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.
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Brilliant family! There's another book in there! Seriously, people are going to have to look at this kind of situation nore and more, with Alzheimer's increasing at such a rate. I have just commented on 'Keeper', so thought I would alert you to that in case you don't look back. Anne
ReplyDeleteamazing story, and like you say there are many families coping daily with a similar situation. respite care is so important in these situations. will you be covering that in the film? Nick
ReplyDeleteMartin, im in the gallery posting. its a great instillation, very touching and provocative. i'm interested to know how the difference between age related disease and ageing is being blurred, and your films really illustrate that. fascinated by the brain bank! only note that the sound bleed is quite noticeable and better headphones would help. Nick Ware
ReplyDeleteHi Martin, thought you would like an update on the star of your short film.
ReplyDeleteDoug is still with us, and if anything has changed, it is that he has improved from when you filmed him.
He is now 93. He sleeps through the night on most occasions and no longer calls out as he did in 'distress' or for attention. He still has an amazing appetite and eats the same breakfast, as you witnessed, every day.
He no longer shows any repetitive behaviours. I think when you saw him, he was obsessed with tidying four sheets of kitchen roll in his hands, which we gave him to help calm his anxiety. He no longer has any need for calming and is fairly restful and calm throughout the day.
He can have his moments, but in the circumstances these are only displayed as a totally understandable reaction. He gets very angry and upset if he is woken from a sleep to get washed or changed. I think none of us would appreciate a wet flannel in the face on wakening.
Carole and I still share the care in much the same way as you filmed, with members of the family visiting and sharing the load.
Doug spends all day watching the TV and his favourite programmes are Porridge, Only Fools and Horses, Bargain Hunt and any auction programme or house renovation. He also watched the whole of the Ashes, the Ryder Cup and the Olympics. At the time of your visit I think he was stuck on reruns of Police Academy (I could recite the scripts of all six films)
His day is full of routines but they are dictated by his timetable. We do not try and feed him at 'set' mealtimes but respond to his needs. Which is of course very different from any care that a care home may be able to offer him