Thursday, was another frustrating day and I think that it should be
labelled ‘I should have stayed in bed day!’ but silly me, I didn’t.
Why? But I am getting ahead of myself and have to deal with an
interesting day yesterday first.
up, good start, and looking out of the window all seemed well so I
dressed accordingly and set off for the Wednesday morning walk group.
Things were fine until we left the library and started walking then
the rain came, and the wind, and more and more of both. Eventually
after about 30 minutes we again reached the sanctuary of the warm and
dry library, soaked through. Those of us brave/stupid enough to have
walked in the rain sat in soaking clothes to enjoy coffee and drip
dry. An awful lot of drips were present!!! went home, dried off,
changed ready for afternoon and 10 pin bowling.
once again my neighbour and myself set off on the walk into next town
and along the way, heavens opened and we got soaked, again. I just do
not learn. We chickened out and jumped on a bus for the last 5
minutes of the journey horrified to find that the less than 1 mile
bus ride costs nearly £3.00, I need my bus pass quick!
the bowling went pretty well, I managed 2 sticks and 4 clearances
during the 3 games and on 1 of the games came second out of the 4 of
us. Must be getting better or luckier.
back home to find a letter from a health agency that works on behalf
of the PIP department. Excited I thought that maybe the 16 week delay
was not true, or I had lost 16 weeks last night ( anything is
possible now days). Neither, it was a letter to tell me that some
health professional wants to come and talk with me at home to
continue the assessment process. I
know that I should not moan about PIP people coming round, especially
after having moaned about their 16 week delay but why do they insist
on coming, when I should be at my therapy group session on a Tuesday
morning!!!!!!!! Does dementia effect my day…. yes…. but not as
much as you coming and disrupting my schedule. Aaaaaarggggh!!
what on earth am I supposed to tell them on top of the 40 BLOODY PAGE
form already sent in with letters from doctor, psychiatrist, care
co-ordinator et al. Is this just a way of making sure someone stays
in a job as a ‘healthcare professional’?
Whoever decided on the
first 3 letters of assessment certainly got that right.
a little frustrated by this whole thing.
posted a moan about this on TP and it was suggested that I ask them
to change to date/time. Seeing as this is mentioned in the letter and
a 0300 number included, it seems to be the thing to do. Simple….
don’t you believe it!
dawned and off to CST group in the hope that I can get someone to
telephone PIP for me and also to find out about why Tuesday people
ignored the last Thursday homework about pictures. I again helped
with getting teas and coffees done, then we were introduced to yet
another different person who had not even been here last week but
apparently will be for all the Thursdays from now. As I often say,
‘we will see’. She was quite terrible and if I am going to avoid
public character assassination, which I am, then enough said but she
really should not be working with this group/type of people.
Rock, where and when are we, what’s in the news, quick exercises then
I asked about Tuesday. Got an apology but no explanation except the
group leader says she will mention it to the Tuesday people (sounds
like it could be a TV series name). We then spent the rest of time,
excluding another round of drinks and a tired version of Elvis,
talking about food. Good subject for a practical but naff in theory.
We discussed what we have in our cupboards to produce a snack and
then did a plan and budget for a 2 course meal for 4 people within
£15. It seemed that most things were by magic already in the
cupboard otherwise the budget would have been smashed to bits but it
was ok and quite funny listening to the arguments about what else to
have with roast lamb and what fruit to put in a pie. Forget about the
fun and games over how to make custard!!!!!
the session the group leader made the call for me and failed badly.
Despite having a number to call and what seemed a very valid reason
for wanting to change the appointment and having a healthcare
professional speaking on my behalf, we got nowhere. It was left that
someone from this ‘PROFESSIONAL’ organisation would call me back
later to see what can be done. The whole reason for having someone
make the call for me is to save the anxiety and misunderstand of
dealing with it myself on the phone. Total failure! Even bigger
failure is that no-one bothered to call me back anyway so not sure
where I am now????? so where I am who knows, what I am is very wound
up and close to exhaustion and ready to give up!!!!!
feel a bit victimised because I am TOO YOUNG to have dementia so must
jump through more hoops and because of trying to be independent am
just treated as if all is ‘normal’, well its not!
here the day just got worse and more difficult as I became more and
more tired and confused.
wanted to get a folding laptop table and my local Argos had sold out
and did not plan on restocking so I decided that as the next nearest
store was further on the bus route than the CST group meeting, I
would bus instead of bike today. Got off bus and went to session then
afterwards I went back to the stop to continue on my journey. Still
thinking about the failed phone call I waited for the bus, and waited
and waited and waited. After about 3 of the timetable slots had been
missed and by now cold and wet, again, I asked the driver of the next
bus that came along where was my bus. It seems that they do not come
along this road at the moment as there is a detour in operation.
Confused as I got off at this stop this morning, I walked back to the
previous stop. At last my bus came but just flashed his lights at me
and sailed on by. Love you too, flashing lights are lovely but meant
nothing to me. I looked at the timetable at this stop and saw a
notice that explained for this week this stop is not being used, I
need to get the bus in another road. Luckily, because I fear getting
lost when out on my bike, I carry a local A-Z so looked it up and
went there. Very very confused and sure that even without dementia I
would have struggled with this one.
off the bus at this totally new unexplored place and thankfully the
entrance to the shopping centre is right opposite where I got off the
bus. Into the centre and I wander around a bit trying to find a McD’s
to grab a snack and use a voucher I carry around. Could not find one
so gave up when I bumped into Argos. For some reason the computer
screens here were different, or at least seemed so to me, than those
at my local store. Struggled to find the code number for the table I
wanted and then thought it was £5 more than when I looked it up
locally???? my mind must just be scrambled today. Queued up then paid
with a credit card as I felt the card machine would be too much for
me just now. Got my box and out I go. Wander around a bit trying to
find where I am and realise that I must have come out of a different
door than the 1 I entered so am now lost unable to locate bus stops.
I went outside and did a circuit around the whole outside of the
shopping centre knowing that I must eventually get to the stops. This
worked and when I gratefully fell into a seat on the bus, knowing I
am now only 1 change from home, I relaxed, a bit.
the journey trying to work out what words I could use to post up
about today, especially the phone call, without every second word
being censurable. I gave up thinking as there is no way to sum it up
without the odd **** sneaking in!
just sod the world I want to get off!!!