June
2016 I just want to sleep, pleeezzzzzz!!!

(Thursday
June 9th – Tuesday June 14th, 2016)

Thursday’s
walk was again a good one, even though the weather had changed and
hidden the sun. At Tuesday’s dementia cafe, I had arranged with my
PCA suffering friend to go with him after this walk, to see his bikes
and discuss an outing. As is so often the case with these dementia
peeps, he had forgotten the arrangement and made others!! This gave
me plenty of time with the other PWD on this walk, and we discussed
happiness and how we feel about now having lots of time to fill with
what we want to do, rather than have to do. One of the guys has
decided I must be totally nuts, as I come across as happy and
carefree all the time, and that just cannot be. I asked why it cannot
be and he had no answer. After the library Lorraine, our champion and
my mentor, suggested giving me a lift as she was going to work, which
is at the hospital near where I live. She works there as an adviser with regard to making the hospital dementia friendly, and she is
massively proud of her ‘staff’ badge. I said how jealous I am that
she has such a wonderful purpose left in life. She told me that, with
the determination I am showing and the contacts she and MemoryBilia
are opening up for me, my time will come soon. Thrilling!! On the
journey, I asked if I could talk about this time with her, in the
blog. Lorraine agreed, but could not see why it was such a big deal.
To me, she is currently one of the elite in DementiaLand and this
kind of time with her is special and valuable, as it gives the chance
to discuss her journey and the skills she has evolved while on it. I
may well benefit from this and hold onto my independence a little
longer because of it. Also, the more coping strategies I learn the
more I can help others on the journey. To top it off we exchanged
telephone numbers, but I will try not to call her during any
parliamentary visits or important meetings.

Later,
during the afternoon, she texted me from work to suggest I get
‘whatsapp’ so that we can be more easily in touch, and also to remind
me that to avoid getting another soaking on the way to next month’s
Memorybilia meeting, I should contact the administrator and get
myself collected by car, just as they do for Lorraine. Seems a bit
OTT to me; but needs must, and the journey will give an opportunity
to discuss any tactics before the meeting.

Hunted
high and low to find my scissors during the afternoon and finally
found them in the fridge? Well it does look like a cupboard, doesn’t
it?

Went
to visit the pharmacist to get my scheduled repeat prescription and
found that my GP had added a renewal of the painkillers he prescribed
for my ribs. I must have got that re-done over the phone when trying
options to resolve the current sleep issues, but have no memory of
the call. I suppose it is good that I am still trusted enough that
something like that can be done over the phone rather than needing to
visit. Not sure that I will use them though, because if I do not feel
the discomfort I will carry on as if everything is fine and my ribs
will never get the chance to heal. I really do need them better fast
as I miss riding the bike terribly. Also, that afternoon, I received
a phone call from the mental health centre re-booking me a place on
the ‘Living well with dementia’ course. I jumped at it even though
there is a slight risk of Mrs Chatterbox being there.

Another
high, on this good day, was using all my old IT language and
negotiating skills to get Dave a new laptop. His current device is
suffering old age dementia, so we had listed a good spec for a
replacement, and found one online at PC World for £250 that fitted
the bill. I went to a local computer store and sweet-talked the poor,
and getting poorer, proprietor into selling a laptop, double the PC
World spec, for £50 less than PC World. Result! To celebrate, we
went on a long walk to try and get my mind focussed and my whole self
a little more awake.

The
walk was fantastic, but much longer than the stroll we originally
planned as we did 12 miles plus, and got lost. Dave and I had
deliberately targeted getting well away from people, roads and life
in general and mostly succeeded, as can be seen from these pictures
before and then immediately after Boxley village.

I
was sort of using the smart phone to guide us in the general
direction towards home. But when the phone and GPS signal vanished,
and I could not work out how to use the mobile data facility or the
off line maps, we had to resort to using the sun for direction. When
in dense woodland this got a little more difficult, and we got no
help from local signage, that just consisted of coloured arrows with
no information as to what they meant or where they went. As evening
kicked in and visibility decreased, the problems grew, as the 4×4 mud
bath track we were wading along decided to head in totally the wrong
direction. With no GPS and no map, we switched to an alternative but
reliable source – gut instinct; and left the path. We were soon about
as lost as you can get in England, but this was great, not scary,
surprisingly. My usual anxieties about new places and new situations
did not surface; just childlike excitement. The problems were all too
soon resolved and the big adventure ended, as we ploughed through
quite dense, but soft underfoot, undergrowth. Much of this was now
hardly visible in the gathering gloom. Suddenly we fell, almost
literally, into a field that had a path we could follow. Some
surprised looking people, we eventually stumbled across, were
mightily entertained by us being happy to see them and be there. But
we had no idea where ‘there’ was! My immense enjoyment of this whole
event has been somewhat discoloured by my lovely friend and constant
companion, dementia, taking the memories of the day away from me. But
I still retain the feelings of joy I got from the afternoon.

Since
that evening, I have now learnt how to use the off line maps and the
mobile data settings to get us access to the national travel app,
which can get us home from anywhere, safely. Boring but necessary, as
I can now just hit the compass icon to see where we are on a map.
Then, if need be, use the traveline app to ‘get me home’. The app
works out where the nearest bus stop or train station is, and what
times and connections are needed to get home. Job done! It is also so
wonderful having the phone linked to my laptop calendar and memo
system, as I now get constant reminders of where I am supposed to be
and when. It links with Google maps to show me locations visually,
and then I can use the bus app to get there. Marvellous! Although not
needed quite yet, the ViewRanger app allows anyone, to whom I give
access, to see on their phone or PC where I am at any time, so long
as I have remembered to take the phone with me. Could be useful in
the future? All I need to do now is get myself ‘smart’ enough to use
it as a phone

and
find out how to get the numbers up when I need them?? The voice
recorder app is proving invaluable as well, because without it much
of the detail I can relate back to you all, would be lost.

Having,
by now, built up a sizeable appetite, we went to Rochester with the
aim of a curry night in the Witherspoon pub. After the tranquillity
of our walk in woodland, the noisy and bustling environment of the
pub was overwhelming. Also I was extremely confused by their ordering
system of; find a table; decide on food; go to bar, not food counter;
order food; hope table still available; sit and wait. Stupid system,
and my mind was just not capable of dealing with it and all that
commotion, so we left.

Tried
to find another simple eatery but failed, and so we went for a curry
in an Indian restaurant, which was good but pricey. For some strange
reason, when I am talking about Rochester, I have got Rochdale firmly
planted in my mind and keep saying that, instead of Rochester?? I
assume that at some time I used Rochdale instead of Rochester during
a conversation and, because it was not corrected at the time, it has
now become a fact in my world. Anyway, I was so glad to escape to
home, although tired, exhausted and having a sense of confusion still
with me. Stressed again now, which angered me after such an enjoyable
walk and all that effort put into getting de-stressed. Not sure if I
will be capable of a walk in morning, as I was only able to sleep 4
hours and was again then doing typing in the early hours to try and
get stuff out of my head.

In
the end I slept until 10.30 am, so missed the Friday walk and was
obviously very upset about not going. Had a form in the post asking
me to assess a research project that I had participated in, but I did
not remember which project it had been, so had to telephone them to
get an explanation of which one it was. Still did not really remember
it, but the name ‘Alison’ struck a chord with me as someone who came
around and tested me each week for a while; so it must have been
that. Shaking so much today that I cannot write on paper, and the
form looked a right mess. But was at least filled with positives. My
typing was also pretty crazy, with mistakes every word taking a lot
of effort to correct. Tired again by 12.10 pm but hung on. We went
out to eat in Gillingham, not Maidstone or Rochester (or Rochdale),
around 5 pm and found a lovely cafe, still open, where I had a great
roast lamb dinner served at a time people eat!!! That was the last
thing I can recall until during the Saturday afternoon walk. I
remember being upset and annoyed about a last minute change of plan
to the end of the walk, but then nothing until the end. I have seen
that I took a couple of pictures during the walk but do not recall
taking them, so I must have been stressed and in mental shut-down
whilst walking. I have hazy memories of going to a charity garden
party and not the cafe I was looking forward to. It was hot, noisy
and crowded in a small fenced in garden which did my senses and
mental state no good at all. And suddenly being thrust into this new
uncomfortable situation where I did not know
the place, and where there were lots of new people, I could not grasp
what was supposed to be happening. On top of all that, the walkers
that I had come to feel ok with all sat elsewhere in their groups,
leaving me feeling isolated, anxious and unsafe even with Dave &
Bob there. I shall not allow that to happen again, and am thinking
very carefully about whether I feel safe enough to continue with the
Saturday group? As I got progressively more and more anxious, we left
quickly before anything went too wrong. ,My only other memory is of
the rain waiting and waiting until we were only 500 metres from home
and then soaking Dave and me for fun.

So
that’s all for this one folks, as Sunday and Monday turned into very
much needed rest days and Tuesday was boring shopping. I did actually
remember to take the shopping list with me!

I
will end, somewhat unusually, by having a moan. This current spell of
poor sleep seems to be going on and on. I have decided that taking
the painkillers is the only way to find out if my sleep is being
disturbed by rolling onto the painful side during the night. If I
still do not sleep I guess it is a trip to the GP, which I have
recently threatened anyway, as I need to keep him informed of
progress, or lack of. I desperately hope that the recent lapses of
memory are due to extreme tiredness rather than a worsening of the
condition, but who knows. Why is it that when I am fed up, angry,
upset, annoyed, frustrated with things, I remember it vividly? When I
have a magic time like the comedy show or this week’s wilderness
adventure, the memories get stolen. This is not fair! If things keep
going this way, the only stuff I will ever recall and write about is
the naff stuff, and who wants to read only that?????

Not
me, that’s for sure!

My
capability to find the right sort of words, to put across my thoughts
and feelings about what is going down in DementiaLand, is also being
hampered at the moment, again hopefully, not by progression, but by
tiredness. So you will just have to hang in there and put up with
what comes, for the time being. It is easier to just mumble away at
the voice recorder than it is to type creatively. But those
recordings, as you have heard, are stress-filled and uncomfortable
and not really fit for public use, so I will continue trying to type.

See
you on another adventure soon my dear friends, readers, supporters
and walking companions.

Wayne
x