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If you ever write a 9 minute song you would hope it would be a good one. There are only a few 9 minute plus songs in my song collection but "The Trapeze Swinger" by Iron and Wine is one that stands out. If you have any familiarity with it you may remember it from the end credit sequence in the moderately memorable movie "In Good Company."

Hypnotically repetitive, I would occasionally put this song on repeat to fall asleep to when I lived alone during my palliative medicine fellowship (and my wife had to be in another city for her fellowship.) At first I took the 'please, remember me' line to be more about my long-distance relationship with my wife, but as I continued to listen to it falling asleep after long days of being surrounded by dying people at the hospice house the meaning clearly evolved.

Since the song is so long go ahead and start listening to it as you read the rest of this post.


Iron and Wine is really a one man band led by Samuel Bean. The simple strong structure repeats through the song with little accents placed on each verse by different instruments or Bean's voice. The back and forth nature of the song structure reminds me of being at the beach watching the waves come crashing in and then slowly recede.

The intro begins with soft wind chimes and what sounds like sea shells or a rain stick followed by the basic guitar melody and a chorus of 'oohhh-ohhhhhs.' As the song advances we hear a ton of different instruments: slide guitar, bass guitar, wood blocks, tom toms, percussive metal, an organ played in reverse, tympani drums, upright bass (around 4:53 - my favorite part!), a song played in reverse, piano, and finally a toy whistle. All of these instruments begin to layer into an increasingly complex sound. I can't imagine being the sound mixer on this song!

The lyrics obviously focus on a theme of rememberence and like the instrumentation the repetitive nature allows for different takes on the same theme. here are the first lines of all the verses laid together.

Please, remember me happily
But please, remember me fondly
And please, remember me that Halloween
So please, remember me mistakenly
And please, remember me as in the dream
But please, remember me, my misery
And please, remember me seldomly
So please, remember me finally

The perspective of the dying person wanting to instruct those still alive on how to keep the memory (and the legacy) alive is commonly seen in hospice and palliative care. How we as friends, family or staff enhance or suppress this legacy building is not often talked about as openly as this song manages. How would caring for a person who is dying be different if we spent some time with them asking how they would like to be remembered?

There are many religious references in the song, but each of them comes with a little bit of the singer's reality. Imagining the heaven with obscene graffiti, or rushed angels who want to get all the new souls through the door place an potentially unknowable realm in earthly terms.

Overall, Bean gives us a bit of poetry mixed with american folk and indie pop that allows you to discover a little something new with each listen. Please share any lines in this song stand out the most to you.

Lyrics by Iron and Wine (aka Samuel Bean) 2004

Please, remember me happily
By the rosebush laughing
With bruises on my chin, the time when
We counted every black car passing
Your house beneath the hill
And up until someone caught us in the kitchen
With maps, a mountain range, a piggy bank
A vision too removed to mention

But please, remember me fondly
I heard from someone you're still pretty
And then they went on to say
That the pearly gates
Had some eloquent graffiti
Like "We'll meet again" and "Fuck the man"
And "Tell my mother not to worry"
And angels with their great handshakes
Were always done in such a hurry

And please, remember me that Halloween
Making fools of all the neighbors
Our faces painted white
By midnight, we'd forgotten one another
And when the morning came I was ashamed
Only now it seems so silly
That season left the world and then returned
And now you're lit up by the city

So please, remember me mistakenly
In the window of the tallest tower
Calling passers-by but much too high
To see the empty road at happy hour
Gleam and resonate, just like the gates
Around the holy kingdom
With words like "Lost and found" and "Don't look down"
And "Someone save temptation"

And please, remember me as in the dream
We had as rug-burned babies
Among the fallen trees and fast asleep
Aside the lions and the ladies
That called you what you like and even might
Give a gift for your behavior
A fleeting chance to see a trapeze
Swinger high as any savior

But please, remember me, my misery
And how it lost me all I wanted
Those dogs that love the rain and chasing trains
The colored birds above their running
In circles around the well and where it spells
On the wall behind St. Peter
So bright, on cinder gray, in spray paint
"Who the hell can see forever?"

And please, remember me seldomly
In the car behind the carnival
My hand between your knees, you turned from me
And said, "The trapeze act was wonderful
But never meant to last", the clown that passed
Saw me just come up with anger
When it filled with circus dogs, the parking lot
Had an element of danger

So please, remember me finally
And all my uphill clawing
My dear, but if I make the pearly gates
I'll do my best to make a drawing
Of God and Lucifer, a boy and girl
An angel kissing on a sinner
A monkey and a man, a marching band
All around a frightened trapeze swinger

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In putting together our talk for the academy meeting (music with palliative themes for self care) we had a lot of material to work with. We couldn't possibly talk about all of the music we know to have these themes. There were a lot of... I won't say rejects, as they are still great songs. We'll call them honorable mentions. I want to give an honorable mention today to the Canadian folk rock indie band The Weakerthans and their album Reconstruction Site.

This 2003 album is structured around three songs, which are conveniently placed within parentheses so you know which ones they are, (Manifest), (Hospital Vespers), (Past Due). All three songs are written in more of a sonnet form then a typical song. To me they seem more like poetry than songs. The lyrics are even written out on their website in a paragraph form, not the typical form used for song lyrics.

The first of the three songs, (Manifest), starts out as some type of call to action. Maybe its the beginning of a life philosophy. Like wanting to see and notice everything. Take nothing for granted. The song is very upbeat, optimistic about life. It has an almost military type beat that makes it seem even more like a call to arms. Here is a link to the album and the lyrics are below.

I want to call requests through heating-vents, and hear them answered with a whisper, "No." To crack the code of muscle, slacken, tense. Let every second step in boots on snow complete your name with accents I can't place, that stumble where the syllables combine. Take depositions from a stranger's face. Paint every insignificance a sign. So tell me nothing matters, less or more. Say, "Whatever we think actions are, we'll never know what anything was for." If "Near is just as far away as far," and I'm permitted one act I can save, I choose to sit here next to you and wave.

The middle song, (Hospital Vespers) is below.

Doctors played your dosage like a card-trick. Scrabbled down the hallways yelling "Yahtzee!" I brought books on Hopper, and the Arctic, something called "The Politics of Lonely," a toothbrush and a quick-pick with the plus. You tried not to roll your sunken eyes, and said "Hey can you help me, I can't reach it." Pointed at the camera in the ceiling. I climbed up, blocked it so they couldn't see. Turned to find you out of bed, and kneeling. Before the nurses came, took you away, I stood there on a chair and watched you pray.

Now, I won't tell you I completely understand every line. (Per internet lore, "The Politics of Lonely" may be an obscure reference to a chapter title of a book about an explorer. Who could know?) But a song is what the listener gets out of it. To me this speaks to a feeling of disconnect with the medical community. A lot of references to games "card-trick", "scrabbled", "Yahtzee" like the singer feels it's all one big experiment, like a game. I think the overall sentiment is that the hospital is dehumanizing. The patient feels the need to hide away themselves, emotions, spirituality from the hospital community (with the camera as the symbol for that community). Open to interpretation. The music becomes very strange, I thought a bit eerie.

The last song of the album, (Past Due), is much more obvious. The music lightens up. You hear tinkling bells. It sounds like a conclusion. I'll leave the interpretation to you.

February always finds you folding local papers open to the faces "passed away," to wonder what they're holding in those hands we're never shown. The places formal photographs refuse to mention. His tiny feet, that birthmark on her knee. The tyranny of framing our attention with all the eyes their eyes no longer see. And darkness comes too early, you won't find the many things you owe these latest dead: a borrowed book, that cheque you didn't sign. The tools to be believed with, beloved. Give what you can: to keep, to comfort this plain fear you can't extinguish or dismiss.

The album seems to be telling a story with these three songs as the plot: hope, loss, grief, then resolution. Rebuilding life after a loss. Reconstruction, if you will.

Some of the criticism this album got is that it may be a bit too literate. These songs aren't really meant to be sung in the shower. They are meant to be over thought, which is not always what I'm in the mood to do when listening to music. But when I looked at it more like poetry set to music, I think I appreciated it more. In these songs, nothing is accidental. Every word, every note is well thought through and gives meaning. That meaning may at times be so obscure that maybe we weren't meant to completely get what was in the songwriter's head. Maybe we were meant to interpret it for ourselves and give it meaning that is significant to us.

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In the despair of her lover's denouncement, his likely execution, and in the midst of thwarting Scarpia's aggressive tactics, Tosca sings the haunting prayer in the aria, "Vissi d'arte, vissi d'amore"

Lyrics: I lived for art, I lived for love/ I never did harm to a living soul!/ With a secret hand I relieved as many misfortunes as I knew of./ Always with true faith my prayer/ rose to the holy shrines./ Always with true faith/ I gave flowers to the altar./ In the hour of grief why, why o Lord?/Why do you reward me thus?/ I gave jewels for the Madonna's mantle/ and I gave my song to the stars, to heaven, which smiled with more beauty./ In the hour of grief why, why, o Lord, ah, why do you reward me thus?

Although Tosca herself is not dying, she is singing in the realization that she will soon lose her lover, and I see contemporary palliative care themes in this prayer. This type of plea could easily be whispered by family members at the bedside of one dying or by the patient them self.



First there is the accounting of worth. We reflect on our character and persona. For Tosca her list includes a passion for love and art, a humble generosity (secret hand relieving misfortunes), and a respect for others (no harm).

Second is an evaluation in accordance to our faith traditions. Tosca lists her offerings of flowers and prayers in the shrines and alters, and jewels for Madonna.

Finally is the assessment of career and external works. Tosca was a singer, so she reflects that she sung and the world was more beautiful from her contribution.

Aren't these classic elements of reflection? Who we are internally, externally and if appropriate, who we are in accordance to our faith tradition?

The purpose to Tosca's reflection, however, is really a question. What strikes most listeners, endearing this aria to audiences, is the timeless question, "why?". Why do bad things happen to good people?

Listening to this aria with the 'why?' in mind, you will hear the despair and the grief in Tosca's words. Perhaps this song can help us to explore with others those deeper areas for reflection.

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The annual assembly for the AAHPM is this week in Boston, MA. There are a few plugs we wanted to put in for the Pallimed family if you'll be attending.

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This post was inspired by a book I recently read, This Republic of Suffering: Death and the American Civil War by Drew Gilpin Faust. If you happen to be attending the AAHPM Annual Assembly next month, this is the book that will be talked about in the first ever AAHPM Book Club (link to AAHPM blog that talks about the book) (Saturday, March 6 from 12:15-1:15). I know from the Pallimed group Amy, Christian and I will all be in attendance, so read the book and come join us!

American poet, Walt Whitman, was born in 1819. He is perhaps best known for his collection of poetry Leaves of Grass which is perhaps best known for its controversial sexual themes. Whitman initially published this collection of poetry in 1855 but he continued working on it, adding more poetry until right before his death in 1892. What I didn't know about Whitman until reading Faust's book was his involvement in the American Civil War and how his experiences shaped his poetry.

Whitman's brother was a soldier in the Union Army. When Whitman heard that he had been wounded, he hurried to Virginia to be with him. His brother had only minor injuries but he found many who were much worse off. He began visiting the soldiers. He would spend time with them and write letters home for them. He would also write letters to soldiers family members to tell them of the soldier's death, providing reassurance that they had had a good death. His poetry reflected this experience.

Below is the poem "Pensive on Her Dead Gazing, I Heard the Mother of All", written after the end of the war.

PENSIVE, on her dead gazing, I heard the Mother of All,
Desperate, on the torn bodies, on the forms covering the battle-fields gazing;
(As the last gun ceased—but the scent of the powder-smoke linger'd;)
As she call’d to her earth with mournful voice while she stalk’d:
Absorb them well, O my earth, she cried—I charge you, lose not my sons! lose not an atom;
And you streams, absorb them well, taking their dear blood;
And you local spots, and you airs that swim above lightly,
And all you essences of soil and growth—and you, my rivers’ depths;
And you, mountain sides—and the woods where my dear children’s blood, trickling, redden’d;
And you trees, down in your roots, to bequeath to all future trees,
My dead absorb—my young men’s beautiful bodies absorb—and their precious, precious, precious blood;
Which holding in trust for me, faithfully back again give me, many a year hence,
In unseen essence and odor of surface and grass, centuries hence;
In blowing airs from the fields, back again give me my darlings—give my immortal heroes;
Exhale me them centuries hence—breathe me their breath—let not an atom be lost;
O years and graves! O air and soil! O my dead, an aroma sweet!
Exhale them perennial, sweet death, years, centuries hence.

In this poem, Whitman hears the "Mother of All" mourning the loss of the fallen soldiers. She asks the earth to absorb them well and hold on to them for her so that they are part of the earth for centuries, immortal as part of the air and soil.

Whitman was also very moved by the death of Abraham Lincoln. He wrote the famous poem "O Captain! My Captain" in response to his death.

O Captain my Captain! our fearful trip is done,
The ship has weathered every rack, the prize we sought is won,
The port is near, the bells I hear, the people all exulting,
While follow eyes the steady keel, the vessel grim and daring;
But O heart! heart! heart!
O the bleeding drops of red,
Where on the deck my Captain lies,
Fallen cold and dead.

O Captain! my Captain! rise up and hear the bells;
Rise up--for you the flag is flung for you the bugle trills,
For you bouquets and ribboned wreaths for you the shores a-crowding,
For you they call, the swaying mass, their eager faces turning;
Here Captain! dear father!
This arm beneath your head!
It is some dream that on the deck,
You've fallen cold and dead.

My Captain does not answer, his lips are pale and still;
My father does not feel my arm, he has no pulse nor will;
The ship is anchored safe and sound, its voyage closed and done;
From fearful trip the victor ship comes in with object won;
Exult O shores, and ring O bells!
But I, with mournful tread,
Walk the deck my Captain lies,
Fallen cold and dead.

In Faust's book, she points out that Lincoln's grand funeral was like a surrogate funeral for all those who died in the war who did not have a "proper burial". Their families didn't have the opportunity to say goodbye in that way. Often they didn't even know the exact fate of their loved one. They were just presumed dead. Whenever I have read "O Captain! My Captain" in the past, I always read it pertaining just to Lincoln. Now I wonder if it doesn't have a broader meaning. Maybe Whitman wasn't just thinking about Lincoln, but about all the civil war dead.

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Can't always get to a computer to get to Pallimed?  Well now iPhone (and iTounch and iPad) users have an option to read Pallimed and Pallimed: Arts and Humanities (including comments to both blogs) with the very first Pallimed FREE iPhone app.

by Pixel 196,5

Simple, well thought-out, a great way to keep up with the latest information in palliative care. I've never read this blog before but I'll be following it regularly now! Thank you for doing this.

You are welcome Pixel 196,5!

If you have an iPhone we encourage you to get the FREE Pallimed iPhone app and review it.  Maybe it will rise in the standings and more Pallimed naive people may get the app and learn more about hospice and palliative medicine issues.

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If you were to non-verbally depict the emotion of grief, I would assume many would strike a pose of head in your hands. This simple gesture I found in countless photographs and paintings as I searched for this weeks art collection of pieces with the title "Grief".

I tried to find less traditional images, however, I've always liked this oil painting by Gene Gould, "Grief" (c1965). Though with that same pose, it conveys much with the colors used and the drips of paint.

With similar color scheme and graphic representation of body posturing is this piece to the right by Gustave Miller entitled "Grief".


Both of these imply a solitary grief, but consoling and shared grief is also important. I found an artist named Linda Branch Dunn who keeps a website of her pieces. She works mostly with fabrics. This was an interesting look at an artist's work in progress. The first photo to the left is a fabric piece entitled "Grief" (2007), depicting 2 people in embrace. She mentions being inspired by a photo after a bombing. Click on the image to see the exquisite detail of the stitching.


What is interesting is that she mentions just framing it, but then changes course, as she adds much more color and fabric, leading to a different piece, the title changing to "Fractured" (2007). I find the pieces completely different, even though you still see the original in Fractured. Which one do you like better?





Moving into a bit more abstract is this piece by Pat Goslee, a mixed media on paper called "Grief Underneath" (2008). The impression the piece leaves me with is that of someone, again head down, clutching their gut. However, as is the case with more abstract works, you may see something completely different. The color scheme is less gloomy the the first 2 pieces.





For the sculpture contribution to this gallery edition, I've chosen the work by Henri Laurens (1885-1954) called "Le Douleur (Grief)". What is ironic is that it adorns the grave of it's creator in Paris. Did Henri have in mind his own death as he worked on the piece? Perhaps it was anticipatory grief, a phenomenon we talk of often in palliative medicine. Again the figure hunches inward, grasping what seems to be a pillow.

The common theme of most of the works does seem to be physically posturing inward. Is that because emotionally grief brings us inward?

If you like these gallery posts do check out the previous installments of "Last Breath", "Pain", "Afterlife", "Restless", and "Stillness".

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Every time I make the 4 1/2 hour drive to see my parents, I can't help but notice the large number of crosses, flowers, even teddy bears and balloons that adorn the roadside. Some are very well maintained, even beautiful while others make me wonder where memorials cross the line into littering. (The photo to the right is a memorial placed on the roadside where a murdered women's body was found.) When I've encountered a particularly eye catching memorial, I will admit to slightly slowing down to check it out. What I never realized until I started researching this post is how very controversial these memorials are.

The Room for Debate Blog, run by the New York Times, had a very interesting post about the ongoing battles being had over these sites. They brought in several different experts to argue both sides of the issue. Are they memorials or distractions? Beautiful folkart or driving hazards?

Attorney Robert Tiernan successfully defended a man who was accused of illegally removing a roadside memorial. He argues that these memorials are themselves illegal. They use public property for private uses. Crosses and other Christian symbols placed in public places are a violation of the separation of church and state. Memorials are a distraction and a hazard as mourners will commonly stop at inappropriate places to visit and maintain them. They are often elaborate and anchored to the ground which could be a hazard if a motorist lost control and hit one.

Another one of the blog panelists, anthropologist Sylvia Grider argues that it is a very old practice, brought over to Mexico and the Southwest US in the 17th century from Spanish colonists whose custom was to mark the site of death with a small cross. They are called descansos. And she argues that these are sacred sites, not necessarily religious even though they may contain religious symbols.

"I regard the attempts of various authorities to legislate or regulate this custom as futile and misguided because those who feel the need to memorialize their loved ones near the roadways where they died will continue to do so, regardless of legislation or other attempts at control. In many cases, where authorities have removed roadside shrines, families and loved ones simply replace them. Tradition is a powerful force in society."

So where do the states come down on this issue? Some states like Colorado, Wyoming and West Virginia put up their own memorials to cut down on the safetly issues with mourners stopping to maintain sites. (To the left are the signs placed by the state of Wyoming.) In New Mexico, where the custom is so strong, it is a misdemeanor to remove or vandalize sites. California and Montana allow memorials but only if alcohol was involved. Wisconsin and New Jersey limit the amount of time a memorial can be up. Delaware has developed a sort of roadside memorial park at some highway exits with reflection pools and victims names engraved on red bricks. This is meant to discourage the placement of memorials by giving families a safer place to grieve. Currently, many states have laws regarding roadside memorials.

Below is a clip from "Resting Places" which is a documentary on roadside memorials. The three people interviewed are lawyer Robert Tiernan, roadside memorial investigator/photographer David Nance and a mother who made a roadside memorial to her son.



This is obviously a much hotter issue than I first realized. I'm not sure what side I come down on. On one hand, it's the job of state governments to keep public spaces clean and hazard free. On the other hand, do state governments cross a line when they dictate how people can and can't grieve? My thought is that there needs to be some sort of meeting in the middle, such as the memorial parks they have in Delaware or the memorial signs that Wyoming places. What do you think?

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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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A young boy's parents are violently murdered. His mother, in fact, died protecting him from the murderer (Voldemort). His is sent to be raised by a family who at best neglects him, at worst abuses him. He continues to be stalked through his adolescence by the same murderer who took his parent's lives. Some pretty heavy stuff, especially for a series of children's books. In the Harry Potter series the theme of death comes up over and over again. (If you're not familiar with the series, please read the Wikipedia page linked to above.)

In one interview the author, JK Rowling, commented, "My books are largely about death. They open with the death of Harry's parents. There is Voldemort's obsession with conquering death and his quest for immortality at any price, the goal of anyone with magic. I so understand why Voldemort wants to conquer death. We're all frightened of it." Given that so much of her books are about death, I wanted to take a closer look at how death is viewed within the series.

First off, death in the series is irreversible. No spell can bring back the dead. In a world with so much magic, death seems to be one of the few absolutes. There are ghosts who are said to have feared death so much they didn't cross over. There is magic that allows the dead to be seen. But nothing that brings them back.

For the most part death is something carried out by the evil on the good. This is a tendency of many children's books/movies. Even given this, death isn't always portrayed here as the ultimate bad. "To the well-organised mind, death is but the next great adventure." (Sorcerer's Stone) There are conversations that suggest there are worse things than death, namely being unable to love.

Voldemort, the bad guy, has a fear of death and seeks to escape it, even to the point of killing others to achieve immortality. He even calls his followers Deatheaters. Interesting that this quest for immortality, seeing death as the worst thing that could possibly happen to you, is an evil quality in the books.

One issue that I did have with the books, the deaths tended to be glazed over a bit. When major characters are killed off, there is some initial anger, a little sadness, but then it really doesn't dwell too much. Maybe I'm expecting too much depth from a children's book.

Overall, I think Rowling handles a difficult topic reasonably well and in an entertaining fashion. I would probably give it an A for entertain value, a B for the treatment of death, but a C for the emotional follow-through. I would be interested to know how children reading the books would view it.

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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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Iris is a 2001 film based on the life of Irish writer Iris Murdoch taken from the book Elegy for Iris, written by Iris Murdoch's husband, John Bayley. Murdoch died in 1999 after several years of suffering from Alzheimer's disease. The movie jumps back and forth between Murdoch's youth and the beginning of her relationship with Bayley and the later years of their marriage, as Murdoch's mind begins to slip away.

Iris Murdoch was an intelligent and independent young woman when she met John Bayley, a somewhat proper Oxford professor. He has a difficult time coming to terms with her free spirited nature and shady history(at least for the time) with men. He comments about the all different worlds Iris lives in. Later in life, as her Alzheimer's is getting worse, he again speaks about the different world she is falling into.

The film expresses the frustration and sadness of John as he watches his very intelligent wife slip into her own world. (Imagine a literary genius sitting in front of the television watching Teletubbies.) Things begin to fall apart as Iris at times becomes agitated and wanders off. John starts to fall apart as well. Below is a section from the movie. You can see how the issues of the past and present are interwoven. You can see how his frustration turns to rage and how events of the past seem to fuel this.


The way the film is structured, flashing back and forth, it compares the incidents of the past with those of the present. It compares the young, vibrant Iris with the older, demented Iris. One scene shows Iris riding on a bike with John trying to catch up with her. Then it shows the elderly John driving around town trying to find Iris who has wandered off. You see a young Iris swimming naked, carefree, then jump to an older Iris, with her husband struggling with her in the water as she becomes agitated.

I thought this movie was a good palliative care film because of how it deals with a chronic illness I see so often, Alzheimer's disease. It shows the extreme frustration that caregivers of people with dementia often feel. I also loved they way they meshed together the past and the present. I think it's intent is to bring out that even though Iris has changed so much, she is still the same person.

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While I'm intrigued by the concept, it did make me ponder what is the purpose of the funeral anyway? Are we essentially voiding this purpose by just viewing it online? Is the need that draws the grieving to a funeral fulfilled by a live webcast? (And would you really want a dvd of your dearly departed's graveside service?) It's probably a personal preference thing and would be good in a dire situation (too sick to make the funeral, deployed overseas etc.) but I don't think it could/should replace the real thing. But, who knows? Maybe one day a funeral will be just a lonely open casket displayed in front of a green screen pulled up on my Dell.

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There's a contemporary Broadway musical making it's way across the country this season, having closed on Broadway January 2009. Spring Awakening won 8 Tony's in 2007, including best score and best musical. Set in Germany in the 1890's, it's been referred to as a folk-infused rock musical.

The plot involves an adolescent cast that deals with very controversial themes such as sex, suicide, physical abuse, abortions, as well as education and spirituality. The musical score by Duncan Sheik with lyrics by Steven Sater is really outstanding, and I actually enjoyed the music more than the plot itself.

One of the more mellow and beautiful pieces in the musical comes after the death of one of the characters. Moritz Stiefel is an innocent boy with high expectations placed on him by his father. When he fails his finals at school, his father reacts harshly and with disdain. Moritz ultimately commits suicide and at his funeral the song "Left Behind" is sung.

There are many layers to the idea of being left behind. Traditionally you think of the people who are alive still, as being the ones "left behind", but this song incorporates a concept that it's the parts of the deceased that are left behind. The hopes, wishes, even sadness and fears of people can linger as a part of them, even when they are physically gone.

Here are the lyrics with a YouTube video of the song at the end of this post.

You fold his hands and smooth his tie, you gently lift his chin.
Were you really so blind, and unkind to him?
Can't help the itch to touch, to kiss, to hold him once again.
Now to close his eye--never open them.

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

All thing he never did are left behind.
All the things his mama wished he'd bear in mind,
And all his dad had hoped he'd know.

The talks you never had, the saturdays you never spent.
All the 'grown-up' places you never went.
And all of the crying you wouldn't understand.
You just let him cry, 'make a man out of him.'

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

All things he ever wished are left behind.
All the things his mama did to make him mind.
And how his dad had hoped he'd grow.

All things he ever lived are left behind.
All the fears that ever flickered through his mind.
All the sadness that he'd come to own.

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

And it whistles through the ghosts still left behind.
It whistles through the ghosts still left behind.
Whistles through the ghosts still left behind.

Towards the end of the musical there is another lovely bereavement song. Similar to "Left Behind", the sentiment is remembering those who've died by keeping them alive in the memories of those living. The song is called "Those You've Known" (follow link for full lyrics)

The song is an overlapping melody sung by 3 characters, 2 of which have died. The chorus states, "Those you've known/And lost, still walk behind you/All alone/They linger till they find you." As the song concludes, the living character Melchoir promises, "I'll walk now with them/
I’ll call on their names/I’ll see their thoughts are known. They walk with my heart/And I'll never let them go."

A good promise for those of us living to remember.

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December 1st is World AIDS Day. Throughout the month of December, Showtime is airing a a one hour documentary, Love in a Time of HIV. The directors Beth Jones and Nicky Lankester set out of make a documentary showing what it's like to live with HIV today. In an interview, Beth Jones commented "You remember from the press all the doom-and-gloom stories about having HIV, and the idea actually now is that it’s not about how do I live or die but it’s about how do I go about living my life, how do I go about getting married and having children?"

The documentary tells three different stories. The first is about Susan and Christina Rodriguez, a mother and daughter living in New York with HIV. Teenage Christina (pictured above) was born with HIV and diagnosed at age 3. She is now in high school and looking forward to going to college. Some of the issues she brings up are dating, wanting to have children, dealing with the perceptions of her peers. Christina's mother, Susan, runs a non-for-profit organization, SMART University, teaching women with HIV how to better take care of themselves.

The second story is about 25 year old South African Idols finalist, Tender Mavundla. Tender was voted off of Idols two weeks after she revealed her HIV status to the country. The media also picked up the story of the death of her premature infant daughter (a complication of Tender's illness). Tender lives in a community with a 40% HIV infection rate. She worries about her 17 year old sister (that she will follow in the footsteps of Tender and Tender's older sister, who is also HIV positive). She worries that there won't be a next generation in her community as those who are HIV positive are not having children or children are born with HIV. She still dreams of being a singer and adopting a baby. Below is a clip from Tender's story.


The last story is about a British couple, Andrew and Michelle. Their story centers around their attempt to safely have a child. Andrew is HIV positive and Michelle is not. Andrew talks about his frustration with having to turn to the medical community for something that he could otherwise (if not HIV positive) have done naturally. One of the reasons he wants to have a child to be able to leave something of himself behind.

What I found very interesting about this documentary is that it's not really about illness. It's about people trying to do the things that everyone else does: fall in love, go college, get married, have a family, fulfill a life long career dream. None of those featured look or act ill. The documentary really looked at HIV in a different way. As Andrew pointed out, as HIV moved from more of an acute to more of a chronic type illness, it has become "a forgotten illness". This film reminds us that there are still many out there living with HIV. They're not really thinking about dying. They're just trying to live normal lives.

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Since the last gallery exhibit was entitled "restless", I wanted to explore the opposite notion of stillness.

There are moments when I walk into a patient's room that the stillness is so prevalent I have to check to see if the patient is still actually breathing. While the traditional thought of stillness is an absence of motion, stillness also refers to a quietness or calm that can actually occur in motion. I've experienced this form of stillness in dying patients' rooms as well.

It seems the most traditional way of depicting stillness in art is to display water. It is easy to capture the idea of non-movement with still water. Add some mist and a boat and you've got the most common symbol for stillness, as this photograph from unknown source depicts.

The following 3 photographs I've collaged together for better formatting, but to see the originals follow the title links. On the upper left is a variation of the water concept, sans boat and instead lovely grass sprouting from perfectly still water and reflected below. This work "Stillness" is by photograph Gunther Dippe. The next, in lower left is a photo by Kris Schirmer entitled "Stillness- and the sun shines in my heart." A fallen flower petal symbolizes an ending to me, thus this piece resonated the type of stillness I feel in the room of someone dying. Finally from a Flikr photostream by Qmanes is "Stillness" shot with an extremely long shutter speed. The motion of the water and clouds is perfectly juxtaposed to the stationary object in the lower right.



I found this abstract work to the left by Linda Cole of encaustic wax on screen entitled "Stillness in Motion" To me the motion is symbolized with the circle, while the stillness is represented by the linear portion.

Finally, sticking with the tradition of finding a sculpture, I found a digital print series that at least looks like sculpture. The series can be found at Gladys Triana's website. Of the four listed, it is "Stillness XIII"2007 that is displayed on the right.

Looking back at the art work from "restless" and comparing it to these is an exercise in itself. The emotional response the art evokes seems synonymous to the titles.

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I'm always on the look out for palliative care topics in the movies and on television. Last week I happened to see two different television shows that I found blog worthy.

The first was an episode of Three Rivers entitled "The Luckiest Man". (The full episode is available online (legally) for a short time through the above link.) Not a program I usually watch as I generally am not a fan of medical dramas. This episode centered around Victor, a man with ALS who was in a car accident. He was already quite debilitated from the ALS. The injuries he sustained in the accident left him ventilator dependent and with no real hope to regain his previous independence. Enter a gentleman with severe lung disease and another with severe heart disease (on an LVAD as bridge to transplant).

At first, Victor is given two options, fight or die. He chooses to fight. His condition worsens and he makes a different decision. He wants to be removed from life support so that he can donate his organs. He makes a great point when he says he was only given two options but he sees a third. He wants to take back the control over his destiny that he feels he lost with his ALS. This leads to ethical dilemmas amongst the medical staff, especially the surgeon caring for Victor. Victor's plan was also complicated by his daughter who disagreed with his decision and blocked it for a short time on the grounds that she was his DPOA.

As with all medical shows, there was some inaccuracy. I'm pretty sure that you can't just choose who gets what organs. There didn't seem to be a great understanding of the whole Donation After Cardiac Death process (what can and can't be donated). Also, some confusion about the power of a DPOA. And television always screws up ventilators. All inaccuracies aside, there was some intriguing dialogue that took place.

Some of the issues that were brought up included:Is choosing to withdrawal life support suicide? What is a good death? What is quality of life? And who defines this, the doctor or the patient?

One of my favorite lines came from Victor "There's a difference between committing suicide and choosing to die with whatever dignity I have left." I found that this show often hit the nail on the head when it came to the ethical issues.

The second interesting palliative care related program I watched was an episode of Medium entitled "The Future's so Bright". (Another legally available online program, for a while.) For those unaware, Medium centers around Allison, a woman who has dreams about how people died then assists police in the capture of their murderers. In this episode, Allison develops a strange intolerance to light. She finds a pair of sunglasses to wear which turn out to be from a murdered man she has been dreaming about. When she puts them on, she begins to see strange numbers on people's foreheads which she later discovers are how many days they have left to live. (I know. Very far out there.)

My first thought, "Wow, what a useful prognostication tool to have!" Should we discharge Mr. X home with hospice? Hmm, let me put on my sunglasses. 60. Yes that would be an appropriate plan. How long will she live after we take her off the ventilator? Hmm, looks like 1 day. No need to discuss discharge options.

Ok, I know there would be a down side. Try to resist the urge to look in the mirror. I wouldn't want to look but... How do you avoid looking at your spouse's or your children's numbers? If you see a friend is going to die in two days, do you try to intervene? Maybe the intervention is what gets her killed. These were all issues explored in the show. Funny, they really didn't explore the palliative care potential.

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In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, for the second year in a row Pallimed is hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project.  This post will stay at the top of all Pallimed blogs from Tuesday the 24th until Sunday the 29th. You can also join the Engage with Grace group on Facebook.

Have a safe and meaningful Thanksgiving!

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Some conversations are easier than others

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:




Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.



Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )