Tag Archives: raising awareness

Filming with the Alzheimer’s Society

I split my work hours last Wednesday to enable another lot of filming, this time for the Alzheimer’s Society themselves. I’m lucky that I can work from home so did 6-12 and then finished my hours after they’d left.

It was so funny when the lovely Rebecca (producer), Hannah (sound recordist) and Joe (Alzheimer’s volunteer and chief helper)  arrived. I don’t know why but I hadn’t expected so much equipment. Bit silly of me really as they need just as much as everyone else! In they trundled with suitcases, bags and tripods……..chaos ensued while they set everything up.

They wanted to make 3 films, one to be used for the Dementia Awareness Week in May. For both of them we had to film minus glasses – I’ve forgotten already why! But it made sense at the time. So apologies to family and friends who know me only in glasses – it might look a tad strange when you see it (who said ‘you always look strange’….!) My thinking was ‘does it matter’ – my new phrase of the moment.

For one of the films, I had to learn a script and talk straight to camera………there was a plan B in case I couldn’t get it all in one go. We were going to break it down into sections and then intersperse footage of me to cover the breaks. Luckily I wrote most of it – they’d just tweaked it to fit the circumstance better – so constant repetition over the previous 2 days was hopefully going to see me OK. We went for the first take and it felt like everyone was holding their breath as they waited to see if I got to the end. Doh! Stumbled over a couple of sentences……we did 5 takes in the end I think and I got there eventually – huge sighs of relief all round. You can see it on the Alzheimer’s Society Facebook page as it was released on Monday to celebrate Julianne Moore winning the Oscar – another magic moment for awareness.

We then took some shots of me pottering around, as you do. Finally we did a short interview for the Dementia Awareness Week. As always, it was all good fun with really delightful people.

All the media interest is coming to an end now. Today is the last planned interview, for Woman and Home magazine. It’s been interesting to see that side of things, but will be nice just to get back to normal. I much prefer just writing my blog and articles.

Remember each and every person diagnosed with dementia is unique. My story is just exactly that, my experience. I represent those living with dementia in the press and on film simply to raise awareness.

 

Meeting to promote ‘Join Dementia Research’

Last week I was fortunate enough to be asked to speak at a meeting being held in Wakefield: the National Institute of Health Research Patient, Carer and Public Involvement away day. They were developing their strategy for the year ahead.

I attended with Sarah Daniels, Dementia Research Project Manager, as a lay member of Join Dementia Research. We were there to promote the forthcoming national launch of Join Dementia Research which is taking place on Tuesday 24th February. Both of us are involved with the launch down in London on that day – more to follow next week.

We decided that I’d go first with a talk about my journey and difficulty finding research:

I have a vested interest in research being carried out in the field of dementia. Being diagnosed with a progressive, deteriorating terminal illness focuses the mind on the here and now. If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn medical enigma. I’m not naïve enough to think that if a cure were found tomorrow that it would mend those parts of my brain that are broken, but it would rid my daughters and all the generations below me of that ‘inevitability’ that a diagnosis brings.

I spoke of the post code lottery that appears to exist in whether patients are offered research at the point of diagnosis. No clinician on my journey broached the subject of research – I had to go looking for it. I knew from my attendance at the Royal College of Physicians, where I  met researchers, that they found it difficult to recruit volunteers, yet here I was having difficulty finding research – crazy.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research. Where once they would have to assess their applicability, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public sign up for themselves.I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset to state in their Lasting Power of Attorney the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish – to talk to their family about their wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

The war on cancer and the amount of funding given to cancer research has seen a revolution in treatments being available – a cancer diagnosis is no longer the death sentence is was 40 years ago. We need the same to happen in the field of dementia research and Join Dementia Research will give us the tool to be able to bring together researchers with willing volunteers.

After Sarah delivered her presentation we were met with many questions – always a good sign. It evoked dialogue and discussion and they invited us to stay for lunch – another good sign and very nice too – so it was a very worthwhile visit.

More  on the launch next week………….

My experience of the media

Over the last couple of weeks I’ve been fortunate enough to be given the opportunity to experience many meetings with the media.

I had the wonderful experience of Channel 4 invading my living room. It really was a joy, if slightly scary experience… I did comment that I was disappointed that the word ‘suffering’ was used in the heading to the clip on the web, however, the presenter Victoria Macdonald, has redeemed herself and I had a text from her last week apologising and saying she has now got it changed – I imagine that those that write the article are often not the ones to put together the words on the web.

Jim from the BBC came to pick up his video camera last Thursday. He was a joy to work with and is involved in so many different projects. He was interesting to talk to and interested in what I had to say. His interpretation of our story is due to be screen early April, but the date is still to be confirmed.

Tom from the Guardian also did a good job miraculously reducing all the words me, Keith and Hilary had provided to fit the 2 page article he wrote on Still Alice – find it here:

http://www.theguardian.com/film/2015/feb/10/still-alice-alzheimers-accurate-dementia-sufferers-verdict

I said yes to all these because I thought they would write as I would write and accurately interpret the thoughts I wished to reveal. I have to put so much work into preparing for an interview to try to make sure all the right words are in my head – or at least some of them. The woolliness of thoughts is such a nuisance but that’s how I experience life on a daily basis. The challenge of preparing for interviews has certainly worked my sluggish brain so I see that as a bonus.
However, I also said no to quite a few. I wanted to get my voice out to as many people as possible but not at the expense of devaluing what I had to say. So I said ‘no’ to those which just didn’t feel right. I made the fatal mistake of saying yes, and then no to one tabloid. I naively thought saying no would be the end of it. I didn’t expect to continue to receive calls and email asking me to change my mind. Lesson learnt.

What all these ventures have produced are dialogue and that is exactly what I wanted. The comments, as always, to any article were very mixed. What a sad world the place would be if we all agreed with one another. With regards to Still Alice, those that criticised the film for concentrating on Alzheimer’s have missed the point I believe. The movie makers could have made 1001 different films and for each there would have been some who dismissed it as unreal or sentimental. What I see in the film, is a watchable, realistic portrayal of one persons experience. It is there to raise awareness and start conversations. It couldn’t possibly portray everyone’s experience of dementia as each is as different as the individual themselves.

Simply go and watch the film for what it is – a Hollywood interpretation of a brilliant novel of one person’s journey through dementia – simple as that. It’s due for general release on March 6th.

I’m just one of the many voices of dementia of the moment. None of this is done for personal gain,  apart from giving me the personal satisfaction of having my views heard.  As I’ve said before, my shelf life is short so I’m trying to make the most of it and raise awareness at every opportunity. I’ve still got much to say, so until I lose the ability to articulate, I’ll continue to stand on my soap box.

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What it’s like to have dementia on a bad day

alzheimers

I haven’t, by any stretch of the imagination, had a horrendous day but I have had bad days and I know worse are to come.Recently I had a bad day where Alzheimer’s won for those 24 hours – I think I got my tablets muddled (or at least I hope that was the cause) and I know not to do it again.

I don’t know if I’m alone in thinking that you can feel the difference in your head when you’re having a bad day. I’m convinced you can ‘feel’ the disease inside your head. Your head feels inflamed and fuzzy.
The analogy of dementia used in Dementia Friends training is that of Christmas tree lights. When you get them out each year some don’t work or there are loose connections – it really is like that. My consultant, knowing I worked in IT, likened it to the amount of memory on a PC and how that affected performance. What he didn’t consider is that, even though I’ve worked on an IT system for 10-15 years, I still ‘don’t do technical’. For example, if my PC seems poorly I ask one of the team to take a look at it! I think I’ll stick with the fairy lights – I understand that analogy…
Imagine going in and out of consciousness – it can be like that – one minute you know exactly what you’re doing and the next you haven’t a clue what you’ve just done. I’ve also now found a way of dealing with the hallucinations that are mainly induced by the drugs (I hope!). At present these usually happen in the night – or at least I think they do! I wake up in the night and see and hear the most weird things. ‘The ‘weird’ is the clue. If my mind isn’t sure whether it’s reality, or if it seems odd, I tell myself it’s simply the drugs playing tricks and accept that it will soon go away. The ones that catch you by surprise are harder to decipher. I had in my head one night that my mum was alive. My mum has been dead for many years. I had to fight with my mind for a good few minutes before winning and coming back to reality.

The feeling of mental exhaustion becomes a regular occurrence as I’m continually trying to fit in with normality. I always fall asleep on the bus on the way home from work. It’s a 90 minute journey. I used to sit quite happily listening on my headphones to the radio. Now my brain is simply exhausted from the simple task of listening and trying to take in everything at work. On bad days I tell myself that tomorrow will be better and at least for now, I can decipher the good from the bad and make the most of the good – for that, I’m thankful:))

My bus ends up on the coast – one day I’m sure I’ll wake up and see the sea –ha!

Blog seagull

Update on meeting with NHS Employers

You may or may not remember, but when I was diagnosed last year I wrote a blog about the lack of support I found in the NHS – the very place I thought I would be sure to find advice about continuing to work well with dementia. As a result of this I approached our Director of HR, Dean Royles, about the lack of support available for our staff at St James Hospital. He put me in touch with NHS Employers.

Well, today we had our first meeting. I met with Ruth Warden and Jen Gardner and it was very positive. I came out hopeful that something would be put in place as they were full of enthusiasm to get it right. We are now planning to work together (brownie point for including someone with dementia in dementia related plans) to bring about awareness and raise the profile of the need for support. I’ll be helping to contribute to their design for documents to help employers support their employees.

We will be developing two strategies  -one to help employees with dementia or symptoms of dementia and the other to support carers juggling work and caring.

Head now full of ideas, so must go and empty brain into iPad before they escape……….

question-man

 

 

 

Reflections on the inevitable

It seems like the passing of Christmas and the start of another year has brought lots of people down in mood. The beginning of the year is never an easy time as all you want is to see the signs of spring and warmer, lighter days. For those with dementia I’ve realised it takes on a different significance. I’ve noticed that for those I now know with dementia, this time of year poses more thoughtful and fearful questions…namely ‘was last Christmas the last one as the real me?’ and ‘ will next Christmas be different?’ A very sad but realistic question to ask due to the cruel nature of the disease.

On days when you are down it’s very difficult to ignore such thoughts. However, I’ve decided that I can’t waste valuable time worrying about things over which I have no control. I try desperately to live in the present – today. Look forward to plans in the future. For example, I’m looking forward to working with Bradford University in October – goodness knows what stage I’ll be at then but I have no control over the disease, which just leaves the ‘looking forward to working with Bradford’. So I’ll try to concentrate on the bits I do have control over.
Sadly, as there is no cure, I feel my generation and our families can only sit and watch our decline. Moreover, each day  a sign or action can remind us of the inevitability of the disease. I’m not naive enough to think that if they found a cure tomorrow it would immediately mend brains already damaged. However, to sit and watch is wrong and a disservice to our children and the generations below us. We have so much to contribute – through making people aware of our experiences, making people listen, taking part in research – these are positives we can do. We don’t want or children to have that same feeling of ‘inevitability’.

One of the nicest outcomes for me from writing my blog has been to bring realisation to current and past carers as to why their loved ones behave in a certain way – their loved ones are a stage further down the line than me and can’t express what I’ve been fortunate to express through writing about it. Those are the valuable contributions I’m talking about. My fellow bloggers and I are able to bring the experience of dementia into the realms of those who don’t – surely this is valuable information. It’s also a way of taking the thoughts and fears out of our heads and into the written form. It’s a way of sharing our coping mechanisms in order to help each other and those who are looking for help. You can imagine the frustration and anger we feel at the inevitability of our decline but if we dwell too long on those thoughts we’d all end up queuing for the journey to Switzerland. I’ve got so much more to contribute until I succumb to those thoughts.

To do nothing seems cruel to our children; to do something, no matter how small, seems a wonderful gift to give.

No wonder we feel despair and have such dark moments at times. Allow us those moments without criticism. ‘Live for the moment’ is a message that comes out of the film Still Alice. I hope you’ll all watch it if the opportunity comes your way as it will give you a frightening glimpse into our world and our future and make you realise why it’s so important to live for the moment and try to make a difference.

Spring is just around the corner
Spring is just around the corner

The most surreal week yet…

This week I’ve got the most surreal week so far……
Monday: Channel 4 coming to the house to film for Channel 4 News (to be shown Friday evening)
Tuesday: meeting with NHS employers to discuss their plans for two Employer Toolkits. One is for employers to support employees with symptoms of dementia and the other to support those juggling work with caring for someone with dementia
Wednesday: working day but also deadline for an article for The Guardian newspaper
Thursday: London at the premier for Still Alice – meeting Julianne Moore for a chat and various reporters
Friday: just working – I think…

Saturday: filming me, Sarah and Gemma chatting round the kitchen table (obviously the one I’m looking forward to most:)))

If anyone had told me my diary was going to look like this a year ago I would have laughed very loudly. I suppose all the above have to come under the heading of ‘advantage of living with Alzheimer’s’. I’ll just try to take the opportunity to raise as much awareness of dementia as humanly possible in one week.

Any week is Dementia Awareness week in my book!
Any week is Dementia Awareness week in my book!

New experiences

Jim came to see me last week from the BBC. He is making a short documentary following on from the forthcoming release of Still Alice. Three of us with Alzheimer’s at different stages are being asked to make a video diary of snippets of our life living with dementia.

Sarah, my daughter was there too so that at least someone else would know how to use the camera once Jim left.
He was very patient, bless him. He went through the sorts of filming he wanted me to do. Sarah kept asking the Spielberg questions around types of shots and I kept asking where the on off button was………..:))) I did a bit of filming at the weekend and then had to do it again as I obviously hadn’t pressed ‘record’…..and then again as I hadn’t the mike the right way round……..ha!

Jim has kindly offered to let us have a copy of all that we tape, so me, Sarah and Gemma are going to take this opportunity to record our own conversation at the kitchen table. This will  give them something to look back on in the future as a record of a time spent together simply chatting as a family does.

It all seems a bit surreal but I feel so lucky to have been offered such an opportunity to do something different. I know lots of people have done this sort of thing but I haven’t.  Every time an email appears in my inbox asking ‘Would you be able to or ‘would you like to’ I now just say yes, without even thinking, just to grasp every opportunity while I can. I’m so grateful to the Alzheimer’s society for sending all these opportunities my way – thank you to all those who have asked me to be involved:)

Take 346.......
Take 346…….