The last time I went to see my dad in his care home, he didn’t say much. That’s normal now. I’m a drummer in my spare time and, when there’s a silence, my instinct is to tap out a rhythm. I didn’t expect Dad to notice when I began slapping my legs but, out of nowhere, he looked down at my hands and started drumming too, laughing to himself. In that moment, I felt so happy.
Times like these, when my dad smiles at me, are so rare now that I treasure them. There’s nothing that brings me more joy than feeling like I have briefly made him happy. He remembers the faces of my mum, my brother, my sister and me but he doesn’t know that I’m his son. He knows us as the people who come and bring him a new jigsaw and some biscuits.
My dad has semantic dementia, a condition which affects a person’s ability to use words correctly and their understanding of what objects are supposed to be used for. It's a form of Primary Progressive Aphasia (PPA), which is a rare kind of dementia that usually first develops in a person’s fifties or sixties. More than 42,000 people in the UK have some form of early-onset dementia, according to Alzheimer’s Research UK. In its later stages, semantic dementia can cause huge personality changes, and stop someone from recognising their loved ones.
I was 11 when Dad first started to forget words, or use them in a way that sounded strange. I wasn’t mature enough to read into it or take it seriously at the time but, when I look back now, I can see how hard my mum was working to protect my siblings and me from what was going on. It took a long time for us to realise that anything was seriously wrong. Dad was a consultant anaesthetist working in intensive care and, at first, people put his forgetfulness down to stress or burnout.
As I got into my teens, his behaviour became more erratic and it was harder for Mum to shield us from it. He couldn’t understand social cues and no longer knew what was and wasn’t appropriate to bring up in conversation. He would try to talk to us about things like sex at totally the wrong moments. It was tough at times but I see now that it was Dad trying, in his own way, to play an active role in my life. Eventually, I learnt to laugh about what was happening, though never to his face.
I never had friends over to the house because of Dad’s illness, until I got a girlfriend at secondary school. Even then, I found it really uncomfortable. He’d make comments about us sharing a bed, or loudly ask if we were going to get married or have kids. Like us, she knew just to look down at the floor and say nothing. Apart from her, I never told anyone else at school about what was going on.
Now, at 22, I can barely remember a time when I didn’t feel responsible for Dad in some way, either for his feelings or for helping with his care. It’s now second nature to me to explain his behaviour to others, and try to protect his dignity.
Three years after he first started showing symptoms, my dad was diagnosed with PPA. Because of the changes happening in his brain, he refused to believe anything was wrong with him, and got angry with anyone who suggested there was. Family friends stopped seeing us, either because they didn’t believe anything was truly wrong with Dad, or they didn’t know how to handle the changes in his personality.
Mum later told me that she’d cried on the train all the way home to Chichester from London after Dad was diagnosed, while he just remained indifferent to her. His illness affected his ability to empathise, and he was no longer aware of how we were feeling. It was hard on her and, in some ways, I had to learn to support both my parents from a young age. Now, my current girlfriend sometimes tells me I seem older than my years. It’s true that I try to deal with things in a rational way and not let my feelings control me - it’s how I’ve coped with our situation.
After the diagnosis, Dad could no longer work in the hospital. His job just required too much mental precision - using the wrong word could put someone’s life at risk. He still couldn’t fully understand why, though, and took out his frustration on my mum.
At times, the changes in Dad could be quite frightening. People with PPA can develop obsessions and often crave sugar, and Dad began drinking heavily every night, having never been a big drinker before. His condition made him obsessed with routine, and his relationship with alcohol soon became the same. At exactly 4pm every day, he’d crack open a bottle of wine.
He’d stagger around and shout at us, and we’d notice his confusion with words even more when he was drunk. Moments like those made us three kids grow up really fast. We learnt to tread carefully around Dad, and became desensitised to his anger. He couldn’t bear anyone getting in the way of his routine. He was a tall, strong and otherwise physically fit man and it felt like if we tried to stop him getting to the fridge for more wine, he could just push us aside - thankfully that never happened.
Mum suddenly found herself the sole breadwinner for our family of five. Dad was no longer allowed to drive, so running errands for the whole family now fell to her. She essentially became a single parent but with the added strain of having to care for my dad, too. I can’t imagine how hard it was for her, coping with all that while dealing with losing the love of her life.
As I went through my teens, Dad’s symptoms rapidly got worse. As well as being moody and confused, he could be a danger to himself and others. He often struggled to recognise objects - like the time he put laundry liquid in his tea instead of milk because they both came in a white container.
It was tough to stop Dad from doing things. He’s stubborn and single-minded, so often he’d wait until my mum was out of the house to do things we thought weren’t safe.
Once, Dad went out into the garden to cut the hedge with a chainsaw. I texted Mum in a panic but knew there was little I could do to stop him. He didn’t prop the ladder up properly and fell about two metres, breaking his wrist - it could’ve been so much worse.
So, aged 16 I found myself taking my dad to A&E (at the hospital he used to work in) and keeping him occupied in the waiting room so that he wouldn’t wander off alone. Eventually, he got fed up of waiting and started yelling at the nurses: “Oh, come on. I’m a doctor. I work here. I know what’s wrong!”
I felt embarrassed but not for myself. It broke my heart to see Dad back in his old workplace acting in a way that made people stare at him. If I’d been in tears begging him to stop acting up, he wouldn't have understood. Even though I know it’s his illness that’s responsible for his lack of empathy, it’s still tough to deal with at times.
Mum worked so hard to support us that, despite everything, I managed to get into Cambridge Uni to study law. My older brother was already at university, so I was worried about leaving her with only my younger sister for support but, at the same time, I was so excited to start a new phase of my life.
Once I got to uni, I didn’t tell anyone there about Dad’s illness. I just wanted to live as normal a student life as possible. But I found it hard to switch off and stop worrying about what was happening at home. I struggled to make new friends and instead focused on my studies. I knew how much Mum had sacrificed to get me there and I was determined to make the most of it.
During my first-year exams, I got a phone call that changed everything. Mum rang to tell me Dad had tried to take his own life, and that he’d been sectioned under the Mental Health Act. Over time, he’d lost the ability to do more and more things and it clearly tormented him. Dad had spoken to me before about having suicidal thoughts, not realising how devastating it was to hear him talk that way. But we were still blindsided when it actually happened.
Mum insisted that I stay at uni and finish my exams but Dad was all I could think about - I was constantly on edge expecting another phone call. Somehow I got through and even got good grades. That made Mum really happy, which helped.
When I got home for summer, I went to visit Dad in hospital. He couldn’t understand why he was there and just wanted to come home. After around five months, he was allowed out but on the proviso that he would need 24-hour supervision. During my second-year exams, I got another call to tell me Dad had tried to end his own life again. I felt so helpless sitting alone in my uni room, knowing there was nothing I could do
It was then that we decided as a family that he wasn’t safe to live with us anymore. After he recovered, he was moved into a specialist residential centre so he could receive round-the-clock care.
Though Dad’s illness has devastated our family, I’ve almost become numb to the awfulness of it all. Now, my deepest sadness comes from the fact I won’t ever get to know my dad as an adult. Mum tells me that we share a sense of humour and attitude to life, which makes me happy and sad in equal measure. I feel completely robbed of that time with my dad.
When I graduated last year, I was so happy and proud and I tried to share it with Dad. I showed him photos from the day, even though I knew he wouldn’t understand what they were. I suppose I was telling him for me, really. Now, the pictures hang on the wall in his room.
After uni, I was lucky enough to get a training contract with a law firm. I was excited to start my career but, after everything that had happened, I didn’t feel right leaving Mum. My sister was about to start uni and I worried about leaving her living alone, and I was worried that if I went away again Dad would stop recognising me completely.
I contacted the law firm and, thankfully, they agreed to let me defer my place for a year so I could help Mum with organising Dad’s care and give her some much-needed support.
There’s so much to think about. Even simple things like making sure Dad’s teeth are brushed and his toenails are cut can be a minefield because he often won’t let anyone near him.
The stress on Mum is huge - his speech is so reduced that we have to observe him really carefully to understand his needs. We’re so fortunate that Mum has experience of working in healthcare, meaning we’re in a position to navigate all the administrative things that come with Dad’s illness, and I can only imagine how much harder it might be for some people.
Dad hates being in the care home, and sometimes it seems like he resents us for putting him in there. He tells us that he feels we betrayed him and tricked him into going there. I never know what to say back.
The only things that seem to occupy him are jigsaws and making latch-hook rugs. It’s amazing to us that, despite everything, Dad can do these complicated puzzles and create beautiful rugs with intricate patterns. He can’t process the picture on his jigsaws, though, and sometimes he’ll do them upside down - it makes no difference to him. It can take him about 10-12 hours a day until the puzzle’s finished. We used to tell him how much we liked the rugs he’d created, and he used to smile - he’s always been someone who wants to do things to help other people or make them happy - but, increasingly, he doesn't acknowledge what we say.
Even though it’s really hard to watch Dad behave so differently from the man who built a treehouse for us in the garden and taught me to ride my bike, I’m still really glad that I’ve taken this time out to spend with him.
I’m planning to move to London and start work at the end of the summer and, even though I’m really excited, in some ways I’ll miss spending time with Dad. But I know he would want the best for me and, at the end of the day, I just want to make both my parents proud.
If you have been affected by any of the issues raised in this article, information and support is available here.
10-16 June is Carers Week
As told to Natasha Preskey