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"I came to learn what is means as a poet to be the person who can sit with those profound, profound, essential human experiences, and to let them happen, and to not fight them, and learn from them.   

I never would have thought before that it was a privilege for someone to let you be intimate with them as they move towards dying.   

But it was.  And I think I understood that because I was having and raising these little babies." 

Neonatology 

"[...] birth is like jazz,

from silence and blood, silence
then everything,  
jazz."

and then Autumn Passage. 

"On suffering, which is real.

On the mouth that never closes,
the air that dries the mouth.
On the miraculous dying body,   
its greens and purples. [...]" 

Crave Radiance: New and Selected Poems 1990-2010 Publisher: Graywolf Press Date: 2010 Language: English Available at: amazon.com graywolfpress.org

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Rachel Flotard is front woman to a Seattle based indie pop group called Visqueen. Their most recent album "Message to Garcia" was released this fall on Rachel's own label Local 638 Records.

The album is really an epitaph to Rachel's father who died April 7, 2008. Rachel spent 7 years living with and care giving for her father who was diagnosed and ultimately died from prostate cancer. Their house was his hospice, and her album, though upbeat was really inspired by the journey she was on with him as he died.

She told Ari Shapiro in an interview on All Things Considered, "Where I was, was in a hospital, or watching Raiders of the Lost Ark for the fiftieth time with my dad and making him a meal he couldn't keep down, this is where I was"

The only slower ballad on the album, is also the song with overt ties to her fathers death, called "So Long". The lyrics are as follows:

I'm gonna live after your gone
and I'm sorry that it took so long

I'm gonna cry I'm gonna moan
but I want it to be on my own.

I'm gonna write while you're in bed
gonna say things for the first time with my own soft hand
I'm gonna tell them all about you
What you did for me all of my life
Now an epiphany, in one dark night
and I 'm sorry, so sorry
that it took so long

What we knew never rested, to stay
I could spend forever apologizing, for one last day
taking with you what you needed to know
that it's all right to turn around and watch me go

And I'm sorry, so sorry
that it took oh it took so long
so long. And I'm sorry that it took so long.

Finishing this song before her father's death, Rachel actually played it for him. She says in her interview with Ari, "I played it for my dad once.... not realizing that the lyrics were like 'you're going to die pal'... he was like "is that about me?" (she laughs as she finishes), "and I told him 'no' and I think we went upstairs and had pea soup." Ironic that the lyrics of the song say "I'm going to say things for the first time" implying an honesty and openness, that when it came down to it, was too difficult to acknowledge.

Even the title of the album honors her father. There was an essay written by Elbert Hubbard in 1899 entitles Message to Garcia. The essay was about a solider tasked to preform a daunting mission by getting a message to a Cuban general named Garcia. The key is that this solider asked no questions, made no objections, requested no help, but accomplished the mission. It extols an attitude of working without complaining.

Her father gave Rachel this essay when she was 18, and was constantly referenced by her father. Whenever facing challenges, he father would say, "Are you delivering it [the message to Garcia]" In other words, don't complain, you can accomplish this. Apropos then for a title of an album created in the grief and challenges of loosing a parent. She made no objections, kept working, and in this album, the mission was accomplished; a beautiful epitaph to George Edward Flotard Jr.

I recommend listening to So Long from a link on the left at the All Things Considered interview.
You can see an interview of Rachel and the band from CW11's Underground series below. Her father appears at mark 6:35 in the interview.

Photo of Rachel and father: copyright Steven Dewall

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Judith Fox is a writer and photographer based in Southern California. Eleven years ago, having just been married to Dr. Edmund Ackell 3 short years, Judith's multi-talented husband was diagnosed with Alzheimer's disease. This strong, intelligent man, who has been a surgeon, pilot, artist, athlete and president of Virginia Commonwealth University is now the subject of Judith Fox's book "I Still Do: Loving and Living with Alzheimer's Dementia" published by powerHouse Books in Oct. 2009.

She says in an interview posted on the powerhouse website, that as a photographer, taking pictures of him was another way of loving him. In fact, it allowed her to see him more clearly.

I am always on the hunt for photographic memoirs centered around end of life issues, and this book certainly captures end of life themes. The book is 128 pages, with intimate photographs of her husband and thoughtful insights by the author to accompany the images.

Judith writes, "Alzheimer's doesn't announce itself with an ache, a pain, a limp. It rolls in like a fog. It dissipates. It leaves space for denial."

How often I hear this when speaking with families whose loved ones are in the end stages of dementia. "When did the symptoms start?" I'll ask, and always there is a hesitation. It is a fog, so gradual and faint at first, most don't even notice it's presence.

I find this photograph from the book extremely poignant when coupled with Judith's words. The illusion is as if the rest of the "real" Ed has vanished, with only a hand remaining. Next to the photo she writes that dementia, "Unveils the person we married and then replaces him with someone who doesn't know our name".

There are tender moments captured, where Ed sleeps with their cat, or rests in a chair. But there are also photo's that you see in his eyes a question. As though he is not quite sure what's occurring, or even who the photographer is.

She is very honest in her accounts as caregiver. I particularly resonated with her thoughts on delirium. She writes, "Who thought up the innocent-sounding euphemism 'sun-downing' to describe the anxious and erratic early-evening behavior? Let's be honest, here. How about 'howling at the moon'? How about 'clawing at the walls'? How about the 'twilight zone'? 'Sun-downing'? PLEASE. "

Overall the book places a soft focus on a devastating disease. Although honest in her account, one walks away with the feeling of her love and commitment to this man, instead of feeling doomed and exhausted from the disease. I suppose that's why the title is "I Still Do".

To see more photos, you can check out a series of 13 of the photographs located at Judith Fox's photography site here. To hear the author speak and read a few passages go to the powerHouse website here.

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Married couple Ed Kashi, a photojournalist, and Juli Winokur, a filmmaker/writer, spent years working on their book "Aging in America: The Years Ahead". The book and photos, worthy of viewing, deal with the challenges facing the population over 65, but is also about America's collective denial of aging. Both agree that it was their experience with the project that helped them cope when they found themselves personally affected by the reality of aging in their own family.

Julie's father, diagnosed with end stage dementia, got to a point he couldn't live alone. The couple, with their 2 kids in tow, opted to move from California to New Jersey, so they could become his full time caregivers. They became one of the estimated 15 million known as the sandwich generation, taking care of both their own parents and children at the same.

They spent the 18 months he was in the home documenting the experience in film and photos. They offer a 2 part short documentary entitled "The Sandwich Generation" that can be viewed freely online. Part I is 11 mins and takes place in the first months of his arrival. Part II is 16 mins and summarizes much of Part I, but then goes on to show a wiser, more tired family.

This is one of Ed Kashi's photos from the movie of Herbie Winokur, who died Jan. 5, 2008 in the family's home.

I was struck by three things in this wonderful documentary. In Part I, Herbie is taken to the hospital after a fall at home and seems to have a prolonged stay, meanwhile deteriorating. The family becomes restless with the hospital and at one point Ed Kahsi says "Get him home, make sure he eats and is stimulated, who cares what the diagnosis is". I thought how true this sentiment can be with the people we work with. There comes a tipping point at times when it's more important to be home than to have all the why's answered.

There is also a lovely contrast seen between part I and II with the granddaughter. She speaks in part I about how good it is that "poppy" is living with them. But in part II says to her mother "Should I be honest? Because I wasn't in the first part." Her mother then draws out some resentment and awareness of "how much things changed" in the household when Herbie came to live.

Finally, an emotion caretakers often have, frustration and anger comes out with Ed on a day that Herbie gets confused while out on a walk and doesn't want to go home. Ed gets in his face, frustrated that he doesn't remember the hired caregiver who's worked with him for 2 years. It's a very honest moment, and a good reminder on how tough care giving can be.

If you have the time, check out the links for the movies. I think it's a realistic look into care giving and causes me to be more aware of the stresses the families that I see everyday are going through.

References: The non profit group that houses much of Ed Kashi and Julie Winokur's work "Talking Eyes Media" at http://www.talkingeyesmedia.com/
Part I can be seen at http://www.mediastorm.org/0009.htm
Part II can be seen at http://assets.aarp.org/external_sites/caregiving/multimedia/LifeWithHerbie.html

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The mellow surf folk of Jack Johnson can make you feel relaxed to the point where you listen to the lyrics and may miss the point completely. This happened to me with the song "Go On" from his most recent album "Sleep Between Static" released in early 2008. (Song from iMeem below is not the album version, YouTube Video is not the official video)



The song was on my iPod along with many other Jack Johnson tunes for my trip to Australia so when I picked up a Rolling Stone with Jack on the cover, I was surprised to read the story behind this song.

Jack and his family had cared for his wife's cousin Danny Riley, a 19 year old who died from a brain tumor in October of 2007. The album itself has a dedication "In Loving Memory to Danny Riley." In caring for him Jack found many parallels between caring for a dying loved one and raising his own children. "It's about learning how to let go of someone you love," he says, "watching them swim away."

As a father of toddlers, I could see so much how in raising them I am slowly having to let go, which parallels so much of what hospice tries to help teach families and patients as they face death and dying. After learning of the meaning behind this song, a young man I was caring for died. As the family was preparing for his funeral services, the songs dual meaning for parents losing their child seemed appropriate to suggest to them. They took the song and made a wonderful video tribute to him.

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Songs about loss are rarely upbeat enough to get you moving in your car, but for me "Starlight" by the English alternative/progressive rock band Muse manages to combine sorrow and loss with rock and roll supported by a driving bass line to make a catchy song with some deeper meaning. Muse is a band whose music leans towards more sullen material, and some critics of the band chastised this song for being too pop-oriented. Overall their music style is defined by the music genome project as frequent use of minor key tonality, subtle use of piano and some electronica influence. This song exemplifies these traits well with simple piano and guitar melodies, with more space-rock bridges breaking the song into two very different feels.

Here is the video from YouTube. The visuals of the video below are not highlighted in this post. Pay more attention to the audio and lyrics.

(If the video does not display click the title of the post)

In "Starlight" the band makes use of outer space, a common theme on this album, as a metaphor for loss and distance. The ship taking the singer 'far away' could be an allusion to disease, especially one like Alzheimer's which erases the memories of the important people in your life. Or more generally, the decreased level of consciousness as someone gets closer to death.

"Chasing a starlight" can have multiple meanings in reference to end of life. On a very obvious level 'seeing the light' is commonly perceived as an experience of someone near death. And then when combined with star, the light could be a thinly veiled reference to the 'stars in heaven.' But why would the protagonist of the song be 'chasing the starlight?' Here you can start to explore many different questions.

Could the 'starlight' be thought of an ideal, perfection, purity or some unobtainable goal? This impression makes more sense when he wonders if the effort "is worth it anymore." Is trying to be good and perfect the reason to get to a wonderful afterlife? Or is the person reflecting on the good (starlight) he has striven for which now appears to 'mean nothing' since he is dying? I will note the band stated this is a "a love song about missing someone, friends, family, someone you love" and therefore not explicitly about dying.

The bridge/chorus gets more aggressive with crunchy guitar chords, as if he is fighting the loss, with the lines, "I'll never let you go, if you promise not to fade away." This line switches the perspective as most people working with Alzheimer's see the patient as the one slipping away, but if you (as the patient) are slowly losing your memory and ability to communicate, it can also seem like everyone else is fading away from you. Much like some weird palliative care Doppler effect; who is fading from whom?

"Black holes and revelations" is the name of the album and also a key lyric in "Starlight." This is made even more important when paired with the line of "our hopes and expectations." Palliative care is about finding 'hope' and managing 'expectations' when discussing the uncertainty of the future of a medical illness. But when patients and families 'hopes and expectations' are not managed well it may seem like 'hope' get dashed into a 'black hole' never to escape. Any information contrary to current 'expectations' then becomes a dramatic 'revelation.' Other influences regarding spirituality and end of life issues could be made with the Biblical Book of Revelations, or the unknowable of what exists in a black hole, echoing the uncertainty about what happens after death.

For those who liked this song, some of Muse's other songs highlight issues relevant to palliative care and spirituality including "Thoughts of a Dying Atheist," "Sing for Absolution," "Time is Running Out" and others.

"Starlight" by Muse (Bellamy) from the album "Black Holes and Revelations" (2006) from Warner Bros. Records.

Lyrics

Far away
This ship is taking me far away
Far away from the memories
Of the people who care if I live or die

Starlight
I will be chasing the starlight
Until the end of my life
I don't know if it's worth it anymore

Hold you in my arms
I just wanted to hold
You in my arms

My life
You electrify my life
Let's conspire to re-ignite
All the souls that would die just to feel alive

But I'll never let you go
If you promised not to fade away
Never fade away

Our hopes and expectations
Black holes and revelations
Our hopes and expectations
Black holes and revelations

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Finding this song about death in the ICU almost seems too easy when you consider the name of the band, Death Cab for Cutie (DCFC), but I had actually listened to this song for a long time before my friend Laura Morrison made me listen closely to the lyrics at a palliative care conference. (For your indie-rock Jeopardy knowledge, the name of the band comes from a send-up of Elvis in The Beatles Magical Mystery Tour.)

For those of you that don't know any 20-somethings, Death Cab for Cutie is an alternative rock band from Washington State, often hailed as a darling in independent/alternative music circles. The common themes of DCFC's music are love and loss with some very catchy melodies and intelligent lyrics quite distant from most pop cliches. A critic noted Ben Gibbard, the lead singer/songwriter, often writes to

'immortalize watershed moments. Whether that moment for each of us is the moment love begins or ends, passing romances, death or chance encounters, there is a Death Cab for Cutie song about it.'

Therefore you can see the popularity amongst teens and young adults.



(For subscribers, If you do not see the Immem widget for listening to the song, click on the title to go to the original post on Pallimed: Arts & Humanities)

DCFC have a few songs to be featured in upcoming posts, but for now we will focus on "What Sarah Said," from the 2005 album "Plans." (I highly recommend the whole album.) It opens with a haunting piano melody reminiscent of the repeated beeping from telemetry monitors in a hospital. Within the repeating melody you hear a second melody beginning with ascending notes with a hopeful sound, that slowly fades and descends into a soft melancholy plateau in the background. The same ascending/descending 2nd melody comes back again in the second verse with the ascending portion coming with the only positive emotion in the lyrics "But I knew that you were a truth..." The ascending portion of that melody never makes its presence again in the song until near the very end. Every line in this song represents the difficulty of being the family or friend of someone ill and dying in the ICU. The two lines I find most insightful are:

"And it came to me then that every plan is a tiny prayer to Father Time"
"And I looked around at all the eyes on the ground as the TV entertained itself"

Even making a simple plan of what you will do in the next five months, five hours, or five days, is dependent on actually surviving. Father Time and the Grim Reaper are connected by their tool, the scythe, which marks the end for one year's crop so another may grow. And it is nearly impossible to walk through a hospital without finding a television left on in a room where no one is paying any attention, and so it sits blaring reality shows and local news, everyone oblivious to its constant chatter. Even the patient for whom the TV is left on, will often dismiss the importance of leaving it on. The final lines encapsulate what palliative care staff see daily as family and friends witness the dying as a final act of love by just being present.

"But I'm thinking of what Sarah said that "Love is watching someone die."So who's going to watch you die?.."

This presence at the bedside of a dying person can be a demonstration of your love, but it can also tax and exhaust family. A variation on this line ("Love is watching someone die") is occasionally heard from palliative care professionals to allow family credit for the 'work' involved in being present at the deathbed. It is interesting to take the line "So who's going to watch you die" out of a palliative care context, as people may have a much different perception. It would be relatively easy to assume you are watching an action movie and the villain is saying this as some sort of threat to the good guy. Superficial, threatening, maybe hateful. But in the right context the same words can bring forth thoughts of love, loss and tears.

You may also notice that with the first mention of "So who's going to watch you die", the music is relatively absent except a few piano chords, until the keyboards come back in with a insistent driving rhythm, followed all together with a guitar strum (inhaled breath), a fingerpicking guitar melody (will to live), cymbals/hi-hat (neurological activity), organs (the EKG), snare drum (interventions of medicine), the main piano melody (emotions and love), and the lifting second piano melody (hope). All this as if the person had been brought back to life one last time. But then sadly just as the instruments regain some strength they begin to fade again each one going out one by one. To help you see what I hear, I have made a video to show these different elements. (To hear all the instruments clearly, use headphones and an original recording.)




Now available on You Tube (8/5/8) if you want to embed it on your site or see it in full screen version.
(Removed because of YouTube's copyright rules 12/08 - but still available on Google Video)

Yes there is a two-tone sound reminiscent of a doorbell at the end of the song. It is hard to hear in this video clip, but it is there. Do you hear anything different in the instrumentation?

DCFC's new album "Narrow Stairs" came out in May 2008. (It is very good.)

"What Sarah Said" by Death Cab for Cutie (Gibbard/Walla) from the album "Plans" (2005) from Atlantic Records.

Lyrics:

And it came to me then that every plan is a tiny prayer to Father Time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I’ve already taken too much today
As each descending peak on the LCD took you a little farther away from me (Away from me)

Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
And I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself

'Cause there’s no comfort in the waiting room&
Just nervous pacers bracing for bad news
And then the nurse comes ‘round and everyone lift their heads
But I’m thinking of what Sarah said,

"That love is watching someone die."

So who’s gonna watch you die?