THE BLOG
04/06/2018 16:53 BST | Updated 04/06/2018 16:53 BST

Dementia Isn't A Death Sentence. I'm Not Just Living With It, I'm Living Well

Eamonn Holmes said he'd like his family to take him to a euthanasia clinic if he developed dementia. But my diagnosis was a weight off my shoulders

Jacqui Bingham

When I saw what Eamonn Holmes said this week about asking his family to take him to a euthanasia clinic if he developed dementia, I felt really sad.  He’s absolutely entitled to his view, and I know some people may share it, but seeing his words made me want to share my story - to show another side of what it can mean to have dementia. 

I was diagnosed with dementia in January this year.  It didn’t feel like I was being handed a death sentence. It might sound odd, but it felt like someone had taken a weight off my shoulders. 

For the last four years I’d been battling through a tired fog, fighting to remember phone conversations, dates, people’s faces.  I’ve wanted to hit my head and say, ‘why aren’t you working’?  Somebody would phone up the funeral services where I was director, and by the time I’d put the phone down I couldn’t remember anything they’d said, it had completely disappeared.  It was so confusing how my brain wouldn’t do what I wanted it to anymore.

For me, the relief of a dementia diagnosis came with not having to struggle to try and remember, to be someone I’m not. I feel completely at peace with myself. Now I can do so much, but at my own pace. If you understand dementia you can walk forward in that knowledge. Understanding what dementia is gives you motivation, and surprisingly, freedom.

Eamonn Holmes described dementia as ‘a long, lonely walk’. Everyone’s different, but for me my diagnosis has been the complete opposite of lonely. It’s given me this unique family of people with the condition, and their carers. Everyone’s accepted, no one cares if you can’t remember their name. I’m mixing more now with people than I did for the last four years, when I was beating myself up over my bad memory.

The people I’ve met with dementia inspire me. They encourage me to move on, to be positive, to be in the here and now.

The last four months have been a process of learning how to do things differently. There are frustrating things that crop up every day - like trying to work the remote control on TV; I look at it, and don’t know which buttons to press. But it’s ok when you think other people are in the same boat, and have struggled with the same things, and often have found ways round.  I went to a reading group recently where people with dementia come together and read short stories and poems. A lady there was telling me her husband has an app on his phone so he knows where she is, so now she can go out and about on her own. I went home and got my friends to download it, and now I feel totally relaxed when I go out, everyone will know exactly where I am – they’ll find me in whichever coffee shop I end up in sooner or later.

I’m not just living with dementia, I’m living well. Since I’ve stopped working and have more time, I’ve started growing seeds and plants, and joined the allotment group. Gardening was something I’d never had time for before. I’ve also joined the EDUCATE team at my local memory clinic, so I can show doctors, hospitals, schools, what it’s like to have dementia. Once we can break down the stigma, then we can live. I get frustrated when people talk to me like I’m stupid. I say to them, ‘I’m not stupid’ and they say, ‘oh sorry, I never said you were’. But they’re acting like I am, finishing my sentences and presuming I won’t understand. I just need to be allowed to talk more slowly, and people need to talk more slowly to me.

I’m on a panel next Friday at the Alzheimer’s Show, and I’m going to be speaking about End Of Life. I want to encourage people with dementia to put their end of life plans together. It’s actually no different whether you have dementia or not.  In my job at the funeral services, when I was helping a family to plan someone’s funeral, sons and daughters didn’t know. No one had ever talked about death – but we all need to.

When I was first diagnosed, I had worried about being a burden to my family in South Africa, but since I’ve been connected to my local memory clinic, I don’t have those worries and anxieties any more, I know the clinic will discuss each stage of my dementia journey with me at the right time.  I trust them completely.

Now I’ve got a diagnosis I can plan for the future, think about how I can make this work, and look for holidays to go on before I forget I went on them. 

I wanted to write this for all the people who’ve just got a dementia diagnosis or know someone who has, who might be thinking, even for a second, that their only hope is a trip to Dignitas. The way dementia’s talked about in the TV and the papers is getting a lot better, but a lot of people still have an image in their mind of an old lady sitting in a chair, hunched up and dribbling. That’s not me. That’s not my experience of dementia. I’m living well with dementia, and I’m certainly not the only one.