Category: Field Stories

Playing music for the hearing-impaired is a challenge.  Unfortunately, a large number of hospice patients have lost much of their ability to hear well due to their advanced age. Until I can sit with the patient and try different sounds and gauge their response, I don’t know if therapeutic harp will benefit them or not. Sometimes, just the experience of trying to hear, agitates and frustrates the patient because it is a painful reminder that they’ve lost the joy of sound along with so many other deep losses.  I have been dismissed by some with little regard for social graces and a lot of anger focused in my direction. In contrast, some profoundly deaf patients delight in the experience that someone went to the effort to lug a harp into their space and sit with them for awhile even though they will never hear a single note that is played. Intention and presence are gift enough for these people. One of my profoundly deaf patients once said to me, “Honey, I can’t hear at all anymore so you just play whatever you like.  My wife enjoys the music and that makes me happy. Come back anytime.”

Yesterday I met a new hospice patient for the first time.  John is in his  90’s, and when I arrived, he was quite agitated about something he thought was on his pants that needed to be removed.  He was bent over double in his chair in his living room trying to pluck the offending substance off his pants. The printed pattern on the pants looked like something that didn’t belong there to him.  His caregiver, a family member, was present and was concerned that John was not behaving appropriately for his “private concert”. He tried to reassure John that nothing was on his pants; John was not reassured in the slightest.

I had been informed before I arrived that John had 2 favorite songs that I should play which I practiced before I went. One, a traditional American song, the other a hymn.  I introduced myself to John and shook his hand. He looked confused and asked, “Do I know you?”  “Not yet” I assured him, “But you will.”  I had to get very close and shout and it wasn’t clear if I was being heard at all. Initially, I sat about 6 feet back from the chair John occupied and began playing the songs a family member had told me he loved.  I got no response.  John had stopped fussing about whatever he thought was on his pant leg and now was agitated over the towel that he was sitting on to protect the chair.  He wanted it removed. He kept trying to stand up so he could pull the towel out, which he wasn’t able to do without risking a fall. His caregiver kept jumping up and trying to calm John, encouraging him to just sit and listen to the music.  John was having none of it and the caregiver appeared to be getting frustrated with John’s  behavior.  No matter how loudly I played, John was paying no attention to me at all. I was invisible to him. I suddenly realized John couldn’t see me or hear me. Clearly, this encounter was not producing the desired effect of soothing peace and calm for either John or his caregiver.

I stopped playing and told the caregiver I wanted to try something a little different. I moved as close as I could get to John with the harp and managed to get his visual attention.   He did not seem to remember me and acted surprised that I was there. I placed his hands on the harp pillar and began to play scales, arpeggios, and glissandos. John’s face lit up.  He could feel the vibrations.   He began to comment on the size of the harp and the strings.  He tentatively plucked a string and beamed his delight at me.   He asked questions about the harp and told me about someone he knew long ago who played the harp. I was getting a glimpse of the charming, intelligent and caring man John was inside. He stopped perseverating on the chair and his pant legs.  I tried again to play his favorite songs but there was no visible recognition to any melody from him. I continued to play familiar tunes, more to calm the caregiver than John. John appeared to find joy in the closeness and novelty of my presence and the harp vibrations he could feel.  The caregiver found peace in the music and ability to relax, momentarily, from his demanding job.  The tension in the room began to dissipate quickly as the calm settled.  John kept his hand on the harp pillar and continued talking to me, quietly.  I couldn’t understand his words so I just kept playing, looking at him, smiling and nodding.  When it felt like the right time to leave, I bid John and his caregiver goodbye and was encouraged to return anytime, any day.

Sometimes I don’t arrive in time to play for the actively dying patients before they pass.  If the mortuary has not come yet, I may sit with the body in a low-lit room and play for the newly departed. My personal belief is that the newly dead remain in the former space for a short period of time. Like birth, the end of life transition from mortal to spiritual being can be traumatic and confusing, initially. I imagine the abrupt cessation of pain, gravity, and fear when the spirit finally releases the physical shell, combined with the impending launch into the light of unconditional love with the soul family and Creator, may cause some momentary resistance, at least for some.  So, I play for that spirit who may remain, encouraging it to take flight.  I play for the hospice staff and family members who remain in the room grieving their loss.  I play for the facility staff who clean and prepare the body for the mortuary to pick up and are mourning, as they complete this final service for a patient they have come to know and love.  This is a sacred space and time and I feel a responsibility to hold and preserve  that sacredness for just a bit longer with music if I can.

Rudy was a patient who was loved by everyone he met throughout his life. He came to America as a poor Russian immigrant when the Soviet bloc collapsed in the 1980s and he could leave Mother Russia. He brought his family with him including his wife and several small children and was a man who made friends wherever he went. According to one son, Rudy never forgot his old acquaintances while continuing to make new friends his entire life.  How he remembered all those people, their names, the details about their families and lives was a mystery to everyone, including Rudy’s own family.

Rudy’s final days were spent on hospice in an assisted care facility he had been living in for a while. Even before Rudy was admitted to hospice, I knew him. He had met me when I came to play for our hospice patients at the facility and we had spoken in the lobby while I tuned the harp and he was waiting for his daughter to come and visit.

When I first entered Rudy’s  room with the harp, he looked up and smiled. “Well, I guess it must be my time, the angel has come for me, now”, he said.  He remembered who I was from our prior brief meeting. I told him I hoped we would have many therapeutic music sessions together.  He just shrugged, leaned back in his wheelchair, closed his eyes and let the music envelop him.  We did get to have many sessions together but not as many as either of us would have liked. I remember him always smiling and welcoming me into his room even as his diminished health steadily declined.

I was unable to be there with him while he was actively dying but I was told he was surrounded by his loving family and friends. By the time I arrived at the facility to play for him, Rudy had passed and his family had left so I sat in his room with his body and played some of his favorite songs.  Soon the Nursing staff came in to prepare Rudy’s body for the mortuary.  I asked them if I could stay and continue playing while they worked.  The two Aides agreed although my request seem to surprise them. Both were tearful while they lovingly bathed Rudy and covered his body.  Rudy’s  departure would leave a large hole in the world for all the people whose lives he had touched.

When the mortuary came for Rudy, his body was carefully transferred to the gurney and his face covered with a drape.  A rose was placed on his body and the processional to the waiting van began with the hospice nurse, the 2 mortuary staff people, and the gurney with Rudy. The nursing assistants and I walked behind out to the waiting car. I believe Rudy’s spirit had already departed by then. I played only for his memory and for the people he had left behind to comfort us all in our grief.

I had been alerted through encrypted email that one of my favorite VA patients had passed after a long time on hospice. I had gotten to know Joe well during our sessions together as he did not suffer from dementia and loved music.  Usually welcoming and greeting me with a big smile, the last time I visited he asked me to leave as he just wanted to sleep. I knew he wouldn’t be with us much longer.

The next time I saw him, he had passed. He was still in his facility bed and room and his family wanted to provide a memorial for him there and dispense with a funeral service. They planned a bigger family and friend memorial much later in his home. Joe would be cremated. A rose was placed on his body and I sat next to the bed as far back as I could get in very tight quarters to accommodate family who wanted to say “Farewell” and touch him.  As they slowly filed in, I played hymns and music he had enjoyed.  Although no program had been formally planned, at one point a son began telling stories about his dad from a happier time.  In addition to being a kind, generous, adventurous man who loved the outdoors and his family, he had also been a Gin and Tonic drinker. Neat, no ice.  As the family stories began to unfold of trips to Moab and Lake Powell and skiing, there was equal laughter and tears. Everybody, including teenage grandchildren at the time, had been encouraged by Joe to join him in his favorite drink.  As they told it, mostly gin, little tonic, warm and disgusting but they drank with him anyway to please him.  And to honor him, an adult grandchild pulled out of his pocket a flask of gin and a small bottle of tonic water.  Paper cups were gathered and a toast was drunk to Joe, beloved husband, father, grandfather and friend. After everyone was done speaking I  played some more and stayed until the mortuary arrive.   I finished with You Raise Me Up, Wind Beneath My Wings, and Somewhere Over the Rainbow.  I waited outside the room while the mortuary transferred Joe to their guerney, draped his body with the American flag and began the processional out to the waiting van.

At this VA long term care facility, the dead are acknowledged and honored. As they are slowly moved out in a great processional with the nurse, chaplain and family following the departed, over the loudspeaker everyone in the building is informed of their passing, their military service and a recording of Taps is played. All who can, stand and either salute or place their hand over their heart until the veteran moves out the door.  All work and conversation that is not essential stops. It is a very moving experience just to be part of this loving and final tribute to people who selflessly served their country.

 

I realized that I might have overdone it that day when I pulled into the grocery store on my way home from work at 7:30 pm on a Friday night. Instead of buying some nice, sensible  salad fixings for dinner, or even a pre-made comfort meal from the deli, I bought a pint of cookie caramel crunch gelato and a tiny little jar of Nutella. Oh, and some salty, crunchy, calorie-dense, nutrient-poor condiments and side dishes to enhance the main course. This is what I ate for dinner while I binge-watched Glee reruns on Netflix. Predictably, by bedtime I was suffering from bloat remorse and a bit of queasiness.  I confess, this is how I self-medicate.

The day started with me getting a late start on a one hour drive for a Mother’s Day lunch harp gig, only to discover when I arrived (after breaking speed limits without getting caught) that the lunch actually started an hour later. Since I was at a long term care facility, I had patients there to see anyway.  I went first to the one patient who I had read via email was probably transitioning.  I sat by his bed and played ionic, rhythmic improvisations in mostly major keys. I threw a couple of hymns in as well. I could not detect any sort of outward physical response to the music. For all intents and purposes, the patient appeared relaxed, calm and sleeping like a baby. I moved on to patient number 2 who was sitting in the dining room waiting for lunch. I played for him until it was time to gravitate to the Mother’s Day lunch celebration.  I was put on the stage with a spotlight and microphone and played my heart out for an hour and 15 minutes. That is about my limit, without a break. When I reach that point of “so-done”,  I start making a lot of mistakes. The brain begins to go first, and the fingers aren’t far behind, similar to hypothermia effect. It’s best to stop while people still think I’m a fairly good harp player. Fortunately, the facility staff in their gratitude for my serenade offered me lunch which was reviving as only lasagna, salad with raspberries and cupcakes frosted to look like flowers can be.  I proceeded to see and play for another 4 patients at the facility.

My email alerted me as I was finishing up that there were no less than 3 patients I knew well who were transitioning to actively dying at a facility I would be driving right past on my way home. I felt compelled to stop and play for them and their families, if there were any family members present.

Before I got to anyone’s room, I ran into one of our hospice chaplains. He confirmed that there were three of our patients in various stages of dying, none of whom were expected to last the weekend. I assured him I intended to see them all before I went home.

The first patient I saw at the facility,  patient #7 for the day, was lying in bed with open, unseeing glazed eyes and death rattle breathing.  Her roommate had not gone to dinner and was lying in bed watching TV, which she blessedly turned off after I arrived and began to play. I am always so grateful for this thoughtfulness in shared space. No matter what someone’s financial situation is, they should be allowed to die in peace and not have to listen to the dreadful evening news or Jeopardy blasting 10 feet from their bed. So often though, they are left in a shared room where the roommates are doing their best to ignore the fact that one of their own is dying, while family and friends are present and grieving around the bedside. If there is space available, sometimes the nearly departed and entourage are moved to a private room but often, there is no space available and everybody must suffer together.

I played chord progressions with right hand improvisations, including both major and minor keys, the Kyrie Eleison from Hildegard Von Bingen’s  Missa De Angeles written in the 11^th century and pentatonic improvisation with some standard hymns thrown in. Finally, the patient closed her eyes and appeared to fall into a deep sleep. Her breathing was still audible and wet sounding but not so loud and labored as before. I left her quietly and went to see my next patient.

Patient #8 was surrounded by children, grandchildren and a young great grand-child.  This room was also shared with another patient hiding behind a thin curtain surrounding her bed. A son told me that his mother loved music and came from a musical family. I had been playing for the patient for a couple of years as she slowly declined but she had never been able to communicate with me beyond gibberish, moans and cries. She had severe dementia in addition to co-morbidities so while I knew her, I never really knew her at all or who she had been before she became a hospice patient. The patient was sleeping peacefully and I didn’t know that I had much to offer her. However, the family was in the throes of grief and their pain and agitation was very real.  I find that familiar music and hymns seem to help in those situations. I extended the repertoire with improvisations but I focused on standard hymns, finishing with Somewhere over the Rainbow, You Raise Me Up and Wind Beneath my Wings. More family arrived and I departed to make space for them and to see my third patient.

Patient #9 was a dementia patient who was blissfully alone in her room. There were no other patients or family with her at that time. Prior to her recent health decline, she used to love to sing along when I played harp for her. Even in her current state, she was still humming, very quietly, while she lay in bed with her eyes closed. I began with her favorite songs and then shifted to unfamiliar music and then improvisations. She continued to hum along anyway.  When I left, she was still humming some favorite tune only she could recognize.  She did not appear agitated or uncomfortable, which had been the case earlier, according to the nurse’s report.

I did not notice my own exhaustion while I played for our patients but after I finished it hit me. As did the pulsating neck pain radiating up into my head. I still had an hour drive home after seeing the last patient but at least the commuter gridlock traffic had abated by then. Good thing, because I think I drove on autopilot most of the way. That is, until I got close to the grocery store and began obsessing about ice cream and Nutella.  Eight hours of Therapeutic Harp playing is too much, at least for me.  But sometimes things happen and there is no real choice in the matter. You do what needs to be done; then go home, eat ice cream, watch Glee reruns, and hope tomorrow is better.

 

 

As a Therapeutic Musician, usually I play for patients while they passively listen to the music and relax to the gentle sounds. However, on rare occasions I get to make music with my patients, which takes the experience to a much higher vibrational level of healing.  Sometimes we sing together but in the following case, my patient was a harmonica player, not a singer.

Kevin* was referred to me by our hospice team for Therapeutic Harp sessions to help with his anxiety associated with dementia. I was told at that time that Kevin was a musician. Bristol Hospice recognizes the benefits of live, bedside harp music to calm patients and family members in our music program.  In my experience, people with musical talent are especially receptive.   

Kevin lived in an assisted care facility. The first time we met, I found him sitting in his private room watching tv. Well, the tv was on; whether he was watching it or not was debatable.   On the table next to his bed was a large harmonica.  I didn’t know much about harmonicas at that time but when I asked Kevin about it, his face immediately lit up with a big smile. He said he had been playing harmonica since he was 3 years old.  His older brother had one and when his sibling left for school, Kevin “stole” the harmonica and has been playing one ever since. He was proud to relate he is self- taught and plays by ear. 

I started to play an unfamiliar Celtic tune on the harp for him to initiate the musical relaxation session. But Kevin  did not want to relax to my music, he wanted to play music with me. I had never had this experience before so I stopped and asked him what song he would like to play and he said, “Anything in the key of C because that is all this mouth organ can do.”  He said he couldn’t remember any songs by name but if I would start playing something popular, maybe he would remember.  I began with “Amazing Grace”.  He cocked his head and listened briefly and then informed me he recognized the tune although couldn’t remember the title and I was playing it in the wrong key.  It took some trial and error but I was able to transpose the piece into the “right” key and we were able to play our first harp and harmonica duet: Amazing Grace, key of C major.

The next time I came to play for Kevin, he was sitting in the lobby of the facility with the other residents waiting for dinner.  I had planned to go to his room as we had done previously but several of the other residents asked us to stay in the lobby and play when they saw my harp.  Kevin agreed to play with me in the lobby so we began the first of our pre-dinner performances for the residents.  The fact that we didn’t always play the “right” notes or finish at the same time didn’t bother anyone.  The happy sound of Kevin’s harmonica and the beautiful tone of the harp brought joy to everyone in the lobby, especially Kevin. 

As soon as someone recognized a tune we were playing they would call it out, which began a game of “Guess That Tune” for the residents. Occasionally, someone would join us by singing along, which added to the fun.  At the end of each session, Kevin would whisper to me, “Not bad for an unrehearsed first time effort. Maybe we should practice a bit next time.” 

Kevin’s hospice nurse was in the audience one afternoon and told me after our performance that he was profoundly moved by the transformation Kevin went through simply by bringing a harmonica to his lips and making music. “It was like Kevin came to life!” the nurse said.  “I can’t believe the change in him just by performing music.”

Kevin and I routinely performed at the facility every other week, same time, same day, before dinner and entertained the residents with our music.  Kevin’s family was visiting him at one of our sessions and they were amazed at Kevin’s musical talent as well as the change in his demeanor when he began to play. “It’s like he got younger in front of our eyes!” his relative exclaimed.  “I didn’t even know he played the harmonica,” she added.  “I’m going to try and organize a family jam session with him,” she promised.

In order to understand Kevin’s musical transformation, I should describe his before and after effect. Upon arrival at the facility, I would see Kevin sitting in his wheelchair across the lobby, withdrawn and isolated.  He had slight hearing loss, poor eyesight and memory loss which made participation in the group verbal activities and games the facility organized difficult for him.  His face would be blank with a flat affect.  I would greet him and ask him if he would like to play harmonica with me, and he would smile and begin searching for his harmonica.  It usually was in his room on his table, not in his pocket.  After retrieving it I would  ask him what he wanted to play. He would respond, ”I can’t remember any music except the Yale Fight song and a good old Baptist hymn, Love Lifted Me”.  I would encourage him to play his songs for us and then we would all clap, which tickled him. After his solos, he would turn to me and say, “I can’t think of any other songs. You play something. I’ll join you if I can remember it.”  I knew the songs he would remember and could play on his harmonica so I would begin on my list.  Within 4 notes, he could usually join in and we would play together.  Often, Kevin added interesting harmonies and counterpoint to the melody.  When we finished and everyone applauded, he would whisper to me, “Not bad for a first time effort”.  At the end of our session when the residents begin wandering into the dining room for dinner, Kevin would look at me and say, “Maybe next time we should practice before we perform,“  and then he would ask “Who are you, dear?  And I would always say, “ What a great idea. My name is Heidi and I work for Bristol Hospice and I’m here just to play with you.”

“Oh, how nice!” he would respond and then I would wheel him into dinner and depart.

Kevin and I played together every other week for almost a year before he passed away, rather suddenly, as I know he would have wanted it. While his family sat at his bedside during his transition, I stayed outside his door and played all of our favorite songs to help him on his journey.

 

*Kevin is not the patient’s real name, which is changed to protect his privacy.