Alan and Steve met 17 years ago. Alan worked as a corporate account manager for The O2, with his spare time filled with building miniature models of homes as well as lots of dancing. Steve meanwhile worked in care. “I had experience of supporting people with dementia, but nothing could have prepared me for the love of my life being diagnosed with frontal lobe dementia,” Steve says.
In 2015, when Alan was 63, he had a mini stroke. At this stage, not only did his forgetfulness start, but it increased significantly. By 2017, he suffered a seizure and that’s when things changed markedly. It led to a stay in hospital and the subsequent diagnosis by the doctor on the dementia ward.
Alan’s unawareness of the diagnosis and its implications was the complete opposite to the shock and reality Steve was facing. “My first thought was that I would have to care for him and would do everything in my power to do just that,” Steve recalls.
From left to right: Alan, Steve and Alan on their wedding day
Caring for Alan at home
When Steve was working in care, he would be able to switch off after a long day; laughing with Alan and going for walks with their Rottweiler, Meeka. He emphasises that caring in a professional capacity is a stark contrast to caring for someone you love and in your own home. “I’m constantly thinking about Alan and his dementia now – I can never switch off,” Steve reflects.
No longer being able to confide in his closest companion, faced with no support, and the loss of Alan’s independence after his ban from driving due to dementia, increased the pressure on their relationship. “It’s reached the stage now that I just don’t know what he’s thinking, and I can’t understand him,” Steve exclaims.
But Steve recalls that there was one person who could understand Alan – a nurse who was in the hospital after Alan’s seizure. Despite the fact Alan could no longer converse in English, he could still have a full conversation in Spanish from his days of working in a bar in Spain. The nurse could talk fluent Spanish and also understand it. She became a great support; someone for Alan to talk to and someone to listen. “This just made me feel so hopeful as I could see that there were still parts of his mind that I could access. With the right support, there’s no telling what memories or new experiences we might be able to uncover,” Steve says.
Admiral Nurse support
The feeling of hope grew after Steve’s first interaction with another nurse – dementia specialist Admiral Nurse Kellie. Through a dementia café run by the local hospice, Steve was instantly drawn to Kellie’s down-to-earth nature following the answer she gave when a question from the group was posed to her. This was around how to cope with caring for someone with dementia. Kellie’s response: “The carers are the real professionals so the question is better put to them.”
Kellie has been the one true voice who Steve has relied on. She paved the way for Steve to get a Lasting Power of Attorney in place, even though he was told by other professionals that it wasn’t possible since Alan had lost capacity. She helped Steve understand and complete complex financial application forms to allow him to get the support he needed. She was even there for the more intimate aspects of Alan’s personal care, advising Steve to get an LED shower light for Alan to improve his mood and get in the bath more easily.
All of this support meant that Steve could care more comfortably and safely for Alan in the comfort of their own home. “I genuinely felt that I had an advocate. I’d be totally lost without Kellie,” Steve exclaims. “Even such a simple thing as an LED light installed in the showerhead was so useful. You just have so much going on, that you can’t think of everything.”
But for Steve, Kellie’s support runs deeper than that. “There’s always that fear that you will be judged as a gay couple. It can affect who we let into our lives, which has a particular resonance right now in terms of finding the right care for Alan. However, Kellie just completely offsets this concern due to her non-judgmental approach.”
For Kellie, this is the cornerstone of her work as an Admiral Nurse. “We recognise every person we work alongside as individuals with their own unique life story. The foundations of our service are built on the relationships we have with our carers and those living with dementia, and where the centre of everything is the dignity, respect, compassion and non-judgmental care that they deserve.”
Steve acknowledges that there will be difficult times ahead. He’s still waiting to receive much-needed nighttime respite to allow him to have more than a few hours of sleep a night. He’s also aware of the impact Alan’s increased care needs will have on his finances. However, with Kellie’s guidance and care, and the acknowledgement that Alan is still a person behind the dementia, Steve is hopeful. “Even though it’s not the same, there are still parts of Alan that are there and make me reflect on the good times we’ve had together. If he hears music, he starts tapping. The dancer in him is still there.”
When things get challenging or difficult, Admiral Nurses work alongside people with dementia, and their families: giving them compassionate one-to-one support, expert guidance and practical solutions