Behindtheheadlines
G ROWING up, Robyn Hollingworth had a very normal childhood growing up in Wales. She was born in Dubai, and her brother Gareth was born in Kenya. Their father David had explored the world after joining the navy, but wanted his children to have a “normal” life back in Wales, like he had growing up in the Rhondda.
After graduating from university, Robyn moved to London, as most 20-somethings do, to fulfil her dreams of working in fashion in the “Big Smoke”.
Then David was diagnosed with Alzheimer’s, aged just 60. Life was getting harder for her mum, Marjorie, at home.
Robyn, aged just 25, decided to move back home to Pontypool, and very soon had to become a parent to her father. She was no longer the child in the relationship.
Three months after she moved home Marjorie passed away from a secret battle with cancer. David followed soon afterwards. They died four months apart. During this time Robyn kept a diary. Now, by this time with her own family, she has decided to publish it as a book.
Here, in her own words, is what it’s like to have a parent with Alzheimer’s, and how to look after them when they have looked after you for so long: “WE moved to the UK when I was five or six. I was born in Dubai and my brother, Gareth, was born in Kenya. Dad built power plants and travelled the world, but they wanted us to go to school in the UK. We had a weird dual existence where we would spend the summer in Kenya or Uganda, or travelling across China on a train, but we were indifferent as children and didn’t see it as any different.
“He grew up in the Rhondda and so he had a very y typical yp Treorchy y family y and life. He e joined the navy and went on to become ome a civil engineer. He really loved ed travelling and the more bizarre rre places, the better.
“I don’t think him being away affected anything. We certainly aren’t the e product of someone who missed ed their father a lot. But we would d spend months without seeing eeing dad.
“He was as always very active. We would always be outside and we had an active childhood. ldhood. He would d bring back things gs from weird and d wonderful places laces he had been. een. He was always ways r e a l l y involved in the commumunities. “I graduu
my ated from university a n d started working as a buyer. We knew dad had been diagnosed with Alzheimer’s and every time we came back we saw little changes in his personality, but mum wasn’t saying anything. “We would see differences in his behaviour and it got worse over time – from forgetting things to violent outbursts. “I was never asked to come back, but it just became apparent it was becoming a bit more difficult. I just decided it was time. “It all felt completely different. The dynamics were different. Dad wasn’t aware why I was there. He kept asking when I was going back to university. “It was far more sombre and it was instantly the case of me doing the meals and getting the medicines. It’s not just about you lounging around. You have to think about things in case he goes wandering. To take on that much is a huge change. “That responsibility p y normally happens when people peop have their own children children, not in their 20s. But peo people underestimate how m much they are capable of. “At no poi point did I think I couldn’t do this. You have no other opportunity. You just do it. If yo you were to overan analyse someth thing, it would s scare the c*** out of you. You w would be surprised. “There were things with dad’s Alzheimer’s you w o u l d become blasé a about. A typic cal day, I would g get up and get him up and get him his medications. Sometim times he could do that on his own and other o days he couldn couldn’t. I would take him for fo a walk, but some days d he would be difficult. diffi “He did things like walking into our dining roo room with a Santa hat on in the middle of summer. He also picked up mum’s jumper and wore it to the shop. He also tried to order a Chinese at 8.30am. Some things you find funny. But he’d do other things like tell people to f*** off.
“During this time, my primary purpose was to look after him. I can’t really remember things about how I was feeling. Friends would ask how I was, but your focus is completely on that person.
“There were some days he would realise he had Alzheimer’s, and some days he definitely remembered and was really philosophical about it. And some days he didn’t.
“Sometimes you would tell him the truth, but it was so awful that we would sometimes lie to him. You don’t want to keep putting him through that. Sometimes you let him believe what he wanted to believe. Everyone has their own coping mechanism.
“Mum passed at the end of November. Her passing affected dad. His descent was quite quick after that.
“There were days when dad would wake up and not know where mum was and I didn’t want to break his heart again.
“At the time, you think it’s going on for ever and it’s unbelievable, but actually it’s not.
“After mum died, dad was becoming really erratic. One day I came downstairs and there was a bit of a spat. He thought there was a burglar. He came at me with a knife. Luckily, neighbours came to the door and gave me a chance to escape.
“I could have walked in and he was fine or I could have walked in and it could have been ugly. I called the local authority. Gareth looked after him for a bit but he later moved to respite care. He passed away really peacefully.
“I did want to publish because I think this would help other people. Someone else might not feel so alone and not so guilty about it.
“It’s so weird and lots of things change. Hard things start to feel normal. Laughing has also really helped me. It’s a hard time when someone you love gets really ill but there’s always a silver lining in every cloud. You’ve just got to find it.”
My Mad Dad: The Diary of an Unravelling Mind by Robyn Hollingworth is out now.