weeks of not much really (12/8 – 26/8)
had a brilliant and extremely uplifting day at the Alz.Society’s
local service office, at a place called Dairy Court, which is
situated at the entrance to Fairview Farm, Loose, just south of
Maidstone. Myself, and four others from our MemoryBilia team, were
there as guests to work with about ten wonderful people from the
Alz.Society, plus some others from the web design team creating the
future website for them. As we were allowed to take a guest as well I
had booked Dave in to come, but no one else had taken up the offer.
Maybe they knew what was in store! It was a great day and we were all
made to feel most welcome.
really buzzing about the day and what was in store, I must have been
having a bit of an odd day, as the journey there did not excite me
much. The drive was nice, incredibly slow and boring, in a very quiet
car. I commented about it being a quiet car, and a certain female
companion travelling with us, Lorraine, suggested it was because ‘you
have stopped talking’, to which Dave added his agreement. Bloody
cheek of the pair of them, as if I talk too much! I love travelling
upstairs on a double-decker bus, as you get such great views. The car
did not have that, and although I like classical music, it is not
quite what you think of as driving themes. We got there safe and
refreshed after a long sleep with my eyes open, just. I had noticed a
funeral procession rush by us as we went near the crematorium that I
had used to dry off at a few months ago.
the farm the surroundings were beautiful, but someone had forgotten
to put water in the well. I Suppose forgetting things goes with the
territory at the Alzheimer Society. The atmosphere was immediately
friendly and relaxed, but very, very hot. Even with a fan
in the room, it was not quite adequate for the number of people
there. Getting the chance to WORK all day thus feeling needed,
useful, appreciated and massively ‘having a purpose’, was thrilling,
uplifting and tiring. We were put into groups on different tables,
each with a couple of staff members for guidance. All our inputs were
very much appreciated by those gathered there. I was able to put a
face to a name of someone on TP who has been a rock for me at times.
Just that in itself would have made the day more than worthwhile, but
it had so much more. Dave, as the only ‘carer’ there
(aaarrgghhhh!!! their label, not ours), got the chance to tell some
informative stories about his perspective of our adventures, much to
the entertainment and great appreciation of those present. We, the
PWD, got the chance to relate some of our, less than great,
experiences and frustrations, all of which were received in good
spirit and a great degree of understanding. We then, having set the
scene and established that things can be difficult at times, went
about the purpose of the day. This involved finding new, exciting
technological ways in which the Alz.Society, their design company,
the internet and many other available resources, could be pulled
together to make life easier, safer, longer, less stressful and more
co-ordinated. This would create the opportunity for greater freedom
and independence. We were all asked to make a ‘Dream’ list of
things we would like to see happen regarding the challenges facing
PWD. The things on the list didn’t necessarily have to be
attainable, or even feasible, but it was a good exercise and gave
some insight into people’s hopes and expectations. The lists were
put up on wallboards and we were each given three ‘star-stickers’.
We stuck these stars on what we considered to be the three most
important items on all the lists. One of Dave’s suggestions was the
implantation of microchips into the brains of dementia patients to
control mood. But Dave said he could not advocate this because it
reminded him of something akin to The Borg in Star Trek, although
we’ve since learnt that researchers are working on brain implants,
not to control mood, but to stimulate those areas of the brain that
deal with long-term memory, thus limiting the occurrence of
short-term memory loss. One of the other items on Dave’s list read
‘ I wish I could be Wayne for a day’ ( what a mad fool he is, but
still a great friend). This particular wish attracted a lot of stars
and, although not a feasible proposition, must be the secret cry of
many PWD, ‘I wish you could be me for a day. I wish you could
experience what I’m going through’. Although there were
several people there and lots of ideas were put up for discussion,
just to send me on another ego trip, the ideas that got the most
votes and were put forward to be progressed were from Dave and
myself. I guess that with all the DementiaLand travels and the
exciting times we have with all you, our fellow travellers, we tend
to leave the boring ‘normal’ far behind.
we were there, a single fighter plane (either Spitfire or Hurricane)
flew overhead travelling south. A short time later, a Lancaster
bomber accompanied by two fighter planes (either Spitfires or
Hurricanes; possibly one of each) also flew overhead, southward. We
learnt that there was to be an airshow two days hence, at Herne Bay
on the 14th, so we assumed they must be getting ready for the big day
and would be staying at a suitable base ready for the display. An
observation about this fly past is that the males with dementia all
stopped what they were doing and came outside to watch while those
without simply did not seem to notice anything except the noise.
Maybe living in a world with the dementia, whether as PWD or carer,
we have learnt to appreciate and be excited by the simple things and
joys while others cannot find the time in the day for such
extravagance. Shame! To top it all, the food was brilliant and
abundant. Just what I like! At some points I felt as if I had been
talking far too much (about usual for me) but Dave seemed to feel
that I was a bit quiet compared to my normal self. As it turned out,
he was almost certainly right and had noticed the beginnings of a
down time that was to hit over the weekend. He is starting to get a
bit good at this game, I will have to ‘up the ante’ and learn
some new tricks!
return journey, in the same car with the same driver, made the
outward journey seem positively exciting. I put my ear phones in and
listened to Bruce Springsteen rather than silence. Not even classical
music this time, just boring stories about how the driver is going to
go and build a shed for someone. WOW! He has such an exciting life,
no wonder driving at 20 MPH is heart-stopping!!!! Dave will want this
lot taken out but, sorry mate, I was so affected by this rubbish
journey, it almost upset my day. So it is very relevant and stays!!!
LONG LIVE VASCULAR DEMENTIA!!!
Comment from Dave: I was present in the car on both the outward and
return journey. But if you ask me for my personal take on Wayne’s
description of his whole vehicular experience, then I’m afraid that
I couldn’t possibly comment. Suffice it to say that I am now going
to find a very dark corner and cringe for a while, before reading the
rest of the blog] (End of comment)
I must just jump back in here
and say although Dave has seemingly washed his hands of this sorry
state of affairs, he did not actually disagree with anything I said,
then or now ha ha!
a very good weekend but I could feel the effects and tiredness,
probably from the heavy involvement on Friday, starting to get at me.
As my tiredness grew, my distraction increased and concentration got
tougher. Conversation suffered, as I did not really want to be taxed,
thus leading to remoteness and then agitation by Sunday afternoon. By
the evening I was severely struggling to even be here, despite great
company. I was supposed to be on a special walk/bus trip near
Maidstone on the Monday, with the great bunch from the Friday walks,
to explore some very old stone rings. Dave and I have been to one of
the places before, but I’d hoped that this lot could be persuaded
to explore and find the other, more hidden ring. As I was so
distracted by Monday morning I did not go, as I felt uneasy about the
company and the trip, so best stay safe. Tuesday was better, probably
thanks to resting Monday, and did usual riverside walk. Tested my new
bus pass and all is well, at least for now, and it allowed me to get
the ticket for someone else as well, so the carer bit works. Result!
After the walk, whilst at the cafe, I tried to buy a bottle of water
but they wanted £1.20. So I told them that I only wanted one, and
they said it is for one???. I asked how much is a cup of tea then?
…. £1.00. So I said, I guess you do not make the tea with the
bottled water then, so can I have a bottle of the cup of tea water?
In the end I got glass of water and cuppa for £1.50!!!!!! Not sure
if got a deal or was robbed??? In the boiling hot afternoon, I was
able to return to my usual dementia cafe after six weeks at the
therapy group. Was so nice to be back,and found that I had been
missed. The cafe organiser is also the Alz.Society person responsible
for running our Medway elite peer support group. She has informed me
that a place is likely to be available for me now, as the only person
ahead of me on the waiting list is unlikely to take up the offer.
Several others on this group have already voiced that they want me on
the team, as we know each other from various meetings, events and
cafe get-togethers. So all looks good for that one.
know this is just a bit vain, but it is also factual. So I feel quite
justified, and also very proud, to say that the blog is now read in
63 countries and states worldwide. It may well be a reflection of the
fact that it is holiday season, and so people are jetting off all
over the globe, but they are still reading the blog whilst they are
there. Gosh! Surely you can find better things to do on holiday than
reading about what is going on at home? Thank you peeps. You make me
feel very good about myself and proud of what we are achieving here.
Spreading the word that it is still possible to have a good life even
though you have dementia. We can all still teach and learn lots along
the way. Well done to you all!!!
was OK Wednesday, as usual. But Sarah is away, so we had a
group with us. Was OK, but not quite the same. Next week is likely to
different, as Sarah is still away and the one on loan is not
available either. Got the rather disappointing news that there is no
place on the peer group.
was good. Well, for me anyway. Had lovely walk with the usual crowd
but went somewhere new. It is a wonderful wooded area full of trees.
Strange for a wooded area, I know, but they each had such individual
character. Branches at odd angles, creepers and stuff growing up,
down and around, and some truly immense patches of fungi. Brilliant!
After the walkers left, Lorraine and I spent a good amount of time,
still at the library, going through MemoryBilia minutes, Dementia
Action Alliance plans, discussions about a ‘hot potato’ conference
event, and talked about my upcoming research project examinations.
Was nice, with time well spent, which had to end as she had a dentist
appointment to attend. Not something I, as a man, want to be involved
was back to my Rochester (or is it Rochdale?) walk. They had missed
me last week, which I did not understand. Why miss me? Where had I
been then? I had to be reminded that last Friday had been the
Alz.Society meeting, which I had completely forgotten about
already??? It rained, but the walking and talking was great. It gave
me the chance to catch up with one particular guy who I have
wonderful conversations with, as we really do challenge each other
and our views of the world. Great stuff, and exactly what I come on
these walks for. During the chatting he invited me, as they always
do, to join them on their next mid-week away-trip for a couple of
days. It does, as always, clash with my Cogs group and is well
outside of my comfort zone. But, maybe I will this time and see how
was very wet and very windy, so stayed in most of the time. But had a
lovely day topped off on Sunday by going with Bob on his monthly
church group walk. He had kindly invited me along, as Sundays are
often quite hard to fill. We had a splendid time along the river
Medway; fabulous scenery, as can be seen. Then an adventure to a
really old church at Mereworth. This church has the grave of the
first ever person to be awarded the VC medal. They also do a pretty
smart cream tea, but do get rather easily confused, as do I by
unclear systems. Outside is where you pay, not order, just pay. So
you go in and order what you require. They apparently ignore the
price list on the door, as that does not list all the items that they
actually have today and, by the same token, lists certain items that
they don’t have today. I had seen fruit cake and wanted that.
They looked on the shelves and found no fruit cake. So they asked me
where was the fruit cake? On the list, I tell them. That list does
not apply, only what you can see??? Once you’ve actually hit upon
something you want, that they do have, you tell them. They give you a
chitty with the item written on it. Even if you have ordered
something that doesn’t require cooking or heating, you can’t take
it with you, now? You go outside and pay. They keep your chitty. Now
you go find some place to sit. If they find you, your tea and food is
delivered. How do they find the right customer with the right order?
If any problems arise, I am not sure how you prove what you ordered?
How you prove you paid? All worked sort of OK. They actually asked
Bob and me if we were together. We said no, just friends lol. When
our tea arrived it was in one double pot. As we were NOT together we
could have been sitting at totally separate tables, so I am not sure
how that is supposed to work? Whilst on the walk, I was told about an
away-day walk in a few weeks to Faversham Hop Festival, but was
warned it gets crowded. Did a text to the organiser to sort out a
lift to the area, and was again warned about crowds. How bad can it
be? Still sounds a fun day out and is somewhere new.
getting all the blog posts put across to audio, so that those unable
to handle reading masses of text can still join the party. It is
taking a long time doing them all because I am one of those who finds
large amounts of text a problem. Trying to read it all into a mic
takes some doing, but it is mostly a joy to be re-travelling the
journey again, laughing at my misfortune and stupidity. But not
always. As it is always noisy to the extreme in this area
I used to go fishing just beyond the end of a runway at Heathrow and
that was quiet compared to here), getting a whole recording done
without someone on the street shouting, loud engine noise, blaring
car radio, audible foul language, emergency service sirens and the
like going off, is proving difficult, as can be heard on the
recordings. Sometimes it takes more than five attempts to get one
done, and then it is me doing the swearing!!!!!
boring walk. But got a call regarding the elite peer group, as the
new guy had not turned up. Couldn’t go, as it would take too long
to get there. They will call him to see if he still wants the place,
then get back to me.
morning, a text turned up from the woman I helped get on the
riverside walk. You know, the one that I persuaded to come on walks,
then kept letting her down by not showing up. Bloody dementia
peeps!!! She texted to check that I am going on the walk this
morning. Probably a wise move from her, as I can be a bit
spontaneous. My word for ‘erratic’ lol. Walk very good and very,
very hot. Great time with some friends who I get on with very well
and trust completely. They also warned me about this hop festival
trip and told a few stories of nightmare times and rowdy drunks at
the event. With their well meaning advice taken on board as well, I
have decided it is best to miss this one. Not only do I no longer
drink (got to diet more), but I do not do crowds very well and would
want to leave, which could prove impossible. Also, even before
vascular dementia lowered my social filtering systems, I had many
run-ins with middle-aged drunks who should know better. So avoiding
what would certainly become loud verbal exchanges, if not physical
exchanges, seems sensible.
was OK. Hot, but OK. Barry tried hard, but it seemed as if everyone
was a little subdued, and the day just passed. Thursday, and the
dementia walk in Mote Park, which I love. But, again, it was just so
hot that it became unpleasant to be out in it. You guys that feel the
cold are sometimes lucky. I am between hot and boiling, even in
winter. My son and his friend had a great laugh one winter when we
were out camping and fishing in the snow. It was freezing; the lake
froze overnight. More snow fell and almost buried their tent. Mine,
however, had a clear grassy line around the outside of it where I had
given out so much heat overnight, and the snow had melted. Anyway,
what I am saying is that if it gets very cold, cold people can put
more clothes on. If it gets very hot, us hot people can only strip
down so far. But wait a minute…… I have dementia….. maybe I
could get away with stripping off and skinny-dipping in the lake?????
good thing from Thursday, is that if I can work out how to put her
cycle-rack on the car, Julia will give me a lift to Bewl Water and we
can do a 12 mile bike ride on Bank Holiday Monday. As I am no longer
really allowed to ride my bike and did not really mark the end of
riding three months ago, because I did not know it was the end, this
will be magical.
will end this episode with a funny story from our illustrious Friday
walk leader Graham. See picture which he did allow me to take.
Unusual to see him facing me because, him being the leader and taking
his role seriously, I generally only get to see him from the back.
Graham was really the reason, maybe perpetrator would be closer, for
my, long ago, misadventure at Wetherspoons in Rochdale (Rochester?)
when Dave and I left in haste having given up trying to understand
the system. Graham goes there often for their curry night and makes
the system sound easy, or so he thought, ha ha!
learnt, over a period of time, that you get your drink (what if you
want it WITH your meal???), then find a table, note the table number,
leave your drink, go to bar, queue for ANOTHER 10-15 minutes, order
your food, and if you want to use the special offer, order yet
ANOTHER drink, return to table in the hope it is still YOUR table,
drink both drinks, DO NOT DRIVE, eat food, leave, Graham has come up
with the great idea of writing his own sign, which he puts on the
table, stating that he has gone to the bar to get food… Table
reserved!! Some other customer commented about it being a good idea,
and why do the company not provide them? As with so many great plans
and ideas, the execution is not always so good! He came back to find
that his drink AND sign had gone, been cleared away by a highly
efficient, but low intellect, member of staff. Brilliant! On another
occasion he ordered his food, a chicken meal, only to find they had
ordered him a chicken burger not chicken meal. He then had to teach
the staff how to use the till so that they could correct the order,
and yet, he still goes there????
am due to be risking another trip to another Withering-spoons in a
couple of weeks, should be worth a laugh or ten!!!!!