Things that go bump in the day 55

Here we go again folks, hold on tight!

OK, and here we go with a Happy New Year for 2017 to one and all; I hope you are looking forward to this one as much as I am. I’m really excited about the prospect of this year as I have some idea of the great stuff that’s coming; a bit of which I will be laying out during this month’s blog. I also know there will be some pretty tough stuff coming up in the months ahead, such as July when it will be the 10th anniversary of my only Son’s death, which I think will be a bumpy time for me. Dementia takes away so much in the way of actual memories but also leaves behind very clear feelings of what went on, good and bad. Why not leave the memories and take away the pain? I suppose if dementia did that everyone would want a go! All in all I’m sure that there is very, very much to enjoy, so many adventures to live and an awful, awful lot of great new wonderful memories to be created. So let’s get on with the first one of the year and see what goodies January has to offer us. Here we go.

The first thing of note for this month, is that the Rainham dementia cafe I attend twice a month has now been slightly expanded in a way, in that the first meeting of each month will now have an information hub as part of it. That means various companies or social/activity groups will send a representative along to the cafe to help disseminate information and answer questions. This is an attempt to try to be in closer contact with the local dementia community. The first one of these hubs has taken place and I’m glad to report that the people there, ie PWD, used the services well, and that most of the professionals there were of great benefit to me personally at that very time. I needed to talk with the council intake team because they deal with getting social services involved in any assessments to do with care needs and can advise on housing. Also, obviously, the Alzheimer’s society, with it being a society run cafe, had their reps attend. My home care co-ordinator was also there, which meant I could get her to talk with the intake team. Also in attendance at the same time was the boss of the company in Imago, who are the guys I use to help with any of my official paperwork, so they will be involved in anything that I do regarding housing. It was, therefore, very useful having them all there to talk with; the intake team Imago and Alzheimer’s Society all at the same time, all good stuff. While in discussion at the hub, not only did we decide to start processing on the idea of sheltered accommodation but also to get started on getting my blue badge application under way; again another job for Imago, who can get the paperwork done for that. It was really rather good having someone from the local council there, as they were actually able to tell me about going to the Community Hub and asking for the Home Choice paperwork forms so that we can get everything going. Great idea this, having a hub for professionals to come and see us at the cafe, something happily spreading across the country.

With all that in mind, later in the week I went to the Friday walk. Because it starts at the library, which is where the Community Hub is located, after the walk I went to the Community Hub to get the home Choice paper work. Luckily, while on the walk, I had explained about the housing application or been talking about it with one of the other walkers, and she came with me to see about getting the paperwork. A typical jobs-worth said that you have to go online to do these things, as they don’t have the paperwork. I tried to explain about having dementia and that going online to do it would just not work, and that I have been told by someone, possibly their boss from the council, to get the actual paperwork from them. They insisted that the paper doesn’t exist. So before I allowed my vascular to get the better of me, and have a shouting match, I walked away.
The lovely lady who had been with me on the walk (thanks Gill, big lots!), and who was there trying to get the paperwork with me, stayed after I walked away. I’m not sure what went on but ten minutes later, miraculously, some guy appeared with a handful of paperwork, that had materialised from somewhere, and I was able to take it away with me. Gill, had a look at the paperwork, just to be nosey, ha ha. Then, having looked at it, she said ‘Oh, I think that’s only the beginning of your troubles; all of this seems to be to do with physical disability’. I said that the team at Imago and myself are becoming rather used to that when it comes to official paperwork. Everything seems to be based around physical disability, and dementia just doesn’t exist.

At the MemoryBilia meeting last week, I was finally given the go ahead to publish, and publicise, the website that has been created for MemoryBilia. Facebook and Twitter were utilised, and I am I mentioning it to you guys right here, and now; so go and have a look.
[www.memorybilia.co.uk]

Give it a look; see what you make of it, and play with the fun and games as well. Please!! Any kind of comments about it; good; bad; indifferent; whatever, will all be of major help in improving, what I hope to be, another resource for people living with dementia; especially those that have been recently diagnosed. It’s already had a pretty good number of hits and lots of good PR and lovely comments, as I mention on Facebook and Twitter; mostly about the quotes that are on there. They are quite motivational and uplifting about dementia, which is as it should be. So again, have a look and let me know what you think………please….. PWD; carers; friends; family; professionals. Come on!!!!

Had a couple of great meetings with Andy at Imago, spending a lot of time going over the blue badge application which, as expected, was mostly to do with physical stuff. But we battled our way through, and then even more time going through what seems to be a whole library of pages of information and questions to do the Home Choice housing application, and the health forms that go with it. I couldn’t remember the actual house number of one of my previous addresses but, luckily, had to go past there on my way to my next appointment that afternoon. So I then rang them after I went past it, to give them the house number. Wow! I’m rather glad it was a local address I forgot, rather than an old address from back in Surrey. That would have been some walk, and I would have missed my next appointment. Wonder if Dave would have spotted me twenty miles off course on the tracker and phoned me to find out what was going on. Poor Dave, I do give the poor guy such a hard time. I am sure many of the rest of us give their friends and family nightmares lol!I’m surprised I didn’t have a note of that address. I must try and pay attention to the fact that more and more of my coping strategies are falling down and need working on, and refreshing. Must try and find a coping strategy to help me remember. I need new coping strategies to help me remember……… now where was I. Oh yeah….whilst with Andy I kept apologising for the amount of time I was taking because of talking too much. Must be a new dementia thingy, this Wayne talking too much….
but he kept insisting that it was fine; that he enjoyed it, and particularly enjoyed the time with me, as he was learning so much about dementia just listening to my rambling on about various stories and my adventures in DementiaLand. He had apparently gone home after our last meeting and spoken with various members of the family about it. And now they’re hoping for the chance, if I can do a kind of a public forum event locally, to be able to come along and have a listen. Maybe they just want to throw tomatoes or something to get revenge for me screwing up Andy’s brain, but we will see.

Had a very nice Peer Group meeting and, following that, a get-together with Ash to plan, for the diary, what bookings we’ve got coming up. Excitingly, between now and say, the end of June, is another, I think, nine dates to be put in for training in care homes to add to the four or five that were already booked. And there’s one meeting which Ash wants me to attend with him and to be in at the beginning. So almost like me being at the sales pitch, so to speak; and another six bookings could come out of that meeting. So yeah, we’re looking to be on for a very busy; exciting; tiring but highly educational year. Good stuff. Bring it on!

Went along to a scheduled appointment for some Alzheimer’s genetic research stuff. It was the appointment to get blood tests and samples done. Sometimes I can be very problematic about this, as was discussed at some length in the mega blogged September issue when Dave and I were there during my last nightmarish hospital stay. Then, it was like trying to get blood from a stone. This time it was totally the opposite; more like a rogue oil well strike where we couldn’t stop the stuff coming out, and the six vials they wanted came out very easily, I’m glad to say. It still left my arm really bruised, but at least they got what they wanted. I have got to go back again soon for the question time session. Also went off for a trip to the cinema and I can’t actually remember now what I thought I was going to see. Oh yes! I was going to go and see ‘Cafe Society’, but when the film started it wasn’t that at all. It was ‘A Street Cat Named Bob’ ?? Now I don’t know whether I just got it completely wrong; after all they are so similar aren’t they! Or whether somebody changed the film. But ‘A Street Cat Named Bob’ was really nice and I enjoyed it immensely. So that means I’m still hoping to go and see ‘Cafe Society’ because that could be fun, as it is supposedly about the 30s or 40s and filled with lookalikes from that movie era. Bit before my time, but I will know lots of the stars. We will have to see if it turns up again.

The next day was not such a great day as I’d been hoping it was going to be. Had, finally, after about two months of fighting with them, got Virgin Media coming to do the installation of my much needed TV and broadband system and also to put in a phone, which is not much needed as I do everything on the mobile. It actually works out cheaper that way, as just about all my calls are free on the mobile any day, any time. The guy turned up late and couldn’t find anywhere to park. He moaned about that! Tried to persuade me that I wanted the phone over by the TV to make it easier for him. He moaned about that! Then found he would have to run the cable indoors and up the stairs, cut some off and drill through a wall. He then moaned about that! Then, once he kind of got everything done, he had to phone someone at customer services, Scotland, to get it all activated. And he moaned about that! But finally done, probably about an hour and a half after he was due to have ended, he finally cleared off. Thankfully, he didn’t moan about that!!!!

Went for the final 2016 Christmas lunch on a Saturday afternoon walk. There had been so many Christmas lunches, that we put it off and decided to have it in January. I don’t know whether it was a late 2016 or just a really, really early 2017 Christmas lunch, but it was quite a nice change from non-stop, non-Christmas lunches by now. It was out at a pub near Leeds Castle, but there was no Christmas food involved, as you might expect. Not really as much choice on the menu as I’d thought, but it was nice food and the company was great. Just as we finished the meal and were about to launch into a walk in the local countryside, there was another fluttering of a snow shower. So, because I’d been so ill over Christmas and New Year, it was decided that I wouldn’t actually go on the walk, as that would be detrimental to my health, or could be. I think four of us, therefore, decided to stay in the pub. Ah, now there’s a hardship! We had a lovely afternoon chatting instead.

The Radio station, SHEPPEY FM (sheppeyfm.org.uk) have given a kind of ‘on paper’ go ahead regarding the idea of wanting me to do some months live in the studio talking about dementia things. I’m due to go to the radio studio and get that actually confirmed live on air, and chat a bit about what’s going to be involved in it.

Update

This meeting, on air, did take place. We had over two hours when I was there in the Studio but, with a bit of editing, managed to boil that down from the full two hours to just the bits, sort of, to do with me talking about the show; talking about dementia, and having a laugh. It’s now about twenty minutes worth, and there’s a link to it here at the end of this blog so you can have a listen. I hope what comes across is that it’s a really laid-back kind of time, almost like four guys sitting around a table in the pub and just having a chat about things. Hopefully, if all the shows could come across like that in a really laid back, chilled way, it will be beneficial to PWD in particular and increase the awareness of those living with dementia. It’s been suggested that putting across as much personal experience as I can, and talking about the journey, will be very useful to everyone; so that’s what I’ll base it around then.

Beloved Mote Park, a place where I love going for walks anyway and which I’ve attended since last August, doing the Thursday dementia friendly walk. The actual walk is being relaunched, and they’ve done quite a lot of work at the park putting in all sorts of interesting stuff like signposts and information boards, but also audio-stations and audio-posts where you get to hear a narrative about the park; about things in the park; about wildlife; the sounds of various birds. There is also a talk about the various trees, which is so really good, and useful. Great dementia friendly walk! The actual walk launch event was well attended. A Counsellor was there, together with the CEOs of a few companies, particularly Age UK and Dementia Adventure who have been very instrumental in coming up with the ideas and funding for this adventure; and Meridian TV were also there. Lorraine and I got the chance, at that event, to represent those people who live with dementia, and we both got to speak on the TV about it; so quite a thrilling time! That has been followed up by me being asked, by the local Medway Dementia Action Alliance, if I would be willing to talk again, in conjunction with Lorraine, at a voluntary services event conference to speak on behalf of the DAA, where the two of us will be working together and giving a talk about dementia to the Kent voluntary services. So happy, as yet another wonderful chance to work together comes our way. We do seem to be doing some pretty good stuff out there at the moment. I managed to miss the actual broadcast of the Meridian TV news item covering the dementia friendly walks, so I missed me being on TV. I didn’t capture it and cannot find it on catch-up, despite now having cable TV. Bloody useless thing!! 200 channels and cannot get the five minutes I actually want to watch! I’m still working on trying to find a copy so that I can post it on here, but haven’t managed it yet. I’ve been in touch with ITN and they’ve advised me to get in touch with Meridian, but they haven’t got back to me with that link to it yet; so fingers crossed for next month!

BUT now they have so here it is…..tv star as well ha ha!!!! Meridian

I have all these work appointments between now and the end of June, plus several others, and a big dementia friends session to something like 150 people in one hit. All sounds pretty exciting but, taking all that on, I’ve decided that I will probably need some holiday stuff thrown in there as well. I have some good stuff to keep me going, so I’ve booked a few one-day coach trip excursions and a couple of long weekends away as well, so that I’m getting plenty of rest.
I can’t remember right at this moment where all these different excursions go to. I know one is to a Chinese lantern show; another is a trip away to the coast; another is off to the New Forest. But others? Who remembers? Will look at the tickets sometime, if I can remember where I left them lol. Later in the year I want to look to see about going for a music Weekender. I think one of these tribute bands like Quo, or Queen, or Stones, or Roxy Music; just to get away and have a good head-banging session, or something like it. My head needs a good head-bang every so often. So there are all these training sessions coming up in care homes, plus a couple of sessions for consultants, and also a couple coming up for security people who look after hospitals and who also do Street security. They’re looking for some kind of dementia training as well, so loads of exciting stuff on the way.

The second part of the Alzheimer’s genetic research project took place, with a couple of hours worth of various questions for good fun, and no blood test this time, but the final part had to be left out, and was something to do with me saying loads and loads of words which need to be taped so that they can hear how the words are supposed to sound. They can then work out whether you’ve said them correctly so they can score you. However, because the prime tape (the one which has the correct pronunciations on it) was not available, the test couldn’t be done. I seemed to do all right on most of the scoring but, as usual, the the tests were mostly straightforward, particularly in the early stages, with the usual ‘Where are we?’ ‘What day is it?’ ‘What date is it?’ The name of the current Prime Minister etc. All the standard stuff that I’ve almost been doing in my sleep for the last eight years now.

Just two final points for this month’s blog. I went to the cinema again and saw the film ‘Inferno’. It’s the next part in ‘The Da Vinci Code’ series. The film was OK, but I got a rather sharp reminder of why I spent so long avoiding the cinema. It is so, so loud!!!! In part of the film, the guy (I can’t remember his name; I know he’s played by Tom Hanks) comes around having been shot, or something like that, and he’s got something wrong with his head, which is making him hear sounds really, really loudly. So to put that across to the cinema audience, the director of the film has decided to make the soundtrack extra loud. To me, the soundtrack in the cinema is extra loud anyway, so when this came along as being the extra loud stuff, it hurt lots. So if you’re thinking of dropping in to see that film, be careful if you’ve got any issues with your hearing, because it’s ultra loud in some bits; so watch out for that.
The final thing for this month is another link to a little video that I took of the Chinese New Year celebrations, here in Chatham. It’s been quite an adventure finding out about that, even though it happens every year. But for some reason, this year’s event was very poorly advertised. However, I did manage to track it down in the end, and what a lovely little time it was too! Great fun; people in a good mood; fabulous colour and music, plus dancing and exhibitions. The only thing that kind of spoiled it, was that so many people, who are ignorant of the culture of others, were just walking straight out across the line. ‘#### you!! I’m doing my shopping and I don’t want to have to change what I’m doing, or where I’m walking, just because some Chinese people are having their New year celebrations! So they just walked out, got in the way, didn’t care that people were trying to take pictures; didn’t even seem to care that the people were dancing and coming along in the parade. But there we go, I suppose. That’s life nowadays. Anyway, have fun!

Here is the radio show link

http://memorybilia.co.uk/sound/sheppey%20intro.mp3

and the Chinese new year parade https://youtu.be/-ODybzXos3g

catch ya soon

Wayne X 🙂