called the Association of Professors and Researchers in Religious Education. The meeting that year being an easy ninety minute train ride from New York, I suggested we go. Maria was happy to do so. I knew that the women in the group would be glad to see her and would give her affirmation. They did so beyond my expectation. The difficult part came in trying to check into the hotel. After the pleasant train ride, she suddenly did not know who I was during the five minute cab ride to the hotel. She refused to take a room with anybody except her husband. I was lost as to what to do. She finally relented enough to wait in the room until her husband arrived. Then she recognized me when I was speaking at the front of the hall and she was in the audience.
One of my most painful memories relates to Thanksgiving that year. My two sisters brought a complete turkey dinner with them down to Montauk. We had a wonderful meal and lively conversation. But after the meal, Maria took my sister Dotty aside and said: “Can you get a message to my husband; I don’t think he loves me anymore and he seems to have abandoned me.” Such moments were paralyzing for me. They were indicative of great suffering on her part. I was in some sense the cause of the suffering but I was utterly helpless to relieve it. The only recourse was patient waiting. By the next day she might have forgotten that she said that. For me, life became unending surprises and constant learning of how to respond to whatever might suddenly be the reality.
The Year of Living Dangerously (Jan. 2003, to Dec., 2003)
When I reflect back on the year 2003 I am most struck by the many possibilities for disaster that we avoided. That result was due in part to my watching out for terrible things but often it was just a matter of luck that disaster did not strike. What I feared was that Maria would have a crippling accident. As any parent or a care giver of a disabled person knows, one has to balance control and freedom. I did not want to hover over her every move but that meant allowing that something untoward might happen. Many Alzheimer’s patients fall and break a bone, spend time in a hospital, and then are sent for rehab to whatever nursing home is available. The family’s choice is limited once this process has begun. I was determined not to follow that route.
We were still able to go out to a movie or a restaurant. In January we went to a theater up on Broadway. I had an attack of vertigo coming out of the theater. I have no idea how we got home because I could not keep the pavement from moving under my feet and I was violently sick to my stomach. I had to lean on her to help me get home. We must have been a pretty picture making our way down those ten blocks of Broadway. But similar to what happened in June that year when I got seasick coming back from Block Island, Maria’s instincts for taking care of me shifted back into operation.
I realize now that I was taking chances because I was lulled by what seemed to be normal behavior most of the time. The drugs she was taking were apparently successful in stabilizing the situation. That is, the decline was very gradual until the end of 2003. The danger in being so close to the situation is that one does not see – perhaps does not want to see – the small changes and the imperceptible descent that is occurring daily. Managing the drugs was a major task. From the start I had to watch over the ingestion of every pill she took, but that was just part of the daily routine.
A bigger problem was the apartment’s layout and location. We were living just off a street bustling with buses, cars and crowds. The building was constructed in the 1840s. Some aspects of the apartment were very appealing (the high ceilings, the thick walls). But the major problems were the lack of an elevator and the design of the bathroom. I was constantly warned about the stairs, that as her condition worsened she was liable to fall. Remarkably, she never had the least problem or even hesitation with the stairs right up to the end.
The bathroom was another story. Without going into all the details, suffice it to say that eventually life revolves around the bathroom. I asked the contractor for the building if he could build in guard rails. He thought it would require smashing down the wall into the next apartment. He was reluctant to do anything for which he might be legally responsible if a fall occurred. I eventually fashioned my own safety devices, learning as I went along.
At present, sixty percent of Alzheimer’s patients are being cared for at home. In most cases, a man is being cared for by his wife. I cannot imagine how they manage the physical part. Maria was barely a hundred pounds but I was often at my limit in trying to move her about. I also have increased respect for the twenty thousand home health care workers in New York City. They are not paid much over the minimum wage for work that is both physically demanding and mentally exhausting.
By 2003 it was apparent I could no longer leave her for the two hours I was in class. Kathy, the social worker, investigated the visiting nurse organizations in mid-town Manhattan. None could provide the flexibility I was looking for. Kathy put up a notice in St. Francis Xavier Church asking for help. That turned up a person who was perfect for what I needed. Delores was a retired woman who lived a few blocks away. She was the kind of help that no amount of money can buy. She was willing to come for whatever hours were needed. She and Maria immediately struck up a friendship and Maria felt completely at home with her. The two of them would sit quietly listening to music. Or they would go to Delores’ apartment to visit with the two new dogs she had. It was great companionship, neither more than that nor less.
I had to make sure that Delores did not leave before I got back, especially if it was in the evening. A couple of times when I was delayed a few minutes, Maria was getting ready to go out looking for me. Fortunately, she was stopped each time by women in the building who waited with her.
One of my most frightening moments occurred in the middle of a Monday afternoon. We had hired a cleaning woman to come in every other Monday. I thought it was safe to leave Maria because she had company. When I came back from school, Maria was not there. The cleaning woman was not at fault; I had not given her any warning or instructions. Given the amount and pace of traffic right outside the door, I was fearful of her being on the street.
I rushed up and down all the streets of the neighborhood but found no trace of her. I went over to the health center, thinking that was one place she might have headed for. Actually, that was where she was but I looked only in the waiting room and Alexandra had taken her inside. I went back to the apartment not knowing what to do next but she showed up just a few minutes after me. She was not upset in the least; she simply thought she was keeping an appointment. I was relieved that she could find her way over to the health center on Broadway and return to the apartment. I also felt guilty for neglecting to get an ID bracelet that many Alzheimer’s patients wear.
The most remarkable thing Maria did that year was to take four trips to Delaware, Ohio to visit with her friend, Dulcie. Both I and Dulcie were amazed at her willingness to make the trip the first time and then casually to repeat it. We used the same flights on the same airline for stability sake. I would bring her to the door of the plane at LaGuardia and Dulcie would meet her at the door in Columbus. The airline people on board never had any problem. And I discovered that the airlines are very ready to provide wheel chair assistance. Just once when they did not have enough wheel chairs at the door, she took off on her own and I found her making her way through the labyrinth of LaGuardia Airport.
Dulcie and she would not do much except sit and talk; they could do that endlessly. Maria was content to go each time and content to return. I realized on the last trip that I should have got on the plane with her and that I could not let her go alone again. But another trip was never possible. Making those trips must have included some shaky moments for her, especially the ninety minutes in the air. Nevertheless, I think the travel gave her a boost and released some of the spunky self-confidence she had possessed when healthy.
The other big help to me during that year was that my sister, Mary (a.k.a. Madonna) took the train down from New Hampshire five times to stay with Maria over a weekend; I went out to Montauk and slept. Mary had headed an order of sisters for many years and is comfortable among the sick and aged. She is an unusually patient, kind, and understanding person. Not surprisingly, she and Maria became good friends. In addition to Dulcie, my sister was the only person I was confident could handle the situation. To stay with Maria for a couple of days was to ask too much from most people. My sister managed effortlessly and Maria loved having her company.
There was more to do in New York City than in Delaware, Ohio, so the two of them did a little exploring. Maria insisted each time that they have a pedicure from the Korean salon next door; Maria had the idea that a pedicure had roots in the New Testament. I think a pedicure was about the last thing my sister would have got for herself but she always graciously accepted Maria’s gift. And occasionally Maria could still assert her native know how. Once they went downtown to visit the World Trade Center site, an area that was still a traffic muddle. When my sister asked a cop where they could get a cab, the cop said they would have to walk north for several blocks. But when my sister and the cop turned around, Maria was in the middle of the street with a cab she had just hailed.
In the Fall of 2003, Cindy Hosay, who had been helpful in getting me started, gave me the name of a music therapist on the upper East Side. The woman and her husband do wonderful work with people who are disabled, including people with dementia. Maria, as I noted earlier, was a musician, an expert pianist and singer. I had often read that music is one of the last things to go in people who are suffering from dementia. I thought that music therapy would be especially appropriate in Maria’s case; and it was.
I bought a keyboard so that she could play at home. In my zeal to get the best instrument, I bought a keyboard that was technologically intimidating for her. When she was later in the nursing home, I bought a much simpler version of the instrument which is where I should have started.
The therapist, Helene, was almost infinitely patient in trying to get her to perform some simple exercises. I used to sit watching for the hour and I learned lessons about teaching. Maria struggled with any kind of sequence or simple pattern. On the other hand, she could run through a tune from Oklahoma or a Latin hymn from her childhood. Helene was startled by Maria’s ability to play a whole song from memory. One of the marvelous things about this teacher was that she would simply take her lead from the student, a trait especially important when dealing with dementia. Maria’s ability to play from memory as she had all her life did not surprise me much. As with other things but especially with music, the loss of short-term memory can leave parts of long term-memory intact.
We have been learning from research that the plaque in the brain destroys specific functions and activities. People who have no short-term memory may appear stupid but they are not. They can still have a deep appreciation of the arts. The New York Times recently had a story in the Sunday Arts section on Alzheimer’s patients. It referred to a program at a local museum for these patients. The writer sounded completely mystified by the obvious capacity for art appreciation shown by the patients. It is not such a surprising phenomenon; another part of the brain continues to work well despite the loss of some functions.
During 2003, Kathy got me in touch with an adult day-care center in the West Village. She did some work there and assured me that it was a good place for Maria to go. Maria and I went together the first time and she agreed to go back each Wednesday. A car would pick her up at the door in the morning and return her in the afternoon; they would call ahead to check that I was at home. A varied program of music, art and physical therapy was provided by a staff that could not have been more cordial and hard working. They loved having Maria because, despite her illness, she was bright and relatively active. For example, she made friends immediately with a young man who had suffered a severe stroke and could not speak. I felt awkward in his presence and did not know how to communicate with him. I don’t think Maria found it to be a problem; she was her usual self and brought him out of himself.
I was hoping that she would like going to the Center. I thought it was good for her to get out of the apartment and engage in activities that I could not provide. And, frankly, it was a relief for me each Wednesday. She soon became resistant to going; she continued to attend but with reluctance. It had nothing to do with the treatment by the staff; to a person, each of them was wonderful with her. I guessed that the reluctance stemmed from the vision that she was getting of what lay ahead for her. Many of the people who came to the center were at an advanced stage of dementia. Maria was not there yet. But I think that toward the end of 2003 she had begun to sense that the future was closing in on her.
The Year of Living Inside (Jan., 2004 to Dec., 2004)
Although the drugs had seemed to work fairly well for almost two years, they suddenly seemed to be ineffective toward the end of 2003. I realize there may have been other factors at work that brought about the change. In any case, even I noticed a sharp change for the worse in Maria’s behavior. Both on the physical and the mental sides there were serious changes that made living in the apartment dangerous. I had assumed that my next step was going to be home nursing help around the clock. But I started to wonder if even that would be adequate for the developing situation.
I arranged for a visit during the first week in January to the nursing home in Brentwood which is called Maria Regina Residence. We went out on the train and were given a tour of the place. Maria had lived on the property for two years when she was a novice; she had also taught there and visited many times. Her mother had even gone to school there almost a century earlier. It was a place Maria was very comfortable with, and many people in the facility, both staff and residents, knew Maria. We were therefore received with warm friendliness. Eating dinner from a good buffet in a pleasant dining room was an attractive feature of what we saw. I was aware that there were sections in the building which we did not see where the residents were at a more advanced stage of disease. But the attitude in the place was openness, efficiency, and compassion. The best thing was that we both had the same impression.
At breakfast the next morning, Maria’s first statement was: “It is not a question of if but when.” I was surprised at her succinct statement of where we were. Nothing she could have said would have provided greater relief for me. She was taking away the burden I would have felt if I had to try persuading her that going there was in her best interest. We discussed our feeling about the place which was very different from our reaction to the other nursing homes we had visited. We did not decide about time; I hoped to maintain my promise to do whatever was necessary when the time arose.
The director of the nursing home called me the next day. I think she had seen something that I could not see at that time. She asked if Maria was planning to come at the beginning of the next month. I said, “Oh, no. I was thinking about the future, maybe six months or a year from now.” In the course of that month, however, I came to grasp that the situation was fast becoming intolerable. I don’t know if the change for the worse was precipitated by the prospect of going to the nursing home. Maria did tell my sister – but not me – that she knew she should be in a nursing home because the burden was too great on me.
An incident at the end of the month sealed my decision to move more quickly than I had thought just weeks previously. We went out for a walk in the neighborhood and everything seemed peaceful and normal. But on the way back she suddenly darted into the building next door. When I tried to get her out she started screaming that I was attacking her. Fortunately, the super and the janitor arrived; and they immediately recognized the situation. Maria trusted the janitor who offered to take her home. She kept screaming to keep me away from her.
When she had been taken back to the apartment, I sat outside on the steps waiting for her to cool down. But she came out and walked up the stairs without saying anything to me. I figured she was safe up there and would eventually have to come down. But she knocked on a door and the woman took her in. Not knowing what to do, the woman called the police. The ID that Maria was carrying gave Montauk as her home address.
When I saw two New York City cops go by me, I suspected what they were there for. When one of them came out of the woman’s apartment on the third floor, I told him that Maria lived on the next floor down. The policemen could not have been kinder both to her and to me. They spent about twenty minutes coaxing her back to the apartment, getting her a glass of water, and making sure she was safe and calm.
After I sat outside for an hour or more, I went into the apartment and she did not give the impression that anything unusual had happened. The incident is the kind of thing which care givers regularly confront. Looking back on the experience, I cannot find anything I should have done differently. I was just lucky that it did not turn out worse. I could have been taken in by the police for questioning; that would not have been unreasonable. She could have suffered serious injury. I concluded that the “when” had now arrived.
I arranged for an entry date at the nursing home. Michael O’Brien and his brother Kevin insisted on driving us out and they stayed until we were settled. On that day and in the year that followed she was given the best care possible. I cannot express how grateful I am for how she was treated. The staff listened to my suggestions, such as giving her the pills with yogurt rather than apple sauce, or giving her regular massages of her neck and back. I was allowed to brighten her room with some of her favorite art pieces, to bring a CD player, and to hook up a telephone recording device. Many people phoned her (Dulcie almost every day). Surprisingly, she was able to function on the phone even when she was barely able to communicate in person. On the last day of her life, as her consciousness ebbed, I was convinced she recognized Rosemary’s voice when she called from Melbourne.
For a good while Maria managed to remember most of the faces and names of people who visited. She had a steady stream of visitors; Michael O’Brien came faithfully every week. Good friends such as Kathy Sperduto and Joan Grace, neither of whom was in the best of health, came when they could. Her dear cousin, Jim Tunny and his wife Betty Ann, were especially solicitous. Friends of mine, including Kieran Scott, Anthony Fasano and John Grieco, were supportive and on the scene. But on October 1, 2004, John Grieco, a friend of forty years dropped dead. He had been a constant support for me and a great friend of Maria’s. I was devastated by the loss.
The one drawback with the nursing home was that Brentwood is about in the middle of the traveling distance between Montauk and New York. I had to allow about four hours round trip either driving from Montauk or taking the train from New York. However, in some ways I now had more time even if I spent eight or ten hours in visiting her. I considered getting an apartment in Brentwood but I decided that the train from New York would be less disruptive of the job I was trying to keep.
I had some regrets later that I did not move to Brentwood. When she could not feed herself, I would have liked to have been there every day instead of the every other day I tried to maintain. Helping a person to eat takes time and attentiveness. When she was in the hospital, one of the staff asked me how I got her to eat whereas they could not. I said: “Well, the first thing is it takes half an hour.” Hospitals, rehab centers and nursing homes do not have the personnel to spend that much time with individual patients.
Until July, Maria could manage her own eating and had a healthy appetite. I had looked forward to the Spring and Summer when she could get out on the extensive grounds, even though by the late Spring she was confined to a wheel chair. One pleasant aspect of each day was going down to the chapel at 11:20 AM for the Eucharist and then going to the dining room for a leisurely dinner. I went more often to church than I had in years. It was a restful and comforting experience. With many people in wheel chairs or struggling with various ailments, the liturgical ritual of the Catholic Mass provided a community bond.
Most of the residents were nuns; the place had been built by the Sisters of Saint Joseph for their own use in the 1960s. With only a few modifications, they were able to open it to the general public. I could understand if some people would find the atmosphere of Catholic piety too confining But Maria adjusted easily to it. There was no pressure on anyone to conform to a religious code or a set of practices. I felt that as Maria withdrew from this world, she was often praying and in touch with another dimension of reality.
The physical therapists were wonderful with her, as were the woman who did her hair and the woman who did her nails. Such small touches brightened the environment. The woman who directed the second floor’s operation was a model of efficiency and kindness. I got to know the place pretty well from sitting for many hours watching the nurses, the aides and the people who cleaned. Most of us most of the time can shut out of awareness the inner workings of nursing homes but the work there requires patience, skill and dedication. The pay will never be consonant with the importance of the work for an increasing part of the population.