National Day of Reflection: Neil’s story

March 23, 2021

On this National Day of Reflection, we think about all those with dementia who have lost their lives in the past year. We think about the families who have been torn apart and unable to grieve in the same way as pre-pandemic times due to restrictions on funerals and other gatherings. We think about how much families will continue to be affected by this grief as lockdown eases.

Neil’s story reminds us that despite these tough times, Admiral Nurses have supported families with dementia throughout, helping them to reflect on the past, live in the present and plan for the future.

My dad, David, a retired teacher, keen traveller and a lifelong fan of all sports, but especially rugby, cricket and athletics, was diagnosed with Alzheimer’s in 2014.

Neil and his dad David, at a football stadium

It wasn’t really until 2018 that it began to impact on him to such a degree that he required support with everyday living. Then, during a hospital admission in 2019 for a suspected hernia he suffered a minor stroke, as well as delirium, leading to a steep decline in his health once he returned home.

Community coming together

Nevertheless, a community circle helped draw together support from friends, family and neighbours and continued to allow my parents to do the things that mattered to them and keep connected while living with dementia. While everyday life was challenging, he remained contented, often laughing with my mum when he forgot words or how to do various things, rather than becoming distressed.

Unfortunately, the Covid-19 pandemic and lockdown undid much of this and, as appears to have been the experience for many living with dementia, my dad’s health and wellbeing went into a further sharp decline, endangering my mum’s health and wellbeing as she struggled to support him without being able to draw on outside help. A particular risk was balance and falls, with my mum having to call in paramedics on several occasions just to help my dad get up, albeit without admitting him to hospital. He was also less and less willing to cooperate with us or with the paid carers we briefly brought in.

Then, one morning, while I was there and after we’d helped him have a shower, it appeared he was struggling to stand or walk unaided. We feared it may have been another stroke, so called 999. This time the paramedics felt he should be admitted, concerned as they were about his blood pressure. We could not go with him because of a local lockdown. We waved him goodbye in the back of an ambulance. After our previous experience of hospital, we were worried sick.

We were his advocates in hospital

When he’d been admitted to the same hospital 18 months earlier we had had to remind every single consultant who saw my dad that he had dementia, despite information in his medical notes. That time we had been able to be there, acting as best we could as his advocates. Once he was home, we didn’t like to imagine what might have happened had we not been.

Our fears confirmed

So when a few hours later an A&E doctor called my mum and said: ‘Your husband appears very alert, but when I ask him questions he appears confused and struggles to answer,’ alarm bells began to ring loudly. And sure enough, when my mum advised the doctor of my dad’s Alzheimer’s, our worst fears were confirmed when she indicated that she had been unaware.

A dementia specialist Admiral Nurse came into our lives

Luckily for us, we were told that the hospital had a dementia specialist nurse and, a couple of hours later, Admiral Nurse Kerry Lyons came into our lives.

It’s taken me a while to write this as I wanted to truly honour what Kerry meant to us. I could tell you how the very first thing she did was to find out who my dad was and what mattered to him, not what was wrong with him, and how she made this the framework for his care. I could write about all the practical help and advice Kerry provided in helping us to understand what was happening and what was going to happen when information from the hospital was sometimes inconsistent, alarming or in short supply. I could tell you about the support she gave in finding a care home place. I could tell you about the morning calls to let us know how my dad was when we couldn’t be there, the late-night messages of reassurance and advice or the cups of tea she brought my mum first thing in the morning when she’d stayed overnight to be by my dad’s bedside towards the end. I could tell you about the honest, sensitive counsel she gave us about whether continued treatment was in my dad’s best interests and I could tell you how, as the town we were in descended into a local lockdown, she helped ensure we could still be with my dad at the end of his life. And I could reflect on doing all of the above must require such diplomacy, tact and expertise to win and sustain the trust and respect of patients and their families and hospital colleagues at all levels.

Kerry became our advocate

I could tell you about all of those things, but I don’t think they would convey the most crucial thing Kerry brought, which was this: she made us all feel like someone cared about my dad and us, not only that my dad was being cared for.

Kerry’s empathy had shone through, and I sensed it must have come from personal experience, so I asked and sure enough it had. It’s not my story to tell, but what I do want to acknowledge is what it means to dedicate one’s life to righting a wrong for others that you no longer have the opportunity to fix for the people you love most. I will take that with me always, and dedicate myself to it too.

Kerry, you came into our lives when it mattered most. You helped my dad have the best possible end to his life and helped to give us the strength we needed to be there for him.

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