boy playing flute
Music Is Hope

Farewell to St. Eligius

C. Gourgey Ph.D.

(Note: Names of institutions and individuals have all been changed.)

On my very first day, as I followed the chaplain on his rounds, I was sure I had come to the right place. I had been looking for a place to begin a program in pastoral music therapy, even if I had to do it as a volunteer. St. Eligius Nursing Home seemed perfect.

The chaplain introduced me to several of the residents. The way he cared for them inspired me. He seemed drawn to the ones who had the most difficulty communicating. One man who could not speak pointed to letters on a board to spell out his messages. Another communicated through movements of his eyes.

This was truly a ministry, and I wanted to use music to support it. I felt encouraged that the home employed someone like the chaplain, who was there to care for people’s spiritual needs while the nursing staff addressed their physical concerns.

At St. Eligius I met many people, residents and also members of their families, whom I came to respect and even love. Working with them taught me a lot about what pastoral music therapy should be and what it needs to do. Above all, a pastoral music therapist must be willing to serve. This service means fulfilling the need at hand, whatever it may be, within the limits of one’s abilities and guided by the highest ethical considerations.

I found the use of music immensely helpful in decreasing people’s feelings of isolation. At St. Eligius there are many residents with severe mental retardation. I’ve written before about Ruben, the young man who loves soul music. Lying in his bed he seems dead to the world, but springs to life when he hears a favorite song, and hundreds of songs from the Motown era could qualify for that designation. And there is also Mark, who loves absolutely nothing but Elvis. Mark can be extremely demanding. He can be moody and disagreeable and yell and scream if you fail to understand precisely what he wants at any given moment. But an Elvis song, doesn’t matter which one, transforms him completely. He smiles, sings along, and waves his arms to the rhythm. He is back in his world.

This is the wonderful thing that music does. It restores a person’s world. It brings isolated people home again, to a familiar and happy place, where they feel comforted and even loved. Beatrice, only in her forties but paralyzed after suffering a nasty fall, is sharp-minded and does her best to cope with her surroundings. What sustains her most is her faith. She asks me only for “Christian music,” and when I sing Gospel songs, in English or in her native French, she sings along with renewed spirits. Whenever the stresses of living in the nursing home would wear her down, a song of faith always brought her back to herself and to the inner resources that sustain her.

I have had many such encounters at St. Eligius and have told about some of them in my earlier article. Isolation takes many forms, and affects both the resident and the caregiver. One man I used to visit is a Holocaust survivor who can hardly speak now, and who is prone to depression. I was able to connect to him through Hebrew and Yiddish songs he knew from long ago. His wife Joanne is very devoted to him and visits every single day. I did my best to support her as well.

Sometimes service takes unexpected forms. One day right outside the Therapeutic Recreation office I saw a very young African-American woman, still in her twenties, in a motorized wheelchair, talking to the recreation director. Apparently she needed a math tutor and they were having trouble finding one. After they finished their conversation, I asked the recreation director what it was all about.

I learned that the young woman, Hallie, had a degenerative neuromuscular disease of unknown origin, which is why she was in the home. Nevertheless she was determined to make something of herself, and wanted to get a college education. She had her high school G.E.D. and wanted help to prepare her to take the Scholastic Aptitude Test, or college entrance exam. The recreation director tried recruiting volunteers to help her, but none of them worked out. Either they felt uncomfortable working in a nursing home, made unreasonable demands such as requiring Hallie to be out of bed and in the lounge during each lesson, or were just not good at teaching. While math is not my profession I had always been very good at it, so I volunteered to become Hallie’s new math tutor.

I worked with Hallie every week at her bedside. She had a laptop computer on her tray table, with adaptive software that enabled her to use it. I soon discovered that her math level was not yet up to the SAT and she had much catching up to do. So I tailored a program of math instruction especially for her, beginning at her current level and designed eventually to bring her up to the SAT.

Hallie really applied herself. She did her homework every week, carefully completing each assignment, and soon she began to make rapid progress. While the staff tended to blame the previous failures on Hallie, they could no longer do so. Hallie’s new success with her lessons made it clear that the earlier difficulties were not due to any defect in her as a student, but rather to the previous volunteer tutors’ lack of training. Hallie showed everyone that with the right kind of instruction, meaning having someone who took the time to understand her needs and carefully plan a program to meet them, she could make tremendous headway.

Hallie and I formed a therapeutic student-teacher bond. We discussed her plans for her future and her faith as well, which was a very important resource for her. Having this kind of support, as well as a path to further education, became for Hallie a source of hope. She looked forward to succeeding in these lessons, getting accepted to college, and making something of her life.

St. Eligius Family Council

I have always looked for ways to support the residents and their families. So when the next family council appeared on the calendar, I asked permission to attend. At first the administration did not want to give it to me, since I was not a family member or “designated representative” of any resident. But the administration is not supposed to have any say in who gets to attend a family council meeting. By law, family councils are for the families and friends of any resident at the home. The family members are the ones designated with the authority to run the council and to determine who comes to meetings. Family members have the right to invite anyone they wish.

Joanne invited me to the meeting, feeling that my presence there would reassure her. I accepted but told her that she must first notify the administration so that there would not be any misunderstanding. Joanne left word with the Director of Social Work, who runs the meetings, that I would be coming as her guest. He told her there would be no problem. (It should be noted that this arrangement is highly unusual. Normally family members do not need to notify any member of the administration of guests they intend to bring to a family council meeting. Friends are invited at the discretion of the family members, not the administration.)

I am a veteran of many family councils, having led one myself at another nursing home. Right away I noticed many things out of the ordinary at this one. First, the administration served us a sumptuous buffet dinner. It was quite elaborate, almost like what you’d expect at a wedding. And quite delicious too. The servers attended to us with courtesy and efficiency.

We were all seated at individual tables of four each, so that we could communicate effectively only with our three table mates. And being preoccupied with eating dinner, we had little opportunity or encouragement to discuss substantive issues. After a brief introduction the head Administrator took the floor. He gave us a short presentation about the growing financial needs of the institution in light of the tough economy and budget cuts from the state, and encouraged us to write our representatives insisting that they restore the money from those cuts. We were given a web site address through which we could find the names of people to contact. That was it. There were no questions from the family members. I was especially careful not to say anything.

The Administrator warned us that unless we could get some of those funds restored, some jobs might have to be cut. I joked to my tablemates that at least I had job security, since the funding problems would have no effect on me as a volunteer.

The irony of that remark hit me only later when, a few days after the family council meeting, I received an unexpected phone call from the chaplain. He informed me that as of that moment I was no longer a volunteer at St. Eligius. My ID had been deactivated, and I was to come back under strict supervision just to retrieve my things. I would not even be permitted to say good-bye to all the residents with whom I had contact. Clearly this was not the chaplain’s decision. He was simply chosen to be the bearer of bad news.

I had underestimated the degree of control the administration exercised over the family council. They considered the presence of even a volunteer to be a threat, even though I said no word during the meeting. I was not given a hearing or a chance to explain that I thought I had been invited by a family member with the administration’s approval. I was summarily dismissed.

When I arrived at the home a few days later to clear out my office space, the chaplain met me at the entrance and escorted me upstairs. I had to remain under his watch and could not visit anyone. But Hallie just happened to come to the door while I was in the office, and the chaplain told me I could say good-bye to her while he turned his back. I did not want her to feel I was abandoning her as so many had done before. I broke the news to her that I would not be seeing her anymore, and expressed my deepest regret. Hallie said little, but clearly looked as if she was about to cry.

A few weeks after I left I received an email message from Hallie. She told me that they tried to get a high school student to tutor her, but that didn’t last and now she has no one.

Beatrice was one of the few residents with a telephone, so I called her to say good-bye as well. She said only, “It’s going to be an effort in my life now.” I found out later that she also cried the first day I was not there for our music and she knew I would not return.

I will greatly miss all the extraordinary people I’ve met at the home, residents and family members, who have become very dear to me. The pain that this situation has caused them will always affect me too.

The last news I got from St. Eligius was that they let the chaplain go. A few months previously they cut his hours back to half time, even though he was the home’s only spiritual caregiver. But now they felt they could no longer afford even a part-time chaplain. The administration sets the priorities. The disdain they showed for the chaplain as caregiver of the soul, as well as for music therapy and educational instruction they were receiving for free, is but one sign that too many nursing homes in this country have become warehouses for bodies, ignoring the spirit.

What You Can Do

This section of the article is by far the most important. The implications of what happened at St. Eligius go far beyond my personal experience. The nursing home system in this country is broken. In far too many cases nursing home administrations are not as responsive as they should be to the concerns and needs of residents and family members. Too often those who try to improve living conditions for the residents, including members of the residents’ families, are treated like adversaries. But there is something you can do, especially if you have a friend or family member residing in a nursing home.

You can support your family council. Join it. Become an active member. Attend the meetings. Insist that members of the administration meet with you on a regular basis, and not as your leaders - the family council belongs to you - but as your dialogue partners. You are, after all, on the same side, or at least you should be. Your common concern is the welfare of the people who live in the nursing home.

The “family council” at St. Eligius is one more glaring symptom of the broken system. So many things about it are simply not right:

  1. It is a “family council” in name only. It is led not by family members but by members of the administration.

  2. It meets only quarterly, not monthly as most family councils do. While it is true that some authentic family councils do meet quarterly because of the needs of their members, that decision is at the members’ discretion. Monthly meetings are most effective whenever possible. When an administration limits family council meetings, the purpose is to maintain control over the council.

  3. It is designed to exercise tight control over the members in several other ways. A fancy dinner is served to keep people busy eating and socializing instead of deliberating. People are seated at small tables so that they cannot interact as a large, unified group. The agenda is set by the administration, not by the families.

This arrangement enables St. Eligius to claim that it has a family council, though one in name only. It is a disservice to the family members. No wonder the administration did not like a volunteer attending and observing this. Clearly they had something to be embarrassed about, and something to hide.

Because of this tightly controlled council structure, family members at St. Eligius are not getting some very important information. Joanne had many questions about her husband’s treatment that she needed to ask. She did not know she had the right to attend the quarterly care-plan meetings for her husband that the nursing home staff is required to hold. In fact, she did not even know that such meetings existed. If St. Eligius had a true family council, this is one of the first aspects of nursing home life about which she would have been educated. But because family members are often left out of the loop, I have observed some residents not getting the services that they need. Unfortunately I will no longer be there to advocate for them, nor will the nursing home allow anyone else to perform a similar function.

Family members and their loved ones living in the home deserve better than this. If you are involved with a nursing home, a true family council is your moral and legal right. If your nursing home has a family council, it needs your help. Simply attending the meetings is a tremendous help. I have seen it in action. For three years I led a family council at a different nursing home. As long as we had the support of the family members, we had power. The administration saw people showing up in numbers, and they paid attention. We accomplished a lot of constructive change, from making sure staff members visibly displayed their ID badges to getting commitments from the administration to work on improving staff attitudes. Family members have tremendous power they do not even realize, but they must support each other to make it effective.

If your time really is limited, is there still something you can do? Yes, there is. Many caregivers lead very busy lives, torn between their own work and family responsibilities and caring for their loved one in the nursing home. Some family councils have comment boxes and some have listservs, through which one can participate even while at home. Even if you cannot attend each meeting, do try to tell at least one other caregiver about the family council whenever you visit the home. One family council of which I am a member encourages people to attend at least one meeting a year. Even that will give the council needed support in working with the administration to improve conditions for those we love.

If your nursing home does not have a family council, you can start one. Please visit this website to find helpful information about family councils.

Times are hard and funds are scarce, but there is nothing our health care system needs more of now than compassion, and compassion does not cost money. It requires only a commitment of the heart, and of one’s energies to match. No matter the state of the economy, we can do this. I would like to see the word “love” introduced into the vocabulary of health care, and considered as legitimate as budgets and balance sheets. Those who think this too much to ask or hopelessly starry-eyed will feel differently once they or people close to them become clients of this system. And that will happen, as surely as time will pass.

April 2010