Married to Alzheimer’s: I never imagined how difficult it would be

Tony’s birthday was on October 9th. He was so ill this time last year I hardly dared hope he would make it to his 84th birthday this year. I rather suspect he would like to have done a James Dean – live fast, die young – but, given the strength of his life force, that was only ever a remote possibility.

The last few weeks have been tough. I had an operation on my wrist and Tony’s Alzheimer’s has gone through another drastic decline. He is incredibly passive now, but also incredibly incapable of performing simple, everyday tasks.

I asked him to chop an onion, and gave him the onion, knife and chopping board. He stood looking at them and then said, “I don’t know how to do this. I’ve never done it before.” That was obviously not true, but in that moment it really was his truth.

How has it come to this? The truth is, I did not know how difficult it would be. In the early stages of Alzheimer’s, Tony did not seem much changed. I was optimistic about my ability to cope.

If I had known then what I know now, I might have been more doubtful about my own strengths, but at that point ignorance really was bliss.

The thing is no one can explain how things will work out. The progress of dementia, totally unlike other progressive illnesses, is highly particular to the individual. No two people with dementia will ever have the same experience, or see the illness progress in the same way. As a carer, all anyone can do is make decisions that feel right for their situation.

A significant advantage of Tony’s dementia was being able to organise a surprise birthday party for him. He had absolutely no idea what I was up to. The party was held in the town hall, so it was easy enough to make excuses for being there, me being the mayor and all.

The party was lovely; a happy, pleasant evening. Even though he no longer recognised many of the people without prompting, Tony had a great time telling his stories. The only potentially difficult moment was as Tony arrived. Someone let off a party popper close to him and there was a collective intake of breath, everyone with the same thought, “Oh my God, his heart!” Fortunately, Tony laughed it off, saying he thought he had been shot.

A few days after his party, we travelled up to the Scottish Borders with our friends, Maggie and Matthew. We rented a cottage in the middle of nowhere, on the banks of the River Tweed. It was an idyllic setting. With the help and support of the three of us, Tony enjoyed himself, and sharing the responsibility made life much easier for me.

Maggie and I are both keen quilters and we took Tony with us as we explored the Borders Quilt Trail. We had a great time fuelling our obsession with fabrics. Tony was very happy to be fussed over by the women in the shops who gave him tea and cake while Maggie and I rummaged. A perfect arrangement.

I was talking to someone recently who told me she did not think it was appropriate to take people with dementia on holiday, or even out of their everyday surroundings. She believed this would only add to their confusion. I understand her point of view but, as I wrote earlier, blanket assumptions do not apply to dementia.

I absolutely believe maintaining normality and social interaction in the daily lives of people with dementia slows down their deterioration. It was an utter joy to see Tony enjoying the autumn colours and gentle strolls by the river.

I was speaking to this person in the context of Dementia Friendly Todmorden, a project I am involved with. We are planning to hold a Christmas Day lunch for people with dementia, and their carers. I believe carers will understand this event will be appropriate and will be perfectly capable of making an informed decision.

The event will also be open to older people who will be on their own and would enjoy a meal and some company. There is a great sadness in being alone at Christmas. There are so many events for people on their own in the lead up to the holiday but so little on the actual day.

We have been overwhelmed by the generosity of people already volunteering to help out. Our local supermarket has promised to donate food and we are working out the logistics of cooking a Christmas meal for up to 60 people. We plan to make it an annual do: a jolly one for our community.