After the diagnosis there was a compulsion to find out more – what exactly is this vascular dementia? What is going to happen? What changes can we expect? What should we be doing to stop it getting worse? Or, knowing it is most certainly going to get worse, what, if anything, could we do to slow its progress?
The Goldfish has a mixed type dementia: vascular dementia with a bit of Alzheimer’s thrown in. Vascular dementia is commonly caused by a stroke or a series of small strokes. Brain cells are deprived of oxygen and die. The Goldfish had not had a stroke – at least not a major one. However, it seems he could have been having a series of TIAs, little strokes – sometimes while he is asleep – which cause the damage. Some parts of the brain can be unaffected though it’s clear those parts affecting short-term memory definitely have been.
Vascular dementia progresses in a ‘stepped’ way. Symptoms may suddenly worsen due to a stroke and then remain the same for some time. Months, or even years later, another stroke will make the symptoms worse again. However, when vascular dementia has been caused by several smaller strokes, a more gradual progression of symptoms is likely to be experienced – which has been the case with the Goldfish, though the downward steps are now beginning to speed up.
I was heartened by the information people with vascular dementia tend to retain their personalities and emotional responsiveness more than those with Alzheimer’s. The down side of that, of course, is they are more self-aware of what’s happening, which can lead to depression. Occasionally, the Goldfish says something which indicates he understands he has what he has. One day, he said: “It’s not fair that there are people far older than I am who still have all their faculties.” I didn’t really know how to respond, not wanting to reinforce his thoughts but I was mentally agreeing with him – it is unfair, bloody unfair.
It was all new territory for me and for Wee-sis (and I suppose for the step-monster but as she steadfastly refused to engage with any of it I have no idea what her thoughts were). Everyone knows of someone coping with a family member with Alzheimer’s or other form of dementia but until it actually affects you personally it’s something you acknowledge is a terrible thing but you don’t rush home to start Googling it. Once it is your own family the need to know everything increases a hundred fold.
I remember when I was a child a neighbour’s mother had dementia. It wasn’t called that then – in fact I never heard the word Alzheimer until I was an adult. People said she was having her ‘second childhood.’ I found the phrase bewildering. Children weren’t aggressive monsters like this woman was. She would scream and chase us children if she saw us in her garden – we, of course, in the revolting way of children, provoked this by dancing by her kitchen window with potato sacks over our heads. How could we?
Now, we do our research, desperately hoping the Goldfish will not turn into a scary, aggressive person like our neighbour’s mother.
All our reading stresses the need for mental stimulation. The Goldfish is well past the stage of doing soduko or crosswords, though he did use to do one every day with the step-monster and maybe we should have noticed when he began to lose interest in it. The step-monster never mentioned it. Oh, hindsight, what a dreadful thing it is! With the realisation you missed something which was probably an important marker comes instant guilt.
Books and websites say reminiscences are important. The early memories, which are laid down first, are the ones which remain the longest. The brain is no longer able to lay down new memories so we should be working on accessing those earlier memories.
I found a series of books called ‘In Grandma’s Day’ which the Goldfish enjoys, especially the one on travel. It has pictures of the Queen Mary, which he remembers seeing being built on the Clyde. A picture of the AA (Automobile Association) man standing inside his little sentry-like box prompted the memory of such a man being on duty near where he lived. Each time he looked at the picture, a little bit more memory came back. “My mother used to take him tea in a flask,” he told me, pointing to the man in the book.
I went on a rummage to find old family photos. The Goldfish was a keen photographer in his day and when Wee-sis and I were children he took hundreds of photos. I unearthed some black and white photos taken during his time on the island of Islay, where I was born. I was thinking it would be good if he could remember the names of people and I wrote them on the back. It didn’t quite work like that. He looked at the first few pictures with some interest but when I asked him the names of the people he suddenly asked: “Where did you get these?”
“I found them in your study.”
“Well, you have no business poking about in there.”
“Oh, sorry, I just thought it would be good to have a look at them and remember the days when you enjoyed the ceilidhs – and maybe put some names to the faces. I was very small then and don’t remember who they are.”
He lapsed into a sulky silence until I gathered up the photos and put them away, wondering how I had misjudged things. Was it because he didn’t recognise anyone in the photos and felt embarrassed, not wanting to admit it? I didn’t think he was bothered about me rummaging around in the study and suspect his ‘annoyance’ was to cover up not knowing the people in the photos.
Strangely, the photos he does keep looking at are a dozen from his trip to Pakistan which are in a small cardboard-covered folder. It must be about 25 years ago since he came to visit me there. He flips through the album identifying the photos he is in but doesn’t remember the names of anyone else. He looked at it a lot for a while and then it vanished. I eventually found it in the cupboard of the telephone table in the hall. I think he put it there for safekeeping but who knows?