Monday, December 29, 2008

The Sandwich Generation

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

Monday, December 29, 2008 by Amy Clarkson · 0

Monday, December 22, 2008

The First Night

The worst thing about death must be the first night.—Juan Ramón Jiménez


Before I opened you, Jiménez,
it never occurred to me that day and night
would continue to circle each other in the ring of death,
but now you have me wondering
if there will also be a sun and a moon
and will the dead gather to watch them rise and set
then repair, each soul alone,
to some ghastly equivalent of a bed.
Or will the first night be the only night,
a darkness for which we have no other name?
How feeble our vocabulary in the face of death,
How impossible to write it down.
This is where language will stop,
the horse we have ridden all our lives
rearing up at the edge of a dizzying cliff.
The word that was in the beginning
and the word that was made flesh—
those and all the other words will cease.
Even now, reading you on this trellised porch,
how can I describe a sun that will shine after death?
But it is enough to frighten me
into paying more attention to the world’s day-moon,
to sunlight bright on water
or fragmented in a grove of trees,
and to look more closely here at these small leaves,
these sentinel thorns,
whose employment it is to guard the rose.

Someone (to give credit, Christian) recently forwarded me a link to this poem by Billy Collins from The Good Death blog. The poem was inspired by the line "The worst thing about death must be the first night." from Spanish poet Juan Ramon Jimenez.

In Collins' poem, he wonders if night and day continue after death or if that first night is forever. Do we continue on after death, much as we did in life, or is death "a darkness for which we have no other name"? When I read The First Night, I wondered if Jimenez meant that the first night was the worst for the deceased or the worst for those left behind. It made me think more about grief and the lives that have to continue after a loss. Can my life really go on without him/her in it?

Collins expresses a lack of words when trying to describe death. "[H]ow feeble our vocabulary in the face of death". I think he means there are no words profound enough to describe it, nor could we even know what we are describing. There is so much we don't understand. "[H]ow can I describe a sun that will shine after death?"

The last few lines of the poem, remind us to stop and enjoy life and notice the "small leaves" and "sentinel thorns" that are part of life. Is death the thorns that guard the rose (life?)? Could we really appreciate the good times if we didn't have the bad as a point of reference? Could we really appreciate life if we didn't have death?

Poems are so open to interpretation. Does anyone hear something different when you read this poem?

Monday, December 22, 2008 by Amber Wollesen, MD · 3

Monday, December 15, 2008

Kathe Kollwitz


Coming across a piece entitled "Call of Death" (1934/5 ) by Kathe Kollwitz (at bottom of post), I was struck by the earnestness of the sketch. Surely, I thought, this is from an artist who's experienced death and grief herself. My look into her life confirmed that she spent much of her life as an artist trying to portray grief.

Kathe was born in a province of Prussia in 1867. She was said to be affected by anxiety as a child after the early death of her younger brother. With the encouragement of her father she immersed herself in art at the age of 12. She was married at 24 to a physician who served the poor of Berlin. Her two sons Hans and Peter were born in 1892 and 1896. Her inspiration originally came from the struggles of the peasants that she lived amongst. To the left is the etching "Death(Poor Family)"(1900) as an example of what she witnessed on a daily basis.

In 1914, her 18 year old son Peter was killed on the battle field during WWI. She subsequently entered a time of deep depression. She worked for several years through different media, attempting to represent her grief. Lithography was not satisfying, so she moved to wood cut which allowed her to slash and gouge the wood, heightening the emotion of grief. She also worked during this time on a monument for her son, which now stands above his grave in Vladso, Germany. To the right are the three different media; lithograph, wood cut, and stone and three different themes relating to her son's death. In order are "The Parents"(1919), "The Parents (War)"(1921), and "Grieving Parents"(1925-32).

Kathe's charcoal drawing "Call of Death"(1934/5) was one of her last works of art completed. The features of the woman are of the artist herself. I am struck that after all her works showing hers and others grief, how ready she seems when death calls her. Her look over her shoulder is one of expectancy and perhaps relief.

Kathe died 2 weeks before the end of WWII. Gerhart Hauptmann, Nobel Prize winner in Literature 1912, said of Kollwitz "Her silent lines penetrate the marrow like a cry of pain; such a cry was never heard among the Greeks and Romans."

To explore more of her works check out these two websites with many pieces: A_R_T and Artnet. Also, you can see a short 1 minute movie clip from a documentary on her life from the Roland Collection.

Monday, December 15, 2008 by Amy Clarkson · 3

Monday, December 8, 2008

The Savages

After re-watching this movie today, I had to go back to our original Top 10 Palliative Care Movies post to remember if we had included it in our list. We didn't, but maybe we should have.

The Savages is an independent film released in 2007 and has been called a "coming of maturity" story. It's a very real picture of a family dealing with the illness of a parent. Siblings Jon and Wendy Savage are busy with their own complicated lives when the death of their estranged father's girlfriend forces them to back into his life. Their father, Lenny, is diagnosed with dementia and Parkinson's. In a short time, they have to move Lenny from Arizona to New York and find a nursing home to place him.

Below is the movie trailer.



One of my favorite scenes is when Jon and Wendy have to discuss advanced directives with Lenny.

Wendy: Okay. In the event... In the event something should happen- Um- How- How do you want us to... Um-
Jon: Dad, what if you were in a coma? Would you- would you- would you want a breathing machine to keep you alive?
Lenny: What kind of question is that?
Jon: It's a question we should know, in case.
Lenny: In case what?
Jon: In case something happens.
Wendy: Nothings gonna happen. Right now. Nothing new.
Jon: Right, it's- it's just procedure. It's something they want for the records.
Lenny: Who?
Wendy: The people who run the place. The Valley View.
Lenny: What the hell kind of hotel is it?


Jon and Wendy sort out their own social lives while, for the first time, having to take on the responsibility of caring for their aging parent. I found that this movie hits pretty close to the mark of the normal American family. It's very realistic how Jon and Wendy deal with a crisis in completely different ways, one more logical, one more emotional. Wendy has a lot of guilt over placing Lenny in a nursing home, even though she know it's really the only choice. Below is Jon talking to Wendy as she tries to get Lenny into a more exclusive nursing home.

"...You are the consumer they want to target. You are the guilty demographic. The landscaping, the neighborhoods of care; they're not for the residents, they're for the relatives. People like you and me who don't want to admit to what's really going on here...People are dying, Wendy! Right inside that beautiful building right now, it's a f***ing horror show! And all this wellness propaganda and the landscaping, it's just there to obscure the miserable fact that people die! And death is gaseous and gruesome and it's filled with shit and piss and rotten stink!"

I was struck by all the losses Lenny experienced: his girlfriend, his mental faculties, his independence, his dignity, his privacy... Another very realistic aspect of the movie.

On a side note, the nursing home staff has a very interesting prognostic sign. Apparently toes curling under means someone only has a few days left.

Monday, December 8, 2008 by Amber Wollesen, MD · 7

Monday, December 1, 2008

Euphemisms and Misnomers

At a gathering recently, mentioning someone's wake that was upcoming, a friend blurted out, "Doesn't that term come from the superstition that someone could "wake" up, having been mispronounced dead?" As the supposed expert on death lore, all turned to me for the answer...which I really didn't know. Thus, a post was born. I thought we could look at some common phrases we use and find out what's really behind it all.

Let's start with the Wake Ceremony. This is a time before the burial that friends and family gather. Originally in the home of the deceased, though now often in funeral homes and churches. Although sometimes only a viewing, it is often a mixture of mourning and celebrating the life of the deceased. Why do we call it a "Wake"? The word derives from anglo-saxon origins meaning "to watch or keep vigil". It was important to have someone with the body, partly to protect from animals and other pests, as preservation methods weren't like they were today. As for this idea that "wake" derived from a belief that someone might wake up - NOT TRUE.

This idea of being mispronounced dead must be widley prevalent, with the belief that the term Dead Ringer comes from a string attached to a bell placed on a corpses foot or wrist that would ring if the person was really alive. This is another misnomer and is NOT TRUE. Dead Ringer is used to mean "exact duplicate", but what's the root of the words? Ringer was first used in the late 1800s to describe a horse used as a substitute to fool bookies and throw races. As for the word dead, well it does have more meanings than the cessation of life. Another meaning for dead is exact or precise, as in "he's a dead shot". So in this case the word dead ringer literally means exact duplicate.

Along those lines, people often think that the term Graveyard Shift comes from people actually sitting aroung waiting for one of those bells to ring indicating someone was buried alive. Again, NOT TRUE. There were caretakers for the grave sights, but their watchfulness was for grave robbers.

Here's an interesting one; Kick the Bucket. This is often thought to have roots from the idea that someone would stand on a bucket to hang themselves and need to kick the bucket out of the way at the end. NOT TRUE. The word bucket actually used to mean beam or yoke, to carry items/animals. In fact, when animals were hung to slaughter, the wood frame used was called the bucket. Often as the animals died, in their final spasm they'd quite litterally "kick the bucket".

Ever wonder about Six Feet Under ? Well this one is TRUE. We often use the phrase as a synonym for death. Most believe it comes from the practice of burying people six feet underground. But where did it orginate from? It seems like this one came from the time of the plague. The Lord Mayor of London set rules with the outbreak of the plague in 1665, stipulating that bodies must be burried six feet underground to reduce the spread of disease. Is this still true today? Absolutly not. Each state sets it's own rules now on minimum depth to bury. For example, in California, you only need 18 inches of dirt.
Let's conclude with the Tombstone. I was surprised to find that many believe the origin of the tombstone came from a fear of spirts/ghosts. In order to weigh the soul or ghost down, heavy stone markers were used...leading to the modern day tombstone. Sorry to say, this is NOT TRUE. The idea of marking a grave with stone actually appears early in the bible. In the very first book, Genesis 35:20, Jacob erects a memorial to his deceased wife in the form of a pillar. This idea of honoring the deceased with a marker of some sort in quite ancient and prevelent in most societies.

If you know of more quirky lore, please share. Otherwise it's up to us to set the story straight when we hear these urban legends.

Monday, December 1, 2008 by Amy Clarkson · 4

Monday, November 24, 2008

Leroy Sievers and "My Cancer"

While looking through recent articles in Obit Magazine, I came across one about a cancer blogger, Leroy Sievers who died August 15, 2008. (I think blogging is a form of contemporary literature that we haven't brought up yet.) Sievers, who was an executive producer for Nightline, began blogging about his cancer experience in 2006 when he started writing commentary for NPR's Morning Edition.

Sievers was diagnosed with colon cancer about 4 years earlier. In 2005, he was found to have cancer in his lung and brain and was given 6 months to live. He participated in a Discovery Channel documentary entitled "Living with Cancer".

He used his blog to discuss his experiences with the medical community and how his diagnosis effected him emotionally and physically.

"My doctors are trying to poison me. Oh, they have the best intentions. They call the process chemotherapy. The idea is to poison the body enough to kill the cancer, but not quite kill the patient. Best I can tell, it's a difficult line to walk. " May 11, 2006

His commented on a lot of the daily issues and life changes that his cancer brought. Some of these topics included outliving his prognosis, keeping clean, giving up his beloved Jeep that he could no longer drive, and making the decision to sign on to hospice. The post below describes another big change.

"It pretty much fills the room. It took four of us, actually five of us, to get me into it.
It's my new bed.
The only really scary part was when I slipped and almost fell on the floor.
The bed's electric. It lets me do things I couldn't do before.
But let's be honest, too. It's a hospital bed. It was not an easy decision to bring it into the house.
But here I am, in it.
Cancer World brings another change."
August 11, 2008


Sievers' wife Laurie Singer continues his blog.

Monday, November 24, 2008 by Amber Wollesen, MD · 0

Monday, November 17, 2008

"Casimir Pulaski Day" by Sufjan Stevens

There is not a lot known about the background of Sufjan Steven’s song “Casimir Pulaski Day”. Whether completely fictional, or based on some form of personal experience, the song easily resonates with the listener.

Like many contemporary songs that speak of a loved one dying, there is a large element of questioning and doubt etched in between the lines. The inner turmoil between the singer and his faith become more of a theme than even the death of the loved one.
If you are unfamiliar with Sufjan’s work, you’re not alone. Born in Petoskey, Michigan in 1975, he is considered a part of the indie folk/pop culture. He has only broken out occasionally into mainstream in the last several years. You can learn more about him here.
The title for the song comes from the day the singer’s friend dies, the first Monday of March, which happens to be Casimir Pulaski Day. Haven’t heard of this one? Illinois is the only state that currently celebrates this holiday.
The song tells the story of a girlfriend, perhaps, who is diagnosed with bone cancer. Take a minute to listen and read through the lyrics:

"Golden rod and the 4-H stone
The things I brought you
When I found out you had cancer of the bone

Your father cried on the telephone
And he drove his car to the Navy yard
Just to prove that he was sorry

In the morning through the window shade
When the light pressed up against your shoulder blade
I could see what you were reading

Oh the glory that the lord has made
And the complications you could do without
When I kissed you on the mouth

Tuesday night at the bible study
We lift our hands and pray over your body
But nothing ever happens

I remember at Michael's house
In the living room when you kissed my neck
And I almost touched your blouse

In the morning at the top of the stairs
When your father found out what we did that night
And you told me you were scared

Oh the glory when you ran outside
With your shirt tucked in and your shoes untied
And you told me not to follow you

Sunday night when I cleaned the house
I find the card where you wrote it out
With the pictures of your mother

On the floor at the great divide
With my shirt tucked in and my shoes untied
I am crying in the bathroom

In the morning when you finally go
And the nurse runs in with her head hung low
And the cardinal hits the window

In the morning in the winter shade
On the first of March on the holiday
I thought I saw you breathing

Oh the glory that the lord has made
And the complications when I see his face
In the morning in the window

Oh the glory when he took our place
But he took my shoulders and he shook my face
And he takes and he takes and he takes"


There are so many touching things about this song. There’s vulnerability in the storyteller’s words, letting us glimpse such intimate moments. Did you notice, the moment of her death a cardinal smacks into the glass window of her room, is it irony, symbolism? Maybe both. Birds have long symbolized the souls of the departed. Here is an entire post devoted to the subject to check out.
Can you feel the struggle of faith throughout the song? It is blatant at times, like the phrase “pray over your body, but nothing ever happens”, but more often subtle. For instance, most of the stanzas that start with “oh the glory that the lord has made” end with a contrasting sentiment, complications, doubt and even loss.
I think this song does such a nice job of capturing the grieving process. Isn’t it often about remembering, i.e. those little snippets we get of her life? But it’s also about processing and questioning. Even the ending is apropos; the grief isn’t all packaged up and done with, but still ever present, as the singer repeats his lament to God that “he takes and he takes and he takes”.
Works: Steven, Sufjan "Casimir Pulaski Day" Illinois (2005) Asthmatic Kitty
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Monday, November 17, 2008 by Amy Clarkson · 5

Monday, November 10, 2008

Old Milwaukee and Art Therapy

Or - Old Montreal and Art-as-therapy.


I was in Montreal recently for the 17th International Congress on Palliative Care. For those of you who have never been, the conference takes place 'downtown' in the area known as the Quartier International (lots of banker-types in suits, cell phones attached to ears as they walk down the sidewalks). The QI is right next to Vieux Montreal ("Old Montreal"), an area on the St. Lawrence which looks and feels like a medieval center of a European city. It's a main tourist area, with lots of streets-made-for-strolling, and where I think most of the conferences goers ate dinner. It's a beautiful place, slightly decayed, and has incongruous vistas (at least to this Midwesterner) which combine Old World cobblestone charm and decaying 20th century grain tower hulks - a site familiar to me from the upper Midwest. For an American however the feel is very Old World, and on the last night I was there my dinner mates and I wandered over to the St. Lawrence to watch a chorus sing/chant an eerie aria (like something from Rosemary's Baby), while sitting on concrete pylons in the water, in the dark, with flames burning in the background and on the water. I'm not sure how they got the flames on the water. It was fantastically weird and creepy and the spell wasn't broken even when a mini-armada of paddleboats came out to retrieve the singers from the pylons when it was over.

Despite the lack of resemblance, however, I kept on calling Old Montreal 'Old Milwaukee' the entire time I was there. I've never drunk the stuff, although it's a legendary brew and I've become somewhat of a Milwaukee partisan since moving here (I think it's brewed in Detroit these days anyhow). The persistence of the substitution I decided was probably because I was missing my boys back in Milwaukee. And, I guess, we live in an older part of town, so on some level it made sense.

The entire time I was there in Montreal, I deeply missed my boys. I've never had such a sense of existential peril - fragility - since I had children. I know this is nothing profound, and I'm a pretty well put together person emotionally, but since I had kids what sense of vulnerability I have is very much focused on them. Worrying they will die and I'll lose them; worrying I'll die young and not be there for them and not get to see them grow into men. This sense of peril and vulnerability becomes heightened whenever we are apart - it's nothing huge - I don't freak out and lose sleep - but it's something I carry constantly with me - a presence - when I'm away or they're at their Grandparents, etc.

It's in this context that I stumbled across Cancer Connections/Cancer: vu et vecu at the Place des Arts, not too far from Vieux Montreal. It's a traveling exhibit of photos submitted by Canadians by/about/of people who have/have survived/have died from cancer (you can see all the photos at the website). There were several hundred photos on display, outdoors at the Place des Arts, and I was there around lunch time, completely by accident, surrounded by about 100 pre-teen school children on some sort of riotous field trip (whose major theme seemed to be 'run around like squealing like mad'), looking at the photos, balling my eyes out.

The photos on this post are from the exhibit, and if you look through the website and have ever taken care of patients with cancer (or have/have had loved ones with cancer) many of the images will be very familiar to you - scarred bodies, cachexia, alopecia, families sharing moments of affection and solidarity and grief, parents holding pale, Cushingoid toddlers. I found myself looking at my patients - at something very familiar to me - but also at myself. 'Myself' in the sense of my own grief and loss for my patients, but also my own fear that this will happen to me and the losses captured on film will be losses my children will experience if I die too young or I will experience if one of my children becomes ill.

There is inevitably a lot of grief in medicine, and certainly in palliative care. In order to function on a day to day basis I have to actively 'manage' my grief for the losses of patients I care about, and from the burden of witnessing others' grief and loss. Part of this is, at least at the bedside, being aware if a patient/family is challenging my boundaries due to the sheer magnitude of grief/emotion or because some aspect of the situation speaks to my own vulnerabilities (particularly as a father) - i.e. the situation runs the risk of becoming 'about me' and not the patient/family.

I don't mean to suggest that this is some sort of major struggle and that I'm on the verge of freaking out about my boys all the time. Nothing like that. It's more of a steady, low grade presence in my working life, something I keep a check on, and often diffuse with my interdisciplinary team. If you ever sit around with your team members, shaking your heads, saying This is a tough one - that's what I mean by diffusing it. But there's always some grief with me, and for professional sanity and to provide the best care for my patients I keep it to myself: at the bedside, it has to be about the patient/family. If not, and if it becomes unchecked you run the risk of fizzling out, avoiding rooms because they're 'too hard,' not sticking around to answer the tougher questions.

However, in front of these photographs, it was safe for it to be all about me - my losses, my affection for my patients, and my love and fears for my family, particularly my boys. There was only a hundred Quebecois schoolkids to witness; pretty safe relatively speaking, particularly as they were engaged in their noon-time riot. I began to cry, looking at the girl with her Granddad and the G-tube, and I realized boundaries I have in place to prevent me from overflowing with emotion at the bedside weren't needed in front of the photos - I had no therapeutic alliance to maintain or composed posture to defend. It was a wonderful hour of tears and catharsis, in a way I'd never experienced before. I've never understood catharsis, or people approaching art with the hope to see their experience reflected back to them in a way which allows for emotional release or whathaveyou. This may be because I'm jaded and cynical (and read a lot of art theory when I was younger and had 'ideas' about what art was supposed to be about and it's not a doctor blubbering about his existential dread while traveling for a conference); but it also may be because I've never had much in me that needed catharsis - I've lived a relatively blessed life (and still, to be sure, am living one) and it may only be the last few years - getting older, kids, hundreds of patients dying a year - that I had something that needed catharsis, particularly as the stimulus to much of my grief is one that I have to repress/manage as it unfolds.

So this was a first for me, at least that I am aware of, and the release and opportunity to it allowed me couldn't have happened without the images. Most of them are simple snapshots of familiar scenes - and scenes familiar to me from that place in me that knows how vulnerable my little life is. I am curious if others, as they've entered this work, or accumulated personal losses in their life, found that their relationship to the arts changed because of it, and found that they appreciated opportunities to cry for themselves about their patients and the way patients make them feel but in a 'safe' way; away from the bedside....?

Afterwards I headed back to the QI, and ran into a friend and told her about the exhibit. She thought it sounded a bit too heavy, so instead we went to see a showing of Randy Pausch's Last Lecture. God I love palliative care folks sometimes....

Monday, November 10, 2008 by Drew Rosielle MD · 5

Monday, November 3, 2008

Life Before Death

Amy's earlier post on postmortem photography reminded me of an article I had read sometime ago about a photo exhibit entitled "Life Before Death". This exhibit contains 24 pairs of black-and-white photos, one before and one after death. They were on display earlier this year as part of the Wellcome Collection, an art collection in London that focuses on the development of medicine.

Journalist Beate Lakotta and photographer Walter Schels spent a year following hospice patients in Germany. The people they photographed ranged from 17 months to 83 years old. They also conducted interviews of those they photographed.

The photos above are of 67 yo Edelgard Clavey. “I want so very much to die. I want to become part of that vast extraordinary light. But dying is hard work.”

The photos below are of 52 year old Heiner Schmitz. “Don’t they get it? I’m going to die! That’s all I think about, every second when I’m on my own."

Per an article on the exhibit, the goal of the artists was to break through the taboo of talking about death. "The dying want to talk about what it feels like to die, and the living ought to listen, for death can strike at any time."

When comparing the photos, I could see the normal signs of death, eyes sunken in, a loss of fullness in the face. But something interesting I noticed in all the photos was a shadow cast across the faces of the person after they died. It's as if a light has gone out.


I must admit when I first saw these photos, I found them a bit disturbing. When I really looked at them and started reading about the exhibit, I changed my view. During an interview about the exhibit Schels said, "People are almost always pretending something, but these people had lost that need. I felt it enabled me as a photographer to get as close as it's possible to get to the core of a person; when you're facing the end, everything that's not real is stripped away. You're the most real you'll ever be, more real than you've ever been before".

Monday, November 3, 2008 by Amber Wollesen, MD · 4

Monday, October 27, 2008

Laurie Lipton

Death has been represented for centuries as a skeleton. Its origins began to appear in the early fifteenth century incorporated on tombs in a genre known as "Dance Macabre" or dance of the dead. This ghoulish representation was not meant to be a comfort, but to warn and frighten people about death. Along the borders of this procession of skeletons was a conversation between death and man. Death always calls out in a threatening tone, and man answers in remorse and despair, crying out for mercy. The message was simple, all will die, none can escape.


There is a contemporary artist who's work often has skeleton's present. Taking her inspiration from the hyper-realistic paintings of the fifteenth century Flemish paintings, she has mastered the technique using monochromatic tones with just pencil and paper. Often viewers react either with horror or laughter.

Laurie says of her work that "Art began as a repository for all my negative emotions. I was a perfect, cute little girl in a perfect, cute little suburb in New York and didn’t know what to do with all the dark, fearful s*** that was swirling round in my head. If I hadn’t found an outlet, I would have exploded like a firecracker".

This piece "Death and the Maiden"(2005) was inspired by the death of her mother, who died in hospice. Like most of her work it is both endearing and horrifying at the same time. While working on this painting she recounts having listened to Offenbach's "Tales of Hoffman". In this opera, there is a scene in which Antonia sings a duet with her dead mother. Music often has a powerful way of mixing with life events, and inspiring even greater creation.



The pieces with skeletons are done as a way to remind us that death is among us. Laurie writes, "my culture runs from it[death], screaming. We encourage youth, beauty and the illusion that we have all the time in the world and will never, ever end. We frantically face-lift, botox, throw vitamins, creams and money at death. Death only happens to other people. Only losers die..." This piece is entitled "Family Reunion" (2005) . It reminds us, like the theme of fifteenth century dance macabre, that all will die.

If you want to look at more of Laurie Lipton art, check out her official website. All images here are copyrighted to Larie Lipton


Other good links to conversations with Laurie are at Music is Art and Bienart

Monday, October 27, 2008 by Amy Clarkson · 0

Monday, October 20, 2008

"Go On" by Jack Johnson

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.


**UPDATE 7.21.2009** I was contacted by the family of Danny Riley and wanted to add his website www.dannyriley.com and note that they started a foundation ot help children with cancer through music appreciation and experience. Danny himself was a talented musician as you will find when you listen on the site.

Other songs on this album with palliative oriented lyrics include: "Adrift," "All at Once," "Monsoon" and "Losing Keys"

"Go On" by Jack Johnson from the album "Sleep Between the Static" (2008) from Brushfire Records.

Lyrics:

In my rear view I watch you
Watching the twilight behind the telephone lines
With nothing to prove or to assume
Just thinking that your thoughts are different than mine
In my rear view I watch you
I gave you your life, but you gave me mine

I see you slowly swim away
As the light is leaving town
To a place that I can't be
But there's no apologies

Just go on, Just go on
There are still so many things, I wanna to say to you
But go on, Just go on
We're bound by blood that's moving, the moment that we started
The moment that we started

I see perfect little eyes, watch the shadows of the clouds
And the surface of the ocean out the window of a plane
I get nervous when I fly I'm used to walking with my feet
Turbulence is like a sigh that I can't help but over think

What is the purpose of my life if it doesn't ever do
With learning to let it go live vicariously through
You can do the same it's the least you can do
Cause it's a lonely little chain if you don't add to it

So go on, just go on
There's so many things I wanna say to you

Go on, just go on
We're bound by blood and love from the moment that we start

Just go on, just go on
There are still so many things I wanna say to you

Just go on, just go on
We're bound by blood that's moving from the moment that we started
The moment that we started

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Monday, October 20, 2008 by Christian Sinclair · 3

Monday, October 13, 2008

Bird Hits a Window

Have you heard people talk about this? At the hospice place where I work, I sometimes hear a nurse, or even a family member say, "A bird hit the window this morning, I'm sure mom's getting ready to go soon." In fact, it's not unusual to have a day when several rooms have a constant barrage of tapping from birds flying into the glass.

I was surprised to see how entrenched this symbol of the bird is in our culture. In case it's a new idea for you let me explain:

"Bird flies at the window, Death knocks at the door" is a phrase that has been repeated by kids for centuries. The roots of this reach far back. Because of their ability to fly, birds have eternally been connected with the heavens/afterlife. Birds aren't just associated with death, but life as well, as in the common story that a Stork delivers new babies into this world.

There really is no culture exempt. In Egypt, China and Japan the Phoenix symbolizes rebirth, from ancient myths of the bird constantly being reborn. In Syria, Eagles are on tombs to lead the souls in the afterlife. In the Jewish and Christian culture, it is the dove that represents the soul. Both the Celts and Greeks believed the soul would reappear as a bird after death. There is an Islamic tradition that believes that dead souls remain as birds until judgment day, whereas the Hindu's use birds to symbolize the form the soul takes in between earthly lives.

With so many cultures viewing birds as the representation of human souls, you can guess when a bird suddenly acts strangely, we take notice. Before there were glass windows, the superstition was that if a bird flew into your house and perched on someone's chair, then a death would occur within that home in a year's time. Now, not too many birds make it inside, but all it takes is the unusual event of a bird trying to get in, hitting the glass pane, and then when an untimely death occurs the two events become connected.

Such was the case for Lucille Ball, who at the age of 3 recalled that a bird flew in her house and became trapped the day her father died. She was so convinced of this superstition that she refused to stay in hotels that had bird wallpaper or pictures of birds on the walls.

Some may wonder is one type of bird more ominous with this superstition? It seems there are several to worry about. In the Cherokee tradition it is a red bird that provides the connection with the deceased. The Red Bird Center provides the story behind this belief. The other birds to be leery of if they are trying to fly in your house are the sparrow, the robin and the raven.

Anyone with stories of their own?


References:
http://www.snopes.com/oldwives/bird.asp
http://www.mythencyclopedia.com/Be-Ca/Birds-in-Mythology.html

Pictures used: "Bird in Hand" Victor Schrager has an entire collection of these here
"Start to finish" from Two Dresses Studios here

Monday, October 13, 2008 by Amy Clarkson · 40

Monday, October 6, 2008

Death and Disney

I remember when I was 4 or 5 years old going to the movie theatre with my family. I watched as Bambi ran toward the thicket away from the hunters and then turned around looking for his mother. My little 4 year old brain had no idea what was going on. I remember whispering to my mother in the theatre "What happened to Bambi's mommy?"



Does anyone else get teary eyed when they see this scene? Maybe I was just a slow child but I think there was a reason a four year old wouldn't get what happened in this scene. The death scene in Bambi is very subtle. They never come out and say, "Bambi's mother died" and they never show anything close to a death. How was young Bambi even to understand what happened? "Your mother can't be with you anymore." So, she had to go out of town? The response of my nephew (who was 5 at the time) was, "She's ok, right Mom. She's just hurt but she'll be ok." Denial.

Now compare that scene to this more contemporary Disney death scene.



Big difference. In The Lion King, nothing is subtle. You watch as Mufasa plunges to his death. In a totally heart wrenching scene you see the dead Mufasa as Simba tries to wake him up. Nothing left to the imagination. On a positive note, the grief response in The Lion King is much more appropriate. Poor Bambi gets just one tear then he has to turn around and walk away. You've had a whole 2 minutes to grieve, Bambi. Now it's time to move on.

This big shift in how death is dealt with in Disney films happened around the 1970's. Movies that were made before that (Bambi 1942) tended to have more implicit death scenes. After the 1970's, (The Lion King 1994) death scenes were more explicit, showing the actual death and/or the deceased. Maybe the thought was to shelter children from violence and death. Which approach is better?

In one study, Disney movies were taken at random and their death scenes analyzed. They found 23 death scenes in 10 movies. In these scenes, they looked at several different things including who died (antagonist vs protagonist), how the death was depicted (implicit vs explicit, permanent vs temporary), the emotional response, and the cause of the death (accidental, justified vs unjustified). While the study had relatively small numbers, they did find some interesting things. 39% of deaths lacked any emotional response. Although most of the deaths overall are portrayed as permanent, half of the protagonists that died come back in some way.

As the study points out, death in Disney movies is not all bad. The Lion King has been used as a tool to help teach children about death and grief. Movies can be used as a more comfortable way to bring up difficult discussions. But they could also send confusing messages to children about death and grief.

References: Cox M, et al. Death in Disney films: Implications for children’s understanding of death. Omega. 50(4). 2004-2005. 267-80.

Monday, October 6, 2008 by Amber Wollesen, MD · 4

Monday, September 29, 2008

Polaroid a Day Project

I enjoy taking pictures. Some might say too many pictures since I often have my small digital camera with me everywhere I go. But I was amazed to hear the story of Jamie Livingston who took 6697 Polaroid photos, one a day, from March 1979 to October 1997. Chris Higgins, a writer for the mental_floss blog discovered a website with all of these photos and started looking into the back story of Jamie. He had already deduced from the photos that he was a film maker, Mets fan and obviously an artist who made a photographic diary of his life.

When I look through these pictures and see a life laid out in singe frames through a Polaroid lens, I as myself lots of questions.

Who are these people?
Why is it so important to the photographer to document all of this?What does this say about our daily lives? And what is truly important?
This picture of Jamie and his girlfriend was taken in late April 1997. A few days later one picture tells a much different story...radiation tattoos. A few months later he ended up in the hospital. But was able to get out of the hospital and get married.
The photos go on until the last day of Jamie's life. You should visit Jamie's pictures and see what a wonderful story they tell. One man's dedication to taking one photo a day to show 18 years of his life even when things were not pretty or happy. Taking photos of the everyday and the mundane and sad things we experience is the polar opposite of how our society thinks about photography. If you took out all your photographs right now what would it say about your life? Is it all weddings, birthdays, parties, and vacations?
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Monday, September 29, 2008 by Christian Sinclair · 0

Monday, September 22, 2008

Tale of Two Poets


I have great respect for poets. They have the ability to say beautifully, in few words, what many of us spend a lifetime trying to convey. There are two poets I want to mention in this post... two poets whose lives were intertwined.

Jane Kenyon was a student at the University of Michigan when she fell in love with her writing professor, Donald Hall. Though 19 years her senior, they married in 1972 and began a successful life together as poets. They spent the majority of their 23 year marriage on Donald Hall's family farm in New Hampshire.

In 1989 Donald was diagnosed with metastatic colon cancer. He underwent resection and chemotherapy and was given a 1 in 3 chance to survive another 5 years. It was utter tragedy then when Jane herself was diagnosed with Leukemia in 1994.

As she battled and lost a rugged 15 month fight with leukemia, she and Donald worked on "Otherwise: New and Selected Poems" published soon after her death. One of the few poems she wrote referencing her illness:

"The Sick Wife"
The sick wife stayed in the car/while he bought a few groceries./Not yet fifty,/she had learned what it's like /not to be able to button a button.

It was the middle of the day-/and so only mothers with small children/or retired couples/stepped through the muddy parking lot.


Dry
cleaning swung and gleamed on hangers/in the cars of the prosperous./How easily they moved-/with such freedom,/even the old and relatively infirm.

The windows began to steam up./The cars on either side of her/pulled away so briskly
that it made her sick at heart.

Another poem from the book is a reflection of a loss in Jane's life:

"What Came to Me"
I took the last/dusty piece of china/out of the barrel. /It was your gravy boat,/with a hard, brown/drop of gravy still/on the porcelain lip. /I grieved for you then as I never had before.

If you read through Jane's book first and then move on to the book Donald Hall compiled in the days and weeks before and then following his wife's death, you may find yourself grieving with him. His compilation of poems entitled "Without" are an exquisite look into the lives of this couple dealing with dying.

Here are 3 different poems by Donald Hall dealing with the medical world, faith, and saying goodbye.

First the physical struggle:
"As Dr. McDonald plunged/ the tube down her throat, her body thrashed/on the table. When she/ struggled to rise, the doctor's voice cajoled,/ "Jane, Jane," until/ blood-oxygen numbers dropped toward zero/ and her face went blue./ The young nurse slipped oxygen into Jane's/ nostrils and punched/ a square button. Eight doctors burst/ into the room, someone/ pounded Jane's chest, Dr. McDonald/ gave orders like/ a submarine captain among depth charges,/ the nurse fixed/ a nebulizer over Jane's mouth and nose-/ and she breathed.

Meanwhile,/ understanding that his wife might be dying/ before his eyes, he stood still,/ careful to keep out of everyone's way."

Second the spiritual struggle:
"When the minister,/ Alice Ling,/ brought communion to the house/ or the hospital bed,/ or when they held hands as Alice prayed,/ grace was evident/ but not the comfort of mercy or reprieve./ The embodied figure/ on the cross still twisted under the sun."

Lastly, the emotional struggle:
"One by one they came,/ the oldest and dearest, to say goodbye/ to this friend of the heart./ At first she said their names, wept, and touched;/ then she smiled; then/ turned one mouth-corner up. On the last day/ she stared silent goodbyes/ with her hands curled and her eyes stuck open."

Often we find in art that some of the richest creations come from places of deep despair and tragedy. It is certainly true of the poems of these two connected souls, Donald Hall and Jane Kenyon.

If you are looking for more check out Bill Moyers documentary "Donald Hall and Jane Kenyon: A life together" produced just before Jane's diagnosis. Donald Hall also has a more prose filled book called "The Best Day and the Worst Day: Life with Jane Kenyon"

Monday, September 22, 2008 by Amy Clarkson · 0

Subscribe to Comments Only

Have you ever wondered what other people might be saying about a particular subject you see on any of the three Pallimed blogs? But to actually remember to go back and check the post is something you never get around to doing?

Well for Pallimed readers who subscribe via RSS* we now have a Comments Only Feed that will keep you up on the latest conversations on the posts. Each Pallimed blog (Main, Arts, and Cases) has its own individual subscription link in the left hand column.

Pallimed: Main Comments Only Feed (About 5-10/week)

Pallimed: Arts Comments Only Feed (About 2-4/week)

Pallimed: Cases Comments Only Feed (About 1-2/month)

We rarely get spam comments 2-3/month and we delete them within 2-4 hours usually, so this should not be a big deterrent. The 'Comments Only' subscription is not available for email subscribers at this time, but if you would like an email subscription option then email me directly or post a comment.

This post will be cross-posted to all three Pallimed Blogs. My apologies in advance for readers who see it multiple times.

*Really Simple Syndication.

by Christian Sinclair · 0

Monday, September 15, 2008

Memorial Quilts

A recent Google search on a completely unrelated topic, lead me to a hospice website. I found some photos there of a Memorial Quilt that they had made. As an amateur seamstress myself from a family of professional seamstresses, this peaked my interest.

After additional searches, I came upon the AIDS Memorial Quilt. I remember hearing about this years ago. I even saw a few pictures. But I don't remember really looking at it and trying to see what each block was saying about the person it memorialized.

The AIDS Memorial Quilt was first established in 1987 to not only remember those who had died but to build awareness for HIV/AIDS. It was meant to give names to the numbers. It is the largest community art piece in the world, containing approximately 48,000 panels that would cover 185 basketball courts (2007 statistics). The panels have now been photographed and archived on the group's website and can be viewed there.

Some of the 3X6 foot panels are very simple, with just a plain background and a name. They are very profound in their simplicity. Others are more ornate with pictures of the deceased or religious or other symbols. I think the Olympic flame on this block is not only representing an Olympic athlete. Like the flames seen in memorial monuments and grave stones, it is an eternal flame. There is actually a lot of similarity in the symbolism of the Olympic torch (that burns continuously through the Olympic games) and the eternal flame. The ship, also found in this block, is sailing off into the sunset. On it's sail are symbols that represent the deceased.

While the AIDS Memorial Quilt may have slowed down in the past few years, as less people are dying from AIDS, more blocks are still being added and parts of the Quilt are on display around the country. More recently, memorial quilts have been made in honor of those who died in the 9/11 attacks.




There really aren't any fixed rules when making a memorial quilt. You can find memorial quilts made from t-shirts and other fabric belonging to someone who has died. Photos and even documents such as letters can be printed on to fabric to be added to quilts. This quilt has printed pictures (intentionally blurred), parts of t-shirts, and fabric from the deceased clothes. Like the AIDS Quilt, they are often mixed media, with paint, needle work, and pretty much anything that can be sewn on.



I found this quote talking about the AIDS Memorial Quilt, but I think it's a great description of all such works of art. "The Quilt has redefined the tradition of quilt-making in response to contemporary circumstances. A memorial, a tool for education and a work of art, the Quilt is a unique creation, an uncommon and uplifting response to the tragic loss of human life."




References: http://www.aidsquilt.org/

Monday, September 15, 2008 by Amber Wollesen, MD · 0

Monday, September 8, 2008

Postmortem Photography - A Lost Art?

In the early nineteenth century, as the medium of photography was coming into existence, postmortem photographs began to appear. These portraitures, taken soon after death were cherished keepsakes for families to possess. Usually it was the only photograph ever taken of the individual, young or old.

Even before photography existed, paintings of the deceased occurred. In the sixteenth century paintings of a recently deceased would be made of the person, usually a nun or clergyman, sitting up or lying in bed. This influence is seen in some of the early photographs, depicting their subjects also propped up in bed or in a chair.

The other customary paintings in the early nineteenth century were of young children whom had died. These paintings actually depicted the child alive, but a symbol of some sort was included to indicate that the child had in fact died. Examples of symbols used include a rose held downward, or a broken stem. Sometimes a prominent watch with the time of death was included.

As photography evolved, photos rather than paintings of the deceased became important. Interestingly, as the cost of photography lessened, the price for a postmortem photograph actually increased, indicating it's value, as well as popularity.

Most of the postmortem photos are of children, secondary to the high infant mortality rates. The earlier photos often depict the subject in a sleeping posture, as if to depict the impermanence of sleep, rather than the finality of death. As the role of the undertaker became more central to the dying process, more elaborate photo's of coffins and flowers ensued.



The official practice of postmortem photography began to disappear in the early twentieth century. Many reasons for this exist. The photograph itself lost some of its prominence as the snapshot was developed and photo's became more common place. Death also became more scarce, and our societies began to shun any reminders mortality.

The art of postmortem photography is all but gone. The palliative care movement that is slowly bringing the acceptance of death back into society's focus, is also helping to spur a resurgence in portraiture's of deceased infants. The current name now is "remembrance photography".

A very big difference is that remembrance photography is generally donated. Unlike the high prices of postmortem photography, today's tribute is a gift to families to help in the grieving process. One terrific organization that connects families with photographers is "Now I lay Me Down to Sleep". This current photo is taken from their gallery, full of tributes to children.

This picture of James Dennis isn't much different than photos taken almost 100 years ago. Spend some time reflecting on both genres, there's a great sight on Flikr with a large collection of postmortem photos and the Now I lay Me Down to Sleep gallery.


Reference: Memento Mori: Death and Photography in 19th Century America by Dan Meinwald

Monday, September 8, 2008 by Amy Clarkson · 2