We were all so consumed with Mum’s long illness and her end-of-life care that Dad was somehow overlooked and we put his befuddlement down to his age, the grief, and his general deterioration.
I guess when he forgot to tell us about Uncle Stanley’s funeral we might have thought something more serious was going on. Even then it was almost 2 years later before we got a diagnosis.
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I see the same thing happening now with other people – the endless explaining away of missed appointments, the repeated stories, the unopened post, the surprise when you tell them something for the 100th time and their absolute belief that, no, you’ve never told them that before! And all because people are so fearful of the thought of dementia. Much like other mental illnesses they don’t want the label, the stigma. But no amount of denial is ever going to help those who have it or those who care for them.
If you are old and you don’t have a diagnosis – of any illness – you are just in decline, getting on, and, if you’re lucky, not bad for your age – and you are mostly just left to rust.
But with a name for your condition you are instantly the member, however unwilling, of a Club. There are clubs, or support groups, for most illnesses: Parkinson’s, Dementia, Multiple Sclerosis, Heart Disease and, of course, Cancer. Cancer is the illness that trumps the rest. Cancer Club members even have their own nurses!
As soon as we could say Dad had Alzheimer’s we were part of a huge network. We got practical help, Dad was exempt from paying Council Tax, he got a Blue Badge, regular visits from cheery Alzheimer’s Scotland support workers, information by the ton and sympathy. Lots of sympathy. People would shake their heads and say ‘Ah well. That’s too bad.’
Alzheimer’s doesn’t kill you. You die with it, not from it, although of course it doesn’t help. But it’s not a terminal illness. There are no time scales, no ‘how long has he got’ conversations to be had with the medics.
For most types of dementia there is no medical treatment. And some sorts are worse than others. Some varieties can turn a person into an alien: violent, aggressive and unpredictable. My uncle (on my mother’s side) had that variety and he nearly killed my aunt. Other people I know are living with the version that brings with it a severe form of paranoia so that every time they visit their Mum she shouts at them ‘have you come to kill me?’, and flinches if they try to take her hand. Perhaps worst of all is the variety where the patient is completely aware of their condition even as they degenerate.
So if you’re going to have dementia (and there’s a genetic component, so if your parents have it, you may be in line for it too) the one you want is Alzheimer’s.
Because members of the Alzheimer’s Club have their own drug! Dad is on Aricept. At the time of his diagnosis Aricept was not recommended by NICE (the rather incongruous acronym for the people who decide which drugs you can have and which ones you can’t) on the basis that it only worked in 50% of patients who took it, and that among those 50% there were some difficult side effects – vivid dreams and nightmares, sweats and explosive diarrhoea. So in England and Wales the drug was not routinely offered. But the Scottish equivalent of NICE takes a ‘nothing ventured, nothing gained’ approach and prescribes it for everyone unless it can’t be tolerated or doesn’t work. Aricept is not even that expensive as drugs go. £80 a month, or roughly £2.60 a day.
I noticed a difference in Dad after only a week on Aricept. He started to be more like his old self; funny and quick witted and definite in his views.
Did he want a cup of coffee after lunch?
‘What do you think?’ he would say with a mischievous ‘is the Pope a Catholic?’ kind of twinkle in his eye. ‘And a biscuit, if there is one.’
And for a while he would say ‘I may be demented - but I’m not stupid!’ until we got the message.
The drug is losing its efficacy now but we have had three good years that we would otherwise have lost.
I’m not saying dementia is ever easy – believe me, it’s not – but it’s not all bad and I do think there are worse things.
Instead of ignoring it or running away from it the better, braver and sometimes much harder thing to do is grab hold of it, talk about it, make fun of it – in a kind way – stick your tongue out at it, tell it, and yourself, that you won’t let it defeat you. And get a diagnosis.
I know that this isn’t a competition and I don’t want it to sound like that ghoulish game of ‘which would you rather be? Blind, deaf, or dumb?’
But given the benefits of Aricept, the fact that Dad’s not in any pain, still has his sense of humour and plenty of things he enjoys; given the increased awareness and the tremendous support now available to dementia sufferers – even if you do have to battle to get it; and given that so few of us are likely to join the ‘died-peacefully-in-their-sleep’ gang, I would say that the Alzheimer’s Club is really not the worst club in the world to belong to.