Tracy reflects on how Christmas celebrations have changed since her husband Steve was diagnosed with dementia.
What’s your perfect Christmas gift? Up until last year, I would have said that mine was a beautiful – and unusual – pair of rectangular sparkly bracelets that my husband Steve bought me.
“Everything has changed since Steve’s diagnosis”
Steve loved buying me gifts, and always had such good taste. But the gifts – and our whole lovely way of life – suddenly came to an end just before last Christmas. That’s when Steve was diagnosed with Lewy body dementia – a really complex and challenging type of dementia – at the age of just 58.
Everything has changed since Steve’s diagnosis – and it’s been a really tough year for us. So this year, I’m grateful for the perfect early Christmas present: the clock our dementia specialist Admiral Nurse Liz recommended.
Since Steve’s diagnosis, it’s been like living with a different person. For a while, he was hallucinating, climbing out of windows to get away from the imaginary people chasing him. He didn’t know where he was, or whether it was day or night – it must have been terrifying for him.
“I’m not sure how I’d have coped without our dementia specialist Admiral Nurse”
That’s why Liz’s suggestion of a special dementia clock has been a real blessing for us. Obviously, it tells Steve the time, but it also tells him the day and date, and whether it’s day or night. He finds it so reassuring, and it will even remind him that it’s Christmas. This is just one example of the practical advice and emotional support we’ve received from Liz. To be honest, I’m not sure how I’d have coped without her.
Over the past year, I’ve learned how unpredictable dementia can be. And when the world is constantly throwing you curveballs, the support that Admiral Nurses provide for families like ours is crucial. There’s no one like them – literally. They’re the only specialist dementia nurses who look after the whole family, not just the person with the diagnosis.
Admiral Nurses can help with anything from making your home dementia-friendly, to securing the right legal and financial support. They can also provide coping strategies that you’d never have thought of yourself. For example, Liz advised me not to challenge Steve about his hallucinations, because to him they are very real. This calmed him down a lot and has made a huge difference to his mental health.
“Before Liz arrived, it was like living in a whirlwind”
Liz also helped me apply for the financial support we needed, which has been really important. Steve was a paramedic before, but he can no longer work, so having financial support is crucial – especially right now, with the cost of living so high.
Before Liz arrived, it was like living in a whirlwind. I had no idea what to do, or where to turn for help. I was drowning. She has been an absolute lifeline, and it’s such a huge comfort to know that she’s always there for us. Admiral Nurses work all year round, but Christmas is one of their busiest times. The noise, extra people and changes in routine can be very distressing for a person with dementia, making it a particularly tough time for the whole family.
“I wish Steve was still the man I married”
As far as this Christmas goes for us, we’ll try to have a quiet one. We’ll hopefully be able to enjoy some family time, although Steve does get tired easily, so we’ll have to make sure he doesn’t overdo it.
I wish that Steve was still the man I married but he isn’t, and he never will be again. I miss the things we used to do together, like ballroom dancing. But sadly that’s over. This isn’t the life we thought we’d have in our 50s, but we still try to make the most of every day – and we can only do this because of Liz.
Lewy body dementia
Lewy body dementia is a progressive, complex and challenging condition which is thought to account for 10- 15% of all those with dementia. Around 10% of younger people with dementia have dementia with Lewy bodies. In the early stages it is often mistaken for Alzheimer’s disease and can be diagnosed wrongly.
Twelve tips for Christmas, from our Admiral Nurses
Christmas can be the most magical time of the year, but it can also be stressful and emotionally challenging, especially for those affected by dementia. Our Admiral Nurses have pulled together a list of tips to help you have the happy and relaxing Christmas that you deserve.