December 2016 – Handbagwarrior; verbal ramblings

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…..

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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.

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

A trip to Parliament…

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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..!

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:

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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.

Inside the room. Dark grey walls, the bathroom door is the same.

This is the picture inside the clothes hanging space

The wall above the bed. The writing is the nursery rhyme “rain rain go away”

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