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

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?

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.

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.

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.