Single Parenthood & I: On dementia

Every time I visit him I know another proportion of him will have gone. I just don't know from visit to visit how much it will be this time.

This piece was essentially inspired by this tragic but brilliant article in The QT by Harry Pearson, which was published earlier this year. There is more talk about dementia now than there has ever been before, but there should always be more, so here’s my contribution towards a conversation that for many years felt too uncomfortable to even begin with. Thank you, Harry, for writing this.

And so the circle is complete. I had to change my dad's nappy last weekend. He was, in all honesty, about as dignified about it all as we could have hoped for. I'm very aware of the importance of his dignity. He is an adult, not a child, and I will not let him suffer indignity as he starts this journey towards the place that we know he's going to end up at and that in some respects we're all still at least partly in denial over.

He's 88 now, and he's had a full and varied life. Seven years in the navy, sixteen living in a scrap metal yard. It's when he's thinking about the navy that it all comes flooding back. He still receives magazines and letters related to his time there. On Sunday morning I wandered into the living room and he was sitting in his chair happily reading a fanzine-like publication for former inmates of the ship that he was on more than sixty years ago.

He has two children and four grandchildren. Two of those grandchildren are now in their twenties and will forever have the memory of him at his best, but for the other two he will eventually become a faded Polaroid in the back of their minds, somebody they know was important but who they otherwise can't quite recall. One of them has no recollection of their paternal grandmother already. It's possible that they'll never see him again, because I don't want to spoil what little memory they will end up with of someone who they love very, very dearly indeed.

I console myself with what I'm able to. He's had a rich life, surrounded by people who love him. He is a good man, naturally sanguine of temperament, and he will be remembered as such. At present, he's not suffering. And ultimately, I stick to the mantra that this is just the circle of life. You can't have life without death. We all gotta go, some day.

Dementia has always been there. It was just broadly written off by most people until relatively recently, a very private grief that didn't seem to be spoken about in polite company. With my own grandparents, who died between 1978 and 1992, it got to three of the four of them to some extent; there was essentially no support and no discussion of it anywhere.

We often seem to forget how quiet the world was before the internet, the conversations that we didn't have, and the extent to which matters of even life and death were simply swept under the carpet if they felt in the slightest bit uncomfortable or incomprehensible. They're called “the silent generation” for a reason.

And there remains a belief that we know as much as we know, that illnesses that we have only started to understand are no more than a ‘fad’. You'll often hear reactionaries complaining about ‘made up’ conditions, but no. Primarily, and this is especially true when it comes to mental health, there were and remain diseases and conditions for which we didn't and don't have names, that we hadn't or haven't identified as being illnesses, or that we otherwise didn't or don't understand.

Even now, it's only when you mention dementia publicly that the full extent of how many people are touched by it becomes anything like clear. When I mentioned it on Bluesky at the weekend, I was subsumed by messages and replies. It's everywhere, and we don't even seem to notice it. Perhaps this is because collectively we really, really, really don't want to acknowledge that an illness that feels like an act of cruelty, not only inflicted upon that one person but also upon those around them, can even exist.

This weekend there were, as ever, signs of this forward-creeping fog. He asked if Spurs were playing that day on Sunday morning, even though I'd been watching the match against Manchester City with him the evening before. When I asked him what food he wanted from the Chinese takeaway that I was visiting that night, he claimed never to have eaten Chinese food before.

The last time I visited, he hallucinated a dog under the cupboard upon which his television sits. I left him with that. He always did love dogs (his childhood dog Laddie has a semi-mythical status in our family; that I know his name getting on for eighty years after he died is in itself a tribute to how much dad loved him), and this imaginary one seemed to be making him particularly happy.

This isn't my first rodeo with dementia. Mum died with it in September 2019. We don't really know how long she had it for, in part because it took so damn long to get a diagnosis. Her health had already been failing in other ways for some years. Macular degeneration had more or less done for her eyesight several years earlier and osteoporosis for her mobility. Her hearing wasn't great either. Furthermore, we don't know how long she managed to hide it from us. It could have been for years. Her deafness and blindness almost allowed her to shut herself off from the world. The formal diagnosis was little more than an administrative exercise, by the time it arrived.

I do remember the first point at which I realised that we were in the final stages of the game with her. In January of the year that she died it was her 84th birthday, and my sister put on a gathering at her house. At one point in the afternoon, she called me by the name of my older kid with the absolute certainty of someone who knew exactly who she was talking to. But she wasn’t.

Later that same afternoon, she summoned me over to her with a stern look on her face. “Ian. I've heard rumours from people who've seen you out in the streets, swearing and drinking, and I want you to cut it out.” She had, of course, heard no such thing, though it did leave me rather wondering what sort of impression I may have left on her over the years. Less than eight months after this conversation she was dead, a rapid accumulation of maladies that became too much to carry and too unmanageable.

At least this time around we had the diagnosis through a little sooner and know what we're dealing with. Combined Alzheimers and vascular dementia. The NHS remains optimistic because the NHS has to remain optimistic. They have treatments. He didn't react well at all to the first set they gave him, living out the potential negative side-effects as though reading them from the lists on the enclosed advice sheets. He's not on those any more.

I remember being at the East Surrey Hospital in Redhill, in a windowless room off a windowless room with a group of doctors and nurses in August 2019 as they discussed what sort of post-hospital treatment they'd be able to offer my mum. I'd just been in the room with her. “Can't they see that she isn't coming out of here alive?”, I thought to myself as they talked through the various post-hospital care options. A couple of weeks later, my prognosis turned out to have been the more realistic one.

Dementia is a race, but you don't know where the finishing line is. You don't know how long you have. At the time that my mum's condition deteriorated, I had a four year-old, a one year-old, and a full-time job, so I saw her decline from a bit of a distance. I visited when I was able, more as her condition deteriorated. But there was other care then. My dad coped as not far short of a sole carer for her for years.

Just under a couple of weeks before she went, I was due to go on holiday. I questioned the wisdom of going at all, but my sister insisted. The day before I left I went to the hospital had ten minutes alone with her. She was out for the count, but I held her hand and told her that I loved her, and that I hoped she was proud of me and of the kids. I hope she heard me. I'd like to think she did. She died on the night before I was due to come home, so early in the morning after my 47th birthday that I’ve persuaded myself that she hung on into the following day so that my birthday wasn't on her death certificate, as it had been for the last of my grandparents, who’d died on my 20th birthday, a little over 32 years ago.

I say this in the full knowledge that there may well be no such thing, but so far as I know mum had a ‘good’ death. She had people who loved her with her, and I was given little impression that she suffered hugely. Ultimately, she died of pneumonia but with dementia, and I persuaded myself that it was probably time. There were tears and plenty of them, but three weeks after her death I was able to stand confidently in the crematorium and tell all present that, “So long as somebody holds you in their heart, you never truly die”. She passed. We miss her terribly and we remember her, but life goes on because it has to.

Five years on, here we are again and this time I feel as though I'm seeing it more up close and personal than the last time around. Things have changed. Those two babbies are older now, nine and seven respectively, and I'm a single dad for five days a week. My free weekends do at least allow me to take the heat off my sister a little. She lives less than a mile from him and does almost all the donkey work. I stay with him one weekend a month to try and ease that pressure a little. It's not enough, but it's what I'm able to do. Dad doesn't want to go into a home, but we're approaching a point of critical mass.

Every time I'm there, anxiety creeps up on me in the days beforehand. I hadn't even noticed this until my girlfriend recently pointed it out to me. My mood darkens in the days before I'm due to leave and the future that stretches out in front of me doesn't quite feel as certain or bright as it usually does. I routinely wonder on the journey up there how much of him we'll have lost this time. There's no way of knowing for sure, but I know it'll be above zero. Like a child's toy left out in the sunshine, he's fading over time, and there's nothing that anyone can do to prevent it.

Dementia can be amazingly cruel in the way it chooses to torture us. It can strike at any age from middle-age, especially with Alzheimers, and there is no way of knowing how long it will last; it could be a few months, or it could be years and years. There are few signs of physical deterioration until the person concerned is at a point at which they’re struggling to look after themselves, and by this—or any, really—stage there’s nothing that can be done.

And on top of that, we don’t know what they’re thinking or feeling. Occasionally the confusion will creep through, as though the brain is acting on muscle memory. There will be occasional signs of life behind otherwise blank eyes, moments of clarity amid the deepening fog, until there aren’t any more. And all that can be done by those closest to that person is to seize those moments, to let them know that they’re loved, and ultimately to care for them as best we can.

Just as they die in slow motion, we grieve at the same pace. All that we know is that death is coming, and we have to fight the counterintuitive feeling that when it comes, it may even be a release for both them and us. We don’t think about the heredity of it, or the sadness that we may ourselves cause our closest loved ones one day, because we know that life and being around people who love us deeply is worth any price.

So we change their nappies and we let them have their imaginary dogs because we love them, even though they may confuse us with others or make bold statements about things that they’ve somehow convinced themselves that we’ve done. We laugh at some of their more bizarre comments, because if we didn’t laugh, we wouldn’t so much cry as be paralysed in our ability to cope with it all.

It hurts. It hurts like all hell. And all we can do is cherish those who love us, because they're the best hope that we ever have of finding solace at times like these. But we never stop loving them, even as they fade from view, because it’s true; so long as somebody holds them in their heart, they never truly die. Even if they’re experiencing what looks very much like a living death before our very eyes. 

Accompanying image by DI Wang from Pixabay.