An Adaptive Family

On Sunday I spent the day filming with an amazing family which has unquestioningly taken on the task of coping with old age and dementia at home.  Ever since Doug (my friend Adem's 91 year old Grandfather) was discharged from hospital after a long stay with for a broken pelvis, he has been living in a bed in the front room of Adem's mother and step father's terrace house.  

Sunday Lunch:

Doug before going to hospital: 

He went into hospital physically well but was showing signs of relatively mild dementia. During his 3 months stay, he became and has remained completely confused, and is now unable to hold a conversation, although he talks a lot and can more or less express his needs. He is incontinent and needs to be changed regularly.

I wanted to film the family in action because I was so impressed by how they were coping with such an unusual set up in their living room.  Adem's step Father Rick no longer works, and has become the full time carer. Adem's mother Carol gets back from work and immediately helps out. They are often kept awake right through the night.  The rest of the family helps whenever they can to give them breaks because Doug can't be left alone in the house.

Although a care team will come three times a day to wash and change Doug's pads and dressings, the family will change him at least another six times in between these visits. It requires some serious nursing skill and is not for the squeamish. ALthough no one gave them any formal training before Doug's discharge they do it all with great humour and look after him with incredible patience. They are reconciled to it being their role, Doug having looked after everyone when they were young.  I wonder how many other families around the country are doing the same thing with the same stoicism.

An edit of the material shot with Doug will form part of the triptic of films in Newcastle if things go as planned.

Keeper

I recently finished reading Keeper, Andrea Gillies's prize winning account of a year and a half spent caring for her Alzheimer's suffering mother-in law Nancy, and depressed and ageing father-in law, who had moved in with her and her young family in a big house in the middle of nowhere somewhere in the north of Scotland.


Its an utterly unromantic memoire of a ferociously difficult period of her life.  Whereas in John Baily's books about caring for his wife, the writer Iris Murdoch, his profound love for her after a life shared together justified the sacrifices her Alzheimer's forced him to make, it was much harder for Gillies to set her life aside as she'd hardly known her mother-in-law even when she was in good health.


The book alternates between descriptions of her struggles to care for Mother and Father while trying to maintain her own self respect by working as a writer, and clearly written summaries of her research into the science behind dementia gleaned from all the books and blogs she could find on the subject.  She precisely documents the irrationality of the effects of disease as it works its way through various important parts of Nancy's brain. The rapid mental deterioration combined with her physical health and mobility makes her mother almost impossible to cope with and ultimately drives Gillies herself into depression and near collapse.


She also describes the problems with social and health services who are supposed to be helping; how difficult it is to understand then work with the system, the constant intrusions into the home from care staff putting family on public display and the difficulty of getting first repsite care, and eventually a full time place in an Alzheimer's equipped home.


The book reminded me how relatively well my sister currently is given the prognosis of her diagnosis, and how fortunate she is to have remained relatively stable for the past five or so years.  It helped crystallise my desire to film her in her good spirits, to find ways to film the way she is still able to get intense pleasure from life despite her lack of a working memory.   I have no idea what will happen in the years to come, and I hope that somehow my sister does not follow the same path as Nancy, but for now I am determined to focus on the positive.

Presenting research: Installation plans for NLFF

It looks like I will be presenting my work at the Great North Museum in Newcastle during the week of the Northern Lights Festival, 20th - 27th March 2010.  I plan to create an installation that will take up the end section of a huge new space.  This space will be divided by a partition and I will take the end section by the window, which can be blocked off.

This is a sketch showing an impression of what I am hoping might be possible for the installation. Budgets haven't been fixed, and much depends on what I am able to produce in the coming 3 months, so this is still up for discussion.

I would like the room to be fairly dark, with the biggish screen (3 or 4m wide) in the middle being ideally projected on from the back.

The film on loop on this central screen would be a meditative piece, about 10 minutes long designed to work as a loop so it doesnt matter too much at which point you walk in. It would be structured as a series of short 'questions', drawn from my initial proposal which remains for me a good starting point.  These questions will be explored and expanded upon through the footage shot during the project, with my sister in France, at the Institute of Ageing Brain Bank, and with elements of other pieces of research.  It will contain my own narration where necessary to get the question across.

Then around the room, possibly against the walls, but ideally pointed away from the screen, are 3 or 4 TV like monitors playing different short 'documentaries' on each.   These films will be self-contained succinct films about some of the most interesting things and places I have been exploring.

1: How medical researchers understand Dementia. (mainly drawn from time at the IAH in Newcastle

2: Ward 23 - The difficulty of caring humanely for those with dementia.

3: SPECAL - The theory and practice of this new approach as explained by Penny and her team.

4: Adems Grandpa - A weekend at the home of my friend Adem's parents, who are caring for their 90 year old grand father.  He has been moved into their front room for the past few months where he is pretty much confined to bed, and suffers from advanced dementia.  The film will explore how the family is coping with this period of change.

I imagine each table would have a book and pens with an open invitation to write comments in response to the films.

I also hope to have a computer set up in the space, connected to this blog, which people would be able to read and add to.

I plan to be in the room all week with a small editing suite, making changes to the films, talking to people, and explaining it all, so that it remains a work in progress, and doesn't get too fixed at this stage.

It would require:

1 x Good video projector

1x amp and speakers

1 x rear projection screen and stand

4 x TV/ Monitor

4 x DVD player / computer with DVD playing capabilities

8 x headphones (2 on each table) -these can be very cheap these days

4x tables and chairs

1 x computer with monitor - online

1 x table and chair

Seeking donations/loans/suggestions! Please contact me with ideas!

martin at martinhampton.com

The Alzheimer's Choir

The Alzheimer's Choir, a beautifully made documentary, screened on BBC2 at the end of last year, starts at a meeting of  "Singing for the Brain", a group of singers in Bristol made up of Alzheimer's sufferers and their spouses.


The blurb for the program explains, "As the group bursts into song, an extraordinary thing happens. People who may not even recognise their own partner find the words of a song learnt half a century earlier, and suddenly - just for length of time it takes to sing a few verses - it is impossible to tell who is the Alzheimer's patient and who is the carer."


The phenomenon of music opening the memories of Alzheimer's patients is fascinating and much discussed elsewhere, but the film doesn't really concentrate much on this.  It's more about individuals' experiences of Alzheimer's, either the sufferer's or the carer-partner's. These moving accounts are told direct to the camera in a series of set-piece interviews in the homes of some of the people gleaned from the Alzheimer's choir.  Its a gentle film. We don't see directly the dark face of the disease but you get a sense of its vicious cruelty lingering in its aftermath.


Watch it here if you can on the iPlayer before it is removed on 21 January 2010