Almost
End of June but definitely end of my ‘rosy’ dementia world.

I
am quite sure that all of you , just like me, have had more than
enough of the in/out Europe saga, but to start this I have to speak
about a silly little thing to do with voting. The odd, rather
distracted, mental state that has been building up in me, as I am
sure was quite apparent by the boring phraseology encroaching by the
end of the last blog, meant I was drifting a lot, very tired,
unfocused and losing mental contact with myself. Polling day, as I
will cover shortly, was very much a ‘disconnected’ day and going to
the polling station managed to highlight the issues in a very
trivial, but to me, very unnecessary way

I
was having a difficult day where grey areas do not exist i.e.
everything is black or white – good or bad – yes or no, and this gave
me problems and frustrations at the polling station. I went feeling
fairly good about myself, with my polling card, to go and vote. Went
to the desk and was asked by a woman who did not even look up, “First
line of address?”. No please or anything, so I guess she had been
having a stressful time? I tried to give her my card but she wanted
me to ‘say’ it, as apparently anyone could turn up with my card. It
did occur to me that it was just as likely that the same ‘anyone’
could just ‘tell’ her they were from my address, but hey! what do I
know?

I
thought about the first-line question and told her, “Flat 5”. She
looked at the big list and said, “No, what is the first line of
your address?” Again I thought about it and again said, “flat 5”.
She changed tack and asked where it is that I live. I then told her
the full address, including postcode, and also queried as to why that
had not been the question in the first place rather than asking for
the first line. Trying to be helpful, I then explained that I have
dementia. No change, no reaction. Obviously that was not on the list
either. She then says, “You are”. I waited for her to ‘tell’ me
what I am. She waited for me to tell her who I am, but I did not know
she was waiting for that. She then finally explains that she needs to
know who I am. So I said, “Then why not ask me that?”

Finally,
after totally unnecessary distress, we got sorted, done and I escaped
to the safety of home. Is this ‘NORMAL’? Am I really the one with the
problem?

Right,
on with the show for real at last. I have been pretty lucky with the
weather today (Thursday), and after enjoying the major natural
pyrotechnics display last night (thunderstorms).

It
was dry as I left for the walk. A quick shower just before we started
walking was a reminder of how vulnerable we are, but it kept off
while we walked. Another shower when I was on a visit after the walk,
but then dry until I got home. Then it rained for hours. Who cares
now, ha!

Walking
was good but distracted. Had a short, very short, discussion about me
being a sufferer. This word greatly upset Lorraine, but I decided to
let it drop for the moment. It will be back though, as you know my
quite strong views on what to be called. Anything will do, so long as
I’m not called late for dinner! Had a look online to see synonyms
for sufferer. So which do YOU think I should therefore adopt:-

victim,
martyr, prey, sacrifice, incurable, wretch, endurer and so on and so
on.

My
vote goes to ‘sufferer’. And it will take a very good case to
persuade me I do not suffer, although the PIP peeps are doing a very
good job of trying to persuade me of that!

Halfway
on the walk we came into a major shopping centre, but from the
opposite direction that I remember having gone there, just the once
before. I was totally thrown. We sort of split up to go and have
coffees, with a plan to meet at this sign in 30 minutes. Great! ….
I can see this sign but have no idea where it is in relation to
anything else. I just went along with others hoping they would go to
the right place eventually? As we wandered through the centre I
spotted Argos, which was why I had visited here before. But it still
did not help me work out where I was, now. We made it safely to
coffee in Sainsbury’s cafe, then back to the sign with only one near
miss in the car park, a car park that I had not even noticed was
beside the sign???

Finally
after 5 weeks of failing efforts, I went to my PCA friend’s house
after we had walked together. Seemed a good plan as I had him right
there, then. So at the end of the walk we told the leader we were off
and headed to my friend’s place. There was no point in going back
to the library as it was shut for polling. It was an interesting and
enlightening chat, out of which came the fact that he is a former
chef who worked in London hotels. After hearing of my desire to look
after myself better, he will now be coming to give me some cooking
lessons. Should be a riot! You will get to enjoy a blow by blow
account of it, or maybe even punch by punch !!!. Also found out from
his wife about his bad driving and his denial of symptoms, which is a
rather different story to the one I had been given before. Got some
further advice about PIP and will chase it again. On the way home I
got a bit upset when finding myself in the middle of the road looking
the wrong way. Was pleased that I did notice, even if half a road too
late.

As
planned, I went to Tesco to get my smartphone fully enabled and had
problems over it. All I wanted was to move the old number and credit
to the new one, but the smartphone has security on it and wants a PIN
if the card is removed, which obviously it had to be. I did not know
the pin number and could not get it until I got home to my laptop.
Old phone disabled, new phone locked, so not working, so not able to
sort buses, but eventually got there and I remembered to go to the
polling station. If you do not remember that bit, it is the first
paragraph of this blog, ha ha!

My
continuing problems concerning PIP were not helped by the fact that I
had put the letter away, then forgot about it. I put out questions on
TP regarding getting help to do the PIP forms but no clear answers
came back. I was still thankful for what I did get. Had asked
specific questions rather than just asking for help, thinking this
would help more, but did not get specific answers. What am I doing
wrong today?

Friday’s
walk hot and sunny.

Had
to be stopped from walking out into road by a friend. I saw a car
coming but made no effort to stop myself from walking? The wonderful
person I was walking and talking with reached out and grabbed my arm.
I tried to dismissed it as a small thing and she graciously accepted
that, but was clearly concerned. Although most of the walkers know me
and know of my condition, I have never actually asked anyone to
specifically keep an eye on me. This may have to change, but I do not
wish to burden anyone. This time it was rather fortunate that the
lovely lady I was walking with, at that moment, is confident enough
about our relationship as friends, that she could reach out and grab
me. After yesterday’s excursion into the middle of the road, I am now
more than a little worried. Thinking it over, I recall a few
occasions where Dave has put out an arm to warn me. Not good signs!!!
Asked for PIP help at dementia cafe in the afternoon and told by
organiser and carers to go to Age UK, as they are excellent and work
with you all the way. Tried to call but too late on a Friday, so
emailed that evening with full (knowing me and words, probably
overfull) story up to now, and request for assistance. Still feeling
very troubled by the road incidents.

It
makes me concerned that the bike, when my ribs allow me to ride
again, may be a little too dangerous now, unless my awareness levels
go back up. But dementia does not usually work in that direction.

The
PIP problem seemed to keep increasing as, firstly, the contact I’d
had came back as not working there anymore then, secondly, the next
contact is on holiday until 4 days before the papers need to be in,
so no use. AND she does not have time to cover the hearing anymore.
Her only suggestion is, therefore, to contact the UK branch not the
local one. This would then entail doing it all by phone, which I just
cannot do anymore. Will try CAB first thing Monday morning. Feel very
alone and down and defeated. Dave not available as he is at bowls and
unable to be contacted. Almost telephoned Bob to say can I just come
sit there and BE with someone I know. Scared and alone not nice.
Cried. Posted on TP and got nice replies but need something more.
Eventually slept.

Checked
credit on new phone by internet as cannot work out how on phone. No
data bundle is shown on my account. Should be £17 as I only used a
tiny bit while learning how the data bundle is used. Also old phone
credit transferred, but it replaced the new phone credit instead of
adding to it. Not happy! Still feeling anxious and restless, which is
probably connected to the excursions and exertions of the last few
days. Used online chat with Tesco only to get more troubles.
Basically got told, when you transfer you lose existing credit (£32)
but … ‘Here! have £5 credit as a goodwill gesture’. My virtual
gesture back to them was not full of goodwill.

Although
fearful of even going out, I resolved to attack my main local Tesco
store, from where I purchased the phone. So got myself ready and
planned to go on a walk after Tesco visit, so got ready for that. I
had not originally planned on the walk, as unsure of Saturday walk
since ‘that’ Saturday, but decided I must confront these demons, not
give in to them (my demons NOT the Saturday walkers???).

I
was physically shaking as I went out, and stomach doing somersaults.
I do not recall the journey there in any way, so it was either
uneventful or I was so distracted that it did not register. The Phone
shop part of Tesco was very busy and only one staff member on, who
was not my usual sales contact nor the girl from Thursday’s
adventure. Went to customer service and asked if any dementia trained
staff were available. Was asked what do I mean. Joked that if I knew
that then would not need dementia staff. She was good, patient and
clear but unable to help. She took my phone, with my permission, and
went through it trying several things and getting information.
Probably a good job I do not go anywhere odd or naughty on my phone;
how embarrassing would that be!!! Anyway, she wrote things down then
took me and phone back to the phone shop bit. No one available to
help, so she said something which I missed then went off into staff
rooms, with my phone?

Waited…..
waited….. waited……. was probably only 5 minutes but seemed ages
in a very busy Saturday afternoon crowd.

Shaking.
Nervous. Fiddling with my hat. Biting at the skin on my fingers. Very
anxious. Unsure.

Felt
lost, just like a child probably does when in a big store for the
first time. Oh no, I am on my own! What is going on?

Where
am I? What am I supposed to be doing? Why is it that I look around
and see literally 100 people every few seconds yet feel totally on my
own? I do not want to be here?

Something
is wrong but I do not know what it is or why? I think that I want to
cry now. GO! RUN AWAY!

I
was just about to ‘wander’ back to customer services, which seemed a
logical place to go as that was where I started this event from, when
she finally reappeared, and with Thursday girl. Thankfully, after all
the hassle Thursday over the phone locking etc, she remembered me and
said that had I told her about the existing credit on the new phone
it would have been done differently. Well had I known I needed to
tell her, I would have. But not being a mind reader nor an expert on
the intricacies of how Tesco run there phone systems, I did not know
I needed to tell her! She put £20 credit on the phone, then asked if
I wanted to BUY a bundle????? What about my £17 left from the
previously purchased bundle, still unused. We argued. I understand
that if I do not use the extra ‘free’ data I get with top-up, I will
lose the extra free. That’s ok, but what about the £17 remaining I
DID PAY FOR. My view was, if I buy £20 of tinned veg, put it in my
cupboard, then at the end of the month I’ve still got £20 of
tinned veg less any I used, Tesco do not come round and take the
remaining tins out of my cupboard. So why take MY £17 of data? I
paid for it!

It
is mine! I do not want to give it back to you! Apparently, ALL
phone/data suppliers do the same. Is this supposed to make things
better knowing that EVERYONE gets ripped off? They are all thieves
and robbers, so it is ok? They are all legalised criminals, so watch
out! Soon, if you put petrol in your car and have not used it all by
the end of the month, BP or whoever will come round and syphon it
out!!!! Do not buy stamps because, if you do not use them, the post
office will steal your wallet and pinch the unused ones back! If you
go clothes shopping make sure that you wear everything very quickly
or you may find yourself naked next month because your wardrobe has
been emptied????? Just what kind of a bloody world are we now living
in? I guess that is why we are so wasteful of all the Earth’s natural
resources because, if we do not use them up in a hurry, some Martian
will come and take them back and want to charge us again for what
we’ve already paid for!!!!!

In
the end I gave up the argument. They gave me 500Mb data for free and
we parted friendly, if not friends. The staff were wonderful but the
system, and therefore the company, stinks.

Seeing
as I was out and the original purpose had been to get this anxiety
about roads out of my system, I stuck with the decision to go on the
Saturday afternoon walk that I had recently lost all faith in.

Walk
good, people mega but…… some rushed across a road when it was not
really clear to do so, and I had to be stopped from automatically
stepping out to follow. Later, I walked on a wrong path despite those
in front of me changing direction, and I had to be called back. Then
I did not recognise the path although it was the usual way? Weather
was awful and some of the group surrendered and got the bus back from
halfway. I was slow on the return trip, loitering at the back with
some I do not often talk with. But they seemed ideal as possible
‘keep an eye on me’ contacts as they will ‘see’ me better than those
at the front. As expected they were only too happy to oblige. Bob
waited in the rain for me to catch up in the end. He had telephoned
to check on my progress but I did not know the phone had even rung.

Still
problems to resolve with the smartphone. To end it all I missed my
stop while on the bus and had to walk back.

The
last couple of posts I had managed to get the word count down a
little, even though covering a whole week. This one has crept back up
again, as so much went on to worry about. Still very concerned about
changes, but more next time, hopefully with progress on PIP, a new
Dementia group, better understanding of the phone and getting ready
for, what is likely to be, an important visit to the doctor.

Thanks
a lot peeps. It’s been along slog this time so well done

Wayne
x