For a while, he reverted back to thinking he was still married to my mum. Now, he gets her and my sister mixed up. The situation is evolving
MY DAD Geoff loved his work as a carpenter and was someone you felt could do absolutely anything. He was my hero. He could go into the attic on a Monday and by Friday you’d have a loft conversion. He always showed up to my football games and took me to and from whatever I was doing. He always made the best of a situation, and when things went a bit south, he was always there to pick me up. He gave me lots of tools to be an adult.
Obviously, nobody’s perfect. He wasn’t the best at talking about his feelings, and my partner tells me I suffer from the same thing – so I must take after him.
I’m the oldest of four boys and we’ve got an older half-sister. Even though my parents split in 2005, they remained friends. In fact, it was my mum who first noticed Dad wasn’t quite right. I’d seen him forgetting things but put it down to forgetfulness. About seven years ago Mum and Dad went to the funeral of a school friend, and after going to the toilet, Dad couldn’t remember where he was sitting – so Mum had to stand up and wave at him. After that she kept mentioning other things he’d done. We thought it might be the early stages of dementia but weren’t worried at that point. Between 2018 and 2020 his memory started to get worse – he wasn’t finishing jobs and was owing people money. By 2019 we knew there was definitely something wrong so we started a family WhatsApp group about how to deal with it.
My family’s quite big, so everybody had a different opinion. I just wanted to get him diagnosed but he lived by himself and often appointment letters from the hospital got lost, so he’d miss them. We meandered through the early stages until we got to lockdown.
Before the pandemic I’d see him at least once a week because he lived close by and would often pop round. During the first lockdown he really suffered being by himself – getting increasingly confused, especially by all the rules. I’d take him shopping and despite it being hot outside, he’d be sat inside with the windows closed. He was so proud of his appearance and smelling amazing, but I’d go round and he wouldn’t have brushed his teeth or had a shower, which was so hard to see. I really think lockdown escalated that.
One night he rang our doorbell at 1am. It was scary because no one was allowed out. He was panicked and said there were people in his apartment who were really intimidating and wouldn’t leave. He thought they were going to do him physical harm, so he came to me. He was adamant it had happened and I said, ‘Dad, I believe you but stay here for tonight and we’ll go back in the morning’. We went back and his door was ajar but there was no sign of anyone being there, so he was really perplexed. I wanted to believe him, even though it was clear it hadn’t happened.
A couple of weeks later, in April 2020, he was with one of my brothers and started seeing things that clearly
weren’t there. My brother called an ambulance and Dad was taken to hospital, where he stayed for six weeks. It was the worst time of Covid, so being in hospital was a scary place to be because so many people were dying. I was the only person allowed to visit him, so I’d go every day.
He was finally diagnosed with vascular dementia in May 2020. We found out he was having episodes of psychosis and so wasn’t able to distinguish daydreams and reality. They’re mini-strokes, called infarcts – a symptom of vascular dementia and increased by isolation.
I was told Dad would need 24-hour care, so we had to find a care home for him at what was a very tricky time. It was really sad but by that point we all knew it was the best thing for him. Dad wasn’t himself anymore and he knew something wasn’t right because he’d started to write things down a lot, like our phone numbers and things he needed to do. Fortunately my partner Natalie [Harman] knew someone who owns a care home in the next-door borough – we were lucky enough to get him into it because it’s really good. Since he’s been there his dementia has progressed more. For a while he reverted to thinking he was still married to my mum, which is maybe a time that evokes the most emotional connection for him. If I spoke about her, his eyes would light up. Now he’s in a place where he gets my mum and sister mixed up. We’re constantly evolving with the situation.
I’ve been lucky, I think, because I’ve been the first port of call throughout the whole of this process just by proximity. He still remembers me.
I don’t ask him to say my name but his eyes light up when he sees me and he gives me a hug and a pat, kisses me on the cheek and does his own thing again. He can say a few words but can’t string a sentence together – he starts but gives up. But you get fleeting moments – little glimpses – where he pops back. He’s a completely different person, even from the time he first went into the care home.
I’m an emotional person but I’m not very good at wearing my emotions upfront. I normally feel sad before I’m about to see Dad but mostly when I’m leaving. I’ll see him maybe three or four times a week and if I have to change him and give him a shower, which I want to do if I’m there because he’s my dad, it does sometimes weigh heavy.
It’s been so hard for many reasons. During all this, my partner and I had a baby, so being there for them and my dad has been tricky. And knowing he never wanted to end up in a care home is difficult, but then he never knew he’d get dementia. He’s getting the best care and as a family we’ve all talked about end of life and trying to be prepared for that sad day when it finally happens.
I feel I’ve experienced enough now to be able to help other people in a similar situation. If I could go back, I’d 100 per cent make sure my dad was diagnosed as early as possible – too much time was wasted faffing around not knowing what to do. Maybe we could have slowed his decline if we knew what we were dealing with.
I’ve learnt so much since I’ve been connected with Alzheimer’s Society who are doing so much for awareness, particularly with the England football teams – but the main thing is an early diagnosis.
Being forgetful doesn’t just go hand in hand with ageing. I didn’t realise that dementia is the UK’s biggest killer. One in three people with dementia are living without a diagnosis, which is wild to me. We need to change that and speak about it a lot more. I didn’t know enough about it and I wish I did.
One in three people born today will develop dementia in their lifetime. If you’re worried about yourself, or someone close to you, visit alzheimers.org.uk/checklist or call the Dementia Support Line on 0333 150 3456 for more information