We tried to play Scrabble at his care home the other day. Something we have done thousands of times, more or less every night since we had the board as a present from our son Nick over 30 years ago. But this time Malcolm couldn’t see any words at all. He couldn’t even understand the letters on the rack. It was gone, all gone. The dementia had taken it away.
Until then we had loved it. I’ve got notebooks with all dates and scores in them going back years. And the old Scrabble board itself is falling to bits, only held together by sellotape, because of the number of times we used it. We used to play Travel Scrabble on holidays and even with his dementia Malcolm had still been able to recognise words until recently. We used to play his turn together but he could still see the words. He was genuinely playing on his own with a bit of help from me.
But then things changed. At home he became very, very quiet, disoriented. He also became incontinent and we had disturbed nights where I would be up at 4am, changing bedding and then never getting back to sleep. I was getting ratty, losing my patience. I’d say to myself: he can’t help it. It’s the disease not him. But it was really hard to cope and you eventually come to a breaking point.
That was when he went into the home but he likes it and they like him. It’s his safe haven. He feels secure and looked after and they say he’s a real gentleman. Now we have quality time together. He’s pleased to see me although I’m not sure he knows who I am. I said to him the other day: “do you know what my name is? It begins with an A.” He said , “Yes. Alfred.” I had to laugh.
We’ve been together for 55 years, since 1970 when we met on holiday in Ibiza. Me from Holland and him from England. He was quiet and shy in those days but he became much more out-going after he had been diagnosed with dementia. “I have dementia but I have no symptoms,” he used to tell people. He was right and the Dementia got him in the end. But for a long time he would sing and dance (especially the foxtrot) and he loved to whistle. We had fun together.
We went out every day. We walked along the canal and back, getting to know people and the names of all their dogs. He was - he still is - really physically fit. We joined lots of activities and he was even ok in the early days to go to the shops by himself. But as time went on, he did tend to get lost. One day we were in town where a special event was happening with music and all kinds of local dignitaries, including The Mayor. I said, ‘Stay here, I’m just going to take a quick look in the farmers market. So wait for me and listen to the band.’ When I came back - only a few moments later - there was no sign of him. I looked everywhere but I couldn’t see him. You feel yourself starting to panic. And then I heard his whistle. And there he was, sitting in the Mayor’s special chair whistling along & conducting the music.
Another time we had three police cars out looking for him when he had gone astray. Once when I was very unwell with Covid, I asked him to get me some Paracetamol from the local chemist in High Street, he went missing. He eventually answered his phone only to tell me he was having a lovely cup of coffee in a cafe in Dover. Miles away. He’d just got on a bus and got off when it stopped.
So now we have a better quality of life. Both of us. Malcolm is in his safe haven, we see each other every day and I now have more time for family and friends.