Things
that go bump in the day 35

May
2016 Week 3 part 3 Taking it all Onboard

Firstly,
before I cast off and get underway for this particular voyage of
discovery, I must just assure you that these posts will soon,
hopefully, get shorter in length and also almost back on track and up
to date. There just seems to have been so much happening lately and I
have not been up to filtering what is of interest and what may not
be, so I just cram it all in. My original idea for the blog was just
so that I could look back at who I was and what went on, and also to
hopefully let any future carer see who and what I was. Then, just
before starting to post them, I decided to limit it to only those
things that seemed to have a ‘DementiaLand’ link. So many blogs out
there just ramble on and on about the minute-by-minute trivia of a
standard day and I could not see why anyone would be interested in my
minute-by-minute boredom. The answer seemed to be to only relay those
bits of the day that could be, in my mind, associated with dementia,
but nowadays just about every waking hour seems linked to it in some
way or other. It has now reached the point where maybe I need to
filter it some more and drop some stuff out. Easier, quicker read or
the whole shooting match of what I do, what I think, and what I feel
about it?

What
do you think?

I
do worry that these posts have become too long for some of my
dementia suffering friends to read. Well they have for me, and also
it is hard work. Fun work but hard work, going back over it to edit;
sorry Dave. Someone very recently asked me if I tweet. This was funny
as tweeting only allows 140 odd characters and, as you know, I cannot
say anything in less than 10,000 characters, so tweeting would become
a very full time job!

I
hope to finally manage to catch up with myself after the next blog,
but no promises. I plan to do two posts per week if there is
something to say, ha ha; as if I could not always find lots to say.
One post covering Sunday to Wednesday and another to cover Thursday
to Saturday. If all is well, including me, the post days will then be
on the Saturday (1st
part)
and Wednesday (2nd
part).
I am behind at the moment due to so much going on, and also I lost
four days with a mental shutdown which did not help much. More on
that in this blog in a minute, if I get a memory jog to put it in!

The
blogging process requires:- doing the thing; remembering the thing
(hopefully?); writing notes about it; deciphering the notes
(difficult?); turning the notes into full text; error correction;
spell checking; grammar checking, after remembering to persuade
whatever I have typed it into that the text is English not American;
getting Dave to proofread; error correction again; finding pictures
that fit the thoughts, feelings, words; then posting. All this takes
several GOOD days and I cannot always rely on the co-operation of my
head. Sometimes the written notes are in gobbledegook; sometimes the
typing is senseless, as someone moves the keys on the keyboard every
time I hit them; and often it proves almost impossible to find a
picture that I feel ‘sums it up’. I am toying with the idea of
voice-recording when I am incapable of typing or writing notes, and
then I could do the typing from the recordings. I also thought of
cutting out the typing and just posting the audio recordings. I did a
test but hit some obstacles. One was that, just like everyone else, I
hate the sound of my own voice played back, but also my mangled voice
might sound far too distressing on some days and would be
uncomfortable to listen to. Many, or most of you, probably hear that
kind of tone plenty often enough in your own loved ones or even
yourselves as you pull your hair out. At times, I might throw random
words into the sentences, and it would be very hard to understand
what I am going on about. It is tough enough when I type them, so you
might need to listen to it several times to see where I am going. The
major hurdle though, is that unless someone else can set it going, I
would not be able to control the recorder; so that plan went out
double-quick.

Right
enough Wayne, shut up and get on with it already.

Saturday
was a day for normal; well, the morning and afternoon bit of it
anyway, so I will try and stick to my new principle of filtering, and
cut out the unnecessary rambling. The trouble with that is, being a
walker, I find all rambling very necessary; but that’s an aside. The
afternoon was a long walk with the, now returned, Saturday afternoon
walkers. It gave me the chance to catch up on their escapades at the
seaside last weekend. I will go with them next year and terrorise the
south coast myself. Bob, our afternoon leader and one of my
‘watchers’, managed to sort us out some tickets for a one-man comedy
show tonight. A brilliant evening on an old converted light vessel
LV21. (www.lv21.co.uk)

I
knew before the evening even started that I was not right, as on the
way there a feeling of drifting and not following the conversations
was kicking in.

The
last actual solid memory I can get at is at 6 o’clock Saturday
evening while Dave and I were waiting at the bus stop for Bob. I
expected him from the direction of home but he materialised from the
opposite direction, from the local micro pub, ‘Past & Present’.
This made me laugh. My next solid memory is 10am Tuesday, which I
shall get to later. Because of this ‘memory hole’ I would not be able
to tell you much, if anything, about the evening but, because I know
through ‘feelings’ that I had a really wonderful time, I am going to
cheat a bit by using stuff said by Dave, Bob and others, about my
exploits that night. It would seem that although I was, to me and
everyone else, right there in the moment, my short-term memory had
just collapsed and nothing of the events remained except a knowledge
within me that I had enjoyed it.

The
show is called ‘Forget me not – the Alzheimer’s whodunnit’ written
and performed by Rob Gee (www.robgee.co.uk).
Rob has appeared on stage with the likes of Jo Brand, Jimmy Carr,
Sarah Millican and others. It is set in a ‘challenging behaviour’
dementia ward. To get inside the lightship we had to start by going
downstairs, backwards. I thought we were leaving already.

Drinks
were served onboard; alcoholic or otherwise and free, hot sausage
rolls were forthcoming courtesy of the welcoming crew. As it is a
one-man show, I could not see/understand changes from one character
to another, and so could not follow the story much. The subtle
changes of vocal tone, facial expression and body language between
the six main characters, were lost on me as I only saw one man
talking. Also the character names never made it into my memory and
were gone in seconds, so I found it impossible to stay with the
story. But despite these drawbacks I still laughed more than anyone
else in the venue. I even laughed out loud at the serious bits when
all the others stayed quiet. I was told about these incidents at the
break and felt a bit embarrassed. At the time, I had no idea why I
had laughed or why I, subsequently, felt embarrassed about laughing.
I did the same again after the intermission but this time,
apparently, I put my hand over my mouth to try and subdue the laughs,
which made others laugh about it even more. The toilet for the boat
is a portaloo on the shore, not onboard; this must have been a real
pain for crew when the ship was on duty out at sea!!!

Rob
Gee came over to meet me during break, which I think was due to Bob
telling him about me, or at least trying to explain to him my
behaviour in the first half of the show. I made Rob laugh with some
comment after he said that he must go and get ready for the second
half. I asked him “when are we going to have the first half then?”
At that moment it was a joke about dementia and memory, but within 15
minutes I had actually forgotten that we had a first half’

As
for the laughing at the serious bits; maybe I understood the
implications of what was said better or more closely than others
because of living with this, and so I enjoyed the ride to the full.

Only
two lines from the whole evening actually stuck with me. The first
when a character said ‘sorry about your recent diagnosis of
Alzheimer’s …. oh! I do apologise, had you forgotten?’ No one else
laughed at this comment, but to me it was a brilliant observation.
The other was when a character said ‘it’s a really hard job looking
after these people, and no one really understands’. That is a comment
I bet many of you readers do really understand. I spoke with Rob
about the second comment after the show and he said he’d spent
years working in a high security mental ward where you can see
trouble building, so he felt safe. But in his years on the
challenging behaviour dementia ward, occasionally, someone would hit
him. You don’t know you are in their world until it’s too
late. I totally understand this as I sometimes have full-blown
conversations going on in my head that I think are real and happening
in real time. Then suddenly, I say something out loud, and whoever I
am talking with does not have any idea what we are talking about as
it is their first bit of the chat.

During
the week after the show, Dave went online and ordered a copy of the
book and CD of the show, so that I could catch up with what I had
missed. He’s a good lad. I am really looking forward to reading the
book when I am able to concentrate enough……!

Another
rather odd thing from that memorable but ‘forgotten’ event-filled
evening, was an encounter with a guy named Ash. All I remember is
being spoken AT by this guy who was extremely excited to meet me. He
was talking with Bob and I was called over. Dave did not come, which
was a shame as he cannot now fill in any of the gaps for me. Anyway,
this guy was almost wetting himself with excitement at the chance to
talk with me. I had no idea, neither then nor now, why he felt that
way. He had come across me Thursday at the dementia fair but I have
no recollection of it. He wanted to ask me to work with his company
as a consultant. They get paid by businesses around the country to
advise on how to be ‘dementia friendly’, and he thinks I am ‘what he
has been waiting for all his life’. Good job he had a rather nice
young lady there with him who, apparently, is soon to be his wife, or
I would have been even more worried. He offered to pay me a salary
and expenses for this but I refused to get paid for it. Expenses are
ok but I do not want to be paid for doing what is the right thing to
do. And, if I am paid he can have a say in what I say; and that is a
no-no! A cuppa and a cheese sandwich will do fine, thank you very
much. I remember none of this, only the sense of his excitement and
my concerns about it. Bob filled me in later during the week, when I
met him on the bus while travelling to yet another walk, where he
‘watches’ over me.

That
night, or early the next morning, I did an error-filled private
message to a dear friend and fellow sufferer on Talking Point. Again
I have no recollection of doing it, but when I found a reply which I
did not understand, I looked back to see what I had sent. The message
had been typed like I had used my toes, not fingers, but had also
forgotten to take my shoes off! The spellchecker lit the screen up
like Blackpool’s illuminations?

Total
rest Sunday when, it would seem, I even rested from any mental
processes, as I remember nothing. Think Monday went the same way but,
as I do not remember where Sunday went, I have no idea if Monday
ended up in the same black hole; but it went away. Although vanishing
days help because there is less to write about, the result of days
vanishing is that I lose that time to make notes or do typing, so it
just gets to be a bigger problem. I also get very frustrated trying
to find out what I may have been up to, but it seems on these really
bad occasions I just stay indoors and hide. Maybe that is why the
Department of Works and Pensions think I cope so well, because no one
gets to see the rough stuff?

Tuesday
was final CST group and friends were allowed/encouraged to come
along. So I dragged Dave to it, which helped the numbers as only five
of the group participants turned up for this last session. Maybe they
forgot it? As I said earlier; much, much earlier, this is where the
fog finally lifted and my memory kicked back in at 10 o’clock as we
entered the room. Because each of the victims … whoops! sorry,
group members, had a friend/husband/wife/carer along with them, the
numbers were ok for singing. With so many strangers in the room even
Mrs chatterbox was subdued. Please note; subdued, not quiet!

It
was an ok session but was mostly wind-up paperwork covering other
options available to us, plus evaluation forms. Most of the
suggestions I already have covered through my own research and
enquiries. One was a book which can be purchased for £30 if you want
to do CST activities yourself at home. I use my three computer-based
brain trainers every day, as well as trying to see and speak with as
many people as possible; it’s cheaper by far. Another option I had
not looked at is a kind of activity club at £48 a day which involves
mixing with others aged 18-100 and playing pool etc; not really my
scene but someone may like it. Day care centres also £48 a shot and
then the Age UK COGS clubs that I have already sorted. The evaluation
forms must have been created by some management trainee as they were
carefully worded to evade certain issues and only drew out positives.
No worries, as I am pretty sure that they know my negative views only
too well. I have been put on the waiting list for a ‘living well with
dementia’ six-week course (the course NOT invited to the dementia
fair???) where we get much more chance to talk about things.
Wonderful, I am really looking forward to that one already and WILL
enjoy it. This new group course is run by one of the Tuesday
facilitators who I got on well with; but that is my impression as she
may well feel VERY differently about that. She has close connections
with my old stomping grounds where I lived for over 50 years, so it
could be great for my reminiscing. I persuaded the wife/carer of one
other guy to bring him to one the dementia cafes I attend later this
week. Hope that happens, as it will be good to keep some contact with
them and I can try to encourage them to join some walks as well.

After
the CST ended I took Dave off with me to visit the home of a Friday
morning walker, as she wanted help getting her video camcorder to
talk to the TV. I did not really have to take Dave but, as it was
beyond my usual turf and into no-man’s-land, I was a little/lot
stressy about it. I had made a right mess of understanding the bus
map and instructions, so by the time we got off the bus we were
already half lost. Had I been on my own, that would have been the end
of that trip and I would have been on my way to the safety of home,
bus permitting. I was all for just marching off up the road but Dave
wisely went in a shop to ask for directions. That almost helped. We
were told to go up the road and turn left at the roundabout, so away
we went. The woman from the shop came chasing out after us as we had
already started marching along the wrong ‘up the road’. As we
wandered along Dave, who by now was in familiar territory, was a bit
surprised that he hadn’t remembered (?) seeing the church and
cemetery that he must have regularly passed whilst driving along this
particular route. I suppose you do not notice things when you’re
concentrating on the road. This just reminds me that not driving, due
to dementia, allows me to see so much more of life, even cemeteries.
Hot and bothered by now we finally got to the lady’s house a bit
later than planned. Knocking and button pushing prompted no reply but
we noticed a plaque on the wall warning about the Yorkie. We assumed
she had given up waiting for us and had taken the dog for a walk. I
stayed to guard the door while Dave went to look for a woman walking
a Yorkie dog – he failed!. She finally opened the door about
fifteen minutes after we got there but only because she had seen a
dark shape; me or maybe my dementia, through the door glass. She had
been out sorting the garden AND the door bell remote was not working,
so we had no chance. Not only that but she hasn’t got a dog either,
just a cat. I mentioned about the wonderful catsuit disguise her
Yorkie was wearing!

About
fifteen of us from the Friday morning walk are getting together at
her place this Friday evening to view the video of their exploits
away in Spain. I am looking forward to it greatly, but am already
very anxious about the new situation with people I do not know all
that well, apart from walking with them. This section of the Friday
crowd really are a great bunch of people but inclined to be
exuberant. It will be a riotous evening, I expect, with loads of good
food, fine company and humorous recounting of their exploits. I have
to do a lot better with my planning of the journey home late Friday,
and better leave early enough to get the last bus connections (3) as
it is a long way home. I love walking but…….

On
our way home Tuesday, Dave told me about when he used to smuggle food
into the cinema, as he was not prepared to pay the extreme prices
they charged. He spoke about taking food in from McD’s and the
supermarket which in my, by now, tired mind created an image of
smuggling food into McD’s. So I guess you can eat healthy in fast
food places! Later on, whilst in a supermarket, he suddenly mentioned
about ‘having to squeeze his lemons when he can find the time’.
Code for what, I don’t know?

Catch
ya soon

Wayne
x