To tell or not to tell
An article from a website I follow dropped into my inbox the other day asking 'when should you start to tell people about a diagnosis?'. The question was actually framed around what to do if the person living with dementia doesn't want anyone to know so I didn't read any further but it did make me think about my experience and how I felt all those months ago. We got the news five days before Christmas in 2017 and I've written a lot about how we thought our world had come to an end, how Ash wouldn't discuss what was happening and how I couldn't talk about it to anyone without bursting into tears so actually breaking the news seemed almost impossible. In the end I emailed 4 very close friends, telling them and also asking them to keep it to themselves. This really wasn't anything to do with not wanting people to know but much more about not knowing how to put it into words and a feeling that, by putting it into words, it made it all so much more real. We got Christmas over and I emailed another wave of friends but still with a feeling of panic and still unable to talk about it. Another month went by and by the end of February I had told everyone I could think of but still not really talked about it. Then a friend in the village whose wife was in the late stages of vascular dementia sent a message to say I was welcome to go and talk to him when I was ready. This would mean however really acknowledging the truth of the situation and I definitely wasn't ready for that so we were several weeks/months down the line before I made it for the cup of tea and a shoulder to lean on from someone who was living through it all but definitely not so new at it. That conversation was a turning point. I came away feeling that this wasn't the end, that there must be a way through it all and that I needed to pull myself together or we would both sink without trace. On the friend's advice I contacted Contented Dementia Trust and booked myself and Jake on a course which really was the beginning of my recovery and the best thing that I ever did. Even then though I don't remember much about the weeks leading up to that course other than crying a lot, feeling lost, being scared and not knowing which way to turn. Since that drive down to the Cotswolds it has been a case of 'onwards and upwards' and I've come to realise that it really is best to tell people what's happening to us. We never know who, if or when people will be affected by this thing called Dementia but what we do know is that the number of people being diagnosed is increasing at an alarming rate. Currently it's estimated that 850,000 people in the UK are living with dementia; 24.6 million people (38% of the population) know a family member or close friend living with dementia; it's estimated that 1 in 3 people born in the UK this year will develop dementia in their lifetime and 1 in 14 people over the age of 65 in the UK have dementia (www.dementiastatistics.org). On top of that 45,325 people have been diagnosed with Young Onset Dementia which affects people of working age - usually between the ages of 30 and 65 (www.youngdementiauk.org). So dementia is on the increase and it's most definitely affecting someone near you. Maybe someone you know well, maybe someone you've just met and possibly someone who's acting oddly but everyone is trying to pretend it's not happening. Certainly when I started getting the message out about Ash I was amazed by the number of people who said 'So that explains why he ............' or 'we did wonder'. I was most definitely in denial so in my case it all came as a huge shock. The thing is that, as those statistics show, there are many, many people out there in a similar position to us and still we don't talk about it, still some people are embarrassed or don't know what to say. I realise now that if information around the subject had been more positive when Ash was diagnosed, if I had known that life wasn't going to end any time soon, if I'd known that there were still fun times to be had then I wouldn't have been so devastated. So my message is, if dementia enters or has entered your life, tell people. Be open about what's happening, let them know what you need and show them that it's not the end of the world.