Last week was pretty high profile. Barbara Windsor’s husband Scott Mitchell announced that his wife has Alzheimer’s. That immediately led to a lot of very useful discussion about the wisdom of “going public.” It became quite a news story although the press seems to have completely forgotten that actor Timothy West did exactly the same thing several years ago when he told the world that his wife Prunella Scales has the dreaded disease too.
In response to the Barbara Windsor news, the Daily Telegraph (for which I have been a contributor on and off for 25 years) asked me to write a piece detailing our own experience about being up front about living with Ms Alzheimer’s. It was published on Friday. https://www.telegraph.co.uk/women/life/husbands-alzheimers-diagnosis-has-agony-wont-let-become-dirty/
Then, on the back of that, I was invited to go on LBC radio’s Andrew Pierce’s show on Friday night to discuss the same topic further. All in a day’s work for a journalist and I’ve chatted about all sorts of topics on radio (and occasionally television) over the years but it feels a bit odd when the subject matter is something at the very heart of your own life. By bedtime, I certainly felt that I’d done my bit for Alzheimer’s awareness.
While I was talking live to Andrew Pierce on the landline in my office upstairs, MLO was downstairs listening to it on the radio. I’d carefully tuned it in for him before going up to take the call. When it was finished, he came up to my office, eyes shining approvingly, and said “How about that then? I never thought I’d be talked about on the radio! You did well”
I believe passionately that problems are best confronted head on and with honesty. And it’s something MLO and I agree about completely. If there’s an elephant in the room then it makes sense to say “Hello Nellie. How are we going to deal with you? Would you like a bun?” Pretending she’s not there will not get rid of her. You’ll just be on your own with a roomful of elephant dung. Similarly, you have to say to other people “We have an elephant to contend with” rather than letting them notice and wonder while politely pretending not to.
Frankness means that you can have proper conversations with other people. They will respond in the same way – almost always with sympathy and kindness – once you’ve said matter-of-factly “My husband has Alzheimer’s” It confers permission on other people to be open. And that applies whether it’s a till operator at the supermarket, the dentist, the window cleaner or anyone else, And it’s an illness. You don’t have to apologise for it.
Of course I informed close, and then wider family and friends, very soon after diagnosis. Like Barbara Windsor, My Loved One, finds this a relief. “If people know about my problems then they make allowances for me which makes life much easier” he says, not always managing to articulate the end of the sentence but I know what he’s trying to say.
Increasingly, though, I have to report, that they know about his problems whether we say it overtly or not. The shuffling, shambling gait is a giveaway. So is the blank stare. .
And sometimes it’s surreal. When we arrived at a concert in a local church at the weekend MLO solemnly asked the usher “Are these seats preserved?” which still makes me giggle several days later. Aspic? Vinegar? Formaldehyde? It’s the same Latin root as “reserved” (MLO was taught Latin by the redoubtable Mr Rayburn at Alleyns school) and only one letter away, I suppose. Even Ms A occasionally finds her sense of humour.
Barbara Windsor is – very happily it seems – married to a man who is 25 years her junior. She is 80 and Scott is 55. They’ve been married 18 years having first met in 1992 when he was only 28. Under the circumstances that’s a huge advantage because he can take care of her, ensure she has what she needs, make the decisions without having to worry about his own health and demise.
When – as we are – a couple are close in age it’s a real worry that illness will catch up with the carer before the caring job is complete. Keep eating your broccoli and taking long walks, Susan.