Yesterday I headed off down to London at silly o’clock. I woke to a wonderfully sunny day, so was a tad disappointed that I’d miss the opportunity to be out in my garden as I’ve started to dig up the front lawn😱…..
I can manage to mow the back lawn but it’s difficult to manoeuvre the mower round to the front so it had to go. It’s also in the shade of the trees so is never going to be a nice one – in fact it’s covered in pond weed😳even though I’m not near the pond🙄…..
It’s been lovely being out there each day as everyone stops to talk to you. This may mean that it takes me 10 times longer, but it’s been wonderful to chat to new people. Yesterday I even had a girl on a horse stop! She used to live in the house next door and now lives round the corner so just wanted to stop and say hello……..never had a horse stop outside my house before……….
It also meant that Tess, the friendly spaniel from next door,could keep me company in the sunshine. She was quite happy having a cuddle and then settling down on the grass to watch the world go by, only moving when someone stopped to chat as this gave her an excuse to have another cuddle. Whenever I reached a point where she was sat, she simply shuffled backwards and settled in he new spot – happy days….
Well, I totally digressed there and had to look at the title of the blog to see what I really was supposed to be writing about……….😂
Back to yesterday……the College is situation near Tower Hill, so it was in familiar territory near the Alzheimer’s Society’s office….I’m one of many on the Patients Carers Forum and we take it in turns to attend the Executive meeting – Keith Oliver has represented people with dementia in the past and today it was my turn.
My journey started off well ………however, for those that read my blog regularly, you’ll know that I rarely have a journey that goes smoothly……today was no exception…..we were just outside London when the train jolted erratically and then came to a grinding halt. Another train going northbound had also come to a halt.
All we were told initially was that the train had a technical problem. However, sadly, an hour later the guard announced that the north bound train had hit someone and they’d been thrown into the path of our train, shattering the drivers window as well as one of the carriage windows. So sad that someone found that as a way out. 😥The emergency services soon arrived and another crew had to be organised. The driver must have been in a terrible state. Passengers were very subdued at Kings Cross and Virgin staff were there to meet us handing out water.
We arrived eventually 2 hours late…..very sad and a very subdued lot of passengers disembarked…….
Sooooo, 2 hours after I was suppose to arrive and I then had to try and find somewhere I’d never been before😳 Luckily I knew I had to get the tube to Tower Hill, a familiar destination for the Alzheimers society offices. I decided to use my walking app but set off in the wrong direction initially so it took me a while to get on track.
On my way there I came across 2 pf the lovely girls from the Alzheimers society (can’t for the life of me remember who they were now!) which was very bizarre as they assumed I was lost heading for the office whereas I was lost trying to find my way to a different office!
There were 22 people in full swing when I finally arrived …very late….so I didn’t know who anyone was…and no time to be introduced…
I asked the exec to consider where Young onset dementia sits as we are often referred to old age services but age appropriate services and support is often forgotten and more and more are being diagnosed with young onset. I was asked whether I’d prefer to be seen by neuro psychiatrists or old age psychiatrists. My response was that I didn’t mind who I saw as long as they understood our needs and our experience was consistent, which is lacking at the mo.
The chair did say that they’d had a discussion in my absence about putting a link to the Alzheimers society’s Talking point’, however I said I found Talking Point upsetting as someone with dementia. I think it’s a very good resource for supporters, but not the ideal place for people with dementia to be directed in it’s current format.
Maybe it was due to the morning tragedy, but I didn’t feel comfortable in this meeting. I’d been introduced as a carer, which means someone hadn’t done their homework and led me to feel a tad of a tick box….. Nothing about the meeting seemed dementia friendly – but as I say, that might have been simply due to my mood.If you invite members of the public to be part of an exec meeting, some adjustments have to be made.I don’t mean ‘special’ treatment, simply adjustments to enable involvement. I quickly decided that I wouldn’t be going again and didn’t want to be part of their forum.
I did send the organiser a link to the DEEP web site in case they wanted other people with dementia to be involved as it may help them understand some adjustments that would help others.
I shouldn’t be allowed on trains as I appear to bring them bad luck………..not one of my better days….