When Bob, 67, was diagnosed with young onset Alzheimer’s disease in 2018, it came as a huge shock. His daughter Dorota talks about how the Young Onset Service in Edinburgh provided a supportive lifeline for the whole family.
"If ever there was a problem, my dad Bob would find a way to fix it. He’s a mechanical engineer and was always really capable with his hands – whether it was repairing cars and heavy machinery or building things for the house.
"He’s worked all over the world – in the South African gold mines, in Tanzania, Greenland and finally the UK. My parents were born in Poland, then moved to South Africa just before martial law was introduced in 1981. I was born in South Africa but moved 20 years ago to London then Edinburgh, and my parents moved here around the same time.
"When dad started forgetting things and struggled to carry out basic work tasks we knew something was wrong. We never suspected Alzheimer’s disease, so when he was eventually diagnosed in 2018 it blew our minds.
"I was desperate to find out as much about the disease as possible and that’s when we were put in touch with Alzheimer Scotland. Dad’s symptoms seemed to be changing constantly and it was so overwhelming for me and my mum Barbara. Alzheimer Scotland put together a plan to support all of us, which was a real lifeline.
"Dad’s first language is Polish and his English started to slip away. We couldn’t believe our luck when Alzheimer Scotland assigned us a 1-1 Support Worker who also spoke Polish, and who would take him out for long walks. My dad loves being out in nature and I can’t overstate how important that was for him to be able to speak his own language and to be outside with someone. This was put in place not long before the pandemic, but the support continued even through the lockdowns, with Teams and phone calls, before the walks could resume.
"Dad was living with me and my husband at this point and I was trying to care for him while working full time from home. Having that respite was a godsend. It took away those feelings of guilt I had for the times I couldn’t take dad out. It was also a huge help being able to call Alzheimer Scotland for guidance whenever I was struggling to get answers about a certain issue, or if I just needed to chat.
"Everyone who has cared for dad has been so creative in how they communicate with him. The last support worker he had couldn’t speak Polish but he would find other ways to connect – playing Polish cabaret music that dad loved, sharing hot chocolate with him. It was such a nice personal touch and you could see how much brighter dad was afterwards.
"Everyone at Alzheimer Scotland has gone above and beyond to help us, and we’re so thankful. Dad, who’s 67 now, is now being really well looked after in a care home. I still take him to the park as much as possible but there’s so much less pressure. We’re all in a much happier place now."