It is a busy and exciting week, this week. Dementia Action is all about getting communities to pledge some action towards helping people living with dementia to be inclusive in the community.
Today Monday 21st May 2018, our first day locall; Cineworld in Dalton Park, County Durham had a dementia friendly showing of The Greatest Showman. Which was a brilliant film I might add; the music was wonderful, and all the people I asked as they were leaving enjoyed it immensely. The music was memorable and definitely worth being played in any care home for their residence to enjoy!
So what changes did they have to make for a dementia friendly film showing?
Lighting: Well, they left a minimal amount of lighting on during the film. This didn’t make any difference to the quality of watching the film, in fact I didn’t really notice it, but it was comfortable if you needed to visit the toilet during the film. Also for people with dementia it meant that there was not a scary blackness around you.
Sound: The sound was lowered to an acceptable level. All too frequent the sound in a cinema can be so loud that it is quite traumatic for people with dementia, and also for people with any autistic spectrum. It was not so low you couldn’t hear what was being said, but was comfortable and loud enough for the singing to wonderfully uplifting. Music is so important to people living with dementia, they may not speak, or appear to respond but give us wonderful musical and you can reach parts that you never knew were still excited by such sounds.
Time: the film did not start until everybody was ready, seated comfortably and happy for it to start. No, this did not really take long at all, and we all waved to the guy in the box at the back running the film: and he gave his thumbs up – what a perfectly British acknowledgement that there is someone working in the back!
Being Comfortable: Being a dementia friendly showing, it was fine if anyone wanted to talk during the film, Maybe they were remembering a time when they sang or danced and wanted to talk about it to whomever they were with. It was fine for them to do so.
In the foyer some of the ladies asked for tea, not fizzy and popcorn but a nice cup of tea!
At present the floor in the foyer is a very shiny sparkly black polished granite type of flooring and there are several red florescent strip lighting overhead, which is supposed to reflect on the black…. heck I felt I was on a rolling boat as the red reflections appear to roll along as you walk. Very show biz!! but not very dementia friendly. However, they will be rolling out a red carpet along the floor, I presume for days when they are showing dementia friendly films. Who on earth are these architects with their heads in the clouds or worse…
Cineworld at Dalton Park has really tried hard to accommodate all the people living with dementia and the manager must be commended for being so accommodating. Hopefully this can be a once a month event for all people with disabilities and dementia.
I got to say a few words and was so pleased to see so many people with dementia enjoying this wonderful film.
So, this was my first day in supporting dementia friendly events in my new local community, and one which is one that is becoming more dementia friendly.
Tomorrow is another event….
Bizarrely I have developed an obsession with counting fingers and toes. I know a bit weird eh! It’s just that when I see a picture of people or animals hand or feet, they look like they have far too many digits on them! This is only when I see pictures mind you, not real hands or feet, or I don’t think so…no, I don’t usually focus on peoples hands..but I do focus on cats paws now I come to think it!
What is this about eh? I can’t just think ‘that’s a nice ordinary looking pair of feet’ , I actually have to count the toes, or fingers.
Some might say, what a load of rubbish, what has this got to do with Dementia. Answer, probably nothing, I have no idea. I do know that I have not spent my life counting fingers and toes and this is new to me, this compulsion. Why I thought to write about it was because it made me think of fiddle blankets.
It makes me wonder whether the change in the brain that makes some people with dementia more comfortable with keeping their hands busy with buttons and ribbons and the such like has any link to me needing to confirm that what I am seeing (fingers and toes) is just fooling me into thinking there are more. Okay I understand that it could be more to do with anxiety but that’s not how it feels to me. I don’t feel anxious about it, just curious about the illusion that I am seeing more than what is real.
So, I still have no idea why this has become something of a ‘thing’ for me right now but I think I might make myself a fiddle blanket for my future and maybe put some fingers and toes on it to count!!
Dementia is more complex than most people realise.
Having dementia is like being on a roller coaster, with good times, and then a blip of an overwhelming day. Mind you, life in general can be the same although with dementia it can feel just that bit more ghastly. So with an inane grin plastered across my face, (remember, smiling releases good endorphins) getting to a more positive state can be achieved adequately.
I’m getting there but thought I would share with you my thoughts so far.
My bathroom; yes it’s still empty; no I have not found help to sort it out yet; yes I am working on it. The local Alzheimer’s Society have been brilliant in that respect and are working hard to help me. I am feeling more positive because I might have finally found a company who are professional, use good quality products who can come in and start again and give me a bathroom. Yay!!! So, my overwhelming part is that I have to now find the information given me by Social Services to apply for a grant towards getting it done. Then I have to see if I can get a loan to pay it, or see if the Company does finance preferable at 0% interest. So, the beauty is that after 6 months of not being able to have a shower I am getting there. The warts are that I really need someone to talk through this process with to make sure I am doing the best thing for me now that my judgement is somewhat rubbish these days through dementia.
Note to self: for those of us living with dementia without family able to help us with decisions, it would be great to have a dementia advice line/support to chat to help us make better decisions. Who can we talk these things over with now? Someone who can ask us questions to make sure we are doing the right thing. Is this something that we can put in place locally? Actually this would work well for anyone who is vulnerable and who needs objective advice. Hmmm food for thought….
There are always positives to look forward to. When my fibromyalgia is not bad (which it is at the moment – it will abate), I have a garden which will become my relaxing escape place to be in away from the world. I am so excited thinking about the day when I can start it. Once I have my bathroom finished, I can start saving to get it fenced, and then the gardening starts. I am of course working on a 5 year plan!!! I have a beautiful coastline to walk along, pick up sea-glass, watch the birds, embrace the sea breeze.
Positive actions: sometimes just 10-15 minutes a day emptying yet another box from moving in will make me feel better, another strip of wallpaper scraped off the wall. Continuing my creative textile course, sewing the next piece of work. All these small things make my heart lighten. Not least is being involved locally in action for Dementia, making my home town dementia friendly, educating, and just being involved is such an enjoyment in itself.
So, on days when I feel alone and very overwhelmed with the things I used to be able to do without having to prepare myself, I try to look at what I love doing in my life, and what I have and what I can get excited about, and it works.
Take a deep breath, I just have to find a piece of paper I tidied away, make a simple phone call, ask some questions. Write it down so I don’t forget and can make sense of it.
Today I can do these things. Putting my pants on now.
I am in great need of cat cuddling this morning because I am falling into a black pit of despair. I cannot stop the tears leaking from my eyes so am smiling. Did you know smiling increases the ability to lift your spirits through….lets just say the effect of smiling has in the brain lifts moods. Is it working? Not really although I realise I look somewhat mad smiling through tears hold tight to my cat, who is loving it. She loves a good cuddle and her ‘motor’ is running on full right now – yes even whilst I am typing this, tucked under my arm her paws on my laptop.
This morning I am realising the enormity of my situation. No bathroom and I can’t find any practical help. The well meaning questions of have you contacted…such and such is not really helping. 15 years ago I wouldn’t be in this position, I would never have given my money over to a builder before they had at least done a good deal of work. But, having dementia means that your brain is seriously compromised. Just because I look and sound fine, well more than fine really, the hidden part of what dementia does to you is missed. Like how can you tell if someone is telling you the truth or not? How can you tell if what someone is saying is ‘joke’ and not meant to be taken seriously, how can you tell if someone is conning you or not? I can’t and it quite frankly terrifies the pants off me because you need these skills to make every day decisions.
So what I want is practical help. Someone who can do some hand-holding through what I need to do next. Someone who knows what to do and why it needs doing. People keep saying about how this organisation or that have given them practical help so I want to know ‘how did you get that help’? Here I am, no money, no bathroom and I cannot find anyone who does anything other than say you need to do this or phone this agency. Age UK don’t offer help apparently so they tell me, Citizens Advice Bureau offer advice, Alzheimer’s Society…don’t get me started on that one. So, what I need to know is WHO can give me some practical help of what to do?
Most of these charities, have now stopped giving practical help and have chosen to focus on advice. Well, advice to a single person who is trying to sort something out alone is absolutely worthless when they have dementia. What we need is someone to sit with us and ‘walk’ us through what to do, perhaps give some help on that, stage by stage. Give support, practical support. Someone to tell you “it’s okay we will sort it out”.
I hate dementia.
Going back to cuddling the cat.
Simons Cat does it best….
..Turn the fan off..and…what next?
Okay, I have been hiding a bit of a trauma from you all. I moved, you know that. I have a lovely little bungalow that needs updating. Late November I got a quote from a builder to replace my back boiler from the fireplace with a new combi boiler siting it in the attic space. Rip out my bathroom and replace it with a shower and a vanity unit across the end wall. Along with some other things to do with the radiators, flooring, skirting boards etc.. Boiler replaced. Bathroom ripped out………………………………………………………….
They start 3rd December and I returned home on the 27th to find the brick sized tiles I requested for the shower now – 6″ x 8″. The shower tray the height of 19″, no problem because they will build a step up to it.
The end wall vanity unit now – a cloak room sized sink with a small cupboard underneath and a small toilet suitable for a cloakroom.
Then: No work, nothing. I have been conned. I am left with no money and no bathroom. Before you ask, of course I knew what I should and shouldn’t have done, but I have dementia, I live on my own and still make stupid and bad judgements. The builder tells me he is going into liquidation (with my money).
I cried for a whole day and night, then stopped because it doesn’t help me solve it. I feel so alone in trying to sort this out right now but I am not downhearted because it is not the end of the world really is it? The provision for support for people with dementia here in the North East of England is quite frankly non-existant, so there is no one for me to phone and say I just need some support through this.
So, I phoned the Citizens Advise Bureau Consumer Dept and they gave me advice in what to do next. I have sent a legal letter giving them 7 working days to complete my building works (I think that this is enough in the circumstances) which they have received. Next Wednesday I have to get some money together and start the process of taking them to Small Claims Court to get my money back or try to at least.
I have just had a quote to complete the shower so that I can wash properly which is reasonable at around £500 to include parts and labour. At the moment I haven’t quite got that so will be saving in the next month or so to get it done. The rest of the bathroom work will have to wait.
Dementia: When my Doctors tell me that it doesn’t really affect me much yet I will beg to differ. I believe that my judgement is very poor now. I have been thinking about this and wonder if it is to do with being unable to read peoples faces and voices, or negotiate in my mind whether the words people say to me add up or not. How do people make a judgement on whether to trust something or someone? I guess it can be a combination of things, including experience, how they look, or sound, that is greatly diminished for me these days. But, that doesn’t mean I will make the same mistake twice!!
For now, I have turned the fan off. I will deal with it day by day without worrying too much because right now there is absolutely nothing I can do to change it.
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!