Claire’s story

Dad’s diagnosis

My dad, Colin, was diagnosed with Alzheimer’s disease in his early seventies after family and friends began to notice he was repeating himself and forgetting things more regularly. He had been really sporty throughout his life, particularly when he was younger, so it was hard to see him change over the years.

My dad also had heart failure and his general health was declining, so in December 2019, the family GP visited the house to discuss putting a ‘Do not attempt CPR’ (DNACPR) order in place. As the GP was trying to explain the purpose of the DNACPR, my parents sat there giggling and talking to each other. I was so upset realising that they didn’t understand what the doctor was talking about. The doctor was also quite taken aback.

Mum’s diagnosis

A few years after my dad was diagnosed, we started to notice a slow decline in my mum, Maureen. Her GP had also noticed it, but my mum was very adamant there was nothing wrong and brushed off any gentle suggestion that there was. I had to book her a doctor’s appointment under the premise of a medication review so we could discuss her symptoms – something I felt very guilty about, even though it was her own benefit. I felt this is something she remembered for a long time. She was eventually diagnosed with vascular dementia and Alzheimer’s disease. I felt this is something she remembered for a long time.

I was working full-time, so as my dad started to deteriorate more and needed more support, I arranged for carers to start coming out. That began by stealth, under the premise they were friends of mine who were just passing and thought they would pop in for a cup of tea!

My Admiral Nurse, Simon, very quickly became my rock

I also reached out to our local dementia specialist Admiral Nurse service and left a voicemail, even though I didn’t really understand the role of an Admiral Nurse at that time. When the nurse called me back and said, “I think you need our support”, I broke down on the phone.

My Admiral Nurse, Simon, very quickly became my rock. Our initial appointment was face-to-face, but due to Covid, all our following appointments were by phone. Nevertheless, he offered me great advice on how to cope with my parents’ dementia. He helped me to learn to take time out and understand what was happening to my dad. He gave me tips to gently change the conversation if my dad was in a repetitive loop, such as slowly removing myself and my mum from the room to break the cycle.

Simon gave equal attention to me and my feelings, always asking how I was and how I was coping. I felt I could really open up to him and tell him things that I felt I couldn’t share with anyone else. It was really important to have that outlet. He gave his number to my brothers too, so the whole family could contact him if we needed some support.

Losing Dad

After my dad died in the pandemic, My mum didn’t understand where he had gone and would blame me for taking him away from her. That hurt a lot; she was my mum, I loved her and would never have done anything to hurt her. That time still plays on my mind now and again, but I understood that when she was saying unkind things to me or blaming me, it wasn’t my ‘real mum’. I’d lost my ‘real mum’ many times over the years. And as hard as it was to be on the receiving end of her anger, I knew it was important that she could express it, rather than keep it in.

My brothers and I had no real time to grieve for our dad as it all then became about our mum’s dementia and making sure we were all there to support her and keep her safe. She deteriorated rapidly after my dad’s death and would struggle to do simple tasks like getting dressed. She’d always been so smartly dressed and put together, so it was a shock to see her decline like this.

Simon was still there for us after my dad died, but after a few months, I felt I was in a good position to say a fond farewell to him. I was stronger and felt there would be someone else who would benefit from his support. He had given me a toolbox of advice and I was so very thankful.

Moving Mum into a care home

In 2021 my mum moved into a care home. I visited every Monday and sometimes at weekends. She mostly didn’t recognise me, but Simon had told me that if she was smiling and happy to see me she knew I was someone comfortable to be around, even if she didn’t know I was her daughter.

Towards the end, my mum became very disengaged and stopped eating much. I would sit with her in the dining room and would have to move the spoon in front of her eyes for her to register that I was trying to feed her. I felt then that she was coming towards the end of her life.

After my mum died, we decided to donate to Dementia UK in her memory, as the support of our Admiral Nurse was invaluable. Simon helped me to cope with the trauma of losing my dad, which in turn, has helped me with the loss of my mum. He helped to calm the chaos in my mind. I will be forever grateful for the support I received from my Admiral Nurse, and I hope that our donations go towards making sure other people can have access to this support in the future.