Blogger and The Joy Club member Geraldine Durrant writes of her and her husband’s own slow journey of coming to terms with his condition, learning the word dementia over and over…
You can find the previous instalment of Geraldine’s column here.
It was a symptom of Patrick’s condition that although he could still converse on everyday subjects he was quite unable to remember new words – or old words that were a little out of the ordinary.
So at a time when, for example, ‘vaccination’ had become the stuff of daily conversation as friends discussed whether they were on their third or fourth round, Patrick was simply unable to recall what it was called.
“You know,” he would say, gesturing helplessly at his arm, “that thing they do….”
He was equally at a loss with the ‘catheter’ which now loomed so very large in our lives, so I gave him a small card inscribed with odd words to keep in his pocket, both for the avoidance of doubt on his part, and in a bid not to be driven mad by constant questioning, on mine.
And the word at the top of the impossible-to-remember list was sadly, but perhaps inevitably, ‘dementia’.
The long session with the memory clinic nurse had at least convinced Patrick he had a problem – although he bridled at the suggestion that it was some form of dementia.
“You may think that,” he said sniffily, “but I’m afraid I don’t necessarily agree with you.
“I think what I am suffering from is demotion…
“Or is it demolition?”
His face brightened as he recalled the right word at last.
“What I am in fact suffering from is commotion…”
This was not so far off target that it was worth correcting, but it helped me decide that we would watch a new BBC documentary, Dementia and Us, together.
I hoped it might help Patrick understand we were not alone in his troubles, while being prepared to turn it off if it proved too close to home for comfort.
But to my surprise Patrick watched with an intensity I, by then, rarely saw.
One couple, Christine and Gilly, were, I recognised, like us – only a year or two further down the line.
He was an obviously lovely man, full of smiles: Christine was a devoted wife torn heartbreakingly between love for her husband and the realisation that she was at the end of her tether with exhaustion.
She wept as she explained feeling like a failure even to consider the idea of care – exposing the toll dementia takes on both sufferers and their families.
And I wept with her.
But perhaps Patrick recognised his tribe because at the end, when I asked him what he had thought of the programme, he said, “I enjoyed it. And I’d like to see it again…”
The first rule of dementia is that if you can’t remember what it is called, you have definitely got it…
The following weekend our little grandson came to dinner with his daddy.
He is usually part of a foursome with his mummy and older brother but they were dropping in alone and we were looking forward to seeing them – Tom is delightful company not least because he has a quirky sense of humour and a vocabulary well in advance of his seven years.
But he was worried, our son whispered on the quiet when they arrived.
He and our daughter-in-law had explained to the boys that their much-loved Papa was not well and that he might get a bit confused about things: but Tom had one very specific concern on his mind.
“Will he forget who I am,” he had asked anxiously.
But as soon as he arrived Patrick scooped him up in his arms and Tom visibly relaxed.
And it turned out that without a bigger brother on hand to go off and do boy things with he was very much at home with his dining companions: we were not three adults and a child, but four chums enjoying a pleasant evening together over a good meal.
On leaving, Tom gave his Papa a big hug and set off happily for the car ride home, telling his daddy, who reported back later, that he’d had “a really nice time”.
“I’ve had sweets, and some pocket money – and everyone knows nana cooks really lovely food…”
So, for the moment at least, everything was still as it should be in his small world…
Geraldine Durrant is a retired journalist, feature writer and children’s author who – since her husband was diagnosed with dementia a year ago – has kept a diary about her experiences as his carer. We have the privilege of publishing Geraldine’s incredibly personal story on our blog every Saturday, so keep your eye out for more on this series next Saturday.
If Geraldine’s writing resonates with you in some way, please do leave a comment to let her know.