The worst hotel…

Recently stayed overnight in a hotel in Manchester.  I travelled up by train with someone from West Berkshire, train was packed but we had booked a seat thank goodness!

The hotel was The Place, Portland Street.  This is how it looked on the website:

Cheap hotel you think, looks nice and bright, clean has food, what more can you ask for?

When we arrived the front door sported a big shiny wellington boot for door handles….then inside the foyer many white umbrellas are hanging from the ceiling..and then I guessed that the theme of this hotel is RAIN.  Yes, I kid you not!   Within two weeks of the hotel being bought by the IBIS chain it was refurbished.

WHAT WERE YOU THINKING?    Did some design company sit round a table and thought, I know because it rains a lot in Manchester we will make a theme of it?    Which one of the designers thought it would be a good quirky idea?   WRONG.

It is certainly quirky, also in the foyer a low ‘wall’ in front of seating is a pair of black glasses, not sunglasses but clear glass.  What is that about?

Moving down the corridor to the lift the walls are now dark teal wallpaper with a weather map on showing highs and lows.   The wallpaper in the lifts are most odd, one which I liked was again dark teal with cats and dogs all over it – get it?  Raining cats and dogs; and in case you don’t understand it the words are etched on the mirror at the back.  The 2nd lift is yellow with clouds over it, not particularly pleasant looking.

I was fairly speechless when I saw the doors to the rooms – words can’t quite describe the hideous yellow decal covered doors made to look like front doors…and no it doesn’t stop there because the inside of the door was the same, and the bathroom door.   Now I would like to ask which idiot would think this is a good idea?  Have you not heard of disabilities that incorporate visual and cognitive impairments – these doors would certainly be a nightmare of confusion for people with dementia.

With dark and drab walls, with pictures of rain it is the most depressing hotel room I have ever stayed in, in my life.  Would I recommend it or stay there again =  NO NO NO.  In fact there other regular visitors to the hotel who said the same.

Hang on, I haven’t finished – Breakfast.  What a miserable looking attempt there was.  No cooked breakfast on offer, even though they have a restaurant at night there, just continental.  No imagination, cheap products, not particularly enticing.   I am Gluten Free and Dairy Free so was there anything I could eat?  I asked if there was any GF bread to toast and got the reply that they didn’t think so.  However they managed to find me 2 slices, no dairy free spread so, sorry Vegans you aren’t catered for either.  Thin slices of processed ham, cheese, some chopped up tomatoes, cucumber and hard boiled eggs.  No point me looking at the cereal, milk, or yoghurt.  So I had a slice of ham, tomatoes and cucumber with dry GF toast.  Quite frankly that is simply not good enough.  Bed and Breakfast for a single person around £108 for one night.

IBIS you have got this so wrong…..

 

Having a voice…

I was invited by the Alzheimer’s Society to go to the Service Users Review Panel Conference in Manchester here in  England and obviously said yes please.  There were lots of groups represented in the room with both group facilitators and a few people with dementia – PWD.  For those of you who don’t know what these groups are about I shall tell you what they are and about my day.

I belong to the West Berkshire Empowerment Group.  This is a group that meet once a month to discuss and review…just about anything.  Any issues that have any sort of impact on someone living with dementia.  As part of the DEEP – Dementia Engagement Empowerment Project there are around 38 groups in England, Wales and Northern Ireland, and more in Scotland.   The groups are made up of people with dementia and a facilitator and is designed for people living with dementia to have a voice in just about anything locally, hopefully to also have an impact nationally.

First of all, I shall admit I was invited to this day – to go to a conference in Manchester and actually I had no idea what it was about or why I was invited.  I get so confused as to each of the Societies, Services, Groups, and Organisations are and whether they are affiliated to each other.    The trouble is one organisation is an umbrella for one topic, which in turn is an umbrella for various groups…and I can’t keep up with it.   So there I am going to a conference that is by the Alzheimer’s Society Organisation and had no idea it was for Service Users Review Panel groups, and then….I had no idea that the West Berkshire Empowerment Group was a Service Users Review Panel.   And, where the hell does DEEP come into it all, who is that affiliated to?  I have dementia for goodness sake I am struggling to keep up with who is who these days…

Anyway, it was a great day in which highlighted lots of work that many of the groups had done and were doing.  For instance, one group has worked with Royal Doulton in producing dementia friendly china ware which is not an insubstantial impact in dementia care.

In our group the West Berkshire Empowerment Group in the past we have given our opinion to research on books/novels specifically published for PWD.  Reviewed electronic gadgets such as key finders.  The group went to the Royal Berkshire Hospital at Reading to look at the signage and our review was passed back to the hospital for improvements.  We suggested a purple wristband for PWD so that they can be easily identified, because we know that many people like myself do not show obvious signs of difficulties, but after an anesthetic we could quite badly affected with confusion.  This has now been approved and the hospital has put this practice in place.  We also look at public transport and whether that is dementia friendly.  The groups also help the local community become dementia friendly.

This conference looked at what format worked for each of the groups, for instance some of the groups were on a 12 month basis only.  Some of that is because of funding.   The group I belong to rolls on and on and on…we have no time limit.   Our facilitator Louise Keane is particular active in ensuring that we have some great issues to discuss and review, and it became apparent to me that her  attitude towards the group is brilliant and makes our group attractive for institutions such as Reading University, and other services to approach us for our opinions.  Thanks Louise!

The opinions that were talked about were being looked at those organising all of the groups and it was quite surprising for me to hear that the lack of support for facilitators was felt by some of the new groups.  But this was a topic and a great one too to be openly discussed: could it be improved and enhanced. For me it was interesting to hear some people say they didn’t feel supported in knowing how to end a group after the 12 months, or how to deal with someone whose dementia had progressed and could no longer take part in any discussion. So it was good this conference highlighted these issues, and for me as a PWD to hear that.   I am sure that training for our facilitators will improve to enable the groups to grow and give us our voices.

It was great to hear how some of the work that the groups had done had impacted not only locally but was being looked at nationally.

It just goes to show how small groups of people with dementia can have such a powerful voice if only given the opportunity to speak.   Anyone living with dementia who wants something more than just pleasurable activities, who would like a voice then I would encourage you to join your local DEEP group.  You can find your nearest group on their website.  Come along its great to be involved and obviously you get a cup of tea!tumblr_mqmztxxppp1rzwv55o1_500

Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!

Closing a chapter…opening a door

You can’t have failed to have noticed that I have made some major changes to my website and myself.  I feel I am closing a chapter in my life.

Firstly, I have am in transition from being married to being single.  It is not appropriate for me to talk about that, only how I am redefining my life now.  Hence the name change, reverting to my maiden name.  ‘Gill Taylor Muses’  also introduced a new chapter in my life for me.

When I was given the diagnosis of ‘possible Alzheimer’s’ my life was turned inside out, upside down.  It felt like there was nothing left for me to plan for, to look forward to, that my mental demise would quickly overtake my life.  So I began making some wonderful friends across the world who also had been given dementia diagnoses.  Instead of just having support, they have inspired me, they have all worked tirelessly to show how anyone can live well with dementia, that education is needed world wide to enable everyone who has dementia can lead a better and indeed in many cases a productive life before the end stages.  They work to show people how to understand how dementia affects people, and how to communicate effectively.  I often hear people recalling their experiences of trying to talk or understand someone in the later stages of dementia who is seemingly talking nonsense and leaving everyone confused and frustrated.  I have learnt, however, how effective understanding and communication can make the experience  better for both sides.   It is simple really, all you have to do is learn about dementia and how it affects the brain, nothing technical just relating the personality of the person with dementia with their confusion.   Random sentences such as ‘I want to go home’ can simply mean “I am confused and am not sure what is happening, please reassure me”.    So a simple reassurance that a familiar person or place is around them, telling them you are they and everything is okay can help.    No need to talk about, where home is or isn’t.   That is a loose example that may not fit every situation but knowing the who the person was can help in how you talk to them.  My own mother never lost her sense of humour with her vascular dementia right up till the end.  So to bring humour into her life when we were talking was a really important way to make her feel safe and comfortable.

I digress.  I got out my diagnosis letters and re-read them.   At the time when you receive these letters all you can see is the word ALZHEIMER’S or DEMENTIA jumping out at you.   I was looking at it, and thinking about all the questions that were asked over various appointments and tests. Q: “How long have you notice problems with your memory” – this is a simple question isn’t it.  Answer:  Always.   Q: “Yes but more recently how long has it been getting worse”.  A: Well, I have noticed it more in the past couple of years.  Actually my daughter said to me “Mum, your memory is rubbish you should go and see about it”.

Why did I answer like that?    They were pushing me to give then a date, a time, but it has always  been a problem.  I remember at University, I was 40 years old and felt so excited to be given the opportunity to study but worrying that I would find it hard to remember any of the information that I had to learn.   See, that’s another thing I have always had a problem learning new information.    I studied Combine Science; Psychology which included how we learn new information, in fact my final year dissertation was titled Evaluation of Configural and Elemental Models of Associative Learning Using Visual Lexical Stimulus  – in simple terms that means looking at two theoretical models of how stimulus enables us to learn something new, using two categories of insects and their parts, and the cognitive process of learning which belonged to which.

For me it was the most challenging of studies because it was complex, however it gave me a good understanding of associative learning.    This does have a bearing on my diagnosis and my understanding of my own cognitive difficulties which makes up the reasoning behind my diagnosis.

My experience at University was such that I would have to read, and re-read the same things over and over.  Make notes and then revise those notes because I would not remember anything in them.   Lectures were a nightmare because I could not remember what was said in any detail whatsoever, my notes were a mess lacking in any cohesive form and made no sense once I had left the lecture theatre.  Short of writing down verbatim what was being said I had no chance of remembering details.  The worst part was the lack of any memory of the substance of many of my lectures.  I knew I had a real problem but never thought to ever question it with anyone.  Psychology is a long list of theoretical models by Psychologists and dates that have to be remembered in the correct order.  Arrrggghhhhh……..yes this was a nightmare for me but I would learn them by rote learning, and by making up ridiculous sentences with the initials of their first name.

I also studied History of Science, and with such a range of subjects, facts and figures I am surprised I managed to remember anything.  One thing I have always been good at is using my imagination and lateral thinking.  A learned skill from childhood when your memory is extremely poor.   During my finals, I had an exam whereby the questions arose of things that none of us had focussed on during revision and I wrote a complete essay using my understanding of the progression of science, and one paragraph I had read in a book on Alexander Von Humbolt and weather systems.

Following University I worked in IT and was fortunate enough to have a wonderful friend (thank you Darren) who would continually give me the technical instructions that somehow I could never manage to learn.  I wrote everything down, every single detail of instructions, and even then managed not to understand them.  And when I couldn’t remember something that I had been doing day in and day out, Darren would be the one who would tell me, yet again.    He did say on more than one occasion that he had already gone through a procedure with me, but thankfully always told me again.   This enabled me to be effective in the job I had.

Finally, as I was getting older, my memory problems was beginning to be more apparent.  The most apparent thing was that, not that I was forgetting, but I had no memory of events that day or previously.  Notes I had made seemed alien to me having no knowledge of writing them, and of course the information they contained I couldn’t remember.

So….was this new or was this something that has got worse as I have got older?   Who can say after 60 years of age that they have not wandered into a room and forgotten why they are there?  Or forgotten what they are talking about midway?   Or meant to do something important but managed to forget remembering after it is too late?

Back to my diagnosis.   I had a brain scan, the scan shows perfusion (reduced blood flow) in several areas of my brain.   Medial/parietal lobes, more so on the right, and an underdeveloped frontal lobe, but no perfusion there.    The underdeveloped frontal lobe is attributed to possible brain damage due to being dropped on my head as a baby (I asked = no), or repeated blows to the head throughout childhood from my mother.    I now would like to discuss with my consultant when I see whoever it is next year, my thoughts about this.  I can’t possibly have had Alzheimer’s all of my life.    It is written and was discussed during the appointment where I was given the diagnosis of possible Alzheimer’s that I do not have DEMENTIA.    ‘Not possible’, one doctor has said to me, of course you have dementia if you have Alzheimer’s disease because it is one of the dementias.  Confuses the hell out of me I can tell you!

So here I am with memory difficulties that I have had most of my life, preparing to become totally disabled through dementia, when I can no longer relate how I am to the ‘label’ of Alzheimer’s.

Is is wrong of me to say, I have always been like this and therefore know that it could be a long long time before dementia takes hold as much it will with anybody, so until then I will assume that my diagnosis is a label that cannot be proven until autopsy.

Of course I shall still be shouting loud at the ‘Empowerment Group’ for dementia meetings, because I can!   I shall be a voice that can speak for those who cannot.  I shall still be vehemently fighting for Dementia education for all, again because I can!

I am also getting involved in the Fibromyalgia Support group because that is what is affecting me the most these days with lots of pain.

Onwards and upwards, I feel it will be an exciting year of activities in local groups.