that go bump in the day 5

and meetings and cinema and not much but ……. (03/10 – 04/11)

month of October was different to say the least. As it was trundling
through, it seemed as though nothing of any particular note was going
on, but when I finally sat down to give the blog-notes the time,
effort and attention that they deserve, it seems as though stuff did
happen. Quite a lot, but nothing really major, up or down, so
pleasing in its own way. All I am getting at, is that not much of
what follows is of a big nature compared with most of the previous
months, but it is all still related to how I feel about, and cope
with, my dementia and associated activities.

MemoryBilia meeting came, and went, with not a lot to report back to
you, except that we tried to set dates for the website work party to
meet and authorise publishing the site I have created for them. What
was very frustrating for me was that later, the planned meeting was
again cancelled, as one person, not a member of the work party, could
not make the dates available. I am at a loss as to why that should
have made a difference, but presumably I am missing something here?
the meeting, three of us met and went for a meal at Wetherspoons to
make up for missing the date when I was in hospital. All went very
well, and their odd system gave us no troubles this time. Now I can
move on and try a harvester to see how that goes. And maybe, just
maybe, I could risk going back into the lion’s den and try to subdue
a carvery system, if my heart and dementia addled brain will allow
the stress.

during this week, I had a dinner cooked for me. Magic! Met with Ash
to discuss a fast approaching training session for a company that
provides home carers, and went to the cinema for the first time in
several years. I have not tried to go since having my ears blown out
the last time. Nowadays, it seems to be unnecessarily loud. Whether
the volume is real, old age related, or dementia perceived makes no
difference, it hurt. This time it was reasonably ok; not great, but
ok. Maybe I am getting hard of hearing (helps!), or just getting used
to my ears hurting. Or maybe the company, and a film I really
enjoyed, made all the difference. Ms. Peregrine, the film not the
company, was fabulous and I sat enthralled all the way through. Such
a fun, positive and lovely film.

next week had several small issues and was topped off by my talk at
the training day. But first the smaller issues. The peer group
meeting was fun and informative. It was also productive, as I have
been asked to put some notes together about my dementia walk
adventures, which will then be forwarded to the Alzheimer’s Society
guy who organises our local walk. Maybe next year will be a little
more dementia friendly for those actually living with dementia, we
will see! A slight downside to the meeting was that whilst listening
to a rep from an electronics type company, as he extolled the virtues
of his company’s tracker system, I got more and more agitated. Please
remember that, as a blog, these are my personal views and comments,
and do come from someone quite confident in the use of technology. To
me it is a poor system, as it is only a ‘locator’, not a
‘tracker’. It only shows where you are, not where you have been.
It only links to a central base, which then contacts your next-of-kin
(for example) rather than linking to anyone (or many) that you may
wish to allow contact. Plus, it costs a whopping £25 per month. In
contrast, Dave and I use free apps on my phone, tablet and laptop
which use the always-on GPS signal. Once it’s been set up I, the
person living with dementia, do not have to be aware or interact with
it in any way, as it just sends my position, elevation and speed
every five minutes (could be set to each minute if wanted), all the
time that the phone is on. As it happens I did the setting up, but it
could be anyone with some computer/phone skills. Yes, it requires, at
least, a low level smart phone to hold the app, but that costs much
less than £25 per month and allows the watcher/carer/next of
kin/monitor etc. to actually call the PWD to check if all is ok if
anything seems amiss. An electronic key fob with a chip in it does
not allow that, even for £25 per month!!! And yes, you may ask what
happens if the carrier goes out without the phone. Well, the same
applies if they go out without the key fob, or whatever!!!! Another
plus from this week is that notes and quotes from the hospital
nightmare blog are being used in a bulletin NHS mag, a report to the
hospital board of trustees and a report to the health trust involved.
Could get some kind of result, but we will see. Another downer of the
week was running for a bus. It was only about 750 mtrs, but enough to
remind me that I am now a year or three past being a teenager. It
took me literally three days to recover. The emotional shock of now
knowing I am no longer a teen will take a lot longer to recover from,
but I did also have a good physical experience at the dementia cafe.
We did some dancing for dementia and, although I may look
stupid, I can still bust some moves haha!

mega day working with Dementia Inspired, training a set of carers to
be more dementia aware when they go into people’s homes. Was a truly
great time with a fabulous bunch of people, all eager to hear what I
had to say and take it onboard. I always feel that the test of how
well a speech delivery has gone is by the depth of the questions
after the talk. Today was a very good one. This is the video of just
one part of my session, as I have cut out all the introductory stuff
that you have read about, or seen, or heard before. As the talk and
questions took 50 minutes, I have only published a short section,
which covers a game I played with them highlighting how vital it is
to keep everything in context and make sure that the client, the PWD,
understands why the carer is there, every time one enters ‘their’


would just like to thank the good people on the Talking Point forum
for some great comments and information that they offered to me when
I asked for help in my research, ready for this talking appointment.
Your advice was invaluable and was a very useful ‘at the coal face’
view of care at home, which I passed on to the gathered
professionals. Thanks guys, next it will be care homes in my sights.

we get to the Kent Dementia Friendly awards, and almost a meeting
with Angela Rippoff. I was there with Ash from Dementia Inspired, the
dementia awareness training company I work with. I was there not just
to help on the stand with him, but also to support Ash who,
incidentally, was nominated for two awards.

Lorraine was also at the
show because, as current holder of the individual award, she was
required to pass it on to the next winner. We arrived in good time,
me sporting my newly acquired cap (lost yet another hat on the buses,
which makes three this year) in which, I think, I look fairly good.
But then I am biased. Anyway, we got set up and all was going well. I
was interviewed by the local radio station, Sheppey FM, who are also
internet based (, but I missed the broadcast
when it went out. I am trying to get a copy of it for purposes of
memory and will post it if they give the ok. The two major points
from the day, so far as my memory goes, is that the individual award
was won, again, by a member of my MemoryBilia group. Yeah, well done
that man! I also managed to avoid having a shouting match with Angela
Rippon about her misleading dementia TV programmes. As she approached
our stand, stopping to talk with the exhibitors and surrounded by her
klingons, I did the right thing by finding Lorraine and getting her
to talk instead. It was an interesting conversation but, as rather
expected, the journalist denied saying anything wrong on TV. I may
need to watch the documentaries again to check. But I seem to
remember the forums buzzing with discontent that night, so I am
fairly certain I remember it correctly. A big personal plus that I,
quite by chance, caught on camera was during the awards ceremony.
While Ash was on stage to get his runner-up award, which was why my
camera was trained that way, Ms Rippon managed to drop and break one
of the awards. Could not help but laugh. Sorry Dave, but I never said
I was a nice person.

the following week, I had one of my black and white dementia moments
when I got into an argument with one of the council health-walk
leaders. Every walk I have ever done with the council has been signed
off on an attendance card I carry around with me. On every occasion,
the walk leader for that day has signed my card before the walk while
we are chatting at the start point. Even when I turn up to a new
walk, the leader, despite not knowing me but probably knowing of me,
signs the card. Although on this day I did not know this particular
leader that well, I have seen and spoken with him before and I have
done this walk about five times in the past. I offered my card to be
signed but he refused to do so, quoting the rules at me that it
should not be signed until AFTER the individual has actually
completed the walk. I was enraged! Why would I bother to get two
buses there if I did not plan on completing the walk? Why would he
not sign when everyone else has always done so? He again quoted rules
at me, so I swore and told him I would get it signed by another
back-up leader for today, then stormed away and got my card done. I
slowly calmed, a bit, but as the walk start-time approached, Mr.
Rulebook decided to start spouting meaningless, unimportant, garbage
at us. He must just love his voice and the position of assumed power
he feels he holds at this moment. As the official start time came,
and went, I shouted across the library that, according to the RULES,
we should already be walking, not talking, so I started my way down
the stairs. In my black or white world you do not quote rules at me
then ignore them yourself!!!! The walk was lovely with, what was new
to me, a stunning view across Medway. Afterwards, about 30+ of us
again went to Spoons for a mega ‘much as you can eat’ nosh-up.

a, seemingly, wasted journey to the eye clinic, as the next part of
my ongoing exploration into my recent meltdown. I did get seen (no
pun intended) very quickly, but all they could do was a 20
minute(ish) field test? The results have to be passed to a
specialist, who I should then see (no pun intended lol) straight
after the test. Somehow, and unsurprisingly, the hospital had not
booked me an appointment with the specialist, and so it was clear
off, go home, we will send you the appointment and you can come all
the way back here again. Another whole day to do that! Two weeks
later and I am still waiting. Maybe it did turn up and I just did not
see it (pun intended ha ha!).

final week of October, bringing us into another new month, had a few
ups and downs, twists and turns, ending with my very, very long
awaited PIP tribunal hearing. Only been going for ten months, so
about time too! I had wanted the DWP, as did my advocate, to finally
back down at this final hurdle. Surely, if I was still shouting for
justice, they must see something is wrong. But no, they still
protested, quoted the original paperwork and assessment, again, and
so into court we go. But before we end with that, the week leading up
to it.

November 15th I am involved with a training day at a care home, this
time to cover challenging behaviour. To get an up to date view of
current care home practices, I wanted to do a bit of secret shopper
visiting over the weekend. I had a list of about eight homes which
claim to be dementia friendly, and set out with the intention of just
turning up as a prospective future guest. I will not name any of
them, nor go into details about the visits, but it was horrifying, to
put it mildly. I am sure that those of you reading this, who have
daily dealings with some homes, will know only too well what the
problems are. Time; money; resources; training; old buildings; steep
stairs; rickety lifts; odours; bland music; residents parked by the
TV…….. the list could go on. The staff seem to care, and want to
be different and better, but are somewhat hamstrung by the many
problems. The contrast between the ‘excellent’ rated home and the
‘acceptable’ rated home, was immense. Far too immense. The
acceptable was a long way from acceptable, but those are the rules.
Lots needs doing, and staff training alone will not make enough
difference. I want, and need, to find ways of getting to management,
not just doing odd days training the staff. But that will be
difficult, if not impossible. The excellent rated home was so pleased
by our visit that we got invited back for their halloween party on
the Monday. Plans were quickly changed and we attended. It was a
lovely time. The guests, or clients, or residents (not quite sure how
to phrase that one – help please), seemed to have a wonderful time,
but being there and really seeing things operate at a grassroots
level still threw up some problems, even at an excellent home. When
reading the following comments please do take into account that how I
saw things does not factor in such things as staff break times etc;
so I could be seeing it very wrongly.

enough staff were involved in getting people to and from their rooms,
through the locked doors. Which,for the residents, meant long waits
sitting patiently in chairs, before and after the entertainment. At
least six uniformed staff sat around, uninvolved, after depositing
their charges. Some even went outside eating and drinking. But those
left to interact with the guests were very attentive and ‘into’
the occasion. It was very loud, and in a confined area, but a lot of
time and effort had been put into making the area look
party-friendly. Some members of staff did not use names; did not get
the individual’s attention before asking questions, and asked
multiple questions without waiting for answers. The biggest and most
scary thing I noticed was that food was being put on plates without
any knowledge of the dietary requirements of individuals. At one
point a member of staff asked if a woman was ok having cake. The
response was a shrug, and so the cake was given and very quickly
devoured, paper as well. Hopefully the chefs had taken all possible
dietary requirements on board during the preparation. All in all the
staff were wonderful; caring; attentive; fun, and involved. And when
my time comes, I want to come here. Doubt I will ever be able to
afford this top-end location, as it is over £300 per week more
expensive than the ‘middle’ rated horrid home. Such is life! But
by then, maybe I will not even know and, therefore, won’t care????

a messy affair (no, not like that; what are you thinking, people?) at
this week’s COGs club, as we made various pizzas for our own lunch.
It was fun, messy and tasty, and did make me feel pretty good to have
achieved something. I also got to meet Jackie Tuppen, the creator of
the national COGS clubs, and have a bit of a talk. She likes the
blog, wants to set up other clubs internationally, and is interested
in Greece. So if you are reading this in Greece, and would like to
see about getting a local COGs club organised, drop me a line and I
can get it passed on to Jackie.

have been asked by the Medway Dementia Action Alliance steering group
to do a brief (ha ha Wayne and brief in the same sentence, you must
be joking) talk to them about myself; my past; my dementia journey;
the blog; and how I live now. Well, to cover all of those things may
take hours, so I’d better cut it to the bone and only do a few
thousand words, just like here.

so we come to PIP day……………

weather did not give us many hopes of a good day, as it went from
overcast to torrential rain, with odd gaps. Luckily Julia, our
volunteer driver for the day, Dave, and myself, were not really
bothered about the weather, as we expected to be stuck indoors for
the day. We set off at 09.30 for our 11.00 date with the man from
PIP. All was good, and we noticed a proper old-fashioned cafe near
the tribunal building as we went in. A visit to celebrate, or
commiserate, was set while we got our much needed take-away cuppas on
the way in. As it turned out, we only just had time to drink the hot
tea because they were ready for us within a few minutes of arrival.
The DWP had not even bothered to send anyone to represent them. I
guessed that they were confident about their position in all of this.
The three panel members of judge, doctor, and disabilities
specialist, were supported by a clerk and two sign language experts
ready to help, and also to support the specialist. It was quite a
grilling, for almost 80 minutes, and covered many topics and
directions from years ago, through my dementia journey, assessments,
and what has happened since. All the people, places, groups and
technology I use were discussed, explained and explored. It ended
with a statement regarding the law, as it stands, and the meaning of
the PIP criteria. It had been exhausting, for us all, as each of us
were given the chance to answer various questions, in great detail.
Maybe the original assessment should have been as exhaustive and
detailed and given this sort of priority time, rather than the rushed
40 minutes I was initially afforded. We were asked to leave while
they deliberated. None of us felt very confident as it had been a
hard time, but not unduly unpleasant. The law was however stated very
clearly. It took fifteen minutes plus, before we went back in to be
told they had found in my favour. Not only had the DWP been wrong in
not giving me any points for anything, but they should have given me
9 for general AND, most unexpectedly, another 10 for mobility. So I
get the standard rate for both. Not just that, but they have said it
is to be backdated to January when my first application went in, AND
it is to run for 3 years. If my dementia does not magically go away
in that time then I apply again, if I remember to do so. RESULT!
Maybe the DWP should have sent someone.

you all so much for all the help, support, encouragement and advice I
have received over the last 10 months of stressful dealings to do
with the PIP. Anyone still at the start of their claim journey, take
heart! We can win! Justice can prevail. And to anyone who has been
refused ….. well just refuse right back and keep on keepin on.

ya soon