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.

At a recent event, I had the opportunity to watch the documentary, You Just Have to Laugh. This comedic documentary was appropriately put together by a comedian, David Naster. The impetus behind making the film was apparently a show Naster did in a church in Kansas. Afterward, a man came up and thanked Naster, saying that it had been the first time he had laughed since his son had died.

From there, Naster began exploring the topic of how we use laughter to get through the tough times. In his documentary, he interviews many different people in difficult situations, such as a gentleman with MS, a firefighter who was severely burned, people with tourettes syndrome. One interview was of a psychiatrist with a stutter talking about his experiences working a suicide hotline. Another is of a concentration camp survivor talking about the humor they found in the most horrible tasks. (The documentary points out that we may not find all these experiences funny but if it helps one cope with such a horrible situation, it was funny to them.)

Below is a video clip of Naster talking about his philosophy on laughter and death. Working on a hospice team, this really struck a cord with me.



Naster has also written books on this topic, the most recent Is there Laugh after Death? looks at stories of hospice workers and families of dying patients.

While I don't think Naster's documentary is widely available, it appears to be available at his website.

This HBO documentary looks into the life and death of Diane Schuler. In 2009, Diane was involved in a head on collision that killed her daughter, 3 nieces, 3 men in the other vehicle and herself (her son was the only survivor). It analyzes Diane's life through her friends and the hours leading up to the accident through cell phone calls, police, eye witnesses and surveillance video. She had been noted to be driving erratically and then drove the wrong way on an interstate for 1.7 miles. An autopsy of Diane revealed a blood alcohol level of 0.19 and high level of marijuana in her system.

To Diane's grieving husband, she was a perfect wife and mother. He is adamant that she would never have drank while in the car with the children and that the results of the autopsy are false. He has contested these findings even after the discovery of a bottle of vodka in the car. He grasps at any possibility (a tooth abscess she had several years ago causing her to have a stroke which led to her drinking the alcohol by mistake).

What interested me are all of the interviews of the family members on both sides. Her husband, family members and friends reminiscing about the Diane they knew and looking for any answers, any other medical reasons she behaved the way she did. On the other side, the family members of the 3 men killed in the vehicle she hit, angry that her husband continues to deny what the evidence shows. (The parents of the three nieces killed did not participate in the documentary.) It even goes into the grief and trauma of the witnesses to the accident.

Most of what they present is from the view of Diane's husband and sister-in-law. You find yourself wanting to buy into their blind faith in Diane, even though you know what the evidence shows.

The documentary is very well put together. It easily moves from the accident to the distant past to the present. They integrate the medical and other evidence along with psychiatric assessments of the Diane and her family. (The graphic accident photos I could have done without). It's a medical mystery along with a unique perspective on grief. What happens if the person you are grieving is possibly at fault in the loss? Was she really the person that everyone thought they knew?

Ten years ago, Mark Hogancamp was attacked outside of a bar by 5 men. He was badly beaten and nearly died. It took 9 days for him to wake up after the attack and as a result Mark lost most of his memories and had severely impaired motor function. For his own therapy, physical as well as emotional, Mark created his own world which he calls Marwencol.

Marwencol is a fictional 1/6 scale WWII era Belgium town. The town's inhabitants are all dolls. Mark has created a doll for himself (named Hogie) and many of his family and friends are also represented. Mark poses the dolls in various scenes and then takes photos to tell the story. His storyline: Nazis, romance, torture, a time traveling witch (?).

His dolls and props are made to be very realistic. To enhance this effect, Mark actually places his characters in his model jeep and pulls it along side him when he takes a walk, giving them authentic wear and tear.

A local photographer saw Mark walking with his jeep and asked Mark what he was doing. Mark then shared his photographs. This discovery has led to a lot of publicity for Marwencol, including an art show in New York and now a documentary. Unfortunately the documentary is only playing in a select few cities nation wide and Kansas City is not one of them. But the trailer gives you a good feel (below).



So my question, after looking through some of the Marwencol photos is, when does this therapy cross the line and become pathological? The photos are wonderful. The scenes Mark puts together are amazingly life-like. But many of the scenes are about murder and torture. Hogie's wedding scene had dead Nazis hung up in the back ground. I just couldn't help but think that the Nazis are perhaps the 5 men who took his life away. Is he really just reliving his trauma over and over rather than adjusting his life to move past it? Making his make believe world exactly what he wants his real world to be?

On the other hand, maybe this is giving him the only life that he would be able to have. Maybe without it he wouldn't have a reason to go on after the terrible trauma he went through. If living in his own world is the only thing that is keeping him going, who am I to say that it's bad?

The Marwencol website gallery posts some of Mark's photos along with his captions to tell the stories. In the last postings, Hogie and his wife Anna (apparently in the image of his ex-wife) have been assassinated. The following is the collected captions of this most recent installment. I leave you with this because I think it says a lot.

"Meanwhile the SS are downstairs having drinks. They're celebrating that the King and Queen of Marwencol are dead. Now it's easy to take over the townspeople-they don't have leaders or anything. Then Anna and I stick our heads over the railing of the balcony. We look down at the Nazis down there. And they look up and they're floored. And Anna and I hug. And the Nazis realize that they can't kill me. They can't kill Anna or I because we're going to live forever. We're immortal. I won."

A death mask is a cast made of a persons face hours after death, a process that goes back to ancient times and was common until the mid 20th century. These are usually done in plaster or wax. The casts are then used as mementos of the dead or to create portraits. (J Edgar Hoover kept a death mask of John Dillinger in his office as a souvenir of his war on crime.) The History Channel made a documentary on the topic, entitled Death Masks.

The documentary focuses on the death and life masks (made while the person was still alive) of several famous historic figures, Abraham Lincoln, George Washington, Julius Caesar, William Shakespeare, Napoleon, John Dillinger . They then use modern computer scans to create life like images of how the person would look in real life. They go into the process of how the masks are made. A life mask made in Lincoln's time had to set about an hour on the persons face to dry. Not a big deal if you were already dead, but I would imagine a long hour if you were alive. (Below is a death mask of Shakespeare.)

Mostly the documentary focused on what the masks could tell us about the deceased. Was the man shot in Chicago really John Dillinger? Is the dollar bill an accurate portrait of George Washington? It seems that sometimes more than one death mask will surface for a particular person and it is a challenge to find which is the right one. The two life masks of Lincoln, taken 5 years apart (one before he became president and one just weeks before he died) shows a marked decline in his health. The last mask made has actually be confused for a death mask.

The documentary goes into some of the psychology behind the desk masks. "From ancient times, capturing the faces of the dead for all to see was a macabre reminder that we all end up as dust." Death masks were not just meant to be mementos but to serve as a warning to the living. "Death masks in particular are dark. This is not a living person. This is a corpse. In many ways they are a message to the living. They are about your mortality. About this is what you will become. They are designed to frighten in many ways." There are some very frightening death masks shown in the documentary.

The death masks reminded me a lot of the death photography. Both I find interesting but just a bit creepy. I'm not sure I would want either hanging in my living room. (Who wants a reminder of their own mortality hanging above their television?) I think I would much rather of a life mask of a loved one. Remember how they were before death, not after.

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

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

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


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

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

Heartwarming movies are always a plus for me. Add to this a documentary with good end of life themes and I'm snagged.

Young@Heart (2007) is just this. It is a documentary about a singing group in Massachusetts who covers such artists as Coldplay, Sonic Youth and James Brown. The twist is that the average age of the members in the group is 81.

The movie follows the group of 24 for 6 weeks through a series of rehearsals and performances. Intermixed through the rigors of learning new songs like "Schizophrenia" by Sonic Youth, are laughable moments and trials from the health issues of chorus members.

The lessons in the film are abundant, and most center on how to make "living" more worthwhile. The singers have a sense of purpose with the group, they feel their minds are sharper as they learn and memorize songs and the necessity of being with other people during the day helps them live longer, more quality lives.

The most poignant moment for me was the night of the concert. One of the members had died, and the soloist himself is in poor health. His oxygen hisses in bursts as he sings Coldplay's "Fix you". The lyrics, which were written portraying the emotions of the death of someone dear, strike a different feeling sung by a group so familiar with death and so close to death.

The chorus member sings, "And the tears come streaming down your face/When you lose something you can't replace/When you love someone but it goes to waste/Could it be worse?"

I especially like the realness of this film. Aging is not hidden, the real battles of poor health, memory loss and death are present, however life is celebrated at all times. When I think of palliative medicine being about living life to its fullest, this movie represents that to a tee.

Following is the trailer of the film from YouTube, if the link doesn't appear as a subscriber, head to the original post to see. Also follow this link directly to Youtube to see the performance of "Fix You" I spoke of earlier.

In 2005, Dana and Hart Perry's 15 year old son, Evan, committed suicide after a 10 year struggle with bipolar disorder. As the Perry's are both filmmakers, Evan's entire life (literally from before birth to his funeral) had already been recorded. They added interviews with family, friends, teachers and clinicians and made the documentary Boy Interrupted. It was an official selection of the 2009 Sundance Film Festival and premiered on HBO August 3rd. (It can now be seen at HBO On Demand for those interested.)

At age 5, Evan began talking about death. He was described as having an obsession with death and often talked about killing himself and others. He was first diagnosed with depression and started on Prozac. In the documentary, his teachers describe his behaviors. They describe him as an intelligent and creative boy. He wrote plays about death and journaled about his feelings. Below are two of the poems found in Evan's journal, written around age 8.

Sometimes I feel like
an owl in the day.
Just let me say
I want to end my life
with this knife.
But this is only sometimes
But this is only sometimes

Sometimes I feel alone
And no one cares for me
Sometimes I feel that
I'm in the darkness
And nobody can see me

At age 10, Evan nearly jumped off the roof of his elementary school, in an attempt to commit suicide. At that time he was admitted to a psychiatric facility and diagnosed with bipolar disorder. After being started on lithium and living away from home at Wellspring, a school/group home, Evan improved and for several years did very well.

Meanwhile, the documentary tells the story of Scott Perry (Hart Perry's brother) who also had issues with depression and committed suicide at age 21. They interview his fiance and mother (who discovered his body but does not at all recall what happened that day). Added in are interviews that Hart Perry did in 1971 (when he made a documentary on the making of the sculpture that was placed on Scott's grave). The documentary makes a point to show the parallels between the two suicides through showing similar comments made then and now. The interviews (those in the 1970s and the current ones) actually take place in front of the same painting.

After his lithium was tapered down in an attempt to come off of it, Evan jumped from his bedroom window, killing himself. His funeral is included in the documentary.

Some reviews have called this film heartbreaking. It's definitely very emotional and quite disturbing. It's an excellent film but wasn't an easy watch. (Childhood mental illness, suicide, grief stricken family and friends. Need I say more?)

At the beginning of the film, you see Evan's family cutting down a tree and turning it into beams of wood. You don't find out until the end that these beams go into making a barn at Wellspring (the facility that his parents credit for keeping Evan alive for years). I think it is interesting how the tree is used the documentary. It's cut down and cut apart at the beginning of the film and we don't really understand why. At the end, the destruction is turned into something. Like a heart breaking experience turned into a documentary. It ties the film together.

Below is a scene from the beginning of Boy Interrupted.