just take it away (17/7 – 22/7)
the amazingly extreme heights of Saturday, I expected the planned
quietude of Sunday would be a let down. It was not. A text confirmed
Saturday had been real and had also been very much enjoyed by
Lorraine. After the last weekend, and the ensuing fallout, I had
needed the text confirmation, as it had all seemed too good to be
just continued to unfold and shine brighter and brighter, never mind
the glorious weather. Maybe the horrid week, and the dark place I had
been, made the simple joys of Sunday just as extreme but opposite.
Sunday morning, apart from the nice touch of the text thanking me,
was just for rest and that is exactly what, and all, that I did. Dave
and I drifted out in the afternoon, had lunch, and then aimlessly
meandered around our local heritage park soaking up carefree
atmosphere and loads of rays. We spent probably five lovely hours
watching the sky, admiring clouds and their shapes, genuinely amazed
by the colours that the sun projected through those clouds. We just
whiled away the hours talking of many things…..
shoes–and ships–and sealing-wax–Of cabbages–and kings–
had been a magical and memorable weekend but, as is happening far too
often for comfort now, it slipped away.
have almost become used to the feel of falling over the edge and down
the slope, tumbling into the pit; but that is under usual
circumstances. Going from ground level into the pit hurts quite
enough thanks. It gives cuts and bruises to the mind and soul, but I
had been up in the clouds floating around with a stupid grin on my
face like a demented teenager. My own stupid fault for thinking that
way, for allowing myself to be so easily conned by the dementia into
thinking I was just normal, just an ordinary person enjoying the
ordinary things and beauties of life. Falling so far, from so high,
from the clouds into the pit, was damaging, severely and maybe even
permanently damaging…… we will see…. step this way but mind the
edge… it is a long way down.
Tuesday; nice was the feeling I was left with in the place that any
memories should have been, but I also had a feeling that I was
suffering heat and drifting…….. I knew things were not ok.
Tuesday night, I think that probably another ‘event’ happened and I
killed another clump of brain cells. Good job I started with lots of
morning, and my usual excitement and anticipation of Cogs club had
got up before me and cleared off, leaving just an echoing void. Loud
noises seemed to be battering me from all angles and I could not face
other people on a bus journey, so I left very early and walked to
Cogs. Slowly and carefully, afraid of the roads but wisely using
every crossing, I got there early, paid and joked with Barry about
the kettle being on. He told me he was making himself a drink. For
some reason I was very put out and angry that I was not included??? A
car alarm in the car park went off and the pain assaulted my ears. I
had to very quickly go right out the back to escape the extreme
sound. One of the other members, always late but a fun person
nonetheless was, not surprisingly, late. This meant we started
fifteen minutes late. Again I was angry. Why is it that she cannot
understand we start at 10am, so leaving her home at 10am just does
not work!!! Then a new member joined us and added to my frustrations.
Not only had this added to the delay but she has just had new hearing
aids fitted and they did not seem to be working. Our lovely leader
tried to compensate by shouting, which exploded in my head. Barry
must have seen my distress and took me outside. The shouting was
stopped and the day continued, but I was just not enjoying the ride
and was now also feeling so very guilty that I had ‘blamed’ someone
with hearing difficulties, on top of dementia. How much more of an
ass could I possibly be? It was a very tough Cogs time, and my cogs
were grinding to a halt. After the club, to try and ‘snap out of it’,
I went with my Cogs club friend to the nearby park and lake. Fabulous
weather, and usually great company, failed to impress me and I really
did not enjoy it. I endured two hours, which really is so very unkind
on him, and even worse I remember nothing of the time with him. I
cannot recall why or how, but I know that I got great support on the
Talking Point forum that evening, but only because my notes say
Bob was at the bus stop on Thursday morning as we headed off to the
walk with five other PWD among the 50-strong throng. I say,
‘thankfully’ Bob was there because the bus trip was so terribly
to break from the usual flow, for a moment, here. Usually, my set of
steps towards a postable blog are;
it; making audio or brief written notes on the phone, around about
up, or rather type up, as I can no longer hold a pen correctly for
more than about 10 minutes, the first-thought notes as they come into
my head, after hearing the audio or re-reading the written notes.
these first thoughts into a more time-structured and flowing piece.
change and add to what comes out and censor, to some degree, that
which feels like it might be going too far or, in my mind, giving up
for spelling and grammar, then pass to Dave for final checking.
graphics that partially show what I am talking about.
is different! This next bit is basically how it first hit the
keyboard as it fell from my head, when I was first able to grab hold
enough to find words. This here, is what fell out when I was able to
find some degree of sense. It was, by then, very early Saturday.
bus trip, taking too long. Was only about 6 minutes of 25 minute
journey, but thought must be lost, must be wrong bus. But, no! Bob
here, so guess is ok. Moments later not ok. Where are we, what bus is
this? Not right one, get off, go home. Bob here, so ok. Lost, walk
panicky not wanting to be alone. Near the end, I ran to be with those
I know well when they split off to do a slightly different route to
those I was talking with by then. Almost as if I thought they were
going off without me, and panicked. Feel uncomfortable in crowd back
in library. Sort out another trip with Lorraine. Just hope I am
capable and not let her, or me, down. Bob escort me back, and see
funny sign on way about missed turn.
come to GP as support, as ears but also to make sure I tell it as it
is???? Not understand pc in library when go to print GP list.
Breathless guy rush in about wallet. Tell him I put it with staff.
Think he going to shake my hand off. Doctors 40 minutes (poss insert
list here/explain night walks and viewranger) explain only get bit
done and another appoint made. world collapse. Scared in pub garden,
noise, movement, shifty people doing strange things???? food not
enjoyed. Want away. Explain go park. Manic laughter when get away
from main road. Tell Dave cannot handle it. Want stop fighting. Want
just switch off, sit in chair, TV, drugged. Just stop it please
cannot cope any more. Thought I was strong but now find I am not.
Thought I was coping, but cannot cope with this.
remember absolutely nothing about the park, nor afterwards, except
assuring Dave that when I could speak about this, if I could get the
million-mile-an-hour mental helter-skelter under control, I would try
to include him in my processing. Between that moment and first thing
SATURDAY morning, I am not sure even I was included in my mental
probably did happen; just not in Wayne’s World, DementiaLand.
feels as though I am ‘still with it’ at a stage that I should not
be quite so ‘still with it’. Obviously I have nothing to base
that on as I have never been on this trip before, nor do I wish to
ever belittle or make light of what others are suffering. The picture
I get of my suffering is of an operation where I have been given the
anaesthetic, which has stopped all my ability to move or communicate,
but which has left the feelings, the understanding, the pain and the
injustice. These things are drip, by drip, by drip, killing me. Amid
all that confusion is a crystal clear, harsh, knowing reality that it
cannot and will not be stopped. And despite me knowing, I cannot do a
thing about it and must just wait for it to happen. These words are
an attempt at putting across random thousand-mile-an-hour thoughts
and feelings, jumbled, confused, pained, warped and misshapen,
biased, angry. I do not even know whether to talk of them being
thoughts or being feelings, as I cannot tell which is generating or
causing the other. To start with, I think (ha ha) that my out of
control feelings were, by using my ravaged emotions, corrupting my
thoughts and taking me to dark places. As I kind of got a grip, my
thoughts were very bad ones and therefore caused terrible feelings,
thus exploding emotions. This went rapidly round and round AND up and
down, meaning I could not get any grip on things. I am still, even
now, not able to tell if I think this or feel this, but what appears
to me to be happening is:-
various parts of my brain are being eaten away; all of the parts at
differing speeds, except the bit that deals with communication
skills. For some reason this is being got at the least, or maybe
least often. Because, as social gregarious humans, we judge the
intellect and capability of others on how well they are able to
communicate with us, this hides my disabilities to a great degree as
people think I am much more able than I am. I may no longer know what
I am talking about, but I can still talk about it so well that it is
seen as fine. I’m not, by a long, long way. My continuing
communication ability hides the fact that all the rest of life is
turning to mush.!
is not me trying to shock, or scare, or thrill. It is my desperate
attempt to spell out the thoughts and feelings rampaging through my
mind. It feels like things are moving quickly, more quickly than I
expected or was warned about, and so I have to do this now in case my
capability to word it is damaged or even removed by the next major
event. The last event, seven weeks ago, was bad enough on road
I know that many healthcare professionals read this stuff I put out
at you and, thank you, I am truly grateful and honoured that you
think it worth reading. If you can feel how honest I am trying to be
about this, please can someone do me the service of being honest in
return. Am I talking a load of crap here? Is this brain degradation
of differing areas even feasible? Could I be at one stage in one area
of the brain, yet in far worse stages in other bits? Help me please!
I am trying desperately to learn about this thing and WILL
eventually, and hopefully, be allocated the time required to sit down
with my psychiatrist and care co-ordinator and have them spell it out
for me. But I am so devastated, confused and scared at the moment,
that I need something now……. please! I have through life been to
some pretty dark mental places at times, but never before have I had
the awful experiences I was having that Thursday evening. I am
ashamed to say that it crossed my mind that I would be happy to wake
up and find I was dead! Considering what so many others go through
with this terrible condition, it is disgusting that I allowed myself
to be so weak as to think that way. I have, and have always had, a
zest, a passion, a desire for life and to live it, not just survive
it. I far too much, in the eyes of others, live life at a speed that
is destroying me anyway. But I strongly feel that I want, need, and
must take whatever risks come so that I LIVE, not just survive. I
want to live fast and hard and go out in a blaze, even if too soon,
rather than meekly creep away over years and years. But that may not
be my decision. However, for me to be thinking or feeling, or maybe
even wishing at that time, for my life to be over just to ease the
pain, was inexcusable. I am truly sorry and can only apologise now,
and say I will do anything and everything to not let that happen
did, for a few seconds, think over the idea of adding here, what
would have been, the usual, sanitised, censored, toned down version.
But I cannot persuade myself to go back there…… ever……. so we
will move on. All I will do is add here the list that I gave to the
doctor about the last 6 months, that Dave made me stick to. But we
only got through a small part and have another massive, long,
stressful meeting coming in two week’s time, after I have had some
more blood tests and x-rays done.
Notes – I had decided, after my diagnosis, that keeping on bugging
the doctor at every turn was pointless, as dementia is progressive
and incurable. So nothing can be done about its progression. However,
a little while ago, at an event that Dave and I attended, a doctor
there told me that I should keep the surgery updated on all and any
changes, or how else can they do their best for me. So here I am
ready to update, briefly, on progression over the last 6 months; some
of which may have nothing to do with the dementia at all.
and weight gain despite walking, on average, 4.5 miles every day.
attacks in crowded places, especially shops.
6 weeks, lack of road safety awareness and having to be pulled back
no memory of a previous day’s events even though I seemed fully
engaged during that day’s events.
recognising, otherwise, very familiar locations or routes.
to read more than one large paragraph and retain the contextual
meaning of it.
reaction to loud sounds and light, even sometimes needing to wear
sunglasses in half light rather than bright light.
increasingly denser and larger area in line of vision when stressed.
anxiety when under pressure, with increased headache, restlessness,
impaired vision, poor concentration, tiredness.
social filter on speech. Is this likely to expand into actions?
when anxious and on emotional rollercoaster
calf and toe cramps when first waking and stretching.
and more confused and agitated by ordinary situations like ordering a
meal when out, or varied choices to be made.
restless, even when physically tired; cannot just sit and rest.
or low tolerance level, causing me to remove myself from the
urinating, it feels like I have finished, but have not and/or need to
go again within minutes.
at night and/or extreme tiredness during the day.
days where I feel disconnected from myself, as if just watching life.
extreme moving around my flat during night, with no memory of it in
so afraid, that I am unable to get out of bed to go out.
dry, grainy eyes and occasionally seeing things at edge of vision.
in eyes far more noticeable.
to follow conversations if many people or other noise involved.
items in strange places around the home.
days where I cannot do a simple thing that I managed to do yesterday,
but then able to do again tomorrow.
of hours-on-end from memory of the day.
and upwards, people. Keep on smiling and fighting.