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Tracy's story: "Our Admiral Nurse has made the world of difference to us"

Tracy’s husband Steve has Lewy body dementia, Tracy talks about support they’ve received from Admiral Nurse Liz.

Tracy and Steve in Zakynthos, Greece

Tracy and Steve in Zakynthos, Greece

Steve and I met at work 22 years ago and have been married for 16 years. Steve worked as a paramedic for 40 years and loved his job. He was very well educated and had a real enthusiasm for maths.

Steve and I did ballroom dancing together for 14 years. We were always top of the class and people used to watch us. We won medals and we were quite good, even if I do say so myself!

We loved going on holidays and went to Greece every year. We had a lovely life.

I thought Steve was too young to have dementia

I first noticed something wasn’t right during our dancing classes. Steve started forgetting steps to routines we had practised many times before. I couldn’t understand why he couldn’t remember.

Steve also failed some training at work which was unlike him – he had never failed anything before in his whole career. That really knocked his confidence. It sent him into a depression, and people at work started to notice that he wasn’t himself.

It took over a year for me to convince Steve to go to the GP. When we eventually went, the doctor diagnosed him with anxiety and depression and prescribed antidepressants.

When the pandemic hit in 2020, Steve started to lose weight, and I became more concerned. He even dropped his paramedic status because he thought that would reduce his stress at work.

Steve decided to take a job driving patients to and from hospital to relieve some of the pressure, but then he had a minor accident at work and reversed into another car. A report was filed, and Steve was signed off work in May 2021. He didn’t return.

At that stage, it didn’t even cross my mind that Steve could have dementia. I thought he was too young and never imagined it would happen to us.

Steve deteriorated further and lost more weight. He couldn’t remember any of our dance routines and my friends were starting to notice that he was behaving differently.

We managed to get a face-to-face appointment with the GP in July 2021. Steve was referred to a neurologist, but we had a long wait for an appointment.

Finally, in November 2021, we saw the neurologist. She made Steve do lots of tests, and straight away, she said she thought he had Lewy body dementia. Neither of us had heard of it before – it was traumatic.

We received a letter confirming the diagnosis a week before Christmas. Steve was only 58.

By the time we got the diagnosis, it felt like Steve had been replaced by someone else. It was like living with a totally different person. He was hallucinating. He didn’t know who I was, or where he was. I had to constantly guide him around the house. He tried to climb through the kitchen window because he was hallucinating and thought someone was chasing him. He was awake all through the night. It was exhausting.

Tracy and Steve at the Royal Victoria Hotel, Sheffield for their dance school’s Tea Dance

Tracy and Steve at the Royal Victoria Hotel, Sheffield for their dance school’s Tea Dance

My Admiral Nurse, Liz, has made the world of difference

I didn’t know where to turn after the diagnosis. It felt like we had this massive cloud lingering over us. It was a total minefield and whirlwind. I had a long list of things I needed to do, and I didn’t know where to start.

I had never heard of dementia specialist Admiral Nurses before, but the GP’s receptionist let me know that there was one based at the surgery. The Admiral Nurse, Liz, came to visit us at home. We had a long chat, and everything started falling into place.

Liz has supported me with so many practical things. She helped me apply for Personal Independence Payment (PIP) for Steve, which was a huge relief. She told me about lasting power of attorney and even helped us get Steve on the right medication.

Steve gets on really well with Liz and always asks when she is coming to visit. She is a great support to both of us. Liz will always ask if I am ok and gives me emotional support, as well as Steve.

I feel a lot calmer since meeting Liz. She has made the world of difference to us.

Tracy and Steve taking part in a Strictly style competition

Tracy and Steve taking part in a Strictly style competition

We live day by day

This isn’t the life we were expecting in our 50s. We thought we would be looking forward to retirement, but we aren’t going to have the future we imagined. I wish Steve was still the person I married, but he isn’t anymore. I miss doing all the things we used to enjoy together, like dancing, but that part of our life is over now.

When people ask how I cope, I say I live day by day. We get up each day and don’t think any further ahead than that. I know there will come a time when Steve deteriorates but we don’t know when that will be. It’s important that we make the most of every day together.

Our lives are very different now, but we are adapting. Liz has lifted a weight off my shoulders, and it is a relief to know there is someone there to support us when we need it.