that go bump in the Day 42
last, end of June and onto success in July. (26/6-5/7)
as I write this stuff in my off hand way about my adventures with
this buddy dementia, especially if I have just spent sometime
trawling through the pain and suffering on the threads, it seems as
if I should not be writing about fun, laughs, enjoyment, poking fun
at life and how it is seen through the eyes of dementia. I say this
because it really does worry me at times that others have such an
awful time, either suffering it themselves or by trying desperately
to care for someone that is suffering it and I often have quite an
easy ride. I hope that by writing about the funny, stupid, silly
side, I am somehow by just a little, brightening a very dull, dark
and dismal thing and giving you the odd smile. If I ever do, in any
way, upset you then please let me know and/or use your freedom of
choice and change channels.
the time I had survived Saturday afternoon it was immediately Sunday
morning, and Dave had come back from his various excursions and
adventures in the land of bowls and quizzes. So, with nothing else on
the schedule, we went for a cafe lunch then a walk onto, for me, new
turf the other side of the river Medway. As usual we managed to find
a hill to climb; only a little one compared to our past ones, but the
view from the church on top was still pretty impressive, as you can
see. I do not know anything about the submarine parked on the river
and, at this time, cannot be bothered to find out about it. We have
been informed, reliably or not, that it is Russian. However, it does
not look fit enough to be rushing anywhere!!
was good for walking, as it was overcast, but still rather hot, so we
popped into McD’s for a cuppa and Dave wanted ice cream. Rather hard
to fathom why, but for the Summer this McD’s had no ice cream? As we
walked on my eyes felt weird, tired and grainy. Even though I felt
both physically and mentally fine, my eyes were getting bad as if
worn out due to light levels or constant refocusing? Could be
hayfever I suppose but I have not suffered with that since my late
teens. I was wearing sunglasses so it should not be feeling so
bright?? After a few miles we headed towards home so that I could get
Dave his ice cream at another McD’s. Bloody kids always moaning! The
smartphone performed brilliantly throughout the journey, except it
got confused by the river. And when our trip was plotted on the
laptop BuddyBeacon system later, it showed us cross the river where
there is NO bridge. It is either a silly phone or a very, very clever
phone. Time will tell!
to CAB as planned very first thing Monday morning. Useless! May as
well have stayed in bed as it would have done me much more good. They
can help with filling in forms but cannot help me with what to say.
About as much use as a square wheel!
suggested (passed the buck) that I contact Age Concern. Decided to
give Alzheimer’s Society another attack via my ‘soon to visit me at
home’ contact. She was not in but will hopefully telephone me
tomorrow. Totally fed up, and about ready to concede defeat, I went
on the Monday walk, as I was out and about early enough. Another
mistake, again! Got fed up walking on my own so just left. I don’t
think anyone even noticed???? Well organised healthy walk….NOT!
After the weekend worries of walking out into the road, at least it
is an off road walk, so relatively safe.
morning, and as planned my home visit Alzheimer’s Society support
worker tried to phone me. I was not able to answer the phone. I
pressed it, hit it, shouted at it, swiped it, pressed buttons on the
side and managed to cut her off??? Bloody phone! I had to ring her
back. Gave her a quick explanation about PIP journey so far, and
although she is going on holiday she will do what she can and call me
back later. (if the stupid phone allows it?). Went on the riverside
walk as it is nowhere near roads, so I feel safe. But, as I was a bit
wound up, I walked quite fast and mostly on my own. I successfully
used maps on the phone to find paths and alleys to avoid roads on the
way from the riverside to my therapy group in the afternoon. Even
though concentrating and trying hard, I still managed to stop in the
road waiting for a car to pass in front of me, then suddenly realised
a car on my side of the road had thankfully stopped and was waiting
for me to get out of way???
Tuesday afternoon ‘living well with dementia’ group was once again
ace, as the characters, and they most certainly are characters, make
it a fun treat to attend. There is a great atmosphere and much
friendly banter, and although the setting is rather staid and formal,
the ‘feel’ is like a bunch of rowdy friends having a night out at the
club. I don’t think we will go into ‘what’ sort of club?? Talked
lots about symptoms, side effects, real time effects and found that I
have probably, very recently, had an ‘event’ which has sent me down a
vascular ‘step’. Thus the recent changes in my ways and capabilities.
Hey ho! During the session I missed a call-back from the Alz.
Society, but all was good and I will call the new charity support
organisation she sorted for me. She had tried Age UK as well but been
given the runaround, and they offered to send her a fact-sheet????
wonder I was having trouble! After a trying day I was tired, and
enjoyed meeting Dave and the relief of our Cafe for dinner. Then
nothing! The evening disappeared, which was no great loss.
morning on the way to the COGS session run by Age UK, who cannot help
with PIP, I made a call to the new charity. But the person whose name
I had been given was not in yet. They did call back, just before COGS
started, to say that they will get in touch with my doctor’s
surgery so that the correct agent can contact me asap within 5 days.
Slightly confused now, as not clear where the surgery comes into it.
But so long as it gets sorted, who cares?
another very good morning with sudoku, and some other stuff which I
cannot recall, all of which left me very tired. Enjoyed lunch, as I
always do, as it contained FOOD! In the afternoon, the only part I
remember was dressing in hats as if it was the Mad Hatter’s tea
party, but I do not recall why. But again, who cares? It was fun, as
you can see by the pics.
group member that I keep giving information to about the walks she
wants to go on, still did not show on the walk but, nevertheless,
took the info yet again?
am beginning to think she has dementia or something? Barry, who was
supposed to have shown up on last Thursday’s walk, had an ok excuse
and said he would try again this week. He failed again. Sarah, our
illustrious leader, also said she would come next time, but again she
didn’t. Very unreliable these non-dementia peeps! I obviously got
home, but have no notes, audio messages or memories to help me with
what went on next, until I get to Thursday morning. These gaps,
although not important, are becoming bigger and far more frequent.
much of interest to report about the Thursday walk, but the council
co-ordinator, no longer the ‘new’ co-ordinator, made a point of
coming to talk with me, so I guess she did not hold my blog comments
about her getting lost, against me. I know she saw them, as she reads
the blogs to keep a distant eye on the walks. Hi Laura! On the way
back after the walk, I had a spell where I did not recognise the road
I was on even though it is the usual way home. Had wanted to shop but
there were just far too many people in there, and that left me
feeling anxious, so I left. Fit tracker logged the journey to the
walk and from the walk, but not on the walk???? Maybe I am doing
something wrong but, as I just let it run with no required
interaction, maybe I need to replace it. Got Whatsapp message from
Lorraine to tell me I was apparently going by taxi to the next
MemoryBilia meeting. When I got home I looked on email and, yes, that
is what seems to be sorted, but I do not understand the
arrangements??? I had done an email to say I would somehow get there
by bus if the usual driver was not available, as I am anxious about
the idea of going by car with someone I do not know. I cannot explain
why, but I feel very anxious about it now and it is 6 days away. So
my answer is to find my own way, however troublesome that may be.
checked with my phone and with Dave that I have been remembering to
turn on the BuddyBeacon, and I have. Nice pattern shown all over the
map as a result of it tracking me during the last couple of days.
Even though the fit tracker app refuses to work, at least the beacon
knows how far I have been. If I get that worried I can always give my
beacon pin number out on here, and then everyone can go to the
ViewRanger website and track me!!!!!! Any volunteers want to watch
always, Friday walk was great. A bit windy but nice. Fit tracker,
again, gave up halfway through walk, so I must find an alternative
one. Any suggestions folks? Friday afternoon, and I finally got
around to my walking friend’s house and fixed the troublesome pc.
It had 17 tune-up programs all trying to work at the same time, so no
wonder it never got anything done. Was like having 17 cooks in a
household kitchen all trying to fix the same meal at the same
and I went to a local beer festival on Saturday. Big mistake!!!!
Finding the general area was OK but there was no signage, so we had
to follow the sound of music to find the hidden entrance. I say
‘sound’ of music because it was NOT music, only sounded somewhat
like music. The band were extremely loud, probably to cover the zero
quality and bad sound system. There were no outside tables left just
5 minutes after the show opened so we sat in the rather warm and
stuffy beer tent. It had been billed as 60 real ales but more than
half were ciders. When the band struck up, an absolute avalanche of
people rushed into the tent we were in, trying to shelter from the
awful din. As we sheltered from the onslaught in our tent, we
saw a girl who must have known about the ‘band’ in advance, as
she was carrying her tiny daughter who had, mercifully, been
protected with industrial ear defenders. As you can see from the
pictures almost no one stayed near to watch the band, and those
sitting close faced the opposite direction.
was immensely loud and painful to the ears. Eventually, the band’s
noise was so bad it actually hurt my ears even between numbers, so we
had to move further away and around the other side of a brick
building to try and muffle the sound. I went to organisers and
suggested that next year’s sideshow should be the public execution of
the idiot that booked this band. Sorry, I have vascular dementia and
tend to say what is on my mind. Have lived 61 years, and this is by
far the worst afternoon of my life for having expected joy turned
into abject disaster. We left hours earlier than expected. Spent the
evening getting Memorybilia site finished for the fast approaching
demo and getting music tracks for a dementia pursuit quiz game that I
am putting together for the COGS group. Here is just a little test
posting of some music memory quiz stuff. Click the Elvis and see if
you can name the TV themes that are from 3 different eras to give
everyone a chance. The pictures are just a trip down memory lane and
are not related to the music clips?
lunch and a short walk to wear it off, but we still did 4 miles. Then
back home I finished the quiz tracks. Got the plans together for the
Thursday Mote Park dementia walk I want to join, and then arranged a
Saturday trip out with Lorraine to get some more mentoring.
Well who knows about Monday? Certainly not me! It happened, but that
is about all I can recall of it. Tuesday was thankfully better.
Started with me arguing with my phone. While it was in my pocket it
read my mind. I was at a bus stop on my way to the nice riverside
walk, wondering if I had made plans to meet Bob for this walk, as he
had not shown up. Took phone out so I could text him, only to find
the smartphone had read my mind and called him already but forgotten
to let me in on this. Did a text to explain that and why I was not
wherever he was, presumably leading another walk.
a nice but very overcast morning, which really rubbed in the fact
that all afternoon, while trapped indoors for my ‘living with
dementia’ course, it was glorious sunshine outside. Aaaarrggh! I do
not, or cannot, remember any details of Tuesday, but know I enjoyed
the walk, the company and walking on grass rather than road. Also I
asked several questions in the afternoon dementia session, but have
no idea what they were, or the answers, but they must have meant
something to me at the time. One important thing stuck, and that was
I missed a vital telephone call from the voluntary healthcare
referral agency that is going to help with the PIP going to tribunal.
Got back to them, and although the first available appointment is
Monday, 3 days after final paperwork is due to be in, they feel I
have good grounds for a late appeal. We will see Monday. I am fairly
sure something happened Tuesday evening but cannot get back at it.
do recall wanting an early night because of it being a big day
tomorrow with the MemoryBilia meeting and me doing a website
presentation, And, as I will cover very soon, it was a highly
successful day in many ways.
been a good time folks and Summer appears to be here. But for now,