Reading Buses and Dementia friendly signs and instructions

where to catch image WEB

This is a picture from the internet of Reading (in Berkshire) bus ‘terminal’ stops.Spot the No 1 to Newbury stop….don’t see it?  nor did I when I was there yesterday.

Firstly I must say that Reading is upgrading its service into colour coded bus lines.  Each colour has a different area.  Newbury bus line is Jetblack where the buses are grey and black, some of the newer buses being grey, but no problem.

So I had a trip to the Royal Berkshire Hospital, and travelled into Reading by bus.  Because it was before 9 am I had to pay £5 single because my disabled bus pass card does not start till after 9.30am, something Newbury Council has changed to save money.    It takes a full hour on the bus so I guess that is not a bad price.   When I get to Reading I get off and then have to look for another bus to take me to the hospital.  I had done some research and thought a number 19b would be suitable……but none of the bus stops have any signs telling you what buses stop there!   As you can see on the map Station Road has about six bus stops/shelters but all without any signs.   All the time there is a steady flow of different coloured buses passing, stopping, then carrying on.   As to where they are going that  remains a total mystery to any visiting stranger to the town.

I am pain because of my fibromyalgia and I was feeling quite stressed out by now because I don’t know Reading at all having only visited the town twice before, so I walked up and down looking for signs to tell me where the hell all these buses were heading to.  Nope, nothing.

Fortunately there were some drivers standing around chatting and I asked them what to do and they pointed me to a bus which would take me where I was going.    I got on a bus, got off and then proceeded to navigate the hospital.  No it wasn’t a 19b but it was going where I wanted it to!

So I tweeted to Reading buses:

The hospital

The letter says:  Main x-ray department…..  so I follow signs up to the second floor (this is a weirdly set out hospital believe me) only to realise that it isn’t the right place.  So I look at the letter again and further down it reads ‘the Mammography department is on the the first floor’  So it is the Main X-ray department in the Radiography department!!!!      How many MAIN X-RAY DEPARTMENTS have they got for goodness sake!

~~~~~~~~~~~~~~~~~~~~~

What I want is a bullet pointed ‘letter’ that has roughly these bits of information on:

A Heading With Appointment DATE and TIME

  • Department name  e.g.  Radiography – Mammography,
    • Main X-ray of Radiography department
  • Detail of how to contact the department if need to cancel or change appointment – with Telephone number etc.
  • Instructions:  Arrive 15 mins early for whatever reason
  • Do I need to bring anything with me?  No
  • What to wear:   You will need to remove your top.
  • How long will this take:   15 mins
  • When will I get the results:   Result will be sent to your GP/consultant may be able to talk to you at the time of the appointment.
  • And whatever else is necessary for the appointment……

How to get to the hospital:   A separate piece of paper showing:

  1. bus services
  2. small immediate road map
  3. parking
  4. Bus service numbers and stops outside of hospital
  5. Map of Hospital Departments

~~~~~~~~~~~~~~~~~~~

I find it hard to wade through all the words of a letter these days.  I am only really interested in the information that I need.  I do believe that this is not just about dementia because there must be other people who struggle to read standard letters that have too many superfluous words on.   This is something I will take to my DEEP – Empowerment Group I think.

By the way, the staff in the hospital and are lovely even though every one of them had absolutely freezing cold hands!   They could do with a small hand warmer in every room.

Living in Pain and not remembering why

42b751d4c749d333b1d1a18d3a301bc7

Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.

Travelling with Dementia

My experience of holiday travel with dementia with hopefully some useful tips.

I recently had a wonderful holiday in Tobago.  I have fallen in love with the island as it is sheer paradise.  I felt there was nothing to do but relax, recover, swim, eat, relax, read books…..I read six books in a week, and exercised more than I have in months swimming several times throughout every day.

Travelling when you have dementia however early can be horrendous.  The trick is to plan well ahead.   Even with booking my ‘last minute’ holiday knowing what makes it less stressful helps the planning.  What works for me may not work for everyone but maybe I can say some things that you may not have thought about.

  1.  Getting to the Airport

I checked the coaches and the trains.   From where I live there is a train that goes from my small local station to Reading – a major station.  Then from Reading there is a train to Gatwick Airport in UK.  Gatwick Airport trains even has its own platform.  However, most of the trains that I wanted that day appeared to go to London which meant travelling across London by tube to another train station which is not good for me.  So I kept looking and found that a direct train to Gatwick Airport started at from 2pm and I booked that one.  From Reading to Gatwick Airport in one go – perfect for keeping distress down.

I need to know what platform the service goes from in advance, so that if I am on the station previously I check out the platform so that I know where it is.

2. Avoiding the stress of travelling

I worry.  I get distressed if I think I am going to be late if there is a time deadline because I have little sense of time these days, also because I know how unpredictable the train service can be with delays and breakdowns.

So, I looked for an overnight stay at an hotel at the airport.   I booked a room for my daughter and I online at the Hilton Gatwick South Terminal with a great deal.  Checked in online so that I only needed to pick the key up.  We both met up there, me being the first to pick up the keys and relaxed with a glass of wine whilst I waited for her.

Food – I knew from a previous experience that the hotel is a very short distance from the terminal so we went there for a cheaper meal that suited us fine.

In the morning we were up, showered and ready to go.

3. De-stressing at the Airport

We had pre-booked the Airport Lounge for a relatively small cost to wait for our flight after checking in our bags, which we also did online.  This makes things so much easier and quicker.  The Lounge offers a good range of breakfast, tea, coffee, drinks, newspapers, comfortable seats  which are all included in the price and is quieter.  It is definitely more relaxing that sitting in the general area with lots of people.   The bustle of people can be more stressful when you have dementia because it is overwhelming, so airport lounge is a great place to counteract that.

4.  The Flight

Choosing your airline and seat I think is important.  When you are fit and able you can tolerate a lot of things.  In the past I have flown with the cheapest Airlines and laughed at cramped conditions and poor service, but then have paid next to nothing for the flights.  Now I have dementia, I must make it an enjoyable experience from start to finish to have a good holiday experience.  One day I will not be able to travel so I want to make sure that I can make travelling pleasurable for as long as possible.

I choose a good airline.  Personally I fly with British Airways.  It is not the cheapest but has the attributes to make it better for me.  I usually pay a bit more and fly premium economy which is better than economy or standard.  With it you get more seat room, and are offered  a slightly better steward service.   This holiday I flew economy – ten and a half hours of wishing I had upgraded to have a little bit more room!  15 years ago it would have been absolutely fine but not now.   Now it is important to make things easier, less stressful and pleasurable as possible.

Walk about on a long flight.  I walk up and down and don’t care how ridiculous I look I join others in a bit of space to exercise.  I wish I had bought some flight socks, because my feet and legs started to swell on the flight home.

Drink Plenty of Fluids.   Thing is about dementia I forget to think about whether I have drunk enough liquids if I am not at home.  I usually drink copious amounts of tea and (weak) coffee throughout the day, its just automatic.  Cup empty = make another.   When I am out and about it is another matter.  I never think about eating or drinking.  I try and take a bottle of water with me when I’m out because it reminds me to drink.

So on a flight, you need to keep drinking a small cup of water every so often.  On my Tobago flight I found that the stewards did not come round constantly with glasses of water, but you could get up and ask for some whenever you wanted to, but I didn’t think to.  Finally when I was not feeling great I went back to get some water and was given a good amount and felt much better after that.  So you must remember just because someone with Dementia doesn’t ask, it is important to remember to keep drinking water during a long flight.

5.  The holiday

I have realised that it didn’t  matter if I didn’t travel to see much of the island.  Where I was was perfect for me.  It had the peace that I craved to enjoy myself.  We walked along the beach, up the coast road, to the local shop to buy water.  There’s a tale – there are some guys who are looking out for wives and we were followed by a guy with no teeth trying to tell us he was a good catch because he had a house and some land, he was also trying to tell me his age – 63, trying saying that without teeth!  Then a refuse truck came along, stopped and a young guy got out and started haranguing our follower to ‘leave the ladies alone’ and ‘stop harassing’ us.  It was very funny!

Even though there were far too many steps for my arthritis and fibromyalgia it didn’t matter, I found the route with the least steps to the beach – sorted.   Being comfortable with just watching the birds, sitting in the shade, a bit of swimming was a great holiday.

Returning home was the same.  I caught a direct train and it there was no stress.

Everything I do now I plan.  I am lucky enough to be comfortable with a computer and being online.  So I research.  I print everything out and I put it in a folder.  I print out itineraries for whatever I am doing if I am travelling so that I have one piece of paper for my handbag to check on ‘what do I do next’.

Next holiday is later this year so I shall be starting my planning a coupe of months ahead of time and start saving for it!

Christmas melt down….

It started before Christmas, the migraine.   Day after day I was waking up feeling …grim.   Not gone, I said to myself every morning and continued my day feeling like poo.   My head was hurting, my vision pretty ropey, my stomach was churning and churning and churning…I felt ill.  Day 4 and I knew this was not going to go away soon.   So plan A is to stay quiet, doing quiet relaxing things and hope the bloody thing goes away.  Nope so plan B comes into force, go out, pretend I have no migraine and be active.

It sort of works at the same time as not working.   What the hell is going on?  What is this about?  Oh, of course it’s Christmas…..

images-5

Can’t go shopping, don’t feel well enough.  The very thought of writing Christmas Cards, buying presents send me running to the bathroom to be sick.

I don’t understand this new development in my life, this non ability to cope with the stress of things.  Is this new?  I am not sure, I think I have always internalised some stress at these times but I don’t think I ever had such meltdowns.   This year I felt so ill at first I stayed in and never left my flat.  My friend and neighbour knocked my door to see if I was okay.  My pale faced self reassured her that I was just suffering with migraine and retreated.   Then my YPWD (Young Persons with Dementia) Group went out for a Christmas lunch at one of the garden centres.  They took one look at me as I got in the car and checked that I was well enough to go!  Of course I am, I said, don’t you worry I am looking forward to it.    I went I took my own food – just in case they could not provide me with gluten, dairy and potato free meals, which most aren’t able to here in the UK by the way.  It was working I was feeling slightly better, then my IBS kicked in and spent the next 20 minutes in the toilet whilst everyone else was enjoying wandering around the shop.  I emerged with even a whiter face than I had started with and must have looked dreadful because one person kindly took my bags off me to carry.  Bless me!!   Okay I admit to feeling quite poorly by then with the mother of all heads, a neck so stiff I felt it could break if I moved too quickly, and a belly that was so sore and feeling very nauseous.

When I was at my daughter’s, after travelling to London with the heaviest case in the universe (why did I buy heavy things for her?) I found myself treading on things on her floor…..I can now say it is official that my feet are no longer communicating to my brain.    I managed to step in the cats bowl….watch where you are walking…I can’t help it….Yes you can….No – I can’t!   Really I realise that I am bordering on shuffling at times, I have no idea how to negotiate narrow places, uneven pavements etc without falling over.  My balance is quite rubbish these days.  I don’t seem to know where my feet are in relation to where I am walking.  Hell I feel so ‘old’ these days, without being old.   (I must tell you that my daughter is having her own struggles right now being a year into living with CFS-Chronic Fatigue Syndrome, which is getting worse.  Similar to Fibromyalgia with the pain, but probably much more exhaustion.  It means this year she is having to come to terms with a life change at the age of 30.  So she is allowed to be grumpy at the moment).

Probably doesn’t help that I have Fibromyalgia and this is a really big part of my life because living with constant pain and times when I am exhausted doesn’t help.  My balance isn’t helped by the fact that my feet hurt, my knees scream, and my muscles don’t seem to work without the pain of ripping.

Back to Christmas.  For some reason I can’t quite fathom is now presenting me with a melt down situation.    Next year we may go away and have it all done for us.

brainfart4

 

 

HAPPY NEW YEAR TO YOU AND YOUR FAMILY, AND MAY 2017 BRING PEACE AND HARMONY TO US ALL. X

 

A trip to Parliament…

15283932_10154714307584463_2742498626617321875_n

Westminster, London.

(with London Eye in background!)

 

 

Before you start reading please remember that I do have difficulties with remembering and getting specific facts about things 100% correct… But these are my thoughts as I remember them.

 

 

It was cool inside Westminster building with great stone vaulted ceilings and carvings. My daughter and I stood looking down at our feet at the brass plaques declaring that Queen Elizabeth the Queen Mother had lain in state at that spot. Other plaques gave the names going back.  Along the sides down steps are rooms like cellars with stone arches in the walls and a broad arched window letting in light. Alice from the Alzheimer’s Society led us to the end room where tables were pushed together surrounded by chairs. I was seated at the top along side Debbie Abrahams MP the Chair of the group, who is the Labour MP for Oldham East & Saddleworth. The room filled up mainly with men, interesting that there were so few women amongst these people.

I was invited by the Alzheimer’s Society to attend a meeting in Westminster to discuss strategies for having an holistic review during the yearly dementia review with your GP.
The meeting started with Andrew Boaden, Senior Policy Officer, Alzheimer’s Society giving an overview of the inquiries findings and the recommendations to Developing a GP-led annual holistic review for people living with dementia and comorbidities.    Then I was given my 5 minutes to talk about my personal experience of living with dementia and fibromyalgia taking some questions afterwards which was good. My 5 minutes included the fact that I have never had a review because I have been told I need to make the appointments myself, which is hard for me to do because I have no sense of time scale and little memory to do so. Calendars do not work for me because I forget to look at them daily, and unless I do that ‘thing’ immediately and not ‘I need to do that today’, I always forget.

When the discussion got going I was concerned that I kept hearing the word ‘elderly’. No mention of younger people with dementia…they had seemingly forgotten my introduction where I specifically highlighted Younger People With Dementia.
Dr Martin McShane, National Clinical Director for Long Term Conditions, NHS England spoke up that looking at ‘risk’ was a more important than reviews.
I wanted to say okay, but how do you know who is at risk if you don’t have any reviews? Sadly there was a long list of hands showing to speak so that it did not give me time.
I also wanted to say about those living alone and how an holistic could benefit them.
I did talk about my co-morbidities: Fibromyalgia, IBS, and said how times when my Fibro is flaring with lack of sleep, Fibro fog can mimic the confusion of dementia. If in a review it is not taken into account my dementia could be seen as worsening with confusion, but in reality it is my Fibromyalgia, which means that my lessens when my fibro has reduced.
It was interesting listening to them talk at a higher level, because these are the people who make the changes in the health system. Not sure they were convinced yet, apart from one person Dr Andrew Green GP clinical and prescribing subcommittee Chair, British Medical Association (BMA) who described how something very similar is working extremely well in his northern practice. Funded in a different way, it sounded like it was meeting this need already giving everybody, not just those with dementia, an holistic review on a regular basis. Sadly he also spoke NHS funding cuts would mean, this service would be a casualty of it.
All of the 6 women(out of 16) brought up equally important questions and discussion, and listening around the room at everybody I could hear that everyone has their own agenda according to their expertise and involvement.
At four on the dot the meeting was over and the next group was eager to get into the room to start theirs.
I talked to Alice, I enjoyed being here, this was good, I tell her, and we talk about other things I can get involved with………Oh this is not over yet, she answers, so watch this space..!