My 85-year-old dad has vascular dementia, the result of four strokes over several years, and one of the things we’ve learned over the last few years is that when it comes to dad, lucid is a relative term.
We’re lucky in that thankfully he still recognises us, he knows who we are, by name if not always by relationship. He doesn’t always get the family connections quite right, but it’s close enough for dad to have a reasonably clear conversation with the people he knows best. He sounds a little bit confused, perhaps, and if you don’t know him well it seems like nothing more than memory playing a few minor tricks on a sweet old man. Everything seems perfectly fine until for whatever reason the conversation turns to the realities of time or place, and then the extent of his confusion becomes apparent – because more often than not dad has no idea where he is, geographically or chronologically.
My parents still live together in the house I grew up in – they’ve lived there for forty-seven years. When it comes to familiarity for someone with dementia, this is probably as good as it gets. Dad spends most of his day sitting in his chair – he has mobility issues due to the strokes – but can’t always find his way without guidance to the bathroom, or his bedroom. By late afternoon he frequently frets about where he’s going to sleep that night, and sometimes stops in his tracks with his walker frame, mid-journey, unsure of where to go next. He worries about which way he needs to go ‘to go home’ later on, does he turn left or right at the front door, which car will he be driving (although dad gave up his driving license due to medical reasons years ago)…
We tell dad he is already at home, and he looks startled, irritated, telling us he is in a strange place he’s never been in before. We tell him it’s OK, he’s somewhere safe, but he’s unconvinced, unsettled. ‘Do you know this place?’ he asks me – Yes, I say, this is the house I grew up in, we all lived here together as a family. ‘Where was I then, when you all lived here?’ asks dad, and I tell him he was here too. He looks at me blankly, so I try to reassure him that it’s all fine, as long as we know where he is and where to find him, everything is fine. He remains uncertain, insecure, and behind his piercing blue eyes seems lost, looking for constant reassurance, and this pattern of conversation repeats in variations on a theme, day in, day out.
Time has different meaning for dad these days, too. When we visited last week, both dad and mum were due a birthday – dad’s 85th the following day, and mum’s 79th a few days later. Dad made jokes about them getting old, and we all laughed. Then my husband mentioned he’d be turning 60 this summer and dad said ‘Oh, I suppose I must be coming up to 60 soon!’ so we gently reminded him that ship had long sailed, by a good 25 years… I told dad I was going to be 58 later this year, and he was shocked. I asked him what year I was born and without hesitation he said ‘1963’. We pointed out to him this was now 2021, so we did the sums together and dad conceded – for that moment at least – if that was the case he must be older than he thought.
The last time I took dad for a walk outside in his wheelchair, he was smiling and animated and I took a few lovely pics of him on my phone camera. When we got back home again, dad settled down in his chair with his usual cup of tea and a biscuit. I showed him the pics I’d just taken and he wanted to know who the old man was in the wheelchair? He was surprised to hear it was himself, so he wanted to know when they’d been taken? I told him – About half an hour ago… And got a blank puzzled look in response… Sad not to be able to build new memories with him, but thankfully we can still share old memories from the past. Well, most of the time, anyway.
Although one old long-term memory of dad’s that seems to have been erased completely has had a surprisingly positive outcome. In the past – at least in my lifetime – dad never ate yoghurt. Apparently one day when I was a tiny baby my dad was holding me up above his head when I was sick straight into his mouth, and ever since then even the smell of curdled milk in all forms had dad gagging and retching. Until his brain destroyed the memory, and now dad happily eats yoghurt without a care in the world. No memory, no trigger, no reaction. Amazing.
I suppose every cloud has a silver lining…