The Alzheimer's Project is an HBO documentary series that debuted in 2009. It consists of 4 documentaries that look at the science of the disease and those affected by the disease, the people with the disease, their caregivers and children. There is also a supplementary series of short videos.

What really caught my attention in this three year old series was the documentary entitled "Grandpa, do you know who I am?" It was narrated by Maria Shriver whose father, Sargent Shriver, suffered from Alzheimer's. (He died in 2011.) This video was geared toward children dealing with grandparents with Alzheimer's.

They followed several different children in different circumstances. One family of children was having an open conversation with their grandfather with early Alzheimer's about what was happening to him and how he was dealing with it. One girl was helping to care for her grandmother in her home and another had a grandmother in a nursing home.

The very emotional part of the video was when they discussed some of the behavioral changes in their grandparents. One child described her nursing home bound grandmother slapping her for no apparent reason. In another scene, a grandmother yells at her granddaughter to leave when she tries to read to her.

The video is mixed with messages for children dealing with similar situations, like this is the disease not really your grandparent and try to be a keeper of your grandparents memories.

This documentary series is very well done as HBO documentaries tend to be. It was made in collaboration with National Institute on Aging. What I really appreciated is that the videos are all available online here.

I finally got around to seeing Rabbit Hole, which just came out on DVD in April.  It stars Nicole Kidman and Aaron Eckhart, who portray a couple that has lost their young son to a tragic accident.    The teaser from Rotten Tomatoes says it "is a vivid, hopeful, honest and unexpectedly witty portrait of a family searching for what remains possible in the most impossible of all situations"  Simple translation: This is a movie about grieving.

The couple deals with their grief in two totally different ways. Becca (Kidman) seems to want to erase everything that reminds her of her son and rarely shows emotion. In one scene her husband Howie (Eckhart) confronts her about this, "You're trying to get rid of him.......You have to stop erasing him. You have to stop it!"  To which she answers "Do you really think that I don't see him every second of every day?.........It feels like maybe I don't feel badly enough for you. Maybe I'm not feeling enough. What do you want from me?"

Howie has several angry outbursts in the movie, which seem to be part of his grieving process. He also strikes up a friendship with a woman from his grief group, played by Sandra Oh.

The grief group has some stereotypic characters, including another couple who has spiritualized the loss of their own child. Becca's confrontation of this made me smile.  The couple shares that the reason their daughter died was because God "needed another Angel"  to which Becca pipes up, "Why didn't He just make one?... I mean He's God after all?!?  Why didn't He just make another Angel?"

Interestingly we learn that Becca's brother died years prior, so Becca's mother Nat(Dianne Wiest) has great potential to be of comfort, if Becca would allow her to be. Finally towards the end, Becca connects with her mom and their exchange is one of my favorite moments of the movie. I love how Nat describes grief.

Becca: Does it ever go away?

Nat: No, I don't think it does. Not for me, it hasn't, and that's goin' on eleven years. It changes, though.

Becca: How?

Nat: I don't know....the weight of it, I guess. At some point, it becomes bearable.It turns into something that you can crawl out from under and...carry around like a brick in your pocket. And you... you even forget it, for a while. But then you reach in for whatever reason and - there it is. Oh right, that. Which could be awful- But not all the time. It's kinda...not that you like it exactly, but its' what you have instead of your son, so you don't wanna let go of it either. So you carry it around. And it doesn't go away, which is...."

Becca: What?

Nat: Fine...actually.

Overall, I thought this was a good movie about grief. The characters do heal during the movie, which is always nice to find your characters growing. I also enjoyed the sub context looking at the question of where one finds comfort in grief. This was mentioned and explored outwardly in many ways, from looking to religion, to other relationships, and even to parallel universes.

If you haven't seen it, check it out and do let us know what you think.

Also, here's the trailer if you want to get a feel for the movie visually.

This is the final selection on this mini series on children's books that deal with grief.  I'm sure we'll review more books in the future, however these were the 5 books my local rural library had on hand.  It ended up being a nice eclectic mix and hopefully illustrates the variety out there.

Grandma I'll Miss You is written by Kathyrn Slattery and illustrated by Renee Graef.  The book was published by Chariot Books in 1993 and is listed for ages 4-8.

The main character in this book is Katy, who is dealing with some very mixed emotions. She is aware her grandmother is dying and she is also anticipating the birth of a new sibling.  This book uniquely brings in the idea of birth being similar death.


The beginning of the book is very story like, spending most time on Grandma's life. I suppose you could say this is the life review portion, as Grandma shares memories from her life.  As in the last two books reviewed, one of the big questions Katy has is "What will happen to Grandma when she dies? and Is there really such a place as heaven?" Unlike the other books these are just thoughts Katy has and aren't directly addressed.

What is refreshing is that Katy actually asks her grandma, "are you afraid about dying?" This leads to a creative illustration linking death and birth together. The grandma admits her slight fear, but then tries to put herself into the unborn babies shoes, as the baby too has no concept of what it will soon experience.

The next pages are very Christian based in concepts about heaven, and about getting a new body there. Katy and her Grandma wrap up the conversation and then the very next morning the Grandma dies. I did appreciate the statement on the book's last page, "Death, in its way, was as natural a part of life as birth", something we in palliative care definitely understand.

The illustrations in this book are simple and realistic. There isn't any thing that stands out in color scheme or medium used.

In terms of recommendation, this book probably has the most narrow audience of the one's we've reviewed. If it is line with a family's personal beliefs, then it would be a good conversation book, though it seems geared to older than the quoted 4-8 yr. old.  I did enjoy the normalization of death as similar to birth, and think there could be some other concepts related to that link to help grieving kids.

To sum up these last 5 book reviews, it seems that a common theme for children's books are the "What happens after?" questions.  3 books had different answers, and if that is the question your child is asking, it would be important to find a book with the answer you want to share!  The other type of book seems to be about grief itself - normalizing feelings and emotions one goes through in the process.

I hope to keep reading and familiarizing myself with what's out there so that when families ask me what to do, I'll be able to delve into the issue of concern, and make some more informed recommendations!

This next book in our series may be chosen by some simply for the beautiful illustrations.  This is one reason I wanted to spend time reviewing some books on childhood grief.  Although great lists exist out there, we don't often get to see inside the book itself.  Having a toddler myself, I am aware that it is often the illustrations that spark her interest in reading.

Somewhat like our last review on Maria Shriver's book What's Heaven?, author T.A. Barron describes this book as autobiographical. The personal nature of the story definitely adds to the sincerity of the story.

Where is Grandpa? is written by T.A. Barron and illustrated by Christ K. Soentpiet. The book was published by Philomel Books in 2001 and has the age group listed as 4-8.

The voice is first person, and the plot follows a young boy on the day of his Grandpa's death. Much of the story is told in memories, as each family member shares about a  favorite time with Grandpa.  However, when it is the boy's turn he is speechless. After being prompted by his mother about a story he thinks, "Even if I did, I didn't feel like telling it."

Although the family tries to think of suggestions, I appreciate that the boy is allowed to remain silent. The boy then works up the courage for the big question, "Where is grandpa now?"

The final pages attempt to answer this question.  Although the word heaven is used, the father quickly adds, "heaven means different things to different people. And it's hard to explain."  Ultimately it is described as "any place where people who love each other have shared some time together."  This allows the boy to get out of his sad funk and begin to think of the places he shared a memory with his grandpa. In fact the last illustration of the book shows the boy actually smiling.

As mentioned, the illustrations are exquisite. Done with a very realistic feel, there are a lot of nature scenes with special attention on the lighting. Most of the story takes place at dusk, and the illustrator actually moves us subtly  through a sunset to darkness during the book.

This is another book I would recommend. It is lighter than some of the other books reviewed, not tackling as many concepts or questions.  However, I appreciate the simplicity and hope offered in the story.  Like the Shriver book, because this is based on a personal story, we encounter this family's personal beliefs/opinions and one should be comfortable in the concepts presented.


One more to book to go... stay tuned.

This next book in our series of children's books that deal with grief has a famous author, which will often add to the appeal in buying a book. Perhaps from the media's input, I had also already heard of this book before actually getting it from the library.

The author, Maria Shriver, points out on the back that this book came from actual discussions with her 6 year old, at the time of the daughter's great-grandmother's death. I think knowing that perspective helps in the review as well, since the previous books Tear Soup and When Someone Dies was written by a hospice worker and grief counselor, respectively.

What's Heaven? is written by Maria Shriver and illustrated by Sandra Speidel. Published by Golden Books in 1999, the age listed for reading 4-8.

Although the title would imply a book all about Heaven there are definitely other topics covered.  The plot line follows Kate who comes home to find her mother sad and news that her great-grandmother has "died and gone to Heaven".  This prompts not questions about death or what "died" means but questions about what Heaven is.  The concepts specifically in question are:  Where Heaven is?,  Are animals there? and How do you get there?  I think these are questions I myself would like to know!

There is also discussion about what a funeral is and thanks to cousin Bobby, questions about the actual casket. Here's an example of a conversation Kate has with her mom: "Bobby told me we are going to a funeral where we are going to bury Great-grandma in a box. Why are we going to do that? Will it hurt Great-grandma? How will she breathe in the box? What if she wants to get out?"

As is typical of little ones, there are many more questions than answers in the book.  As parents have learned, it's more about the concept we are sharing than the specifics of each question.  This book is similar, the general message is one of hope; that after death there is a distant, safe place where all the best parts of someone goes... that it's okay to be sad and it won't last forever and that by remembering our loved ones they remain alive in us.

The illustrations are done in pastels, with a more vibrant feel than some of the grief books I've seen.  The pastel's also allow for a dream like or memory like quality, as sharp details are left out.  There are a lot of words on each page, and no paragraphs, perhaps emulating the way children can move from one topic to another in stream-less fashion.  Each page does have one phrase that is doubled in font size, I suppose then if just browsing the book you could pick up on the highlights.

If you have a child with some of these specific questions, it would be a great book! What's challenging in these types of personal stories, is that your family may not agree with all of the concepts presented.  For instance if you don't want to teach your child, "when your life is finished here on earth, God sends angels down to take you up to Heaven to be with him" Then you'd have to either skip the page or do some other teaching on what your family concept is.

In comparison with the other books reviewed thus far, this book is by far the most specific in terms of one family's beliefs and/or opinions.  And rightly so, as the author makes no presumption of being an expert, but simply using her own experience to share with others...

Stay tuned, we have a few more to review!

As mentioned in the first in this series on children's literature dealing with grief, there is an abundance of material out there to recommend to families with children dealing with grief.  In fact, it's often overwhelming with so many choices.  Hopefully this random sample from my local library will, if nothing else, illustrate the wide variety of books out there.

Often until you actually see inside the book yourself, it's hard to know which book is the right one. In fact, if you went on just book lists, the book I'm reviewing today is by far on more lists than any other books I'm reviewing, making me assume it is very popular. Yet without reading it, as you may see, I wouldn't have discovered it's unique style, different than Tear Soup, or even The Goodbye Boat reviewed in an earlier post.

When Someone Dies is written by Sharon Greenlee and illustrated by Bill Drath. Published in 1992 by Peachtree publishers it is written for a reader aged 8-12.

The book is considered plot-less, with each page making more of a conversational statement in second person. This approach seems to lend itself to a normalizing of the emotions and issues surrounding grief.  The statements center around feeling sad and mad, but also about concepts of dreaming of your loved one, and worrying if other people around you will die too.  For example, here are some of the statements:

 "If the person who died was very important to you, you get to worrying that all the other important people might leave too.  I've never heard of it happening that way, but it's hard not to think about it"

"When people die, they can't come to your house anymore. You wonder what they'd look like now, and you do all you can to make a picture of them in your mind."

Towards the second half the author begins to task the reader to actually do some things such as finding someone to cry with and writing a letter to the person who died.

Besides normalizing grief with the second person speech, I noticed that the word "dies" is used 10 times out of  a total of 15 pages of statements.  I can't help but think even using the word is a way to normalize the experience. No metaphors in this book, death is definitely the main character.

The illustrations use a washed out almost dull tone, adding to the mellow nature of the book. One thing I found interesting is that all of the scenes are out doors in nature and the people all Caucasian, which doesn't do much to normalize to a wide audience.

I think for certain children, this type of writing style is what is needed. Due to this books popularity on many of the lists out there, it's definitely good to be familiar with it!

 Stay tuned again for more books coming up...

If you look at any bibliography of childhood grief books, it is likely to be quiet extensive! Take for instance the bibliography on the Child Grief Education Association website, here.  The good news is that there is no shortage of literature available.

My question is, though, with so many choices- which ones are the best? This answer probably has much to do with the child's age, the questions they are asking and simply the child's personal preferences in books.  A simple title of a book won't give any insight into the intricacies of the book, thus we must rely on word of mouth or websites such as BarrHarris.org,  Childlife.org or the many other hundreds of grief websites that give a synopsis of the books. But even this doesn't give a clear understanding of what the book is like.


The best option, would be to read them all ourselves. While a lofty goal that I have not yet achieved, this week I did the best I could; I went to my local library in rural America and checked out all the books I could find on childhood grief.  Hopefully the reviews of these books, with illustrations and story plot will give you a more thorough idea of some of the children's books out there.

For this first post I have chosen a book that has great appeal for adults as well as children. I would consider it a "cross-over" book, and may in fact be more of an adult book disguised as a children's book.

Tear Soup is written by Pat Schwiebert and Chuck Deklyen, Illustrated by Taylor Bills.  Published as a 3rd Rev. edition by Grief Watch in 2005, the age level listed for reading is age 4-8.

The main character is Grandy, who has suffered a 'great loss'. She spends the pages working on her tear soup, which serves as a marvelous symbol of grief.  The universal statements packed into the book are so subtle, sometimes it takes a moment to recognize them.  For example, "It seems that grief is never clean... To make matters worse, grief always takes longer to cook than anyone wants it to"

She deals with adding memories to the pot and even the profound concept of the time that memories seem to run out, and the emptiness felt then. There are interactions with neighbors and friends, as Grandy says, "They filled the air with words, but none of their words took the smell of tear soup away." Or when she comments that, "most people can tolerate only a cup of someone else's tear soup."

The book also approaches faith issues, as Grandy "demanded to know where God was when she was feeling so all alone."

As one might guess, Grandy works through her grief until she realizes it's time to eat something else instead of only tear soup.  The book ends with a nice summary of Grandy's journey, "I've learned that grief, like a pot of soup, changes the longer it simmers and the more things you put into it. I've learned that sometimes people say unkind things, but they really don't mean to hurt you...and most importantly, I've learned that there is something down deep within all of us ready to help us survive the things we think we can't survive."

This book has wonderful illustrations and while I am not sure a pre-school child would understand the significance of all the metaphors, it would certainly provide a starting point for topic discussions. It may also serve as a great recommendation for a family with an adult who has been resistant to dealing with their own grief... by innocently entering into the realm of a kid's book, they may be surprised to have issues raised within themselves.

Stay tuned over the next weeks for more reviews of children's literature and feel free to leave your own favorite children's books about grief in the comment section below.

I found this story in a recent CNN article. Five year old Aidan Reed was diagnosed with leukemia in September of this year. Aidan immediately began treatment. With a new baby at home (born 12 days after Aidan's diagnosis), his father had to take leave from work to help out. Financially, things quickly got bad for Aidan's family and they even discussed having to sell there house.

Aidan loves to draw and he loves to draw monsters. (To the right is Gillman, one of Aidan's favorite monsters to draw.) After his aunt received some of his drawings, she had an idea of how to financially assist Aidan's family. She set up an Etsy account called Aidan's Monsters and began selling Aidan's art. For those of you not familiar, Etsy (one of my favorite websites) is an online forum for people to sell there homemade art, clothes, jewelry etc. Aidan's monsters were so popular that the family made $83,000 in just a few weeks. You can see more of Aidan's art on his blog.

A few things I found interesting about this story. First is the very clever use of Etsy for fundraising (again, one of my favorite websites). Aidan's aunt is only selling the pictures (prints) for $12 each and managed to sell around 7000.

Another thing was the obvious parallels people were making with Aidan drawing monsters while fighting a "monster" himself. I even read somewhere that the monsters were some kind of subconscious manifestation of his fight. Really? Can't he just be a five year old boy who really likes to draw monsters. Wouldn't that be a much more likely explanation.

Reading this story also introduced me to a series I hadn't read on CNN.com, entitled Empowered Patient. It was started by Elizabeth Cohen after her newborn daughter accidentally got an unnecessary spinal tap. She writes on different topics like how to get the most out of your doctors visit and how to talk to children about illness.

I know Christian has mentioned before having ah-ha moments when listening to songs and finally really "hearing" the lyrics. This happened to me this week as I had the children's music writer/singer Justin Roberts on. On one of the slower songs on his album "Meltdown" (2006) I suddenly heard words that I realized were talking about dying.

Happy 2nd Anniversary!


Another year has come and gone, and we here at Pallimed Arts like to celebrate with top 10 lists. We did the top 10 palliative care films in 2008, and the top 10 palliative care songs in 2009. Although we are growing up- this is our 2nd anniversary- we thought we'd get "younger" with this years top 10. We're listing our favorite children's films that have good palliative care themes.



Plot summaries are courtesy of IMDB and the links will take you to a trailer of the films. As before we hope you comment with your own ideas of children's films we left off our list.



10. The Never Ending Story (A troubled boy dives into a wonderous fantasy world through the pages of a mysterious book)



9. My Neighbor Totoro (When two girls move to the country to be near their ailing mother, they have adventures with the wonderous forest spirits who live nearby)



8. Bridge to Terabithia (A preteen's life is changed after befriending the new girl at school)



7. Mr. Magorium's Wonder Emporium (Molly Mahoney is the awkward and insecure manager of Mr. Magorium's Wonder Emporium, the strangest, most fantastic, most wonderful toy store in the world. But when Mr. Magorium, the 243 year-old eccentric who owns the store, bequeaths the store to her, a dark and ominous change begins to take over the once remarkable Emporium)



6. Up (By tying thousands of balloon to his home, 78-year-old Carl Fredricksen sets out to fulfill his lifelong dream to see the wilds of South America. Right after lifting off, however, he learns he isn't alone on his journey, since Russell, a wilderness explorer 70 years his junior, has inadvertently become a stowaway on the trip)



5. Lion King (Tricked into thinking he killed his father, a guilt ridden lion cub flees into exile and abandons his identity as the future King)



4. My Girl (Vada Sultenfuss is obsessed with death. Her mother is dead, and her father runs a funeral parlor. She is also in love with her English teacher)



3. Bambi (Animated film about a young deer, Bambi, growing up in the wild after his mother is shot by hunters)



2. Old Yeller (A boy brings a yellow dog home. The dog loves the family as much as they love him, but can the love last?) *no trailer found, link is to a scene from the movie.



1. Charlotte's Web (Wilbur the pig is scared of the end of the season, because he knows that come that time, he will end up on the dinner table. He hatches a plan with Charlotte, a spider that lives in his pen, to ensure that this will never happen)

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.

But Dulcy Singer, the program's executive producer, said, ''we felt we ought to deal with it head-on.''

''If we left it unsaid, kids would notice,'' she said. ''Our instincts told us to be honest and straightforward.''

"Children sometimes have to face death in their own lives. They should be aware that death is permanent," Lovelace says. "We showed that life on Sesame Street would go on, that Mr. Hooper would be missed but someone else would take care of the store and look after Big Bird.

"We did not specify how Mr. Hooper died," Lovelace says. "The terms old and sick were not used."  The staff considered, then rejected, the use of film flashbacks of scenes with Mr. Hooper. "This would have confused the youngest children," Lovelace says. "For them, if something moves, it's alive."

• Will Lee walked in the Macy's Thanksgiving Day parade only two days before he died.  Author Michael Davis wrote a book about Sesame Street called Street Gang and on a radio show he shared a great story about a friend from the show visiting the actor Will Lee in the hospital days before his death.  His friend said, "Will If you promise if you'll urinate for the nurses I promise the next episode will be sponsored by the letter P." 
  
• The NYT actually had a readers Ask Big Bird a questions and I found this interesting comment from an adult who was helped from watching the "Farewell, Mr. Hooper" episode as an adult. 
• Interestingly the program to donate money in your will to Sesame Street to ensure the legacy of the show is called The Hooper Society.
• There is also a book based on the episode called, "I'll Miss You Mr. Hooper."  You can find the text and images from the book at ToughPigs.com - a website for Muppet fans who never grew up. You can read their commentary about the book when they discussed it a few years back for their book club.
  
• Other times Sesame Street has dealt with death was in 2002 in the South Africa version when they introduced a HIV positive muppet child named Kami.  Here is a short transcript of one exchange highlighting the importance of memories of the deceased:

Ms. FRAN BRILL (Actor): (as Kami) This is a memory box that my mom made for me
Unidentified Man (Actor): (as character) Yeah.
Ms. BRILL: (as Kami) before she died of AIDS.
Unidentified Man (Actor): (as character) Oh, yeah. I see. And what do you do with the memory box?
Ms. BRILL: (as Kami) Well, I look at all the beautiful things
Unidentified Man (Actor): (as character) Mm-hmm.
Ms. BRILL: (as Kami) inside my memory box when I want to remember all the good times I had with my mother.

There is a vast amount of children's literature available about death. I wanted to review one such book I came across recently. It is a visually beautiful book, with sweeping oil paintings depicting the metaphor of death as leaving on a boat. The book "The Goodbye Boat" is by author Mary Joslin and is illustrated by Clarie St. Louis Little.

There are few words in this book, leaving the message to be portrayed visually. Two grandchildren are depicted with their grandmother. At first they are at play in summer by the beach. Then in the sunset a ship approaches. The grandmother waves goodbye and as the climate turns to winter the boat sails away. However as summer comes again the message is clear, with the children once again playing on the beach and happy.


The final phrase of the book, "yet when the boat is gone from view it's surely sailing somewhere new" is meant to provide hope after all of the sadness.

I like that this book gives its message in short words like "wondering", "weeping" and "lonely days". These phrases coupled with the moving pictures would surely help instigate conversations with children reading it.

In fact, in one of the reviews on amazon.com, I noted a reviewer said she read this book to her grandnieces after a death, and they asked to re-read it multiple times, each time asking new thoughtful questions about death.

I also like the various metaphors. The seasons that match the emotional responses is nice touch. The boat metaphor I like better than the "going to sleep" metaphor which can be confusing for young kids. However, this too can be confusing if the child assumes this as concrete fact. As one review pointed out, a child may assume the boat will come back... awaiting their loved ones return.

I also appreciated that the boat was seen approaching, long before the grandmother left on it. Although very much an ideal, it gives the sense that one can prepare and have a chance to say goodbye.

I think if I had to pick my favorite page of the book it would be this one below, with the words "wondering,". I encounter this feeling more often on a daily basis, doing palliative medicine work, than any of the other expected feelings of sadness, anger, etc. You can see the sad frustration and unknown in the expressions of the kids as well as the grandmother herself. Wondering is experienced by both patients and families, as well as with those of us in the medical world.












Joslin, Mary. "The Goodbye Boat" Eerdmans Books For Young Readers: Grand Rapids, Michigan. Copyright 1998

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.

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....

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

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.

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

How much of our temperament is based on genetics, and how much is experiential? For Edvard Munch it may have been more of his life circumstances that shaped his morose outlook on life, than the fiber of who he was at birth. Born in 1863 in Norway, Edvard was the second child of five. His early life was tainted with the death of his mother at age 5 and his beloved older sister when he was 14. As if this weren't tragedy enough, a younger sister was diagnosed with mental illness and institutionalized most of her life. His father, a physician, dealt with the loss of his wife by instilling religious fear into the hearts of the remaining children. Edvard considered himself ill as well, and wrote, "Without anxiety and illness, I am a ship without a rudder....My sufferings are part of my self and my art. They are indistinguishable from me, and their destruction would destroy my art."

Although Munch is best known for his painting "The Scream"(1893), his other works are worthy of examination. Because of his early experiences with death, many of his pieces explore his emotional responses to the memories of his childhood.

The first piece to exam in entitled "The Dead Mother and Child"(1897-1899) or the later version known as just "The Dead Mother"(1899-1900). What's interesting about these pieces are the differences. In the earlier painting we see the entire room, perhaps from Munch's perspective as he came to his mother's deathbed. Relatives are mourning in the background quite separate from the child. Munch's sister in red, eyes wide in horror, has her hands covering her ears, in an effort to block out something; maybe the reality of the situation, maybe the sounds in the room? His sister's mouth is open mid sob, or mid scream. In fact this posture is not unlike his most famous painting, "The scream"(1893). Contrast this version with "The Dead Mother"(1899-1900) done a year or so later. The viewer is now up close, and the child, still ears clasped with her hands, looks less horrified and more defiant. She's less emotional, implied also by her pale blue dress as opposed to the red dress of the other painting. Red is often used to symbolize passion. Using a cooler color fits well with this more composed painting.