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November 04, 2009

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Mona Johnson

With his permission, I'm posting an email response from Ben Shelton, the filmmaker behind My Name is Lisa. He welcomes thoughts about whether he should make a feature film based on this video.

***********************
Mona,

Thank you so much for your email. I get emails about "My Name is Lisa" all the time... People from all over the world email me and let me know what this video means to them... Most people have either lost a family member to Alzheimer's or are currently caring for someone with a form of dementia. 99% of the emails I get tell me that I've "nailed it perfectly" what it's like...

But I love your email, and I thank you so much for pointing it out. Because I think you've nailed it perfectly... I totally agree that we should tell a story about an Alzheimer's patient who is fighting... who is courageous... who is strong... I really love that. Because I've gotten emails from people who have identified themselves as early onset patients with a history of dementia in the family.

The truth is that "My Name is Lisa" is a story is about Lisa. It's not about Lisa's mom, but it's about a little girl who deals with something far above her maturity level. That's the heart of the story. Alzheimer's is the backdrop that Lisa lives in, but the story is about a caregiver. And I think that's why so many caregiver's identify with it.

Perhaps a companion piece would be good for "Lisa", but I've been seriously considering creating a feature film based on "Lisa" and I think that would be the best way to explore the strength and courage of someone with early onset Alzheimer's. What do you think about doing a feature film that expands on this story? I'm a filmmaker, and so that's where my focus is... It's going to take a lot of work and raising money, but it might be a very powerful film.

Let me know your thoughts. And thanks again.
Ben

Patty McNally Doherty

It's just human nature. It's simple to make a film or video or info piece about the horror of horrors - Alzheimer's! Please cue the appropriate scream and shriek from any leftover Halloween music. More challenging to show ALL the truth, not just the part that makes for good drama. And lord knows there is enough drama surrounding this disease.

When we filmed my father and put together the video for The Unforgettable Fund, we debated what footage to use and not use. We felt it made a more powerful statement to show his daily ramblings and amblings, leaving in the raw emotion my mother felt when talking about his disease.

He's been dead for almost four years. And the further removed I am from the years of caring for him, the more amazed I am at all the laughs I can remember having during that time. However, to be completely truthful here, and I'm only speaking from my own experience, I think Ben sugarcoated Lisa's mom's dementia.

ElderGuru.com

I too posted the "My Name is Lisa" video on my site:
http://www.elderguru.com/alzheimer%e2%80%99s-disease-children-and-caregiving-short-film-2007/

Upon reading your post I had the same reaction as Ben, that this story was about Lisa, not about the mother. For that matter, I think the short film ends on a positive note, not on a negative note, which your post implies. Lisa comes to terms with her caregiving role at the end and successfully blends caregiving with her video "book club" idea that kept getting disrupted by her mother.

The reality is that, based on my experience with people with Alzheimer's and their caregivers, is that in every case it IS a dire situation, if not at first, it is so later. Trying to pretend it's something else does not help anyone.

Does this mean there is no purpose, meaning or joy that can be found in the process? No, of course not, but I never believe in sugar coating the facts.

As to Ben's question, yes, I think a feature length film about Lisa could be successful, but it has to carry the same feeling and meaning that the short film carries. It must be original and creative. The writing must be superb. It's often easier to achieve reader/writer meaning and purpose in a poem than it is in a novel. I see moving a short film to a feature film as moving a poem to a novel. It isn't easy, but it can be done.

Richard

Hello

this event is really two events. Is the film itself an accurate portrayl of what is is like for a family to live with with someone in it who has memory loss? Yes, for the three minutes it shows.

the second event is the promotion of it by an organization who claims to serve the interests of families living with dementia. Does this in any way serve those families? No.
Does it in any serve the interests of an assocaition hell bent on raising money in search of a cure? Yes. Does it promote an accurate and useful source of information for the genteral public to understand what it is like to live with memory loss in a family? No. It creates fear of the disease, fear of people who have it. Fear is the product being promoted. Why? You better support (make that contribute) to the National Alzheimer's Assocaition or this might happen in your family.

Why would the assocaition ever even consider promoting this? It is a well intended effort on the part of the film maker to portray a slice of life. The slice he selected is too small a slice to use to promote alzheimer's awareness month.

Richard+

karen

We need to show the needs of caregivers and the needs of people with Alz's . It has to be made known that careing for someone with Alz's and having Alz's. Takes away your life as you know it. Uses all your resources. We need help with paying for medicine, Docter bills,supplies , food and care. We don't need to scare people by showing them awful video's we just need to spread the word. There is not enough help out there. Someone Find it. Please.

Laura Bramly

I first saw this short movie as the result of Richard posting it on Facebook with his comments, so I was already somewhat jaded going in. I think that it shows a somewhat accurate portrayal of the stages of Alzheimer's and gives a hint of the anguish, confusion, anger and frustration of a child of a person with early onset Alzheimer's. So, that's fine for a short and fine for an artistically-bent film. But the Alzheimer's Association should never be sending something like this out asking for people's opinions. Any film about a person and family dealing with dementia needs to look at all the angles and fill in the gaps (i.e., when did Lisa's mom get a diagnosis? What was she doing to try and slow the progression and keep herself as healthy as possible? Where was the husband, the rest of the immediate family, friends?? Were Lisa and her mom truly completely alone?). Just like a film cannot only show the bad (as this one does)it cannot only show the good.

I believe, as Mona does, that any film needs to show that a person with dementia has the potential to find purpose and meaning in their life and to make a meaningful contribution to the world. However, a film showing only this would be a unrealistic portrayal of a person and family dealing with the disease. Thus, if Ben Shelton makes a full-length movie, it needs to show both the anguish and the successes. I think that "Karen" had some great ideas for what ought to be highlighted in such a film, such as the expense, the stigma, the trouble finding a good and understanding doctor, the difficulty in accessing resources. This can all be done whilst also showing how a person can live positively with Alzheimer's. Ben Shelton should ensure that he has a very good advisory board when making such a film, one that includes people with dementia and care partners, as they are the true experts.

Dave Sheehan

I think I first heard of the film on the MythofAlzheimers.com website. I am on "suspended diagnosis" betwixt and between MCI and one of the Alzheimer diseases.I trust and believe the filmmakers brief explanations for making the film. But my initial bad taste reaction was remembering reading about the bad old days and those national socialists portraying the helpless, hopeless and demented to sell another sort of solution. His next film should provide a balance of the good days and good memories other failies affected have expressed!

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