that go bump in the day 34

2016 Week 3 part 2 and the long awaited dementia fair?

just want to say, before I start this bit, that this week was on the
whole a pretty flat kind of week compared with the usual. To try and
keep with the honesty and spirit of the blog it would not have been
right to take out the flat stuff so you have that as well, in
abundance. Saying that, I still did mostly enjoy the dementia fair,
found it informative and I do appreciate the immense amount of time
and effort put in by many people to get this kind of thing going
locally AND that I am very, very lucky to live in an area that has so
much attention on dementia. I did post a thank-you message to
Alzheimer’s Society peeps via the TP forum, after the event, and will
also email/see many others involved over the next week or so to thank
them personally. But here, in my blog, it is my job to put across how
I see it and feel it, not how I ‘think’ it should or ought to be said
in a ‘nicey-nicey’ polite way. If you want nice, then read the local
paper and get their review of the show.

so now on with the show………. the ‘Living Well with Dementia’
show, which started with entry and coffee at 8.45 am, so too early
for bus pass users to get at on time. Not a great start for people
with dementia who are likely to use the bus in dementia week to get
at a dementia fair? I had managed to get a copy of the event schedule
before the day and was pleased to see that the local council healthy
eating team were due to be there. Back in February I had been in
touch with them about getting a place on a single person’s cookery
course. Last week I tried to email them again to query progress, only
to find the email address now refused delivery. The new schedule,
available upon arrival, had changed and the healthy team were no
longer there, but the council were. Almost attacked the poor guy on
the stand and explained my problem caused by their non attendance. He
promised to get his boss to talk with me when he arrived. He did, and
his boss did, and said boss then promised to get a new someone to
call me about a course. Within one hour of the event finishing I got
a call from the council offering myself and Dave the next 2 available
places on any healthy eating courses. Job done.

must have been a real poisoned chalice event for the lovely lady
organiser as there were obviously 3 types of audience; those with
dementia, carers, and professionals, which made it an extremely
diverse audience. As she had been so helpful in getting us day parole
from the CST course, my heart goes out to her but my pen (keyboard)
still cuts deep. The event was called ‘Living Well with Dementia’ and
I shall not go on again into my views on ‘living with it’, but
will comment that our county (Kent) Living well with dementia
champion was there but had not been asked to give a presentation. We
had a chat about that before the start and she had come prepared with
the speech from 6-8 weeks ago, just in case. Another oddity of the
event, still called ‘Living Well with Dementia’, was that the mental
health centre that runs the CST course I attend, run the ONLY local
course based around Living Well with Dementia, and they were not
presenting either?????

being pretty unwell, Dave had risked joining me for this adventure
and quickly noticed that I was on a ‘reduced social nicety day’ which
happens occasionally. I can get a little bit full on at these times,
not only talking too much but also tending to say what is on my mind
without the usual cognitive filters censoring how I put things
across. Even here, in the blog, Dave has often had to censor or at
least persuade me to reword how I put some things across because of
being a little bit ‘bull in a china shop’ with my attitude. This
censoring is fine in principle and on paper/text but does not work
very well, if at all, live and at this moment. I needed to be aware,
especially as Mrs. Chatterbox and her friend

up on the same table as myself and Dave. On the whole I was a good

first half hour was supposed to be for looking at the stands but I
lost all that time doing the socialising stuff, constantly bumping
into professionals I pounce upon as I cruise through DementiaLand.
Each time we sat down, someone new would turn up to say hi, but it is
really rather nice to be acknowledged so much. I must be making a big
impression (or depression) on many people.

the 9 presentations, 3 were far too long for PWD to comfortably sit
through. I was mentally wandering and physically fidgeting after only
10 minutes of the second presentation, which was 45 minutes long. It
was a good subject ‘The art of talking and dementia care’ but was
just, long. The presenter was fine and she did a good job, so at the
mid morning break I went and had a chat with her. Amongst other
things said, and to Dave’s horror, I told her that the session was
too long! She was sympathetic and agreed with me, explaining that she
had been given the time and told to fill it. Dave is just far too
nice, I felt she needed to know, if she is going to succeed at
dementia shows. This just highlights the problem with trying to reach
such a wide audience in one go. One speaker told us about social
walks in Essex, but not here in Kent; English lessons in Brazil, but
not here in Kent; postcard making in Somerset, but not here in Kent;
museum visits in Sussex, but not here in Kent; sporting memories
events in Scotland, but not here in Kent. This last one about the
sports memories had a slide showing Bobby Moore, ENGLAND captain,
holding up the World Cup, maybe not the best thing to represent
Scotland and sporting memories ha ha! Although with these comments I
am poking fun at the talk, it did highlight that so many other places
are doing so many great things and I hope the professionals in the
room took notice and bring all this stimulating stuff to Kent. Just
maybe not the social walks, as I don’t think I can manage any more
than I do now unless they start doing night time walks, but then the
TV health programmes keep telling us we must get lots of sleep, so
that won’t work.

session that seemed far too long was actually only 25 minutes. The
speaker had no slides etc. and just spoke at us in monotone. The only
prop was a battery operated sleeping dog toy that ‘breathes’. It
had no battery in it so couldn’t ‘breathe’. I know very well
that people in the later stages of dementia

great comfort from such toys and dolls and blankets which they can
physically touch. She occasionally waved her hand towards her stand
to show that other items were available but I could not see the stand
from my position so it was of no help. Her presentation was ‘making a
genuine connection with people with a dementia’. Now that is funny!!!

one very brief question time, at the end of some presentation or
other, a man sitting with dogs on the sidelines, refused the offer of
a microphone because, as he put it, he has a loud voice. This was
true. A little later, it was his turn to present about the petting
dogs and he chose to use/abuse the microphone. It was so loud I had
to leave the hall as my ears actually hurt, even with my fingers
rammed in them. Everyone else was far too polite. I ended up in the
hotel reception area, but could still hear him despite 2 closed sets
of doors. I was followed out by the chairman of the DAA (Dementia
Action Alliance = Organisers) and we discussed loudness, shows, the
poisoned chalice being given to the poor woman from DAA who put this
thing together (sorry again Dave, maybe not the best thing to discuss
with the chairman) and the Dementia Friends programme which I want to
help with. We risked venturing back in when the windows stopped

others presentations were really good, informative, fun, well put
together and included such topics as singing; life story books;
exercises; acting out a story to do exercises; the importance of
relationships; keeping your brain active and, from the council guy
that I had attacked at the beginning, Making Medway a Dementia
Friendly Place. I think it is already, but am ready, willing and a
bit able, to help make it more so. A couple of really good things
that were said during one of the speeches, revolved around the roles
of facilitators in caring communities. We were told that they are
good if they are ‘flexible’ and that a good facilitator “will step
back and let people communicate. As facilitators, not controllers,
that is what we are supposed to do”. Any chance this speaker knows
the Thursday CST facilitator who I love so much?

the end of the show I got great thanks from fellow CST group members
and their carers for my efforts in getting us to the event, which
most of them mostly enjoyed. Mrs. Chatterbox was asked to quieten
down during one of the talks so I don’t think she will have many
positives to say about the event, but it will make next Tuesday’s
final CST group meeting interesting.

being nice to the ill Dave and getting away from there, I had a quick
chat with a man who had introduced himself as representing local GPs.
I told him that I tend not to bother my GP with dementia related
stuff as it is something he can do nothing about , I only go there
with general health issues. He told me that locally, dementia has
been placed at the top of the GP’s priority list so I should go talk
about it.

out Mr. Doctorman, Wayne is coming to bend your ears!

of the stands were packing up or had packed up and gone, so we just
had a passing look on our way to the exit.

the way home, and as a thanks for coming and putting up with me, I
treated Dave to lunch. But as he is not well he did not have much.
While in the cafe I got the previously mentioned call from the
council about the cookery course.

I later found out that during the earlier proceedings at the dementia
fair, while I was away chatting at another table, a person from the
Medway Health Watch, who was sitting at our table, asked Dave if he
had any problems to report. Dave told him “Yeah. He’s over there!”
Maybe I should not have treated him to lunch after all.

evening I did an email of thanks and constructive criticism to the
organiser, so I bet Dave is again worried.

Rippon TV programme, gggrrrrrr!!!

to add insult to the injury inflicted by last week’s farcical
dementia programme on Horizon, which was basically claiming a future
cure, Angela Rippon steams in with a comedy show covering the real
‘truth about dementia’. Ha bloody ha, it was as true as Santa
having a chat with the tooth fairy about the Easter bunny.

Telegraph delivered a quote the following morning:-

Truth About Dementia: Angela Rippon’s brisk tour of the facts
lessened its terrors”.

naturally it lessened the terrors, because it was so far removed from
any of the ‘real’ facts that it made dementia appear all lovely,
warm, cosy and funny. I guess, seeing as it is such a nice thing to
have, everyone will be adding it to their Christmas list this year!!!
I suppose those on the outside do not really want the truth as it
would be unnecessarily painful, and I can understand that view, but
it should not have been called ‘truth about dementia’ when it clearly
avoided so much of the ugly truth.

was so pleased to find out, in this wonderful programme, that
Alzheimer’s and dementia seem to be one and the same thing. That is
good, as I have both Alzheimer’s and vascular dementia but can now
relax in the knowledge that I only have one thing wrong rather than
the many it feels like on a day-to-day basis!

Rippon should know better really, as she is an ambassador for the
Alzheimer’s Society, that Alzheimer’s is just one of the many
diseases under the dementia umbrella. Maybe I too should know better
and not keep watching these programmes, but it is far too ingrained
in my soul to not watch them. In my previous work life, before
teaching, I was an IT department head and contracts negotiator and
felt it my duty to learn as much as I could about the enemy before
any meetings. This has stayed with me, and now the enemy is dementia,
and the meetings, daily. I don’t seem to be able to learn enough to
win this one and negotiating with me does not seem to be on the

I do not read the Telegraph, I just saw the headline online. Any
newspaper is far too much for me nowadays as I have to read each
paragraph several times to understand the meaning. Something like the
Telegraph would take so long, that tomorrow’s edition would be out
before I’d finished today’s.

and I’m at last going on a walk this week. Could not possibly miss
my Friday mornings as they give me the great lift I need for the
weekends. Great 4.5km walk up and down hills, with good stimulating
conversation. The only downside of the Friday walk is that it is town
based so, no lovely countryside, just history. After the walk I stood
up and gave a short thank-you speech to the 40 strong group, in the
silence of the library. The speech covered my dementia and the
group’s support and understanding; the blog; Talking Point, and the
well wishes I have been asked to pass on to this group of walkers, by
a few thankful carers who benefit from the information I provide when
I’m feeling good. That seems to make some sense to me and I hope it
comes across ok to you and also came across ok to them. While we were
all sitting around talking afterwards, I picked up another 5
appointments for my busy diary to manage. Wayne is becoming a popular
person, so thank you again dementia for starting to turn me into
someone nice. Shame I did not do it for myself 40 odd years ago!

afternoon Dementia cafe success. I have been trying to get a place on
an Age UK COGS (cognitive stimulation) group to follow the current
one but had been told that there is a waiting list. At the cafe today
I was approached by someone who had been directed to me,
coincidentally, by a local council member who I keep meeting at
various events. This new person is the centre manager of a local COGS
group and, after a bit of schmoozing, I am now starting there next
Wednesday, immediately following on from the current one -Tuesday
being the last session. Sorry, got no time for waiting lists. Also, I
know it is a bit of mercenary thinking, but having the centre manager
and facilitators at an Age UK centre in my corner for the future war
over PIP, cannot be a bad thing, can it? Saw the Admiral nurse from
the Tuesday cafe who has taken on my PIP case, and she confirmed that
it has been put to my care co-ordinator who is putting together a
letter. Will check in about that while I am there Tuesday. If it is
not being dealt with, the new COGS centre manager has said to take
the refusal letter with me to the group session next Wednesday and
they can start on it. I have now also been invited to attend a local
Dementia Friends event so I can learn what is needed to put the
message across to local businesses. Then I can help champion that
push in the near future.

the day I got to hear, argue about and fret over the many views
expressed, regarding the Rippon rubbish last night. The general
public, or at least those people usually outside of our world, found
it to be a good programme and, unfortunately, I seemed to be rather
outnumbered by people who thought it ok. I gamely fought my corner
but was really glad to get home and check in on TP where ‘my’
normality and general ridicule and disgust of the programme
rebalanced my mind. Thank you carers on Talking Point who
live/survive in the real world rather than the TV fantasy ‘truth of
dementia’ world.

looking forward to tomorrow as Dave, myself and another friend are
not only on the afternoon walk but also on an adventure in the
evening to attend a stand-up show about……. Dementia. This one is
meant to be funny though!!!!!

thanks Gill for this little post from Facebook

I just need to find out what bit of furniture is to blame for me
forgetting whilst I am STILL in the room?

this post has been so long-winded but I think my mood was already
dropping as I was writing these notes so it seemed a bit boring to me
reading it back, but this is how it felt. More on that in the next
blog, hope you enjoyed the ride anyway and I’ll catch ya very soon as
I continue to catch up with the posting schedule.