I am more than my dementia diagnosis – Gail’s story

On Valentine’s Day in 2019, my world changed forever. At 54 years young, I was diagnosed with Alzheimer’s disease. 

At first I was numb. But in the following weeks and months, there were so many emotions – confusion, sadness, anger and a lot of self-pity. I started to withdraw from the world.

The post-diagnosis support was almost non-existent. I was given this life-altering news, handed some leaflets and expected to walk out of the doctor’s room as if nothing had happened. Nobody checked in on me in a meaningful way. Nobody even explained what the diagnosis meant. But perhaps worst of all, nobody asked me how I was coping emotionally. Sometimes you don’t need solutions, you just need a listening ear.   

When the Covid restrictions lifted, I started going to an in-person peer support group. Talking to other people living with the condition was wonderful. I didn’t feel so alone. 

At one of these sessions, a woman came and introduced herself to me. Her name was Maxine and she was a dementia specialist Admiral Nurse.  

I told her I’d been struggling and she wrote a phone number down and handed it to me. I put it into the back of my diary. But to be honest, I had no real intention of calling it. Asking for help has never come naturally to me. 

The life-changing support from my Admiral Nurse, Maxine

A few months down the line, I’d had a really bad experience with a medical professional. And I was at my wit’s end. I don’t think my husband, John, was coping very well either. I opened up my diary and on the last page was this phone number. So I rang it. A friendly voice at the other end said, ‘Dementia UK’, and told me she’d put me in touch with an Admiral Nurse in my area.  

Less than an hour afterward, I received a call from a voice I recognised. It was Maxine. Talking with her, I instantly felt at ease. She was the first person throughout my journey to actually listen to what I have to say. She made an appointment to come around. That was the first of many appointments. 

The difference between Maxine and any other health professional I’ve seen is that she gives me time. I’m not rushed in and out.  

Her visits give me something to look forward to. When I hear the doorbell and know it’s going to be her, I am genuinely excited. I open the door and see a friendly face beaming back at me. She wraps her arms around me. You have no idea how much that hug means to me.  

I wish everybody who had a dementia diagnosis could have access to an Admiral Nurse. It would make a hell of a difference. 

A new outlook on my ‘sidekick’

My perspective has totally changed from when I was first diagnosed. 

I now think of dementia as my sidekick. That may sound a little odd to some people, but it works for me. It reinforces the fact that I am not my diagnosis. I’m still Gail.  

The overwhelming response to dementia is negativity, and while I can understand this, it doesn’t acknowledge that I’m still here and there’s so much I can do. I now dedicate so much of my life to things that bring me joy and meaning. I have an outbuilding in the garden that has been converted into an art and crafts space. It’s my haven. Creating art, in whatever form that is, takes me to such a joyful place. I’m totally absorbed in what I’m doing, and for a brief time, my dementia disappears.  

My favourite mornings are spent wandering the local nature reserve with Toby, my beloved four-legged friend, and photographing the local wildlife. My other outlet is writing. Starting a blog, and committing to it, has helped immensely. I hope it helps others too. It’s so easy to get lost in a spiral of negativity after you receive a dementia diagnosis. But it’s not the end. Rather, for me, it was the start of a new chapter. My dementia chapter.  

I turned 60 a few weeks ago. I’m living a life that I’ve always wanted to live. Yes, that pesky sidekick gets the better of me some days. But my life is so full.  

You can read Gail’s blog here.