June
2016 At last, but where is Summer???

Tuesday
and the end of May, and Wow!! did it rain!.

More
like elephants and hippos than cats and dogs. I suppose we are just
not used to that down here in the south of England. As some of you
reading this are from such far-flung places as India, The
Philippines, Russia and Manchester, it sounds silly me moaning about
a little bit of the wet stuff. I have been in my shower and stayed
drier than I have managed to over the last couple of days, when
outside? In fact, on Wednesday I got so drenched that even having a
bath would have been drier, but more on that soon. First Tuesday.

I
called in on Dave as we were both supposed to be going on a new
Tuesday morning walk now that I am free on a Tuesday, but it did not
turn out quite as planned. Dave gave me a ‘really!, are you joking?’
look as he opened the door. It was hammering down and although
dressed for the wet, neither of us had scuba gear to wear. We were
supposed to be meeting Bob a couple of bus stops further on, but the
idea of swimming there did not appeal much. Dave asked if I had Bob’s
phone number. I checked, but no; so decided I would go and change
into heavier-duty wear (swimming trunks) and go tell Bob we would
meet up later at the library, probably after the walk. Going on a
‘health walk’ to get pneumonia was not sensible.

A
quick side story here…… last week I finally got a very much
needed ‘smart’ phone so that I can keep a check on bus times, routes,
maps, where to go, when to go, have constant access to my calendar
and get reminders. Also it can be a tracker, so others (Dave) know
where I am. While I try to learn about it, I am hanging on to my old
phone (nice and simple) to stay in touch, as I cannot yet trust
myself to understand the new one. It may be a smart phone but I am
far from a ‘smart’ phone user.

Back
to the story of Tuesday. While I was changing, again, my phone rings
with an unknown number. I answer and find it is Bob wondering where
we are? I explain that we will meet him after the walk, at the
library or, if the weather does not calm down, at the restaurant we
are due to attend with 30 of the walkers for lunch. Ah! Now I have
his number. I put it in the contacts of the old phone then try to add
it to the new phone . It argues with me, insisting that this number
and contact already exist. Somehow, without me remembering, between
getting it and today, Bob’s number had crept into the new one. Had I
earlier made the mental connection between this new device and a
phone, I may well have found his number when Dave asked. At the time
it did not even enter my mind that this new thing was a phone???

By
10:10am, about five minutes before the walk was due to leave the
library, the rain subsided. We still would have been walking in very
wet clothes had we gone, so it had been a correct decision. Left to
me alone I probably would have still gone, so thanks for being smart
Dave. My brain is mushy enough without being waterlogged as well.

We
got the two buses to the library and waited for the others to return
from their walk. Some of us then walked about a mile to the
restaurant rather than going by car. It, in part, made up for missing
the walk. During this walk, I found out that the new health walk
co-ordinator from the council was supposed to have joined us at the
library, but did not. She is now the one responsible for dealing with
the planning and management of all the twenty-five, or so, health
walks. She did not turn up due to going to the WRONG library????
whoops!!! She did turn up for the meal, so maybe it was planned and,
like us, she just wanted to avoid the walk in the rain.

The
meal was great (I love food). It was at one of those ‘as much as you
can eat’ places, doing Chinese, Japanese, English, Indian &
Italian stuff. The Italian is for evenings only so we missed that,
but I made up for it aplenty. At only £7.50 per person for two hours
worth, it is great value providing you are very hungry and like me, a
camel, that can store it up for next few days. I had two lots of
sushi, a vegetable salad, fruit salad, three rounds of Chinese and
one lot of curry. Then several different cakes, then ice-cream. To
top it off, much deserved indigestion. Yummy! My only complaint,
apart from indigestion, was failing five times to get any king
prawns. I was just not quick enough getting there. I also felt that
because there were a lot of us at two long tables, and we were all
spread out, we were prevented from socializing properly, as can be
seen in the pix.

I
prefer round tables, or long ones back-to-back, so that you are all
in a smaller area. The walk all the way home, afterwards, completed
our exercise for the day.

On
with Wednesday, and for me an even wetter day. Because of having a
meeting to attend, I did not go to the all-day Age UK COGS club and,
with the meeting being in the afternoon, I was able to, once again,
attend the morning short walk. Guess what….it rained! Dried out in
the library and was then very kindly given a lift, into the middle of
nowhere, for the afternoon meeting. The planned bus journey would
have left me with a 20-30 minute walk from bus stop to meeting place,
so not great. But then holding the meeting for dementia peeps at a
place you really need to drive to seems pretty stupid anyway. Surely
we should be more protected, not more exposed.

Memorybilia
is, I think, a Kent version of the ‘forget me not’ groups. So it’s
a group of earlyish stage dementia sufferers who work together as a
pressure group to put the word about, monitor businesses, attend
meetings, give talks etc. etc. on behalf of local dementia sufferers.
The group also has representatives from the Alzheimer’s Society,
Local Health Trust, Dementia Action Alliance, Dementia Friends and
DEEP (Dementia Engagement & Empowerment Project) to add clout. I
am very lucky to have been asked to join, and hope I will get many
chances to use my loud voice for the benefit of many. Anyway, I was
dropped off from the car in the local area, in pouring rain, with two
hours to kill before the start of the meeting. Just as I got out of
the car, my jacket zip broke and burst open. Probably punishment for
the volume of food yesterday. No amount of wrestling would fix it or
keep the jacket closed, so wet it was.

The
area is devoid of everything except a locked church, the locked hall
for later, houses, and the area crematorium!!!! Not a single shop,
pub, library, bus shelter; nothing! I tried sheltering under trees
but the rain was so hard it just powered through the leaves. So after
twenty minutes I took shelter at the crematorium which was at least
warm and dry. I then had to spend my time dodging backwards and
forwards between the two waiting rooms each time the next set of
mourners turned up. I was deeply embarrassed, but slowly drying. The
two hour meeting was really good and I massively surprised myself by
being far more vocal and forceful than I had expected, with it being
all new people at a new place. I pushed for us to send
representatives to next month’s council meeting, suggested the group
needs a web site to shout about its activities and requested an email
be sent to NICE (National Institute for Clinical Excellence) as a
thank you for their invite to put someone forward for a committee in
Manchester. This would be nice (lol) but eight times a year to
Manchester would be a huge commitment, and I have got wet enough
thanks, so we had to decline. But I wanted them thanked so that
future invites would still be forthcoming. Funny thing about the NICE
invite, remembering that they take up to ten years to decide on what
medications to make available; they wanted a decision within twelve
days????

After
the meeting the rain had stopped, so I squelched my way to a local
bus stop that I had spotted whilst paddling earlier. It was a 142 bus
stop and the timetable said the bus was due in ten minutes. Magic!. A
while later a 185 bus stopped, driver got off, had a cigarette, got
back on and called me over. He asked if I was waiting for the 142, so
I told him yes. “That’s me” he says. I walked round the front of
the bus to check again and it definitely said 185, which I told him.
“Oh! you don’t worry about things like that”, he says. So I gave
in and got on. At least it was warm and dry and did, in the end, get
me to somewhere I knew how to get home from????? Dementia friendly? I
don’t think so. Maybe a Memorybilia representative needs to go see
the bus company?

Before
the start of each council health walk, we get our individual cards
dated and initialled by the leader of that day’s walk to keep a
record of how many walks we have attended. I did this as per usual
and, as he signed, he said, ‘walked yesterday then?’. The words meant
absolutely nothing to me.

I
was not able to process what these three simple words meant. After
many seconds, I worked out it was a question about the Wednesday
morning walk, as he had obviously seen the initials from yesterday’s
leader. At the time they were just three completely separate,
unconnected words which left me waiting for the rest of the sentence.
I now know it is a life sentence with no time off for good behaviour!
It was an interesting walk, not because of the walking but because of
spending all the time with three other dementia sufferers. We had
quite a laugh discussing our many different and differing symptoms,
and the various ‘things that go bump in the day’ for each of us.

At
some time that evening Dave and I got into a discussion about my
‘drifting’ and down time, and I tried to explain/describe to him what
is going on from my viewpoint and the fears associated with it. The
conversation was probably spread over about twenty minutes with
questions and answers, so it would take pages and pages to try and
put the whole thing across here, but this is the gist of it:-

When
I am entering a ‘foggy’ zone and starting to ‘drift’, the first sign
of it to me is when the conversations get confused.

Someone
talking directly to me without other distractions around is ok, but
in a noisy environment or if many conversations are going on, even in
background, it gets mixed up. Like say three films going on. They get
cut into bits and thrown into the air. Some bits never come back
down, some bits mix with bits from other films and make no joined up
sense. Some of the pieces are damaged and are overexposed, while some
are out of focus. Some of the clips have crackly audio, others are,
seemingly, in a foreign language, and then they are either too loud
or too quiet. There is no storyline left as it has all become
disjointed with no meaning between this few seconds and the previous
few seconds. And I hear a constant background noise and distortion.
Going down into it is ok; not scary, but emotional, as I know through
previous experience that I am going to lose my connection with ‘now’,
and with it goes my memory of the occasion, which is frustrating.
When in the fog, or ‘hole’ to others, everything looks and seems
fairly normal. I just become forgetful and more extreme in my
emotions, more verbose and expressive. Usually far more vocal,
louder, over exuberant and often less socially controlled in what I
say and how I say it. To me it is like living a quick-fire set of
short scenes where each has no connection with previous or next, and
so a bit confusing. But I still think and feel as if all is ok and I
am in the ‘now’. It is not until later, maybe even days later,
that I realize I have now come ‘out’, and therefore must have
been ‘in’. And I cannot recall what has happened during that
spell of time. It is not scary as such, although it used to be. Now
it is just frustrating and makes me angry. Not at anyone else, except
perhaps me, for allowing this to happen. I feel like I should be able
to get a better grip as, after all, it is me not someone else; so why
can I not control myself?!!!!!!!

Later
that night, becoming steadily more and more frustrated by and anxious
about not successfully explaining the down times, I had my sleep
disturbed by my mind playing on it, and so used the new phone voice
app in an attempt to voice-record my views. If this works, this is
it……

[sound bite 1]

Being
tired due to very poor sleep last night, I was already a little
disconnected by the time I left for the Friday walk. Had it not been
the Friday one and had I not arranged to meet Bob on the way there, I
would probably have done my usual ‘hide’ until I felt better. On the
way there I was ‘drifting’ and enjoying the bus ride. I knew we were
approaching the stop we needed, but did nothing. My mind said, ‘ring
the bell’, but nothing moved. Even when Bob said about pushing the
button I still hardly moved, but then slowly reached out, as if from
far away, and rang the bell just in time.

I
remember none of the walk, nor afterwards, but later watched the BBC
Panorama programme about a chap named Chris, and his dementia. It was
good, and close to home. And because of being about both vascular
dementia and Alzheimer’s, including young onset, it was so very
relevant to me. My foggy state left me rather exposed, and I cried a
lot during the programme; not just for him and his family but also,
at that time, I felt very alone because of not having my family and
daughter around me. With time on my hands I got our website finished
at last, and so have more time for typing up notes and preparing
other stuff for the website, like stories and poems and the
beginnings of the life book. It is a good job I have been using the
new phone to voice-record notes, as it is paying off already and is
prompting what I forgot during this last week, even from just earlier
today.

Saturday
was another day of much needed rest, especially as I ‘forgot’ to
go on the afternoon walk. I was an hour late, so I guess fate stepped
in and created for me the opportunity to rest that I seem unable to
create for myself. As a footnote here I want to say, and mostly for
my own future reference, that I am going to add at the end of each
blog post, any changes that I notice in myself and my self-awareness.
This is so that I can track back to try and locate any major shifts,
or build-up to major shifts, in my attitudes and behaviours. This has
been brought about because of noticing some little things over the
last several weeks but not really putting them together. By doing it
here, hopefully I, or maybe even you guys with a lot more experience
of watching/seeing from the outside, can spot things.

For
a few weeks, I have had at least one day per week where my hand or
hands shake a little. It is enough to cause drinks to spill or food
to leave my grasp, or even the fork. I occasionally find it very
difficult to maintain balance whilst dressing and/or undressing, and
now have to sit during most of the process, or hold onto something
for balance. The graphs showing the daily results of my
computer/phone based brain training exercises, when I remember to do
them (smart phone helps as it reminds me to do them), now seem to
resemble mountain ranges with no consecutive day patterns.

Last
Saturday was argumentative, Wednesday verbal diarrhoea, Friday poor
attention span and Saturday overly tired, despite a seemingly long
and restful night’s sleep. Within two hours I was tired again. To try
and combat this, I spent most of my awake time flitting from one task
to another and back, without ever fully concentrating on anything.
Even watching an eight minute Teepa Snow YouTube clip about dementia,
which was informative, interesting and funny, still took three goes?

[teepa
snow youtube clip]

I
hope you will allow me just one more, and big, aside for a moment
just before I end this episode. Today I received the first set of
viewing statistics about the blog site/website. And because one of
the ideas behind all of this is to get the word about dementia and
living with it, out there, I want to share this news with you all, as
it is down to your passing of the word, that the word is spreading.

As
a dementia sufferer, I want to thank you all for the support and
encouragement you’ve given to all us sufferers, and long may it
continue. In May there were 1,400 views of the blog across 20
countries/states, with the last couple of days getting over 100 views
each day. So thank you so much for pushing it out there ever wider.
It can only be a good thing for all of us, as more and more people
get more and more awareness. And, if I am doing my bit and making any
difference at all, I am well pleased.

Thanks
for tuning in, which is more than I seem able to do at this moment.

Wayne
x