Joy Watson was diagnosed with dementia on her 55th birthday. Here she shares her thoughts about the diagnosis process and how she’s learnt to adjust to a life with dementia.
I know from the moment I open my eyes in the morning whether it’s going to be a good day or a bad day. On a good day, I can get up easily, go downstairs find the cereal and milk and make my own breakfast. I can think clearly. But on a bad day, my brain won’t co-operate. I’ll struggle to find the bathroom, I won’t be able to decide what clothes to wear, what to eat or drink. If I wash my hair, I’ll invariably forget to rinse the conditioner off and won’t realise I look a right mess until I catch sight of myself in a mirror or shop window. That’s when I tend to feel anxious, useless and angry. ‘Go away dementia,’ I want to say. ‘I don’t want you in my life.’
But whether I want it or not, I know it’s here to stay. I’ve known since my 55th birthday, which was the day the consultant broke the news. She started by wishing me a happy birthday then told me I had Alzheimer’s all in the same sentence. My husband Tony was with me and she talked for quite a while, but needn’t have bothered because I didn’t hear a word of it. I froze.
You see, I used to be a carer and I’d cared for people with dementia so I knew what my future held (or I thought I did) and it wasn’t the future I’d planned. Tony and I were going to retire and do fun things…now we didn’t even want to go out and celebrate my birthday. What was the point? We’d lost so much.
The diagnosis wasn’t a complete shock though. I’d been having odd symptoms, including clumsiness and forgetfulness for a few years. I’d also had vision problems and issues with hearing and taste which were puzzling, but I had no idea they might be linked to dementia (which they are).
After cancelling my birthday celebrations, I spent the next two months sitting on the sofa at home, feeling mostly suicidal. I was on antidepressants, grieving for all I’d lost and worrying about my future care. I didn’t want to live anymore. Then quite suddenly I had a change of heart and thankfully came around to more sensible thinking. Yes, this was a horrible blow and I had a difficult journey ahead, but it was my journey and I was going to give it my best. I wasn’t going to give in.
From that moment on, I’ve done everything I can to connect with other people who, like me, have early-onset dementia. It hasn’t been easy. At first I couldn’t find any support groups for people my age. The ones I visited seemed aimed at people 30 years older than me. I did manage to find one young-onset group in Manchester, but was told I couldn’t join because I lived in Salford. So I realised I needed to start my own group. Three people attended our first meeting – now we have 30 members, a bigger venue and proper funding.
But one thing we all talk about a lot more is the diagnosis process. We’re all in agreement that it needs to be handled better and more emotional support needs to be given. Our experiences of being diagnosed with dementia were generally very similar. We were handed loads of leaflets (which often went straight in the bin), offered medication like antidepressants and told about local groups which were extremely depressing because they weren’t designed for our age group.
Frankly, I was bloody angry when I was diagnosed but I didn’t have anywhere to put it because I didn’t want to burden my family (they were going through enough themselves). If I’d had access to a professionally trained counsellor, who was also clued-up about dementia, I would have been able to talk it through properly. Perhaps then I wouldn’t have spent two months on the sofa, holding it all inside and becoming really depressed.
However, the main focus of our group is on having fun; we go on holidays together and do crazy stuff like zip-wiring, climbing and bumper car rides. We live our lives now because we all know there’s no point thinking about tomorrow. When I’m with my friends I can be ‘Joy, the woman with the purple hair’ instead of ‘Joy the woman with dementia.’
Want to know how to help someone with dementia? Here’s Joy’s top tips:
• Make jokes about how bad your memory is
We know you probably mean well when you do it, but it really doesn’t help – your forgetfulness is nothing like ours.
• Use the word ‘suffering’
We are living with dementia, not suffering from it.
• Give us space
We need time to be ourselves which is why support groups like ours are absolutely vital. If one of us is feeling agitated, we don’t have to be on edge in case other people get the wrong idea. Instead, for two hours a week we can let our hair down and feel totally accepted.
• Be patient
I don’t go anywhere without wearing my badge which says ‘I have Alzheimer’s please be patient.’ I know badges aren’t everyone’s cup of tea but I’ve found people are so much more patient and helpful if they know why I might seem a bit slower in the supermarket or a bit clumsy in the street. In fact, if I forget to wear my badge I feel really vulnerable and find people are definitely less patient.