Things
that go bump in the day 43

Is
this the very beginning of an end? (6/7- 16/7)

I
have come back to the beginning of this blog post, not just for the
usual read through to check again for errors, but to actually write a
comment. This post only just made it into the light of day? During
the time it has taken to write this blog from the notes, sooooooo
much has gone on with soooooo much of the goings on being seemingly
immense stuff from a real true DementiaLand point of view, that this
nearly got cancelled. But, because so much has happened, the effort
expended to write this one so far, cannot be re-summoned; not a
chance, so it has to stand. The next one will NOT, by a very long
way, be the standard walking through a day! If I can find the words,
find the courage, find the hidden recesses in my foggy mind, it will
be a fall down the hole, a headlong plummet into the pit AND
hopefully the excruciating but merciful climb back out again. As I
stumble along trying to write this now, all I want to do is give up,
give in, surrender forever, curl up and cry. But I also NEED, for me,
to get this done and look back through the days up to now, in the
brighter light in which I lived them, to remind me of those
blissfully happy times, so ……….

Wednesday,
as usual once per month. I did my old morning walk and enjoyed those
friendships and, what seemed like to me, the real pleasure people got
in seeing me again. The afternoon was a long bus trip out to where
MemoryBilia meet, lugging my laptop with me in the extreme heat. It
was a lovely and interesting bus journey but got a bit worrying when
the ride went past my destination, thankfully to use a roundabout and
come back. Being an hour early I had a lovely sunbathe with great
views, so much more relaxed than previous visits. No torrential rain
from last time nor the long hard climb up the hill from the first
time, so I can just enjoy the moment, and did. The meeting went very
well and my website demo was great, as I obviously expected LOL. We
voted to proceed and I will lead the team. The Alzheimer’s Soc. will
get a professional web designer involved, but on my team. I am also
being part of team pulled together to redesign the Alzheimer’s
Society website. Hope you like it when eventually done. Other big
pluses from the meeting are that I put myself forward to be an
advisor to the Alzheimer’s Society steering committee; to do the Kent
‘walking for dementia’ at Leeds Castle and perhaps be interviewed by
radio Kent about the walk, AND have been asked to join Kent Dementia
Action Alliance because they seem to like my get at ’em approach. On
top of all those great things I got a lift home by the Alzheimer’s
Society services manager, and she is certain I will get well used for
business commitments if I am up for it. You bet I am! Tired, pretty
brain dead, but buzzin’.

Thursday
walk had various guests join us including a facilitator from my
Tuesday group, and one of the other PWD from the Tuesday group, which
was really great as it shows that maybe my constant nagging about PWD
joining our walks is getting through. We also had some Dementia
Friends from a couple of boroughs away who had come to see how our
little dementia group, within the 50-strong walkers, handle things on
the walks so that they can start to set similar events up elsewhere.
Brill! Maybe I can join those as well. Sorry Dave, only joking. He is
doing his absolute utmost to try and persuade me that I should cut
down my hectic schedule, as it is visibly wearing me down. He is
failing, as I do not listen to good caring advice!! Even worse on
that point is that the guy mentioned in the blog yonks back, at the
LV21 one man comedy show, turned up. He was fascinated by the blog
and spent the hour wanting to talk more with me and experience the
‘off the wall’ viewpoints. Upshot of all that was an invite to give a
speech at a business training day for the dementia workers, at the
end of the month. Sorry again Dave, I do know you are trying, but you
are just not as ‘trying’ as I am! At first it seemed this event might
clash with my Alzheimer’s Society contact coming to see me at home
about future plans for me and my care. But the schedule for the
speech has been changed to accommodate my need to be elsewhere in the
afternoon. Silly man seems to think it is important to fit me in. We
will see. Walked out into the road again but, thankfully, Bob was
there and pulled me back. Felt distressed and angry with myself and
could not mentally settle so I went walking in a safe area just to
help calm my mind. Did over 8 miles in the day.

Slight
concern, because I always love Friday’s walk so much, is that I do
not recall Friday in any way, shape or form, but I guess nothing of
note happened?

Saturday
morning, and a note from Dave had crept under my door telling me that
he would suddenly be unable to come with me to the Saturday walk or
the planned get together after. I became immediately very anxious and
was now in two minds if I should even go. The last ‘event’ with the
Saturday walkers was the garden party that destroyed me, and Dave was
there then. This needed careful thinking about? Went and had a great,
cheap breakfast and then felt much better about life. Funny how a
full English breakfast can do that to me? I bit the bullet, figuring
Bob would be there and I could just surreptitiously stick close to
him so as not to attract attention. It worked and we went for ok
walk, but too much road, again. Lovely time after the walk with food,
wine, beer, fabulous company and great conversation for several
hours. I was very well looked after with some great strong mugs of
tea. All of this and confirmation of a Sunday walk with the East Kent
organiser, in a couple of weeks. She is going out of her way to pick
me up in the car, take me there, keep an eye on me, bring me back
safe and sound. Brill! By the time I got home Saturday evening I was
in need of a good rest ready for a long walk outing tomorrow.

Sunday……
carvery day! Some of you will have already seen A VERSION of this day
as it is my speech for the training day at the end of the month. This
is the link to that speech:-

Speech Text

I
have held back publication of this episode of the blog because I
wanted to give a quick, very quick update on the actual speech. It
went great. A video will hopefully be available to post up soon and
if not I did still get a 32 minute audio recording of the session
including question time.

Because
this is the blog and not a training resource (although it has been
suggested that maybe it should be!) this version has other stuff as
well as a modified story of the day. I have dropped all the history
and boring stuff about me and put back in some of the funny stuff and
other observations that went down.

Rather
than the usual, simple, Sunday after-dinner stroll that Dave and I
often have, we were treated, by walking friend Gill and her
chauffeur-for-the-day husband Alan, to a full-on adventure involving
a car ride, printed map, detailed instructions, a schedule with
deadline and a meal out. Alan was to drop the three of us off at Sole
Street station and join us at the end of the walk for a meal at
Higham. For me, the structure, timescales and, therefore,
complications almost tripped up a simple Sunday afternoon stroll
before I got in the car! I was not really dressed for any kind of
social situation in my army shorts, t-shirt and scuffed up walking
boots; but do I care? The weather was lovely, the map and
instructions a bit random at best, which just adds to the potential
for fun and adventure, so bring it on. Anyway, it mostly went well,
as Dave and Gill know from past experience to keep away from people
if possible, as that rattles me. In my mind if we are out for a
country walk that means no people, no roads, no traffic, and although
I try to be a bit reasonable (as if!), having people around
disturbing my peaceful countryside gets me agitated. We were
off-track the moment we got out of the car, as we were already the
other side of Sole Street station from where the map started. Why was
that a problem??? Well it took a couple of minutes before those doing
the map reading sorted it? That did not bode well for future reading
of the map! After that, all was well for a whole 15 minutes, then the
instructions started to fall down. The instructions directed us to go
slightly to the right. Now in my black or white world I wanted to
follow the instructions precisely, but there was no obvious path
there so we went straight on, the non-dementia way. Wrong! Dementia
got it almost right, as when we got to the top end of this set of
orchards we could make out the path I had wanted to crash through.
After that, the map/instructions were wrong about every third line
giving Dave a nightmare, much to my hilarity. We should have exited
the orchard and continued through St Mary Magdalene church at Cobham,
but because we never reached our planned exit we had to find an
alternative route. After a few diversions and adventures we sort of
got back on track, and several miles and nearly an hour later we
crossed the A2 and entered Shorne Country Park. We all decided it was
time for a cuppa, so we diverted again to find the park cafe. But
that then had me getting stressed by us taking a long route to get
there. My one-track mind just targeted on tea, and wandering around
enjoying scenery was lost on me. Sorry guys!

We
got going again and, as always when with Gill, we found hills, many
of them. We trudged on and on and then Gill pointed out that we had
hardly seen any wildlife. As if on call, moments later a giant Great
Dane (dog, not Danish person) lumbered, at speed, out of the
undergrowth, flashed past me before I could say a word and headed
straight at Gill like some demented gazelle. As a dog owner, Gill was
obviously carrying a scent that the Great Dane rather liked. I found
this rather amusing as well. Not so sure that Gill did at first?

We
pressed on relentlessly, seeming to hurry past beautiful long views,
an historic country church at Chalk, rush-lined streams and, for me,
an intriguing open railway track.
To Dave’s horror, and I think a
little bit of annoyance, I had to stop, on the tracks, to take a
photo!!!! I found out from the write up that we were near a Kent
canal. Now after 50 years of camping and fishing I did not know Kent
had a canal, so off we went to investigate. Several more hard-earned
but wasted miles later, we saw a beautiful lily-covered, reed-lined
drainage ditch and a dry, weed-infested concrete moat which used to
be the canal. Wonderful!, no surprise that Kent does not shout too
loud about their canal then?

Eventually
we were heading for the end. But it was all on hard, hot, unforgiving
concrete; not the kind of surface my walking boots are made for,
especially on, by now hot, tired, aching feet attached to legs that
were saying ‘enough’. Hungry, exhausted and being occasionally
showered upon, we headed to the pub having trudged 12 miles. But at
least we had enjoyed country, clean air, peace and solitude. Gill’s
husband Alan, our chauffeur for the trip, joined us and we sauntered
into….. Bedlam!

A
pub, crowded to bursting point despite it being nearly 3 o’clock in
the afternoon. Why were all these people here. They should have
cleared off by now to watch the Wimbledon final! Intense noise, manic
movement and an explosion of smells, good and bad, with the bad
probably being me! My senses caved in and I immediately felt an urge
to escape. Not leave, escape! I have, dragging Dave along, taken this
escape option before but had others, apart from Dave, involved this
time, so I tried to calm myself. Heart racing, and pulse sounding in
my ears, we joined a queue. No particular rhyme nor reason to it,
just join the queue because it is here? How typically British old
boy!

The
only sign I could see connected with food was for Monday to Saturday.
This is Sunday; no use? I want to know what to do! What is the
system? I do not want to look different or stupid! I want to be like
everyone else! I need to understand what to do! How do I do this? How
do I appear ‘normal’? How do I find out how to survive this? I looked
to Dave for help but he did not know either. Noise, people all over,
it was just out of control and taking me with it!
HHHHHEEEELLLLPPPPPPP!!!!!!!

Such
a sudden and traumatic change from the peace and tranquillity of the
previous four hours. I just did not think I could cope. I want to
leave. Alan is saying don’t get stressed; it’s alright, we’ll sort
it. Too late, I am stressed and I am not doing it deliberately. I
want to be calm, I want to understand, I want to be normal and just
enjoy it. But it’s not calm,

I
want out! Some guy comes and asks if we are eating. Yes, I tell him,
table for four. It will be half an hour he says, then gives me a
pager device with number 32 on it. Alan says it goes off when our
table is ready??? Ok fine!

The
guy asks what we want to eat?? What are you on about man, are you
totally stupid or what?? I’ve not got a table yet, never mind seen a
menu. What am I supposed to do, guess? Behind the bar, through the
heaving mass of people, I can see prices painted onto the ends of
barrels indicating special offers for desserts. Great, what about
dinner? To make it easy, and get me out of this exceedingly tight
situation, I agree to having a carvery because at least I think I
know what that means, or at least I used to when the world made sense
to me.

I
wander to a clear area of the bar, desperately needing a drink,
leaving the others in yet another queue? Yet again it seems I am
wrong. Yes, there is this other queue to the centre of the bar for
some unknown reason, but this section, my bit, is clear. For some
strange, unclear reason it is apparently wrong for me to queue here,
despite the fact that someone is here in front of me at a till,
behind this bit of the bar, seemingly available to serve me?? I go
back and join the others.

Obviously
my face and body language give away to Alan that I am very
distressed, so he again tells me that they are there to look after
me, so do not worry. Yeah, right! that’s working well so far!

Then
the same guy who gave me the pager device calls us to the bit of bar
I just left and asks if we want to order. Confused, but relieved that
we are at last going to get a drink, I order my pint and try to get
one for Dave, but they want to know, yet again, what I am eating.
Nothing yet, I just want to order a drink, pay for a drink, drink a
drink, but no!!! You order and pay for your food and then get a
drink. Odd! I thought this was a pub. But once again I guess I am
mistaken! I believe Dave could see me about to erupt so he stepped
in, ordered a carvery and a pint for each of us, paid for them, which
I had planned to do on my card, then steered me away from the bar.

Angry,
bemused even more, and trying to explain to him what I had been
trying to achieve, I scanned around the pub and found all the tables
used; not occupied, just in use with glasses and such on them. I
spotted a clear table on the far side almost out the back, signalled
Dave, and ploughed to it. Amongst all the noise and commotion, a
sense of relief and comparative safety swept over me, but I was still
deeply distressed and now very tired. Gill and Alan eventually found
and joined us. Dave left me in their care and went to the gents.

The
original guy found us again and tried to say that tables were for
eating at. Not sure about the next few seconds, what may have been
said or what happened. Maybe I growled at him, but thankfully he
decided that as we had a table we could stay. He took away my
electronic thingy and when Dave returned we went and got our food. I
expect the food was fine, I don’t remember, but for me it may as well
have been dry grass and mud for all the enjoyment I got from it. I
just wanted to go, get home, get safe. I actually felt and said to
Dave that I want my old world back, I cannot cope with this one. I
have never before felt so defeated and useless. Even though it was a
very public place I was on the verge of crying and may even have done
so, but I don’t recall.

Monday,
and the day almost went completely wrong. When I woke, my only
thoughts were fear, anxiety and dread. I really did not want to get
up, never mind go out. It took thirty minutes of discussion with
myself before I was able to face the day, and only then because I
knew how vitally important this morning’s meeting about PIP was. I
convinced myself that six months of fighting, so far, was too big a
price to let go easily. Also, many other people had worked hard to
get me this opportunity to fight back at DWP. It was tough though!

I
went to the meeting with an advisor/advocate and bored her senseless
for almost two hours. She took copious notes, and feels that when the
DWP see what we are submitting

to
the tribunal they may well be embarrassed by their incompetence and
stop their fight. If that happens and I receive the long overdue
back-payments…… the drinks are on me, one and all.

If
they continue the fight and I have to go and appear in court to fight
it, I will. But I am going to need LOTS and lots of virtual (or real)
support that day. Am terrified already. We will see? But my
self-respect will remain intact no matter what.

Tuesday
was the riverside walk and I talked with a new member who used to be
a mental health ward worker. So very interesting, and she was most
understanding of my distant and stressed state. The therapy group in
the afternoon was also very good and interesting. It gave us the
chance for lots of talk about ourselves and our past, but only half
those there had time to actually do so. That was a bit disappointing,
as I had expected to learn lots about the others. It took until
beyond. 4.30 a.m Wednesday morning for sleep to come and I was still
awake again before 8 a.m., not feeling like I wanted to go to cogs.
Not just tired but apprehensive, like a mild form of Monday. I am not
sure whether to give in or fight it, so as
always I fight it by going and seeing how the day unfolds.

Good
day, but I was disconnected and drifting badly. I was asked for a
quote about Cogs for the local newspaper, but had no choice but to
put it off till next week. Not really with it, and missed most detail
of the day and all detail of evening. An email from a care home
arrived asking if I can help with an assessment of their website and
literature, to try and help their homes and site be more dementia
friendly and accessible. Thrilled to be asked, but too tired to enjoy
the moment much. Thursday I had to ring Cogs manager to find out
about the previous day’s request regarding a quote for the local
newspaper, and what sort of quote they wanted. Got told she is on
holiday which confused me, as I felt sure I spoke with her yesterday
about it, but my mind-state is shot, so who knows. Finally got it
sorted that she went away this morning and that they need a quote
about what I think of cogs etc. Had a nice walk around Mote Park with
the east Kent/Maidstone dementia group, but it was really a bit too
short for me, so I did a bigger walk on my own. While walking and
enjoying sun and scenery (see pic), I wondered how such a beautiful
world can have an evil, like dementia, in it? At last, I seem to be
climbing out of this most recent ‘down’.

Friday
walk fine. Had a call to say all the PIP paperwork is done; just need
to sign and post. I really believe all will be well. Got confirmation
that I am booked for the talk at the business dementia training
meeting, so get prepared. It is one thing talking to peeps for free,
but these will have paid £35 to hear me, as well as other things.
Now that’s a bigger deal. I have refused any payment as I do not wish
to be controlled in any way. If any offer is made I will insist that
a donation is made to the Alzheimer’s society on my behalf.

Saturday
was an absolutely mega day with Lorraine, our county champion, my
friend and mentor and a truly wonderful person. 10 hours of sunshine,
fun, chat, learning, teaching, walking, talking, tea drinking,
sandwich eating, sitting, gazing, listening, watching, admiring,
dreaming, playing, swinging, but mostly just enjoying the wondrous
feeling of being in tremendous, pressure free, beautiful female
company, where dementia did not even seem to exist and yet was a huge
part of absolutely everything. I am kind of afraid that if I try to
put this monumental day into words, rather than just enjoying the
feelings, it will somehow minimise it; and I am not prepared to take
that chance. After we had parted and I was ‘skipping’ my way home in
the gathering cool darkness, I felt compelled to send a message to
Lorraine where I explained that although silly and childish, I felt
as I had at 17 on my way home after a first date……. elated and
hoping we can do this again sometime.

Beware,
this elation is very brief and yet another massive meltdown is
coming!

See
ya.

Wayne
x