Monday, January 25, 2010

Death and Harry Potter

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.

Monday, January 25, 2010 by Amber Wollesen, MD · 2

Monday, January 18, 2010

I still do: Loving and Living with Alzheimer's Dementia

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

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

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

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

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

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

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

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

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

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

Monday, January 18, 2010 by Amy Clarkson · 6

Monday, January 11, 2010

Iris

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

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

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


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

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

Monday, January 11, 2010 by Amber Wollesen, MD · 0

Monday, January 4, 2010

Unclaimed


Many of us take it for granted that when we die our loved ones, if not able to be present at the time of death, will certainly be around for the memorial service or burial.

But what of the hundreds that die completely alone each year. And what happens when no one comes to claim the body?

In the United States, that depends on where you die. Every State requires that first, unclaimed bodies must be offered to medical schools or places that use cadavers for education. After that it's either up to the county, township, city or state, depending on the statutes in place. Some states bury, some cremate. The cost of this is paid by the jurisdiction. What is the average cost? In 2008 the average cost for an unclaimed person's burial was $2,125. Some states actually have bodies sitting in morgues for years because the county or state is out of money to dispose of the body.

The numbers of unclaimed persons are on the rise, up between 25 and 50% this year, and it's not because more people are dying alone, but because families aren't able to afford it.

In France the law entitles everyone to a proper burial in a cemetery. However, taking this entitlement a step further, a volunteer group recently formed in Paris called "Les Morts de la Rue" (the dead of the streets) to make sure that every unclaimed body has at least one person present to witness the burial. Usually something is said about the date of birth and death, or the meaning of the deceased's name.

In India, there is a group called the Shaheed Bhagat Singh Sewa Dal, made up of a few volunteers who preform the last rites and cremation of the unclaimed bodies in New Delhi. They are "on call" to bestow this religious gift those who have no one.

While I couldn't find any particular organization that presides at unclaimed burials in the US, I did find a group present at soldier's burials. If you are a soldier being buried in Arlington National Cemetery, you are guaranteed to be buried with someone present. Such is the mission of the "Arlington Ladies". Created in 1973, they have ensured that since their inception, no one buried in Arlington has been buried alone. The group is made up of about 60 members of the Officers Wives Club. They volunteer once a month in pairs, to attend the average of 10-20 interments daily.

The ceremonial sequence is always the same, the Arlington Lady stands silent holding the arm of an escort from the Army's Old Guard. Once the folded flag is presented to the soldier's next of kin, the Arlington lady steps forward and presents a card and words of condolence. She then steps back to the escort and looks straight ahead for the remainder of the cermony. There is a dress code, no slacks can be worn. There is no inclement weather policy, they are present rain, snow or sun.

There is a lot of talk about dignity in death, especially in palliative care. I wonder to what extent this goes... should we be organizing grass roots volunteer groups like the Les Morts de la Rue or the Shaheed Bhagat Singh Sewa Dal for the unclaimed of our society? Or is that going too far?


*flag photo credit eqqman on Flikr

Monday, January 4, 2010 by Amy Clarkson · 7