Getting a dementia diagnosis helped me take back control

I was born with spina bifida and had issues with my back. These became worse with additional health issues, such as problems with my heart.

At the age of 50, I was told to stop working due to my health.  

Before this, I worked in the motor trade, before becoming a manager in car dealerships. My hobby was taking videos - I initially started out doing weddings before moving into TV advertising and short documentaries.

Later, I opened a classroom in an old village school, and offered training on different editing software, as well as audio and lighting.

This was a major adjustment, impacting my plans and finances for the future. I was on a new enforced route and my lifestyle would have to change.

I was then diagnosed with motor sensory polyneuropathy, and in 2016 I was told I might lose the use of my arms and legs in ten to fifteen years. 

My wife, Irene, was a nurse and now so is my daughter. In 2020 they told me they had concerns about my memory and wanted me to be checked over. 

Recognising problems with memory

I was aware that I was having difficulty now and again remembering words.

I wondered whether it was just my age or whether it might be dementia.

It was a bit worrying but I put my concerns to the back of my mind. I kept it to myself as I didn’t want to worry my family - we had enough going on in our lives.

I didn’t do or say anything about it for several months, until my wife came to me and told me she and my daughter had noticed I was having problems with my memory.

I wasn’t shocked or upset when she talked to me about it, I already knew something wasn’t right.

They thought it was more than just being forgetful as I got older. My wife’s mother had dementia, and she had seen some of the same symptoms in me.

They wanted me to get checked out and I was quite happy to go to the doctors.

A difficult diagnosis journey

I made the appointment, and I went on my own to see the GP. It wasn’t a difficult conversation to have, I just wanted to get it done and to know what was happening. They did memory tests, and I wasn’t too successful but that didn’t surprise me.

Not knowing was more difficult than the diagnosis. I wasn’t bothered about what the outcome might be, I just wanted to know the truth. I wanted to get some control back.

After being referred to the memory clinic and having an MRI scan, I was told I had mild cognitive impairment (MCI) and that I’d been seen again in six months. 

My wife and I asked the consultant three times if I have dementia, and he said no. I then received a copy of the letter he sent to my doctor and it said I had mild vascular dementia.

The letter was a complete reversal of what I’d been told verbally.

I rang the hospital and they confirmed the diagnosis. There was no communication from anybody.

My daughter saw from the scan that I’d had a minor stroke. They never told me about that, it was a silent stroke with no other symptoms. 

Accepting the diagnosis

I had to accept this is what I have got, I might die sooner than I would have done, so I will enjoy and do what I can while I can. I’ve cut back the physical stuff that was detrimental to me.

It was difficult at the time, but I have accepted it. I used to go to the gym three times a week, but now I can’t cope with it.

After the diagnosis there are still unanswered questions and no one can tell you the time scales, so you don’t have an idea and can anticipate what might happen. It was coming to terms about a change in thinking and lifestyle – how do I respond now?

I just needed to talk to someone and get some advice and reassurance on what I could expect.

I know everyone is different, but it was important to know there would be care for you at whatever stage you are in the process.

Finding the Alzheimer’s Society Voices Together group

I met with a local Alzheimer’s Society group called Voices Together. They very quickly opened doors of opportunity for me. I even signed up to be an Alzheimer's Society Dementia Voice Participant.

I found I had something to contribute from my experience in life and my skill set that could impact others.

I was involved in several Zoom meetings where future decisions were being made that would have influence on policy. We'd discuss how people should be treated and advised for what, to so many, has a major effect on their future.

The Voices Together group and Dementia Voice offer amazing support. My contact at Dementia Voice has been wonderful.

It has been a help to have someone to talk to. Being part of the Dementia Voice retreat recently and meeting people face to face was useful.

We normally only speak on Zoom, so when we met again it felt like it changed because we felt we knew each other better.

Looking to the future

I told my wife: 'I never want you to be under pressure to keep me at home and have to care for me.

'I give you full permission to put me in a home or arrange day support when I’m not able to make these decisions myself. We’ve been together 50 years and I know it’s not easy for you either.’ 

You can’t change the thoughts, but you can change how long you spend thinking about them.

Part of that was volunteering with Alzheimer’s Society. I am there as a support to Alzheimer’s Society, to help them because I have something they haven’t got. I have found that fulfilling and I am doing something worthwhile. It’s turning lemons into lemonade.