If he had been able to speak, Malcolm would have said "go for it". All his life he believed decisions must be based on the greatest good for the greatest number. It is nonsense to suggest that the filming of my husband's last moments meant his privacy was invaded - he had been filmed for years in the past. Paul Watson's first film with us, which documented the early effects of Alzheimer's, had been seen worldwide eight years ago. Malcolm's story is in the public domain already.
If this new film, which arrives at its natural conclusion with Malcolm's death, produces a response from the public that spurs politicians to make better decisions about the future of dementia care, then Malcolm's death will not have been in vain. The death scene serves a purpose and makes the important point that in Alzheimer's we confront a killer disease, a disease that has overtaken cancer to become the second biggest killer in Britain after heart disease. It wasn't an impulsive, spur of the moment thing, as has been implied by some.
I believe we need to face up to death. When I was a child I was kept away from death and serious illness, and I grew up in fear of both. In this case, as the film shows, the young grandchildren were at the deathbed. They saw the grownups gathering and they wanted to be there too - and why not? They weren't in the least bit fazed. Is Grandpa going to die? Yes he is. Can we stay? Of course you can. And I believe now that they have seen a death, that's one bogey extinguished - they know it's nothing to be frightened of.
It's almost impossible to predict how long people will live with Alzheimer's. Malcolm was initially given between five and eight years in 1991, and so we did think that by 1999 the whole thing would be over. But Malcolm proved us wrong, bless him; he wasn't going to let us get away with that.
In 2004, when Paul started filming again, Malcolm was expected to die with every new chest infection. But we realised that he didn't want to do this, he wanted to carry on living - it was almost as if a primitive instinct for survival came about now that he no longer could rationalise it and say, "Oh hell, I've had enough."
A better name for Alzheimer's and other forms of dementia could be brain failure. People would then understand it as they understand heart failure and kidney failure. And brain failure this is. Because the brain controls all we do, say and think, because it controls all the bodily functions, when it fails everything fails in turn.
About a week before he died I said, "I think this is it, I've got this sense that Malcolm is giving up." His swallowing had gone, and Paul had already filmed the most extraordinary pictures of all, the huge loss of weight that happens when the brain can no longer tell the digestive system to extract the nutrients it needs from the food. The most shocking part of the illness to me was to see Malcolm as no more than a skeleton with skin stretched over it. I feel sure viewers will feel the same.
I allowed the last act of this 11-year story to be filmed because it was the only natural ending. It clearly shows that the only escape for him was the gateway of death and he had to walk through that gateway. What is palpable in the film, after you've watched these rather horrific pictures of Malcolm being tended in the extremities of the illness, is almost a sense of blessed relief when he dies. He dies very peacefully; it was a good death, it was calm, he was surrounded by the people he loved. And it was a release for him: he had not left the house for five years because he was simply too frightened of the noises outside. It was a release for me, too. I don't mind admitting that.
Barbara Pointon