I have had two radio interviews, one with BBC Radio Tyne Tees, which I have written about, and another with BBC Radio Newcastle. When I talk I sound fine. People say to me that I don’t sound like there is anything wrong with me. Exactly, and I am the first person to point that out with, I might sound okay, I might look okay, but I am not okay. So, when I talked to these presenters I say this to them. They ask me questions and I answer, I tell them how it is for me, because everyone who lives with dementia experiences it differently. I do however, talk about general things that people with dementia can experience when living with the disease. But, they are asking me about myself so I answer.
I felt the interviews went reasonably well, apart from Tyne Tees chap who kept using the word ‘suffering’ grrrr! He actually had no idea he was continually saying it, which means he was just doing a job and not at all interested.
When I listen to them back I am horrified by how they have been edited. I sound like someone with more advanced dementia!!!! The answers have been cut so that what is left are the words I am saying inbetween the answers I have given…just words, going nowhere in particular.
Why do reporters do this, why should I be shown as a media stereotypical dementia soundbite? I AM NOT A SOUNDBITE JUST SO YOU CAN TICK A BOX TO SAY YOU HAVE INTERVIEWED SOMEONE WITH DEMENTIA.
Why can’t the media accept that more people are being diagnosed with dementia earlier at a younger age, and can still hold a sensible conversation.
Dementia Action Week was all go! On the Tuesday I was at the launching of Dementia Friendly Murton working group, which I might add was a fabulous decorative do, with a spread of the most delicious looking home baked cakes, and sandwiches you could ever wish for. The Ribbon Academy, Primary School children were absolutely delightful, they sang a couple of songs, and came round to everybody in the room to chat. All sporting their Dementia Friends badges on their left collar (as suggested by one of the pupils), they embodied what being dementia friendly is about. I spoke to them about the importance of becoming a dementia friendly community from the view of someone living with dementia, which was followed by filmed ‘Ask me anything’ questions. Two girls, Molly and…I can’t remember her name got together and thought up the questions together. My word I am so glad these children are our future. They get it. They understand why learning and knowing can help people living with dementia. Some good question were asked, one with nearly stumped me; “what do you find most frustrating?” I could think of a thousand answers but it had to be a short bite size one, so the only one I could think of at the time was losing things in my house after I had put it away safely!
The Thursday was to give two Dementia Friends sessions to parents of Seaham Trinity School children who had already had their sessions, but, no one turned up! Not in the morning, nor in the afternoon. I can say that the Head was not happy. Shame on the mums and dads. Next time maybe.
Friday we had a stand in the local Byron Place Shopping Centre, kindly offered us by the Gemma Stokoe, management of the centre who is firmly committed to becoming Dementia Friendly. It certainly is great to have support and commitment of local businesses. This was an information day, and lots of people asked us for leaflets and information. I found it sad to see some people lower their heads and walk past as I feel that they are the people who probably wanted to ask for information but were afraid to. In close communities that have pulled together in tough times for years gone by, Dementia is still a stigma in families. They are hiding it away inside their families. Oh how I feel for them, I want to say “what if you could talk to someone, get some support. Feel the relief of someone who talk to you, and help make things easier for you. Make the life of your person brighter by giving them an opportunity to attend groups”.
So Dementia Action Week was a positive week even though I got really stressed and anxious before hand.
I was poorly earlier this week. Monday morning and I woke feeling okay but it went down hill from there on.
I went to take my medication and hesitated, the compartment for Monday morning was empty… had I already taken them? I felt so confused. I had a vague memory of thinking that I could take my Monday mornings medication from the original packs, or did I? Why would I do that? What reason would I have for doing that? I couldn’t think what to do but decided that I had left out my original medication boxes for a reason and took my usual dose. It is hard for anyone to understand how you can get so confused at either sorting out your medication or taking it, but when you have dementia confusion is all so real. When you come across so normal to most people and look like you are in control of everything, conveying that you easily get confused is difficult for most people to believe. But, on Monday I was confused.
Then I started to feel very sick , started vomiting and continued to do so most of the day. My daughter arrived at lunchtime and called 111. There is a stomach virus doing the rounds so I may just have been unlucky. But, one of my tablets is for newly diagnosed overactive thyroid so doubling up on that didn’t help. I was feeling too poorly to say I may have doubled up on my medication. It probably was the virus but certainly wasn’t helped by taking too much of my medication.
I took advice the next day from a pharmacist and then my GP, and have sorted out Weekly Pill packs for the future.
Never underestimate the possibility of someone living with dementia to be confused however well they live. So, it helps to plan and put solutions in place to continue to live well without stress. Most people already know about these weekly pill packs, but may not necessarily feel that they need to use them yet. From my own experience, I am certainly going to feel more confident using them so that my occasional confusion won’t cause me to overdose on my medication in future.