Songs for the End of Life

Most of my patients like hymns, and I often play what I call the Big 3:  “The Old Rugged Cross,” “In the Garden,” and “How Great Thou Art”. “Amazing Grace” isn’t part of the Big 3 because it’s in a class entirely by itself. It is by far my most requested song. “Jesus Loves Me” gets an honorable mention. There are other hymns I like to incorporate, lesser known than the Big 3, but still familiar: “Softly and Tenderly,” “Just a Closer Walk With Thee,” “What a Friend We Have in Jesus,” and “Sweet Hour of Prayer,” among many others.

When the patient has reached the very end of life, with literally hours or minutes left, and every breath calculated and delicate, these songs take on an almost unfathomable new meaning. Songs that might have been sung hundreds of times in church or at camp or revivals are now so potent when being sung to a loved one taking his or her last breaths. Consider these lyrics:

from The Old Rugged Cross:

To the Old Rugged Cross, I will ever be true
It’s shame and reproach gladly bear
Then He’ll call me someday to my home far away
Where His glory forever I’ll share

from Softly and Tenderly:

Come home, come home
Ye who are weary come home
Earnestly, tenderly, Jesus is calling
Calling, oh sinner, come home

from How Great Thou Art:

When Christ shall come, with shout of acclamation
And take me home, what joy shall fill my heart
Then I will bow with humble adoration
And there proclaim, “My God, how great Thou art.”

Anytime there are lyrics that talk about home it really hits you how relevant the song is. It’s a powerful message, so powerful that I have to be careful with these words. If the family or the patient isn’t ready or hasn’t accepted that death is coming, I could do real damage. I’ve been in situations where I held back from singing songs with these lyrics because I didn’t know what the reaction would be. It’s at times like those I have to rely on my intuition and empathy to make the right choices.

When I can sense that the patient is ready and the family has accepted the circumstances, I feel comfortable and led to sing these songs. I also like to sing a song called “Going Home.” The lyrics are simple, poetic, and usually comforting for the family.

Going Home

Going home, going home
I’m jus’ going home
Quiet like, some still day
I’m jus’ going home

It’s not far, just close by
Through an open door
Work all done, cares laid by
Going to fear no more

Mama’s there ‘specting me
Papa’s waiting, too
Lots of folk gathered there
All the friends I knew

Nothing lost, all’s gain
No more fret nor pain
No more stumbling on the way
No more longing for the day
Going to roam no more

Morning star lights the way
Restless dream all done
Shadows gone, break of day
Real life yes begun

There’s no break, aint no end
Jus’ a livin’ on
Wide awake with a smile
Going on and on
I’m a’goin home.

The other night my boyfriend and I were talking about heaven and all the descriptions it’s been given. I mentioned how I feel heaven is too glorious, too substantial to be up in the clouds like it’s always imagined. He said he likes to think of it how Tolkien described “the West” at the end of the Lord of the Rings trilogy:

“And the ship went out into the High Sea and passed into the West, until at last on a night of rain Frodo smelled a sweet fragrance on the air and heard the sound of singing that came over the water…the grey rain-curtain turned all to silver glass and was rolled back, and he beheld white shores and beyond them a far green country under a swift sunrise.”

I’ve occasionally used the song “Into the West,” from the LOTR movies, in my sessions, when I’ve felt it’s been appropriate. The imagery paints a beautiful picture and can be comforting for the patients.

Into the West

Lay down
Your sweet and weary head
Night is falling
You’ve come to journey’s end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore

Why do you weep?
What are these tears upon your face?
Soon you will see
All of your fears will pass away
Safe in my arms
You’re only sleeping

What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

And all will turn
To silver glass
A light on the water
All souls pass

Hope fades
Into the world of night
Through shadows falling
Out of memory and time
Don’t say: We have come now to the end
White shores are calling
You and I will meet again

And you’ll be here in my arms
Just sleeping

What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

And all will turn
To silver glass
A light on the water
Grey ships pass
Into the West

Finally, not a song (yet), but I came across a poem that is often used in hospice care and at funerals. I was probably drawn to it because it reminded me of the Tolkien words. The poem is called “Gone From My Sight” by Henry Van Dyke.

Gone From My Sight

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

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Validation

When a person gets older, they gradually, or in some cases instantly, lose control over certain things. Mobility, memory, independence, and decision making are just a few. Something else they lose which might not be obvious to many is the right to be heard. A man is admitted to hospice and the team does their job getting everything in order to care for this man the best way they know how. Often by this point, the family is already making most of the decisions. The patient may be in hospice care against his will. And many of our patients are stubborn, as we all are.

Everyone is bustling around and fussing over the patient and he is too tired or confused to put a fight so he just gives up and gives in. However, this isn’t usually the case. A majority of our patients are accepting of hospice care and appreciate all that we do. Others are so far gone in their dementia or Alzheimer’s they only have a vague notion that lots of people are taking care of them.

Whether the patient is docile or not, they will still go through a cornucopia of feelings throughout their dying journey. Family matters invariably may complicate things. Sometimes the family is healthy and coping well, getting along, and prepared for their loved one to die. Other times…I’ve seen denial, dysfunction, estrangement, insecurity, guilt, and simply poverty, significantly affect the experience of the patient.

It is in this context that I arrive for music therapy. The patient may be dealing with the new routine of nurse and aide visits, new medication, family members coming and going with their own emotions, and death waiting before them. They might have just had a bath, or a phone call, or a handful of pills, or a visit from a tearful son or daughter.

Upon being asked what song he would like to hear next, a patient of mine once said, “I don’t care what you sing, just don’t cry.”

I thought that was a very interesting statement. And this is where validation comes in. I could have said, “Oh, people are crying because they love you and are sad to see you sick,” or, “Sometimes people can’t help crying,” or, “Well, emotions are hard to control.” Or I could have ignored his statement. But none of these validate the patient.

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Validation

1. To declare or make legally valid.
2. To mark with an indication of official sanction.
3. To establish the soundness of; corroborate.

This third definition describes my use of validation in music therapy. To be clear (also I had look it up), corroborate means “to strengthen or support with other evidence; make more certain.” In this case, I corroborate with my patients by listening to and believing them.

Validation is the most common support I provide to my patients next to singing and playing songs. I said to the man, “You don’t like it when people cry?” He said, “No.” I said, “It’s hard to see people cry, isn’t it? Sometimes it might make you uncomfortable or you don’t know what to say. I can understand why you don’t want people to cry around you.” I can’t quite remember what he said after that, but I recall it was insightful and strengthened the rapport between us.

And then I sang a song. Probably “Ring of Fire” because he likes Johnny Cash.

Validation doesn’t come easily for me. I’m usually one of those people who is thinking of what I’m going to say while you’re talking. But in this internship I’ve learned to actually listen to people who are talking to me. It’s a lot less work because I don’t have to think of something witty to say or try to 1-up the person. Instead, I simply let them know they’ve been heard. It takes a lot of pressure off to be interesting, and the person appreciates the undivided attention. Charismatic people are experts at this, which is why we’re drawn to them.

Validation and music therapy naturally go together. Unlike the medical team in hospice, music therapists come to the patient to sit with them but not do anything to them. Music therapy is music, but it’s also talking. Partially because it’s a naturally social thing, and partially because music builds rapport and trust, and music will uniquely draw out conversation that may otherwise be suppressed or hidden behind barriers.

Two significant outcomes have resulted from my learning to validate. First, I’ve begun to validate my friends and family way more than I used to. The skill naturally spread into my whole life. I find myself talking less and listening more, and finding out more about the people I love.

Second, I’ve begun to validate myself. Part of this came from my therapist. Before, when I would have an emotion I didn’t like, I would be hard on myself and try to dismiss the feeling, which made me feel worse and like I was a terrible human being. Once I began validating my own feelings I gained a healthy confidence and respect for myself, and I didn’t feel like a weirdo all the time.

Now, when I experience an emotion, I acknowledge it instead of dismissing it. And in the times I’m really smart, I include God in the conversation. It usually goes something like this:

Me: God, I feel [emotion] because [of this situation], and….I don’t know what to do with it, so….here….I can’t – so….you.
God: Beloved, thank you for trusting me with this, let me take it from you and replace it with peace and a little clarity.

It’s amazing. It really is. And it works perfectly because God is really good with handling the stuff that doesn’t make sense. Guess who isn’t? Yah. And He gave us empathy and compassion and communication to validate each other so that we can support each other and grow through shared experiences.

So go forth and validate! Huzzah!

Anecdotes

A few of the many amazing stories I have found myself in these past 6 weeks of my internship:

Dang my Rowdy Soul

My second week we visited a newly admitted patient in her home. Her quality of life was very low and she was unresponsive to us and our music therapy, but we knew the husband would benefit, which is perfectly appropriate in hospice. After we explained what music therapy was, the husband told us what his wife likes, and also mentioned a song that he was interested in hearing, called “Dang my Rowdy Soul”. He explained how he used to listen to this song on his grandparents’ Victrola but hadn’t heard it after they died. I took it upon myself to find the song, which I did thanks to Youtube, and I wrote it down and learned it.

The next time we visited, I played the song for the husband. He confirmed it was the right song and was a little flabbergasted that I had found it just for him. I asked him when he heard it last and he said 1951, right before he left for Korea. He was very appreciative of our visit and our music.

His wife died the next day. It may seem odd to hear, but sometimes death is a good thing, especially considering her quality of life was so poor and it was very hard on the husband. But what struck me was that we wouldn’t be going back to visit. If I hadn’t learned and sung the song for him on that second visit, he may never have heard it again.

The Old Rugged Cross

We went to do an assessment (first time visit) of a current patient with dementia. My supervisor was familiar with the patient and warned me that she may be agitated. We arrived to her room in the nursing home and looked in. The patient was small, and curled up in her bed. She was in the fetal position and laying sideways. She appeared to be sleeping. My supervisor knelt down next to her, touched her hand over the blanket, and spoke her name. Her immediate response was a jerky motion and “what do you want?” but didn’t open her eyes. When we said we were here to share music with her, she said “alright.” Knowing she was spiritual, we began singing hymns. The patient began singing along but never opened her eyes. After a period of singing, we said good-bye and that we would be back soon. The patient thanked us for coming and was very appreciative. She was pleasantly resting when we left.

Upon writing our note in the patient’s chart, we found several other notes stating that the patient was agitated, mean, and uncooperative, calling people names and telling them to leave her alone. My supervisor and I looked at each other in bewilderment. How interesting we didn’t get that response at all…

Precious and Few

On a Friday afternoon, the last patient of the week, we did an assessment of a gentleman who had been discharged from Hospice and recently re-admitted. Only in his 60s, he was rapidly declining due to Alzheimer’s disease. His wife was present and was coping well with her husband’s condition. Since my supervisor had done music therapy with this patient before he was initially discharged, she knew some of his preferred music, and also that he used to dance. Usually only able to hold attention for five seconds on one thing, the patient kept dancing with help from his wife while my supervisor played a blues progression on the guitar. When the music stopped, my supervisor talked to the wife about her husband’s care, while the husband wandered around the room, not really focusing on anything.

Knowing the song “Precious and Few” was a significant song for the couple, my supervisor pulled it up on her iPad and played the recording while the wife took her husbands hands and moved them in a circular motion while dancing. He complied and moved along with his wife.

As I was watching, I noticed the patient was moving, but not exhibiting any kind of affect (emotional response) and not acknowledging his wife. Then, for a brief moment, the husband put his left arm around his wife’s waist and pulled her in close, resting his chin on her shoulder. She laughed and “awww”ed and said, “See, you’re still in there somewhere.” But before she finished her sentence, he went back to his previous behavior. The moment brought tears to my eyes.

Going Home

I spent most of last week in orientation, so I was in the office and not out on visits. There’s a particular song I’ve introduced to my supervisor, called “Going Home.” It’s poignant and very appropriate for those last days and moments of a patient’s life. Just as my training was getting underway one morning, my supervisor texted me and asked me to call her so I could sing her the melody of the song, as she was about to visit a patient who was impending (very close to death) and she wasn’t completely comfortable with the song yet. I left her a voicemail of me singing the song and she also was aided by a Youtube clip.

She texted me later that the song was perfect for the moment and the family members were able to grieve openly with each other. My supervisor left the patient relaxed, though still showing signs of impending death, and the family, close together.

The patient died that afternoon.

Oh, how much have I seen the effects of music therapy in hospice care. It’s the soft cushion of care and support upon which our patients and families rest and breathe.

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Moving…

I just spent a fabulous weekend in DC, visiting friends, going to museums, and attending a perfect wedding. Here are just a couple pictures from the weekend. This trip though, my final one to DC for a very long time, kind of marked the beginning of the end for this season of my life.

MJ and I eating Potbelly for lunch

MJ and I eating Potbelly for lunch

The newlyweds!

The newlyweds!

Transitions are messy. And I am in one. Again.

I thought I’d give y’all a break from my existentialism and theology and give an update on what I’m doing nowadays!

I’m finishing up my 4th semester (technically 5th if you count last summer’s whirlwind of music theory combined with anatomy & physiology) at Shenandoah University in Winchester, VA, in which I am getting a professional studies degree in music therapy.

To be eligible to take the board exam for music therapy you have to get the proper education and complete an internship (these items being the two parts of the professional studies degree). I was fortunate to find and be accepted to an internship near my hometown. It’s with a Hospice organization and I will be there for six months.

(The reason I’m getting a professional studies degree and not another bachelor’s is because all of the music classes I took for my performance degree transfer to the prof. studies degree. So basically, the prof. studies degree is a fast track bachelor’s that fills in the gaps, but the classes are at graduate level [making it affordable {kind of}].)

I am also working on a master’s degree, which is a normal graduate degree – advanced practice, thesis, etc. So while the professional studies degree will allow me to take the exam and become an MT-BC, the graduate degree will give me an MM (Master of Music in Music Therapy).  I’ve only been a part-time student this semester, taking two classes, which are both going towards my master’s degree. I’m about halfway done with the master’s, but will take a break from it in the fall since I’ll be doing my internship. The plan/goal/hope/wish is to finish the internship around Thanksgiving, graduate with my professional studies degree, take (and pass) the board exam, get my credentials, and have a job by January. Then I’ll pick up the master’s classes again part-time.

So, I am moving back to Ohio in about 2 and a half weeks. And of course, just when the transition is starting, I’m finally feeling settled in Winchester. I’ve developed some amazing friendships that are now going to be long distance. Isn’t this always the way it works? It’s a catch-22 though, because you lament having to leave your friends but are grateful you have friends to leave!

The biggest win of course is being closer to my family. I’ll be living at home, and will be much much closer to all of my family. Which of course includes my pride and joy – my nieces and nephews. And this group will be growing soon! So I am very excited about being amidst my family instead of being afar.

If I may, I’d love some prayer. Prayer for a good end of the semester, that everything gets taken care of for my internship to start smoothly (paperwork, medical stuff, etc.), that I can transition back to my hometown after not living there (or Ohio for that matter) for about 8 years, and that I look to God as my constant through all of this.

I’d like to turn this back into a blog about music therapy again, so my plan is to focus on the internship here and give you a glimpse of what it’s like to work in Hospice.

I’ll keep you updated as I go along! I feel kinda weird posting my social media handles, but here they are in case you want to follow more closely…
Twitter: @sarahchil
Instagram: chilgirl21

Thanks for reading! Happy Monday 🙂

Like a Child

This is my nephew. He is 18 months old. I think he might be a hobbit because he eats second breakfast. Which is always someone else’s first breakfast. In this case, it was mine.

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My brother’s family prays before meals. The kids know to fold their hands and the older one (4 and a half) can pray her own prayers.

For the little one, they’re teaching him an easy prayer.

Dear Jesus,

Thank you.

We love you.

Amen.

The other night, the little hobbit and I were alone together and after I set his plate down I said, “We need to pray!” He folded his hands, looked at me, and began, “eer Jeeesuh…”

As my nephew was enjoying his pears, I contemplated on the simplicity of the prayer. It’s really all we need.

Sometimes it’s all we can muster.

I just finished Love Does by Bob Goff. I find his secret is that he keeps his faith simple. It’s just about loving Jesus, trying to live like him, and loving people. That’s it. When something is so simple, it’s easier to take action. That’s when love does.

Simplicity. Perhaps that’s what having faith ‘like a child’ means. It doesn’t mean we are naive or innocent. It means we keep it simple.

Maybe I complicate my faith because I don’t understand it all the time. Maybe I do it because it scares me. Maybe I complicate my faith because I think something so important couldn’t possibly be so simple.

Sometimes, saying the name of Jesus is all I am capable of. Then again, maybe that’s His favorite prayer. Because it’s pure. Raw. Simple and surrendered.

Dear Jesus, thank you. I love you. Amen.

Liebster Award

Last week my roommate from my Israel trip and my guardian angel, Tobi, nominated me for the Liebster Award. This is what she wrote in her blog:

The German word Liebster (pronounced LEEB-ster) means sweetest, kindest, nicest, dearest, beloved, lovely, kind pleasant, valued, cute, endearing, and welcoming.  The Liebster Award is given to upcoming bloggers who have less than 200 followers.

Here are the rules:

1.  Each person must post 11 things about themselves.
2.  Then answer the questions the tagger sent for them, plus create 11 questions for the people they’ve tagged to answer.
3.  Choose 11 people and link them in your post.
4.  Notify the people you have tagged.
5.  No tag backs.
Thanks Tobi for nominating me! What a blessing you are! (she’s sitting next to me, second from the left)
Here are 11 random things about myself:
1. I cannot roll my Rs. This did not deter me from taking spanish for four years.
2. I can wiggle my ears, raise my right eyebrow a la villain with a scheme, and “hook” my upper right lip a la Elvis. Apparently the left side of my brain was given more “useless trick” cells than my right side.
3. These are the musical instruments I (have) play(ed): piano, organ, guitar, clarinet, handbells, xylophone, and various auxillary percussion instruments. I cannot get a sound out of a flute.
4. I almost quit piano on the day my teacher introduced me to a piece with four sharps. I just sat there and refused to play. She called my mom and I got in trouble.
5. When I was really little, I fell running in the church and “killed” one of my baby front teeth. It turned black and stayed that way until it fell out.
6. I have an uncanny ability to memorize things, specifically piano music and song lyrics. I often don’t realize I’ve memorized something until a situation presents itself where I have to perform without music. I was in a production of Joseph… in 6th grade and to this day I can sing all the colors in his coat (“it was red and yellow and blue and gold and…”)
7. I am right handed but rest the pen on my ring finger instead of my middle finger.
8. I have an unusual amount of gray hair for my age, which I attribute entirely to Washington DC traffic.
9. My favorite composer is Brahms and my favorite piece to play is his Intermezzo in A major, op. 118 no. 2.
10. I do not have perfect pitch and am thankful for that!
11. When I was in kindergarten I was a big snotty crybaby mess. My brother would get me on the bus to school and we would sing Beatles songs in between the seats and the window (he sat in front of me) with harmony. That was his way of keeping me calm on the way to school.
Questions from Tobi
1.  What is your greatest fear?
      Being forgotten.
2.  Describe yourself in three words.
      Reliable, snarky, evolving.
3.  What is your favorite passage of Scripture?
      Romans 8: 38-39 “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
4.  Name something that’s on your bucket list.
     Go to Paris.
5.  Describe what a perfect day would look like for you.
     Rainy weather, coffee, good conversation with my parents and siblings, and playing with my nieces and nephews.
6.  What is your favorite color?
     Lavender.
7.  Share a brief testimony of how God is working in your life.
     Two years ago God gave me the green light to pursue music therapy. Going back to school and all that it entails has been the hardest season of my life. The uncertainties that go along with grad school (mainly money and my future) have forced me to rely on God continually, which proves to be encouraging and terrifying at the same time.
8.  What is your favorite snack?
     Oh man. Before I cared about my nutrition: Cheezits. After I started caring about my nutrition: pita and garlic hummus.
9.  If you could live anywhere, where would that be?
     London!
10.  Name five things that make you smile.
     My five nieces and nephews.
11.  Why do you write?
     Because sometimes I feel like I’ll go crazy if I keep my thoughts in my head. And I also really really want people to get interested in music therapy.
_____________________________________________
Here are the women I’m nominating!
Ruhiyyih MacBradaigh (no link since her blog is private)
Allie Lovette she might not count because she might have more than 200 followers!
______________________________________________
I know it’s only four! Girlfriends need to step up on the blogging!!
I will keep the questions the same for the people I pick-
1.  What is your greatest fear?
2.  Describe yourself in three words.
3.  What is your favorite passage of Scripture?
4.  Name something that’s on your bucket list.
5.  Describe what a perfect day would look like for you.
6.  What is your favorite color?
7.  Share a brief testimony of how God is working in your life.
8.  What is your favorite snack?
9.  If you could live anywhere, where would that be?
10.  Name five things that make you smile.
11.  Why do you write?

Thanksgiving

Happy Thanksgiving 🙂 So far the holiday has been pretty quiet. Because my family is big and growing, it’s hard for all of us to get together at once so I’ve seen them in bits and pieces this time. It’s nice to be able to have a good conversation and hear about interesting things going on in a family member’s life without 12 other people interjecting and adding their own story. I love when my whole family is together, I am definitely thankful for them. But I am thankful this year for the small doses.

me with my sister-in-law Becky and my brother Matt

During the holiday season I tend to think back to where I was in life this time last year, two years ago, five years ago, etc. It’s always interesting to see how your life has changed over one year. My life is definitely different this year compared to last year. New town, new friends, new chapter in my young life. I am thankful that God made grad school happen for me. Sometimes, logistically speaking, I can’t believe everything worked out so that I was able to start school in the fall. With prerequisites, moving, financial aid, I’m amazed nothing fell through the cracks.

Warning, I’m about to get sentimental. This year is the first year I can remember where I am starting to long for a family of my own. Even having my own dog would be nice, ha. I’m the only one in my family that doesn’t have a significant other. I think holidays generally cause people to feel this way. It’s funny, I catch myself glancing up at God with an expectant look as if He doesn’t already know my desires. I picture him shaking his head with a knowing smile on his face and a chuckle. I do believe it’s in the cards for me to have my own family someday. He’s got it under control, for which I am thankful. So I’m just trying to trust His timing.

Lastly, I am thankful for the steadfastness of God. I’m thankful that He keeps picking me back up and putting me on the right path when I stray. I’m trying to be content with how He made me. Along with reflection during the holidays, I develop an unhealthy dose of insecurity. Wanting to live up to the expectations of my family and friends, most of whom I don’t see very often. It really eats at me. This year I find myself clinging to God. He couldn’t be more proud. And He’s the one who matters most. My insecurity melts into peace. Psalm 27:14 – “Wait for the Lord; be strong and take heart and wait for the Lord.”

Happy Thanksgiving!