Life’s
Looking Good (23/7 – 12/8)

As
I made clear at the end of the rather disturbing blog 44, the
doctor’s on the Thursday evening was really the last cognitive
effort I was able to muster until throwing together the notes, on the
Saturday/Sunday, for blog 44. This means that the notes exist as
evidence that those days did arrive, happen and then depart. It would
seem that Monday, as it could and did do, just fell off the Earth.

I
have nothing to verify it happened and so cannot talk about it. There
used to be days, that I did not like, that I would refer to, as so
many others do, as ‘foggy’ days. These types of day seem to be
becoming rarer, which you would think was a good thing. But no, they
are being replaced by ‘pea soup’ days (old London phrase). The fog
does not so much lift, but becomes denser. Even less of the day is
viewable after the event and not at all during the event! Not so
good.

I
must have gone to my therapy group on the Tuesday afternoon but did
not go on the Tuesday morning walk. This was bad, as it meant I had
definitely let someone down. A new member of our group, having just
moved to the area, had been encouraged by myself to join the walks to
meet people. This had worked well for two weeks but now suddenly,
without explanation, I did not show up. In real time terms, it is now
two weeks after that event and I have still yet to see her and
explain. Maybe this Tuesday I will actually manage to go………. or
not!

By
the Tuesday evening things had pretty much turned around and life was
not just back to normal, it was much better than normal in all manner
of ways.

Over
the last couple of weeks, much of what has been going on is not, by a
long way, dementia related and, as such, will not be detailed here as
this vehicle is for dementia stuff! Apart from spending much too much
time thinking, feeling and probably behaving like some crazy
teenager, dementia has often been removed from my world of late but,
as you would expect if you have been following for any amount of
time, there has still been plenty of events, traumas, dramas,
thoughts and feelings that are dementia related and therefore do
belong here, so on we go.

At
some point in the mist of Monday and Tuesday I did go and get the GP
requested blood tests and X-rays done, but do not really recall it.
Probably spent hours and hours sitting around waiting, so being ‘out
of it’ was a great benefit. The Wednesday at COGs club was good fun,
as usual, and they even let me practise my upcoming speech on them;
fools! Although obviously a very different audience from the one I
would face on Friday, they were excellent and seemed very connected
to the story line. The many nods of agreement and sounds of approval,
followed by wonderful feedback, made me sure that I am on the right
track. That, added to the superb and uplifting support from all on
TP, had me raring to go! Feeling good, I decided to start the process
of following the doctor’s advice and track down how to get a bus
pass that will allow someone to accompany me on my journeys. The
internet supplied no clues so I telephoned the bus company and found
out that I need a pass with C+ on it. This is provided by the local
council. OK, no probs, hit the council web site and find out. No joy
as they only have new or replacement applications, not upgrades. I go
to the library council hub to try and resolve it with a person, not
just any person you understand, a council employee; you know, the
people that can help and can answer your queries. Ha ha ha! I suppose
that, due to cutbacks, the council do not employ those helpful,
knowledgable ones any more. After taking ages for me to explain the
whole story up to now, she looked on the internet and failed as
miserably as I had. She then tried the council site and again had the
same level of success as me, none. She finally resigned herself to
the fact that there is no form for this type of query. Not to be
outdone, she then typed loads of notes all about it and told me,
‘sorted!’ Excellent, job done. I can now forget all about that
one then………!!!!!! Remember those thoughts; I did!

Thursday
had nothing of note, or at least nothing I took notes about, except I
went on the twice-a-month dementia walk in Mote Park Maidstone and,
as always with Mote Park, had a lovely time. That means we hit
Friday, speech day, which I have covered previously by word and
posts, TP thread comments and audio file. You must be getting bored
with it? But before I finally consign it to the past, I will just
mention that the company involved has had several very complimentary
emails about my part in the day, and they have asked me if I would
consider further events. Well yes, bring it on! And one final ego
trip for me; a link to a video of the speech. If you watch and think
the video is juddering, do not adjust your set. It is me trying to
hold the pages still. Very clear evidence that I was a long way from
the relaxed person that I sounded like, ha ha.

SPEECH
VIDEO LINK

The
Friday afternoon was also really productive as my (not sure what to
call her)….. my Alzheimer’s Society case-worker or home visitor,
whatever she is, came and we spent a whole two hours discussing
recent, current and future concerns. She is now going to look into
all sorts of options for me then report back, before we sit down
again to discuss them and plot a course into the future. Sounds
marvellous.

A
wonderful ‘high’ on Friday was followed by an extremely positive
weekend, with time at a local park sitting by the lake, chatting and
passing the time of day, and again spending a big chunk of time
putting the world to rights whilst sitting on top of a hill with
Dave. Life really can be so beautiful given half a chance.

Monday
was a nice walk and my new bus pass turned up, already. But no, not
quite! What turned up was a duplicate of the existing one, not the
upgrade. I went to yet another council hub to sort it. This time,
despite six attempts to phone six different people in the head
office, the woman trying desperately to help me had to give up, as no
one answered the phone. Guess they do not employ those people either.
She explained that they had obviously not read all the notes that the
previous person had typed. Well worth the effort then! Guess they
also no longer employ people that can read. Must echo lots at the
council offices with no people there? The advice this time, having
confirmed that there is still no form to handle this type of query,
and typing some more notes onto the end of the existing ones, was to
get the doctor to write a letter about it and submit that to the
council and, in the meantime, forget this replacement one. Ok, I will
try that one and hope that they, the council, at least have one
person employed who opens letters!!!

On
the Tuesday, Dave came with me to the last of these therapy group
sessions and, I think, quite enjoyed it. He is so into this keeping
an eye on me bit and is such a great friend, far more than I deserve,
he signed up to try a carers course at this centre. I hope all goes
well and he does not find out that many others have an easier time
than I give him. It may not be easy trying to tie me down, but it is
always an adventure and very rarely could it be termed boring! Having
had a splendid afternoon we tried to get the bus home. BANG!!!!!!

The
world crashed back in again. I should have known things were going
too well. My bus pass had been ‘hot-listed’ by the council???
Well at least now I know they do employ someone for something! After
a bit of concern, calming, raised voice, calming, tantrum, calming
and an understanding bus driver, NOT employed by the council, we were
allowed on and able to get home. I was fuming to put it mildly. This
is a fine way to treat someone with dementia; cancel their bus pass,
in the middle of the day, when they are miles from home. Luckily, and
purely by luck, Dave was with me so we got by. In my anger I phoned
the Alzheimer’s Society to get my case-worker on it. She was away,
but the lovely lady there calmed me (kind of), and said they would
phone the council and deal with it. Dave had tried to calm me, lots,
but I was at boiling point. I wanted blood! I want to see the head of
whoever had done this to me, rolling around the council car park. A
couple of hours later we had been to eat, had a nice walk, sit, talk,
in the sun, and were finally heading home. Still very distracted and
angry I walked out into the road as we approached the crossing. Dave
tried to get me but I was in the road before he could react. I
quickly came to as I saw a car approaching, and I leapt back on the
pavement. Within seconds, as we were still approaching the crossing,
the beeping sound of the crossing started. I responded to the sound
and again headed into the road, before we reached the crossing. Dave
grabbed me this time and managed to drag me back and along to the
crossing, where he actually held on until we could cross. He too was
cross, partly at himself for not being quick enough. Since then I
have noticed he always positions himself between me and the road
whenever we are near one. I must be a nightmare for him. Sorry mate,
you do not deserve this and I am very fortunate to have you, but you
still are not allowed to be called a ‘carer’, I do not need one, do
I??????

By
the morning I had calmed down, some. Having discussed it with Dave,
we reached the conclusion that despite being told by the council hub
worker to ignore the replacement bus pass, it must now be the live
one and the old one had been cancelled. I put the new one in my
wallet and prayed it would be OK, as I had a long and important trip
today. Before the morning walk the Alzheimer’s Society called me
back, as promised, and gave me the council update. Apparently I had
reported my old one stolen; not lost, stolen! So they had to
cancelled it. Well I have now learnt another thing; they do employ
people who lie to cover their mistakes/embarrassment. The morning
walk was nice and the trip to MemoryBilia thankfully uneventful, from
the bus pass point of view. Lovely weather, great company, a fun and
informative meeting plus a major update on vascular dementia
research. A couple of days previously, Lorraine; friend, champion and
mentor, had been giving a speech at a research conference and, whilst
there, had heard it presented that the findings were extremely
positive that, for vascular dementia sufferers, VIAGRA helps. She
told me about this on the bus journey to MemoryBilia, and whilst she
reported back to the group I could not help but laugh. This got me a
fairly hefty punch on the arm! I know corporal punishment is no
longer allowed in teaching but I guess it is still used in mentoring!
Anyway, looks like I may have another thing to add on the GP list
LOL.

Which
brings us quite smoothly, for a change, to the GP follow-up visit.
Very briefly, it went OK as it confirmed the suspicions already in
place. I need the upgrade bus pass and she will knock out a letter
for me to collect in a few days. I need someone around if I am in any
way unsure about my mind state, and I must drink more liquid. I
cannot get meds to help with diet and exercise so must do more of
both!!!!????? (I only do 6 miles walking EVERY day). The ‘Donepezil’
is causing the cramps and I have some internal bruising still
existing from the now three-month-old ribs problem. Just about all
the other things were covered as OK by the blood tests or are just to
be expected as the dementia progresses, which was as I expected. The
two things I have to consider most are that I must find ways to lower
my stress levels by not getting so anxious about stuff, and must let
others around me know even more about what is going on in my head. I
have to help them find distraction techniques that will keep me
better rooted and focussed on what is important, rather than what is
playing havoc with my mind at that moment. I thought that I was
pretty good at telling about my thoughts and feelings, much more than
most people, but obviously I need to get even better. My concern is
that it will become boring and tedious for everyone and they will
start to avoid me. Whoops, see how easy it is for me to find things
to worry about!!!!!

The
website and information review that I was doing for a care home
company finally managed to get completed and, although I was quite
fierce in my appraisal of it, they took it well and I think (hope) we
parted good friends. As this opportunity came up via TP and the blog
I hope that these words, as my thanks for letting me have a go, get
noticed and accepted. It was lovely and motivating to be asked to do
such an appraisal on behalf of PWD and gave me a purpose; so thanks
loads.

I
have been approached by another research team based in London to join
a project which rather excites me. I will be doing this one, at least
to start with, but am probably going to decline any request to
undergo the lumbar puncture they might want to do. I am not going
into this blind as I have discussed it quite extensively with both
Dave and Lorraine, but I really want to do it as I will be helping
future generations with understanding.

Following
yet another good weekend, being spoilt, on the Monday I hit the
surgery to collect my bus pass letter. Problem one: no letter! I
insist they search the computer as it may have just not been printed.
Result! Yes, it is here. Problem two: no toner in the printer and no
way for receptionist to go get another from shop! I offer technical
guidance, take it out, carefully shake it around from side to side
thus moving any existing toner to the middle. Result, my letter just
gets printed. Problem three: it is obviously not signed and my doctor
is not in today! Get any doctor to sign it, as the council do not
know who my doctor is and they all write so badly the signature will
be indistinguishable anyway. Job done, and away to yet another
council hub in the local library here.

Once
again I explain the story and try to give them the letter. This time
all is well, except they want the form that goes with the letter. The
form that is not on the internet; is not on the council site; is not
at the offices; is not at hub 1, or hub 2; the form that does not
exist. ‘Yes, this one’, she says, and produces the form that does
not exist. After a bit of toing and froing, she agrees to fill in the
form for me, as I have dementia and a short fuse. I sign it and
leave, awaiting the next episode fully expecting that the form will
need to be sanctioned by someone else NOT employed at the council
offices!!!!! Well I was wrong! As I write this now, only one week
later, I am the proud owner of a new bus pass with C+ on it. Only
valid for one year, so I had better get well soon and lose this
dementia thingy; but I have the bus pass. Will test it tomorrow and
see what happens. Maybe they will only let me on the bus if I have
someone with me from now on?

Couple
of quick bits from this week……

As
stated previously, the company that I did the talk for are so pleased
by the response, that they are lining up a much bigger event at the
end of next month. Also they have been asked by a big event venue if
they can have someone assess their setup for dementia friendliness. I
am on call for both of these and, as backup, may well ask Lorraine if
she is available to help with the dementia friendliness assessment.
Dave may need to support me on the big talk, as that is likely to
involve an overnight stay!!!

A
Kent newspaper did a story on the Thursday Mote Park dementia walk
that I attend and, whilst interviewing others, got some nice (great)
stories about me helping others and being a motivation to other PWD
and carers. The upshot is that they have asked for contact details
from the organisers so that they can contact me. In the meantime the
organisers have given the paper my blog site address. So who knows, a
series in the paper?……… Wow!

The
Alzheimer’s Society have checked with me that I am OK to do the
‘Walking for Dementia’ event at Leeds Castle, as they want an
interview for Radio Kent. Another chance to mention the blog,
me-thinks.

Again,
as mentioned some time previously, I was asked for a quote for the
papers about the Age UK COGs club I attend. The photographer turned
up last Wednesday and took a few snaps of us all, and this is the
quote I gave:-

“Just
like myself, all the others at cogs, including all the staff
involved, are fighters. There is never a sense of OK or enough, there
is a drive for better, for more, and a constant belief in each other
that more can be achieved. Not just on a Wednesday; every day can be
battle, a struggle, an uphill task. But COGS being in the middle of
the week, on Wednesday, is like having an island; a pause in the
middle of a round; a chance to catch your breath; to be picked up,
dusted down, refreshed, renewed, re-energised and almost re-armed, so
that you can do battle and overcome the rest of the week; the second
half of this round. The knowing and understanding support from the
other members and the well informed staff, gives you fun, hope,
desire, courage and the confidence to continue surviving in a world
that usually seems to conspire against everything you once knew and
understood. And if that sounds like I am being OTT in how important
this ‘port in a storm’ is, then it just goes to show how little
the rest of the world actually understands what living with dementia
really feels like.

Wayne
– a person proudly living with dementia thanks to loads of
support.”

Life
seems to be very good at the moment, but it is unwise to take your
eye off the ball and assume anything. Doing what seems to be the
right things can, and often does, go wrong. Trying to help with the
sleep problems and night issues I have been going through lately, I
decided to get a new mattress. It soon became apparent that getting
the mattress I wanted was going to cost only slightly less than a
whole new set up, so I went for the works. Bed, mattress and
headboard along with delivery WITHIN six working days. If I paid them
extra they would take away the old bed, but I covered this by
contacting my landlord to see if he wanted the bed for another
property. Yes, next door would need it. I calculated when my new bed
would come, added another day, and agreed that the old one could be
collected to make room for the new one. This worked out well as I do
not have space for both, and the new tenants would have no bed that
night if it was not moved. Result all round,

but…….

Yes,
you guessed it! Foolish me had not taken into account that Sunday is
NOT one of the six working days. I did what seemed the right thing
and still gave up the bed for the new tenants next door, figuring I
do not sleep great anyway so one night in an armchair would be OK. It
was not!!!! To make matters worse, my assumption that it would
definitely be here tonight proved wrong as well. The delivery truck
had broken down on its way from Yorkshire and I had another night on
a very hard unforgiving floor. I may have started the month thinking
and feeling like a teenager, but these couple of nights proved beyond
doubt that my teenage years are very long gone. Ouch!

All
is very lovely again now though, but I am still having aches and
pains in places I did not even know I had places lol.

I
was going to end this post with a report on the Alzheimer’s Society
website day that Dave and I went to at the head office, as mentioned
in a TP post that day. But I could not give the day, or the people
involved, the credit due without many words. This post is already far
too long, so that can start the next one. Till then, be well my
friends and fellow travellers.

Wayne