Love - and Its Absence - in the Caregiving Relationship

Some Experiences in Nursing Homes
 

by C. Gourgey Ph.D., MT-BC, LCAT
 

(Reprinted from Journal of Religion, Disability and Health, Vol. 3, No. 4, 1999)

 

Abstract
 

A serious problem exists in long-term health care facilities such as hospitals and nursing homes. Most staff members responsible for patient care do their jobs competently. Nevertheless, the cold, remote attitude often taken for granted in these institutions fosters a sense of isolation and alienation in the residents, undermining their spirit and leading to "institutional depression." Care providers need to recognize this problem and meet it by bringing to the work a conscious sense of warmth and attentiveness to the residents. It is even possible - in fact, necessary - for care providers to love those under their care without losing their professionalism.
 

I have been visiting Mary [note: all names are fictitious] ever since I met her in the hospital where I work. Mary was waiting to be transferred to a nursing home. She learned to survive in the hospital by developing a combative self-assertiveness. If things weren't right, if the nurses woke her up too early in the morning, if food service brought her a meal she could not digest, if they didn't bring her hot water for her tea bag, she would let them know. Sixty-seven years old and full of energy, she made sure the staff knew of her displeasure, and sometimes it even worked.
 

Still, there was a price. Mary developed a bad reputation. She tells me people call her fresh. "Better fresh than stale," she answers back. Mary's main complaint is that people always promise things, a little amenity or perhaps a brief visit, but then they don't follow through.
 

Now Mary lives in a nursing home, where I still see her as her music therapist. My first visit after her transfer from the hospital surprised her. "I was sure you'd forget," she said. "I'm so happy to see you."
 

Some staff members consider Mary a nuisance and a troublemaker, but I have never had a rough moment with her. Mary wants people to treat her kindly - and who doesn't? Those who take the trouble usually find Mary quite appealing. She loves to sing, and when I pull out my guitar she begins a song without giving me time to play a note. It is so easy to make friends with Mary, but she tells me she is isolated, lonely, and unhappy. The people who touch her life every day do not respond to her.
 

I am sitting next to Mary, listening to her attentively. At least I am trying to listen - a noise coming from outside the room breaks my concentration, over and over again. A few doors down the hall, another resident is screaming.
 

"Nurse! Nurse!"
 

Mary talks to me while I wait for a nurse to attend to this woman.
 

"Nurse! Nurse!"
 

Mary tells me about her first week in this nursing home. I can't hear a word she is saying. I can't stop listening to those screams, which Mary seems not to notice.
 

"Nurse! Right away, please!"
 

Having worked in other nursing homes, my impulse is to react as a staff member. But I don't work at this one; I have no authority here. I try to block the woman's cries out of my mind. I close Mary's door.
 

I was sure - no, I was hoping - that someone would soon attend to the woman or that she would just get tired and stop. But she doesn't. Through the closed door I can hear her shouting as loud as ever. I can no longer listen to Mary. I excuse myself and leave the room to investigate.
 

The cries stop for a moment. I am out in the hallway, wondering which way to turn. Then I hear them again, to my left. I follow the sound to a room that seems tucked away in a corner. There I find a woman sitting on the toilet, shouting for the nurse.
 

In the awkward position of speaking to her while turning my eyes away, I ask her what her problem is. She tells me her bowels won't move and she needs Mylanta. She says the nurse always brings it to her. I ask her if she wouldn't just feel more comfortable waiting until later. No, she says, she needs it right now. I go to find the nurse.
 

Out in the hallway I find one of the nurses and I tell her the resident in room 6 is asking for Mylanta, and would that be possible for her? With a frown the nurse tells me that this woman always wants Mylanta, and besides, under no circumstances am I to enter the room of another resident. I apologize and go back to Mary's room. I walk back slowly, because behind me I can hear the nurse go into room 6, and I want to make sure. I no longer hear any screaming from room 6. It was worth it.
 

If I find it slightly intimidating to ask the nurse a question, uncertain whether I will receive an answer, a reprimand, or just plain silence, I wonder what it must be like for the people who live here, who depend on staff for every basic need. I wonder if they feel, as I often do, the hesitation, the reluctance to disturb people who have other things on their mind and who seem not even willing to make eye contact, let alone deal with someone's personal needs. Work in a nursing home can be very tedious. There are always many little tasks to perform: handling admissions, scheduling therapy, dispensing medication, taking temperatures, bathing the residents, changing dressings, helping a resident to the toilet or bringing a bedpan, serving meals, making beds, monitoring supplies, attending meetings, fielding phone calls, talking to physicians, logging all of this into residents' charts, and executing all the rest of the paperwork that sometimes seems endless. Working in a nursing home has its own particular stresses and annoyances.
 

These stresses, however, only partially explain what has become a serious problem in health care. I have worked for many years in hospitals, nursing homes, and hospices. In some of these places I have witnessed occasional instances of patient abuse, but thankfully these were rare. What is, however, all too common is a certain atmosphere of coldness, of emotional neglect, which results from the inability or unwillingness of staff to interact with patients on the level of a shared humanity. In my experience the one exception has been hospice, which tries to provide an alternative to traditional hospital-based care for the terminally ill.
 

I would like to make clear at the outset that my purpose is not to criticize any particular group of professionals within the health care community. I deeply respect and admire those who feel called to do this work. Most are good people doing their jobs with dedication and skill, and many go out of their way to make their patients feel comfortable and comforted. I could not do my own job without their support. What I do wish to criticize is something that seems part of the culture of health care itself, an attitude that care providers sometimes value as "detachment" but that patients often experience as callousness. A good person doing a good job may not be enough, if a connection to the patient is lacking. Even when staff members do their jobs well patients may suffer, because of our narrow concept of what a "good job" is.
 

Some years ago when I worked the reception desk of a major hospital in the city I got an unusual call on the patient information line. A distraught woman called to tell me that her husband needed a bedpan and could not get a nurse's attention for over an hour. I did something I was not authorized to do: I gave her the extension of the nursing station and told her to have her husband dial it from his room.
 

I have no idea why the nurses were late with the bedpan. Perhaps they were short-staffed that day. Perhaps they were preoccupied with more important things. Perhaps they were simply inattentive. Whatever the reason, such occurrences contribute to a feeling in hospitals that is isolating and depressing. It also takes more than bringing a bedpan to alleviate this depression. Even when the bedpan is there when needed, when the meals arrive on time, when medicine is dispensed on schedule, a crucial element is often still missing in the interaction between patients and staff.
 

The needs of people living in health care institutions are more than physical. People living in hospitals and nursing homes live separated from everything that once gave them comfort: family, friends, familiar surroundings, little conveniences that make life comfortable if not fun. Beyond this separation is the loss of freedom. These people are not free to come and go as they please. They wake up when they are told to wake up, they eat when the meal is served, they cannot leave the floor, and may even have to ask and wait for help when they must relieve themselves. They walk around all day (if they can walk) in flimsy gowns and slippers that do little justice to the sleepwear they left at home, let alone the suit or dress they felt proud to wear when their lives were normal. They depend more on the attention of others than at any time since infancy, and this time they depend on strangers. The entire experience is extremely infantilizing.
 

Someone new appeared at the music therapy group I used to lead in a nursing home. Claire had been in the home just a week, and was speaking of how she wanted to kill herself. Claire suffered many losses, including the recent death of her son. She had no one, except a few visitors from her parish who came once or twice and soon lost interest. Claire's mood did not improve over the weeks I knew her. I made a point of never failing to greet her before starting the group, of telling her how happy I was to see her and knowing that I meant it. She would always tell me she felt depressed. As the weeks went by she still told me she felt depressed, but sometimes she would smile in spite of herself.
 

Claire was very frail and her health deteriorated rapidly. I arrived on her floor one day to find a nurse speaking to her in a loud, harsh voice. "Clean yourself up! No, you can't go in there!" "There" was the dining room where I was about to conduct my group. Since music is the only thing I have ever seen lift Claire's spirits, I was not about to see her barred from the dining room. I asked for an explanation.
 

Claire suffered from a progressive dysphagia, an inability to swallow normally. She had been regurgitating her food all day, and I had arrived just after she spat up a glass of orange juice she was trying to drink. With weak trembling hands she tried to clean the wet front of her gown. She cowered while the nurse barked at her, moving her hands uselessly to take some action she could not plan. I asked the nurse why Claire could not come to the dining room. She replied that in her present condition Claire would upset the other residents. I explained that this was a music therapy group, and Claire needed to be there. I got some paper towels and helped Claire clean herself. She told me I was the only friend she had.
 

Something is wrong when a music therapist who comes just once a week is a resident's only friend. I often find residents experiencing depression and isolation in spite of frequent daily contact with staff members. One resident, a frail elderly woman with tears in her eyes, snatches my arm to show me how the nurses grab her gruffly when they want to take her somewhere. I would guess those nurses have little idea of how uplifting, or how devastating, the effect of a human touch can be. Another woman cannot use words to tell me how she feels. She suffers from advanced dementia, and like many such people who can still walk, she wanders a lot. Once she tried to get on an elevator that stopped at her floor, a clear violation of the rules. Still, she insisted. Two nurses came toward her and ordered her to leave the elevator. This upset the woman and made her defiant, determined to stay put. She started screaming at them. I held out my hand to her and very gently asked her to take it, hoping to lead her calmly out of the elevator. She extended her hand towards mine, and our fingers almost touched. Just before the moment of contact the nurses entered the elevator and took her out by force, and she started screaming and cursing at them all over again.
 

The loss of personal freedom, the loss of meaningful contact with others, the sense of alienation and isolation that people commonly experience when living in a long-term-care facility can produce anger, frustration, and defiance, but most often they result in depression. This depression is not a reaction to illness or disability; it is not what psychologists would call a "mood disorder due to a general medical condition." This depression is a reaction to the environment in which the person lives. The condition is so common that I often refer to it as "institutional depression."
 

This condition is typified by a man who used to attend my music therapy group in a long-term health care facility. It was a group for patients in physical rehabilitation from conditions that left them unable to walk. Most of these patients eventually got better and went home, although the process could take many months. When, however, it seemed as if a patient would not improve and was no longer a candidate for rehabilitation, he or she would be transferred to another floor.
 

Carl eventually met this fate. When I first met him he was withdrawn, but as the weeks went by I saw him come out of himself. He had a powerful voice, and began to let go of himself in song. Sometimes he would even volunteer to sing a song for the group. He was a faithful churchgoer, and knew some unusual and haunting spirituals. When he sang "When you confess to the Lord, Call Him up! Call him up!" with those last three words climbing the scale I felt my soul joining his in a cry of faith to God. His songs came from a place much deeper even than his deep bass voice.
 

Carl did not make progress in his rehabilitation. He never learned to walk on his own. And so he was taken off the floor, transferred to an older wing of the facility, for lower-functioning patients with whom he could not socialize. He no longer enjoyed belonging to a cohesive group, with people who knew him and spoke to him and called him by his name. I went to visit him in his new surroundings. I saw the patients getting little attention from the caretaking staff beyond looking after their most primitive physical needs. Perhaps they thought these patients functioned so poorly that there was no point in trying to relate to them. Even the lights on that floor were much dimmer than on the floor where Carl used to live. I would bring my guitar to Carl's room and would sing with him for a while. At first he would sing with me, the spirituals that he loved, but over time I saw him become more withdrawn. His depression was palpable. He receded into himself, and would finally no longer sing. Over time he became indistinguishable from the other patients on the floor, who looked like human furniture, taking up space with no meaningful movement.
 

Not every patient changes so radically. Many are already predisposed to depression, and the emotionally detached environment in which they now find themselves just brings it more to the surface. The collective depression on a floor is something I can almost feel with my hands; it is a force I am fighting as a music therapist and as a spiritual caregiver, and it fights me back hard. I have had to evolve ways of overcoming this force. Some of these ways are based on my training in both music therapy and psychotherapy, and some come simply from placing a value on warm human contact.
 

Patients with dementia can be a special challenge to caregivers. It is difficult to relate to someone who does not respond in conventionally acceptable ways. I often observe staff members react to dementia patients in ways that are clearly inappropriate, without seeming to realize it. Mary Beth, a woman with advanced dementia, often talks to herself incoherently right in the middle of the group. Other residents tell her to shut up, with no effect whatsoever. Staff members often try to reach her by raising their voices: "Mary Beth! Mary Beth! Listen Mary Beth! You must be quiet Mary Beth!" Mary Beth typically responds by shouting and cursing at her perceived assailants. As a result staff members often speak of her as one of their most difficult charges. I don't think most of them realize they might be overstimulating her. I learned the correct approach through trial and error. When I spoke to Mary Beth too quickly, she would shout at me too. I discovered that if I come up to her quietly and gently extend my hand, telling her I am happy to see her, she will take my hand and kiss it. "You're a nice man," she tells me. Then she will join the group and clap her hands to the music. This exemplifies the "first principle" of music therapy: to make meaningful contact, find the person's normal energy level and then try to match it.
 

It is painful to watch trained staff members who do not understand this. A woman in one of my groups, Bertha, has a very short fuse. She can become belligerent when frustrated, telling staff members they are no good and never want to help, or ordering them to shut up and leave her alone. I once observed a social worker answering Bertha in kind. She spoke as sharply to Bertha as Bertha did to her. The situation quickly escalated. Bertha only became more excited and belligerent, and made even more noise. I was concerned at how upset Bertha was getting, and I spoke to the social worker. She told me her strategy was to show Bertha that she can't get away with being nasty, by making her experience for herself how she comes across to others. But Bertha is not normally this way; it is how she reacts when something upsets her. Instead of bringing Bertha back to her normal state, the social worker was reinforcing an abnormal one. She was not communicating with Bertha, and did not seem to realize how much she was agitating her.
 

How different it is to find someone who knows the right approach. On a floor of dementia patients one woman stood out. While asleep she was certainly no problem, but when awake she would yell and scream from her bed, her voice dominating the hallway. This was my first day on the job. I took my guitar and entered her room, hoping to find a song that would calm her. Inside the room I found the floor's nurse manager. She told me this woman, whose name was Minnie, likes to be called "Mimi," and then started singing softly to her, "Mi-mi, Mi-mi," in a descending melodic figure that sounded like a child's nursery song. Minnie became quiet and went to sleep. The nurse manager recognized that while Minnie seemed loud and aggressive, inside herself she was like a frightened child, and hearing a gentle voice singing soothed her. The nurse's voice held her like a mother's arms. I too experienced a strange feeling of peace, something breaking through the cold and depressive atmosphere I usually encounter in such places.
 

Fern is another resident suffering from extreme dementia. Fern is completely delusional. She lives in a time and place known only to herself. She has ground rules for contact, which only she knows. If you violate those rules - which is easy, since they seem to keep changing - she will scream at you and abuse you. Many times she has called me an idiot, a fool, the worst person in the world, the devil incarnate. Staff members usually ignore her, while the other residents tell her to shut up - neither approach has the slightest effect. Needless to say, Fern can be very disruptive in a music therapy group.
 

It did not take long to discover that trying to reassure Fern was futile. I decided to enter her world, to interact with her from within her delusion. I asked her what the trouble was. She was trying to get to Bell Harbor, and didn't know if she would make it. She was very much afraid. Was she headed in the right direction? How many more stops were there? I assured her she was on the right path and would reach her stop soon. It was, she informed me, urgent that she get to Bell Harbor. Would I take her there? I moved her wheelchair one table over. This reassured her. I told her once again she was on the right path and would reach her destination. "Thank you for taking the trouble to listen to me," she responded, and the incident was over.
 

Beyond the simple failures to communicate that are routine in long-term-care institutions, there is a subtle cruelty that sometimes assumes the guise of being helpful.
 

As soon as I arrived on the floor to do my music therapy group, I heard a woman screaming. I thought I recognized the voice. It was Maureen, a small, quiet, mild-mannered woman, certainly no troublemaker. Two nurses' aides were ambulating her, assisting with her walking exercises. They were trying to get her to walk without her walker. Even though they supported her on both sides, Maureen could not stay on her feet. Her legs swayed beneath her as the aides carried her by her elbows. She yelled for them to stop. One of them gave her back her walker, but still she teetered and could hardly resist falling. Finally the aides deposited her in a chair in the dining room and disappeared.
 

I stayed with Maureen for half an hour, delaying my group. She was in a panic, hyperventilating, afraid she was going to faint, a fear I shared with her. I held her and spoke to her softly until her breathing slowed. I was also very grateful to receive the support of the nursing supervisor after I reported the incident.
 

What strikes me most about this situation is not just the aides' lack of sensitivity to Maureen's feelings. It was their dumping her in the dining room without even bothering to check on her condition. Either they did not know she was upset - an unbelievable absence of awareness - or they did not care. I wondered how frightening it must be to live dependent on people who are so uninvested in one's well-being.
 

It is so easy to be cruel, to inflict pain without intending to. And it takes so little to do it a different way: a kind word at the right time, a tiny favor, a gentle touch, a small sign of recognition. Perhaps this little really does take a lot out of us. It requires a fair amount of energy to open ourselves to our patients, not permitting ourselves to tune out their pain and isolation. This "tuning out" is what is so deadly, and it usually results not from intentional heartlessness but from self-protection. People who already feel overworked and overwhelmed may be hesitant to invest any more emotional energy than they have to in relating to those under their care. The challenge we face is how to preserve our own integrity and the humanity of our patients as well.
 

I am not advocating interference in patients' lives or the violation of boundaries. A certain amount of distance is necessary to preserve good staff-patient relationships and to keep them ethical. Nevertheless, I believe it is healthy for us to treat our patients with kindness, attention, and a positive attitude. It is healthy for us to see that the physical ministrations we offer are only half the job. The practice of kindness benefits the soul; it makes us better, happier people. It also transforms the atmosphere in the facility, making it easier for both patients and staff to resist "institutional depression."
 

It is important to treat every patient with respect, no matter how compromised he or she may be, and to avoid condescension. When people are helpless it is so easy to talk down to them without realizing it, infantilizing them and robbing them of their dignity. Most of the people I am caring for have lived considerably longer than I. I try never to forget this, no matter how little of their life experience may seem available to them in their present state of disability.
 

Respect is just the beginning. Beyond this is the human connection. We must allow ourselves to be open to our patients, and - dare I say it? - we must allow ourselves to love them. To love them, not by becoming overly involved in their lives - that is not love - but by being aware of them on every possible level. Being aware, refusing to tune them out, knowing the need of the moment and how to respond to it - this is love. When people are loved they feel someone listens to them, someone cares about them. They do not feel isolated.
 

Love makes it possible for us to become open to others' pain without burning ourselves out. It heals us as well as our patients. Opening ourselves is not easy: we may find it difficult, even draining at first. The loving atmosphere we create must sustain the staff as well as the patients. Regular support groups for staff are important in providing a safe place where care providers can talk about the feelings and reactions that patients evoke in them.
 

We can also support each other by treating both ourselves and others with the kindness we try to show our patients. One day the elevator in the nursing home was slow to arrive, so I took the stairs up several flights. A nurse coming the other way saw me rushing and out of breath. "Be gentle with yourself," she said. I needed the reminder.
 

Sally was a new member of a music therapy group I led in a long-term health care facility in which I used to work. She was about 60, recovering from a stroke, and extremely mistrustful and hostile. "There is not enough love in this hospital!" she would loudly proclaim, and I knew that she was right. Still, she took out her frustration by criticizing me and the way I led the group: everything I did needed improvement. She was challenging me to show her the love she felt lacking in the institution as a whole.
 

One day Sally had an accident. She fell out of her wheelchair and banged her head hard on the dining room floor. The nurses took her out and revived her. I tried to speak to her, but she was dazed and incoherent. She was taken to another hospital for observation and treatment.
 

Two weeks later Sally was back, ornery as ever. She never lost that angry edge, but the other members of the group still tried to reach out to her. One member's patience finally ran out. She turned to Sally and said, "You know, there's a lot of love in this group." Sally heard it this time. She began speaking to me with less anger, and even with some warmth. On my last day at this institution she was too sick to come to group, and had to stay in bed. I went to her room to say good-bye, and I gave her a copy of our songbook, with an inscribed personal note. She looked up at me and said, "You really do love me."
 

I said before that even when we do our jobs properly "a crucial element is often still missing." Sally identified this crucial element: it is love. We are not used to thinking about love as a key aspect of our professionalism. It is hard to find articles in professional journals about love. Love cannot be measured; it cannot be expressed in numbers; it resists experimental methodology and statistical analysis. It is easy to neglect intangibles like love, since measurable results are far simpler to report in journal articles and grant applications.
 

Even my own field of music therapy, so deeply grounded in humanistic values, is becoming more quantitative in its emphasis. The increased application of research methodology to music therapy and to the therapeutic process in general is one way, but just one way, of furthering knowledge and accountability in this field. I hope that the emphasis on quantifiable results will not divert attention from the more ancient and subtle properties of music: its effect on the soul, and its ability to lift the human spirit. While not quantifiable, these effects can still be discussed and practiced in a systematic way.
 

If we pay most of our attention to facts, figures, and the bottom line, we risk missing the subtle factors, emotional, intuitive, and spiritual, that make therapy work. Paying more attention to the latter does not necessarily imply a loss of rigor: whether it is music therapy or any other form of patient contact, therapeutic training is invaluable. It is important to know how to recognize transference reactions, to monitor our own countertransference, to respect the patient's boundaries, and also to know that beyond all these exists a real relationship that can be profoundly meaningful and healing to both people. A strong background in these areas can provide a measure of support and can help avoid excessive or inappropriate attachments.
 

Part 2: A Spiritual Perspective