Things
that go bump in the day 54.

December…
Wow, that came quick!

Once
again I am starting with a sorry!!! This time the excuse is that I
was ill over Xmas, and
into the new year, and it took me some time to recover; get my energy
back, and then to get focussed enough for remembering what I needed
to be putting in the blog. On top of that busy stuff, a lot of fun
stuff got in the way. But hey! That’s life, I am glad to say. And I
also have what seems to me a pretty OK excuse for this edition being
delayed…….. live radio, technology and people NOT living with
dementia????? So what am I on about? Well let me explain. I tried to
delay this blog until I had my hands on a copy of my live radio debut
on Sheppey FM at the beginning of December. Not to spoil the story to
come about the show time, but I wanted to post a link to the
recording of the show, in this blog. But due to being ill; having
Xmas; getting a bit busy; plus doing fun stuff, I did not make it to
the studio to get a copy done onto CD. Despite two emails to the
studio making it, to me, crystal clear that I wanted a copy, by the
time I did get there, in January, it was past the 31 days that they
hold the files. Now to me, a person with dementia, 31 days seems long
enough to burn a CD or two. But being people NOT living with
dementia, they were somehow not organised enough to get it done. I
guess people without dementia do not have the need to be so organised
lol???

This
time I got a copy done before I even left the studio. But more,
probably much more, on that in the January blog!!

Well
there’s rather a lot to cover, despite losing so much time due to
‘not being with it’, so I’d best stop the waffle and excuses
and get on with it…..

The
month began right at the beginning, which is not quite as stupid a
thing to say as it may seem as, quite often, nothing much happens at
the start. This time The National Dementia Action Alliance conference
was to be attended, in London, on the 1st. Now not being that great
with crowds, and so a little bothered about what may be encountered
on the day, I had a bad night’s sleep This did nothing to help my
state the morning of the trip. I went to my local station to get the
train, in the wrong direction for London, to meet up with the others
going that day.

While
waiting for my train I noticed that the trains heading into London
were packed, almost standing-on-the-roof room only. This really put
me on edge. When I got to the meeting point I was the first there.
But soon, others arrived. I was asked if I was OK and mentioned about
being rather distressed. The reply was that maybe I should not have
come then! Yes, a very clear statement of the truth. But coming from
a source from whom I’d hoped to get, and expected, compassion and
understanding, it was harsh. But it did the job in getting me to
focus better on the positives.

Before
I weigh-in with the next moan, please do note that a week later I
found out that southern rail do not cover groups on their special
assistance scheme. Being
a group of peeps with dementia, plus a couple of great guides from
the Alzheimer society, we expected and waited for whoever it was from
the rail company to appear and help us with the special assistance. A
member of staff was persuaded to help us and promptly marched off up
the platform, with one of our helpers, and disappeared in the throng.
Luckily, one of our number, with dementia, knows this station and was
able to explain that this particular platform is in fact platforms 1
& 2 (????) and that our train would actually stop further along.
So we muscled on through the crowd. As the guard frantically blew his
whistle trying to get the train underway, some of our party wanted to
get on but were persuaded to keep on going along the platform until
we reached the member of staff and our helper. We were shown onto a
carriage, but were spread out and sitting in three different parts.
So much for the special assistance! Though I suppose you could say it
is very, very special lol. The journey was good and my anxieties
about crowding were not quite so bad. The expected special assistance
at the other end was………invisible, until one of our party had
trouble getting through the automatic barrier and was now on the
wrong side, and no ticket to open it again? Again one of our helpers
had to leave us to find staff support, but it got sorted. Again, very
special!
A
Black-Cab ride to the hotel venue was fun and the hotel very
impressive. Whilst some ticketed their coats in, I and two others
went downstairs to find coffees. The urn was empty and we were told
that the one at the other end of the room was working OK. Off ‘we’
went and upon reaching the other end, through the crowd, I started to
pour coffee and then turned to ask the others how they wanted it?
They did not care……they had gone!!!! Not feeling comfortable
about being on my own, in a strange place, amongst a crowd, I gave up
on the much needed coffee and went back upstairs. I had a wander
around the tables but, finding none of my party in the main hall, I
headed down the stairs again where I found out that they had decided
to use the toilets but had not told me …. just gone. Thanks peeps! Eventually
we were all collected together and around our reserved table. Just
another little moan here. Why would you choose to put the only table
full of people with dementia, those that would probably have the
biggest issues with seeing and hearing, at the back, at the furthest
point from the action??? Answers on a postcard please but make it in
big writing in a clearly legible font, ha ha.

The
day was really good and fun was had by many, including all of us.
There were many positives and, on the whole, things are heading in
the right direction when it comes to dementia awareness. Right,
that’s enough good talk! Now back to what I do best and having a moan
about things.

Our
table, those from MemoryBilia, the people living with dementia, had
yellow cards with the words ‘I would like to talk’. The idea being we
hold it up, so that those at the front facilitating could see we had
something to say. It worked a treat if the idea is to make sure
that those with dementia get no say. I held up the card for about ten
minutes and got totally ignored! When the facilitator tried to move
on to the next agenda item he was politely asked to acknowledge me.
As we could not see the front, I decided to stand and be heard whilst
asking why dementia peeps are made to be a drain on this beleaguered
country rather than encouraged to be a resource. The
beat-around-the-bush, political, non answer I got does not deserve
any space here, so I’ll move on. Although a good fun day it was far
too political, and no action or detailed personalised plans came out.
When asked questions, most panel members restated the question in
four new ways and then left them unanswered. The facilitators used so
much time merely preaching, there was little or no time to hold the
Q&A sessions. Just before the end of the day, and again despite
every effort to ignore us, the speakers were asked by another of our
members why he had spent the whole day listening to loads of talk but
did not see, nor hear, about any action. I do not recall if there was
an answer, but I seriously doubt it. But I do want to say again that
there are at least signs of forward movement.

All
we can do is keep going, keep asking, and keep trying to teach. Just
one other thing about the day which is, I gather, standard conference
practice now. Why do we have to try and eat fabulous, tasty,
wonderful looking hot food while we stand? How are we supposed to do
that? Where do I get lessons? Do I rent another set of hands from
somewhere? Dinner plate, knife, fork, dessert dish, coffee cup and
spoon; and two, only two, hands!!! It is tough when you generally
shake a bit anyway, and even tougher to try and carry a plate of hot
liquid/food etc etc, up stairs through an oncoming crowd, to sit back
at the table you spent the morning at???

The
trip back was wonderful. We arrived at Victoria station and a member
of staff greeted us and walked with us; opened the barrier for us;
escorted us to the train, and found seating for us all together,
magic!! Why so, so different from the journey there?

Pretty
soon after that big day was another personally big day, where the
MemoryBilia website work group got together for completion of the
work I had done on the website for MemoryBilia. I was excited and
expectant, ready to make a few, hopefully, small changes and then put
it out there! We had major problems, as the edits have to be done
online but via a development site, as the web pages are not yet
published. This led to major security issues, as the venue we had
gathered at was so tight on security that nothing could actually be
done. So the meeting was stopped and rescheduled for a later date at
a different venue. A big personal disappointment, but all was well in
the end. At the follow-up meeting we agreed on a few changes and
corrections. These were done live, and next month the site will go
live. I hope to be posting a link to it next episode and will expect
some feedback from you all on what you think of it.

The
more constructive criticism the better, as I can then develop this
into something useful for PWD and their carers; so please do not hold
back. If any of your comments upset me, do not worry, I have dementia
and will forget all about it quickly…….. and probably ignore what
you say anyway, hah ha!

The
following week was my first, nerve-wracking, session on the live
radio station to talk about dementia and the issues surrounding it. I
was truly buzzing and had a wicked time, but the immense efforts of
staying ultra focussed for a whole two hours, worried about what I
may blurt out on live radio, did take its toll. Once the
adrenalin-supported two hours were up I was fit to drop, but did feel
really good about what I had achieved. Just hope it went down OK. The
guys at the station, Rob and Keith, seemed very pleased and have
asked me back……maybe they were not listening. Much more of this
radio adventure next month. Disappointingly, as I said at the start
of this blog, I have no copy of this monumental event for me, so I am
unable to share any highlights, lowlights or cock-ups with you here,
now. I remember speaking about all sorts of stuff; talks; training
sessions; problems; the trip uptown; doctors; hospital stays. But
mostly the fun I have poking a finger at my world of dementia. Long
may that continue! And if I am to continue, hopefully expanding/radio
talking, long may I continue not having a vascular moment and saying
the wrong thing, at the wrong time, about the wrong person. If it
happens, then it happens! That, after all, is the true face of my
dementia.

What
with the various council health walks; Xmas bashes; The Peer Group;
MemoryBilia; Dementia cafes, and some other random Xmas events thrown
in, I had quite a few dinners and was soon feeling even more of a
turkey than I usually do. Most
of the events were great fun with fantastic people, organised by
willing and seemingly endlessly energetic volunteers. The world would
grind to a halt without all you fabulous peeps, so please accept my
profound thanks for all you do, have a great and well earned rest,
then get out there and organise me another sensational year.

Again
(referring back to earlier comments), at this month’s MemoryBilia
meeting (and Xmas do hic!), southern rail (think that is what they
wanted to be called?) sent three managers to speak with us about
services, staffing and the infamous (in my world) special assistance.
It was a very good, informative and productive meeting, and out of it
came a suggestion that they would get staff representatives from
local stations to attend local dementia cafe meetings to explain
their services for PWD. A brilliant step, and one that could have
major implications for the ever growing army of PWD who would like to
get out and about more, either individually or in small groups. The
one thing on my mind, and I did confront them on it, was how poor our
group had found the special assistance. As it turns out, I/we were
mistaken, and it is not a service currently in place, but only for
individuals or school excursions. This did explain why we were so
underwhelmed by what they did for us on London day. They are willing
to look at it in the longer term. I may well get into trouble for
this one (I will claim vascular dementia as my excuse), but if they
have no service for small groups and several PWD are going out on a
trip together, all phone them individually and get the service put in
place for each one of you, ha ha, job done!!!!

Had
another trip uptown under my own steam, with bus-passes in hand, to
go and admire the Christmas lights at various locations. It was a
mammoth journey involving a total of six hours on eight buses; a
picnic on the bus; major crowds; getting rained on lots;fantastic
trips down memory lane (and carnaby street lol),
and creating some new fantastic memories. It became an extremely
long, delightful day and my wonderful smartphone was on brilliant
form, enabling food; drink; sights; prices; bus stops; timetables;
walking routes and adventures to be easily found and achieved,
safely. We did not get lost even once; bit boring really lol. I must
find some way of giving more people lessons on the benefits enabled
by a smartphone on maintaining independence.
Yet
another do was attended at a golf club, and I must not moan much as I
was there as a free guest. It
was a mega good time, and great fun, with loads of games played (not
golf); prizes; fab food, and some wonderful entertainment. BUT, being
Wayne, I have to make a point in saying that the ‘singing for
dementia’ session was toooooo much. If
you are going to have such things for PWD please try and remember
that, in general, we are unable to cope with a long string of
instructions. One thing at a time, maybe two at a push, but trying to
make a fist of something when you have six or more things to recall
takes all the fun out. I am only too happy to have a crack at
anything, dancing; singing; poetry; acting (the fool); dressing up;
any sports etc etc. But looking stupid because I cannot remember what
I am supposed to be doing or saying next, frustrates!!!!!!AND
trying to sing and/or join in ‘rounds’ is really confusing for
most, but certainly not all, people with dementia so, save that kind
of stuff for other groups please!!!!

A
bit of downer stuff to end with I am afraid……..

My
position at home is starting to get unsettled. I am coping less with
simple home-based activities; the main road immediately outside is
becoming a major threat to my safety on foot (had to give up the
bike); neighbours have nearly all changed, so I do not feel supported
anymore; and it is noisy, inside and outside at almost any time day
or night, so I have sleep issues.

Add
to those things that the gas central heating does not work properly
It is either on full blast ALL night for three days so you cannot
sleep, then runs out of credit so you freeze for the remaining four
days of the week, or it does not come on at all. So I have to have
electric heaters on; dangerous if left on when going out, Also a
hazard because of trailing leads when indoors, AND the electric works
on card meter, which I never remember to feed until nighttime when I
cannot get a new card, so end up cold anyway! The upshot of this,
together with some other minor issues, means that my Alzheimer’s
support worker has suggested getting my doctor and care co-ordinator
involved, along with contacting social services and the local council
intake team, to see about getting me on the list for sheltered or
supported accommodation. More coming on that one soon.

The
other downer was illness. It started with a simple never-ending cold
early December and slowly crept into man flu despite having had my
flu jab in October, as required. This flu type thing seemed to go
away in the week before Christmas (probably scared off by all the
Christmas dinners and the fact that I was carrying on regardless),
but then came back at the Christmas weekend, really knocking me down.
Turned out to be bronchitis, but I still tried to soldier on (medal
in the post lol). I somehow fought through to dinnertime on Christmas
day (which I cooked at last), then I gave in (or became so inebriated
I did not care!) and remember nothing until the morning of New Year’s
Eve. Maybe my cooking had caused food poisoning, but it really was a
bad time?

[Wilki’s
Comment] I didn’t get ‘Man Flu’ over Christmas, but I did get
flu – three week’s worth which, like Wayne’s, developed into
bronchitis. I won’t comment further on this particular label as I
run the risk of offending a ‘fair’ proportion of the population!
I joined Wayne for Christmas dinner, which he indeed cooked and which
was most enjoyable. He did himself proud! Thanks Matey!

[End
of Comment]

According
to my diary, a new prescription and a graph printout, I did attend
the GP surgery and also went and had my scheduled hearing test done.
I remember none of it; and even now, several weeks later, am still
not quite fully recovered and back up to full speed. Doing three
health walks in the week killed me and caused chest pains, so it may
be a while before I am back up to the five I like to do. Looking
ahead at the diary commitments on talks; training; research projects;
day trips and radio; and trying to find the time to write about it
all…….. I may never get the time for five organised walks a week
anyway! My life is full and grand, ended on a really big high for new
year with fun; dancing; great food; drink (some) and, as always,
surrounded by fantastic friends and great company.

Without
all of the people involved in my various groups, my world would be a
very different and probably uninspiring place, lacking the
stimulation that feeds my every waking moment and thus keeps me
willing and able to fight on. Volunteers; organisers; co-ordinators;
walk leaders; friends; neighbours; watchers; carers; supporters;
listeners; readers; advisors, Thank you, one and all, for my life.
Have a fantastic Christmas and New Year; you earned it by getting me
so well through the last one, and with your continued support and
effort, plus a fair chunk of luck and good health, we will do even
more and better next year.

Thank
you all for a marvellous year,

Wayne
xxx

p.s.
This is number 54 and I have not yet done a whole year, which means
we are doing more than one blog session a week!!!!!!!! Are you not
bored yet? It began, the blog that is, all the way back in February
last year. So with still another two months to go I am going to hit
56 or 57 for the one year as there is likely to be a january issue, a
february issue plus an extra as a look back over a year in
dementialand. I hope you will enjoy them as much as i enjoy doing it
and writing it. You have all done extremely well in putting up with
me and my ways for so long, thank you x