Diana’s story: ‘Sam was brilliant at helping me understand what Lester might be going through’

Lester wasn’t quite 60 when he was diagnosed with frontotemporal dementia. I knew that things weren’t right with him for about four years prior to that, but I never imagined that it was dementia – not in a million years.

I thought he was depressed. He had no motivation. I used to lose my temper and shout at him, because I was so frustrated. I look back on that so sadly now: I wonder how on earth he must have felt.

From diagnosis to the memory clinic

Our GP was brilliant, but it still took us six months to get a diagnosis. Once we knew, we were referred to the memory clinic, where I met Sam, my Admiral Nurse. She has been by my side ever since. I am still not in a good place, but if telling my story helps one other person get an Admiral Nurse themselves, then it will be worth it.

Diana and Lester

Helping me to understand

Sam was brilliant at helping me try to understand what Lester might be going through. It’s so difficult, because when you can’t ask someone what they’re feeling, you can’t ever be sure. But she helped me to understand his behaviour a bit better. Frontotemporal dementia can affect someone’s emotions, their speech, and their reasoning, which explains why Lester’s attitude towards me changed. That was the one of the most difficult things to cope with, as he had always been so caring and capable, but Sam helped me realise that it was the dementia causing my frustration and anger – not Lester himself.

Helpful tips and support

She made little suggestions for making the day that bit easier. Lester started refusing to change his clothes. He’d wear dirty clothes for days on end and wouldn’t let me wash them. So Sam suggested I get loads of clothes that were exactly the same, all one colour. Then I’d swap them around quickly when he was in bed. That’s what Admiral Nurses do: they help you isolate each tricky little problem, then come up with a plan to get around it.

Things began to really deteriorate in the run up to Christmas 2016. He was trying to leave the house, and was getting up all hours of the night and roaming around. He’d started to have trouble understanding using the toilet; he’d have a wee in the bin in the kitchen or the cupboard under the stairs.

It started becoming clear that I couldn’t look after Lester alone anymore. Sam came with me to look at residential homes. She supported me emotionally through this difficult period but she was practical too: she helped me look at the positive aspects of each home as we saw it, because none of them are perfect. The most important thing was to assess whether they would be suitable for Lester, whether they could care for him. She helped me think about what Lester’s needs were and helped me think about what questions to ask.

With help and support from others…

I keep a diary, since Lester has gone into the home. Every time I visit him, I write up how he was, how I felt. It helps to get it all straight in my mind. There’s just so much that has happened and it all becomes so jumbled. You can’t see the woods for the trees at the time. I am still full of sadness and guilt. But Sam is helping me, telling me to be kind to myself. Reminding me to keep living in this moment. I am not quite there yet, but I am getting there. It is hard, and there is no glossing over the difficulties this illness brings. But with the help and support of others, especially Sam, I have got through different stages of Lester’s dementia.