Tag Archives: adapting

The new found advantage of silence

I always use to want back ground noise – whether it be music, television, radio – I always had something on in the background. But recently I’ve found my brain prefers silence. It doesn’t have to compete with background noise and it can function better.
We all learn to adapt to new situations. My friend has tinnitus so a world of silence would be her idea of hell as this exacerbates her problem. What’s important to understand is that it’s not a negative for any of us to have to adapt to new ways.

For me, to no longer be able to do 10 things at once mustn’t be seen as a weakness, it’s simply an adaptation which has to be accepted in order to function better. What does it matter that I can’t listen and write at the same time. What does it matter that I can’t answer the phone and continue to do something else. What does it matter if I can’t talk and follow a programme on the telly. None of these things matter any more. I now love to sit in silence and write. I now love to sit in silence and read. I now love to talk or simply listen with no added distraction in the background.
I now love to just sit or walk – in silence. It’s amazing what you hear when your brain isn’t confused with other things.

Peaceful walk in the park
Peaceful walk in the park

Looking forward to retirement

If you’d have asked me six months ago whether I wanted to retire I would have said ‘NO’ very loudly. It wasn’t the right decision for me at that time. However, ‘time’ is a wonderful thing –  situations change; views change. Now is the right time to decide.

Working on the eRostering system I use is a daily reminder that I have Alzheimer’s. It’s a daily reminder of how much slower I am, how little I can concentrate etc etc.  So it’s having a daily negative impact on my life and right now I just want positives. I’m certainly not saying I don’t want to work post NHS, because I do. However, I’m in the catch 22 situation whereby I still have a mortgage and live alone. If I take a less stressful post or reduce my hours I wouldn’t be able to afford my mortgage, so the only option open to me is to retire, use the lump sum to pay off my mortgage and then start a new life. Money has never been that important to me – I don’t have expensive tastes, don’t drink or smoke – I live a very simple, contented life. So the fact that I will have little to live on doesn’t worry me, as it may do others, as long as I have enough money to pay the bills.

Well it’s official – I retire on 31st March. Can’t wait. I feel like I’m in limbo at the mo.  It will be good to be able to do all the things I want to do but don’t have the time for. I’ll be able to do so much more to contribute to the work of the Alzheimer’s Society, get involved with local projects,  go to places when I want to go to them. The biggest misconception in wider society is the idea that those living with dementia are all elderly, that we have a carer, that we can’t get about and need lots of help to do everyday things. We will eventually, but there are months or years ahead where we can function on our own, albeit with support from our loved ones. We need to be seen, feel as though we’re  making a valuable contribution to society and still have a voice as we live well for as long as we can.
Don’t get me wrong, I’ll also miss working in the NHS and my work colleagues (well, most of them!) but if I choose, I can work part-time somewhere. Having choice, that’s what’s important.

More time to chill with Bill - although I'm not very good at chilling so he may have to get a wiggle on to keep up with me!
More time to chill with Bill – although I’m not very good at chilling so he may have to get a wiggle on to keep up with me!

Channel 4 News Visit for Still Alice

Not sure what I was expecting when I was asked to allow a film crew into my house but I wasn’t quite prepared for the amount of equipment that came in with them…….. The cameraman, producer and presenter, Victoria Miller Macdonald, (personal joke) were all wonderful people and clearly very good at their job. The amount of furniture moving and  filming that is needed for such a small piece was staggering.

I must confess to thinking that the interview would appear melancholy because I wasn’t sure which bits they would leave on the cutting room floor. However, I think the piece was very well balanced and showed positivity as well as reality. The only negative, if there could be one, was the reference to me ‘suffering’ on the web site, but I think both myself (and Julianne Moore in her interview) reaffirmed the notion that we do not suffer, we ‘struggle’ with the disease. Victoria commented that I only paused to think of the right words briefly. What she wasn’t aware of was the two hours I’d spent prior to their arrival reading and re-reading my notes to ensure I had some words in my head. This is all part and parcel of the everyday adaptions you have to make to fit into normality.

My special moment in the piece on the news programme on Friday was when Julianne Moore actually remembered meeting me. I’m sure it was genuine and not stage-managed as her eyes lit up. I’d said to her that she had the advantage over me as she could choose to remember our meeting, whereas I would forget. Well the memory is still very clear in my mind and the photographs and signings provide an even clearer picture. She has, through making one film, raised more awareness for dementia than I could ever wish to do. She had done so much research before playing the role and it certainly showed when she spoke to us.

I have a very short shelf life in my ability to raise awareness and have told the Alzheimer’s society to make use of me while I’m able. I’m a very private person who has allowed anyone who cares to, read about me and my experience of living with dementia. It’s my way of speaking out for those who feel they have to remain silent through embarrassment.

Not everyone will agree with what I have to say or the way I say it, but it would be a sad world if we all had the same thoughts and feelings. All I want is for my words to evoke dialogue and discussion. I’m not embarrassed to have dementia. It is a brain disease that can affect anyone.

After the film crew had left, I couldn’t remember half of what we’d filmed and some came as a total surprise when it was shown on Friday!!
They always say experts make things look simple – next time I watch a 5 minute interview on telly, I’ll know the amount of effort and time it has taken to produce.
Thank you to all those who sent txts, emails and kind comments. Another wonderful experience thanks to the Alzheimer’s society.

p.s. The fact that I’m awake at ‘silly o’clock’ means that ‘normal o’clock’ isn’t an option. This means I missed the fabulous news that Julianne won the BAFTA last night. It also meant I missed her thanking me, Christopher and Gillian in her acceptance speach. and in her interview with the press afterwards. The fact that she remembered us and bothered to mention us was very very special.

https://m.youtube.com/watch?v=cKtw1sulAfY

http://www.independent.co.uk/arts-entertainment/films/news/baftas-2015-julianne-moore-wins-best-actress-award-for-still-alice-10031998.html

Julianne signing MY Still Alice book!
Julianne signing MY Still Alice book!

A room full of memories

My daughter Sarah's first shoes
My daughter Sarah’s first shoes

I’ve always had a box where I’ve stored selected special items from the past – Sarah and Gemma’s first shoes, letters from them when they away from me, memorabilia from special events. I suppose I now look upon this blog as a means of recording recent memories of my thoughts and moments in life.

Since I helped Sarah pack her bags and move into her own house, I now have a spare room which I’ve turned into a memory room. On the walls are pictures of special places, special people and special prints. It has a calm atmosphere with nothing but happiness on the walls.

My dad during WW2
My dad during WW2

I imagine you’ve all got a small corner somewhere in your home where you also display things like this – if you haven’t, I’d urge you to dedicate a small (or large) piece of wall somewhere in your home where you can display, however randomly, photos that bring a smile to your face,  of special people and special places.

When I walk in my room, the only emotion I feel is one of happiness.

 

Reflecting on a Life Changing Year – Part 1

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What a year it’s been……..

2014 started off a dementia free zone. This time last year dementia wasn’t on my radar. It was gently simmering in the background. Little did I know that 7 months later, it would take over my life. I knew very little about it or the work of the Alzheimer’s society – it wasn’t in my website favourites as it is now! In fact, at that time, I’d never been on the Alzheimer’s site. My resolutions or plans for the year ahead did not involve living with dementia. I had 8 more working years ahead of me in the NHS – I loved working…I’d never even heard of a ‘blog’… It just goes to show how life can change in such a small window of time.
Here I am now making short term goals, planning to take early retirement, and doing all I can to promote living well with dementia – what a difference a year can make.

Although dementia had been mentioned as a possibility in the early part of the year, it wasn’t real – not until the day you have a confirmed diagnosis and not until the actual words are spoken does it becomes real. 31st July 2014 was that day for me. You never quite know how you will react to devastating news until something devastating happens. My brain went into survival mode, thank goodness. It would have been very easy to sink into depression, but I’m thankful that I didn’t. My journey had started.

It was a bumpy, frustrating start to begin with – little support available where I live post diagnosis – apart from my wonderful daughters and friends. That is now about to change as plans are now afoot to make support available for all those newly diagnosed and is due to come to fruition in the new year thanks to the work of Emily Abbott and the local dementia forum group. I’m looking forward to working with them to ensure those with dementia are included in this plan – watch this space

My local memory clinic services fell short in every way and offered no support in the first few months post diagnosis – one of the psychologists has now asked those with dementia at the dementia forum group to be involved in the redesign of the service – watch this space

No help was available at work – the very place I expected to be able to rely on – after all Leeds Teaching Hospital treats patients with dementia, why wasn’t it there for me as an employee? Helen Gilbert (Head of Patient Services) has made it her goal to personally deliver Dementia Friends session to all her 80+ managers – I’m helping her with these sessions.
Furthermore, NHS England have asked me to meet with them in the New Year to discuss a toolkit for employers to help support staff – one for those with dementia and one for carers – watch this space

To be continued tomorrow…………..:) out of bad comes some wonderful opportunities…I hope 2015 is kind to you all:)

 

From all those with dementia

This is one man's house in Melksham, Wiltshire! He does it for charity :)
Festive pic: this is one man’s house in Melksham, Wiltshire! He does it for charity 🙂

From all those with dementia:

Don’t be offended if I get your name wrong this Christmas – what does it matter

Don’t be offended if I put the wrong names on the wrong parcel – it’ll make opening them all the more fun

Don’t keep correcting me if I get things wrong – does it matter?

Don’t be offended if I can’t join in the constant chatter – if you don’t all speak at once I’ll find it easier.

Don’t be offended if I want a bit of peace and quiet

Don’t be offended if I can’t keep up with all the games and quizzes as I can’t think of the answers quick enough.

Don’t be offended if I can’t watch a film all the way through without losing the plot or falling asleep

Don’t get the hump if I don’t remember what you bought me

I can give a thank you hug

I can accept a hug

I can ‘enjoy’

I can be content in my own little world surrounded by those I love.

I can be asked ‘what do you want to do?’

I can be happy just being me

Come to think of it, you don’t have to have dementia for those things to apply – see we’re not that much different from everyone else…………let’s look after each other this Christmas.

mum's photos 127

Dementia friendly performance of ‘White Christmas’ review

I received an invitation via my blog from Nicky Taylor – Community Development Manger at West Yorkshire Playhouse in Leeds, to attend a dementia friendly performance of White Christmas.

I wouldn’t have chosen a crowded theatre with loud music and flashing lights normally but I was intrigued to see how they could make such a show dementia friendly.

The fact that they thought to create a different environment is wonderful. The fact that they thought to include those with dementia is even more wonderful. After all, the show contained so many songs for all ages but would be more familiar to the older generations and bring back happy memories.

I arrived to find lots of people dressed in red all ready to help – the fact that they stood out was helpful. They were all so friendly and smiley. We had a sing song before the production that many joined in and enjoyed.

They’d made slight adjustments to lighting and sound to make it softer. They had flexible seating arrangements so if you needed more space you could ask for it. You could request that the seat next to you remained free. There were areas in the auditorium where you could wander walk around. They’d provided a quiet area if it all got too much and you needed a breather. They seemed to have thought of everything. They couldn’t do anything about the steep steps down into the auditorium but so many helpers were on hand that it didn’t look too much of a struggle for anyone and no-one was rushed.

It was a wonderful production. What made it was all the people on hand to help. Their brightly coloured red tops stood out perfectly and they all wore their names. The signage was clear and frequent.

I stand and applaud Nicky Taylor and her band of merry men and women helpers for showing such an initiative, let’s hope more companies follow suit – thank you from all those who attended with dementia and their carers

http://www.dementiafriends.org.uk

http://www.wyp.org.uk/what%27s-on/2014/white-christmas/

People with dementia making a positive contribution to change – Part 1

voices

I went to my local dementia forum for the first time last week. It’s held during the day, so last week was the first opportunity to attend as I was on leave from work.

I arrived late (I’m never late!) as I had trouble finding the cafe but once inside I felt like I’d always been there – another WOW moment:) The session is for people with dementia who want to make a difference – a voice for those with dementia. It was led by Emily Abbott who is heavily involved in dementia awareness, and the forum is part of DEEP – The Dementia Engagement and Empowerment Project – advertised as a ‘growing band of over 40 dementia involvement groups across the UK’:

deep

http://dementiavoices.org.uk/

The people, as always, were wonderful and it soon became apparent that their voices had not only been heard but listened to. York City Council had consulted them on new signage for tourists for the city. They’d thrown out their first offering as they were too confusing for anyone, let alone those with dementia. But their views had been listened to and their second offering was much clearer and user friendly. The council have now asked the group to offer up suggestions as to the best place to place to position the signs.  Because we know the city so well we have invited a similar group,  the EDUCATE project in Stockport, Greater Manchester, which encourages people with dementia to get involved in awareness-raising in the local community and beyond.

http://www.stockport.gov.uk/2013/2996/41143/sdct

It will not only give us a chance to meet another similar group of like minded people but will provide a better test of the maps for getting around the city.

What a fine example of including users in decision making:)

A whole new world: technology and me

I’ve never really found new technology very appealing. I’ve never wanted the latest gadget or latest model. The reason used to be cost but now, what you’ve never had you never miss 🙂 I enjoy listening to others enthuse on the subject and their excitement is infectious but I’ve never aspired to owning any of it. I’ve been content with the simplicity of my uncluttered existence.

For example, people often chuckle at my ‘brick’ of a phone and some youngsters even wonder as to it’s function if they’ve seen my particular ‘model’ – but it serves it’s purpose. I text, I ring people – it does the job.

Recently, my ancient laptop (I know it’s old by the weight of it – ha!) has become very cumbersome and difficult to use. I have a wonderful friend, Helen, who is a guru in all things ‘Apple’. She’s got enthusiasm by the lorry load and a willingness to transcend that barrier of ignorance and guide me to new frontiers.

(Deviating slightly – I have an alarm that goes off each night at 8pm when I need to take my medication – up pops the word ‘tablet’ as a reminder………Imagine my total confusion when the same word popped up last Saturday morning. I wandered round the house for a good 10 minutes trying to work out what medication I was due……….it was a reminder to go and meet Helen to look at ‘tablets’…..Mental note – must be more specific on alarm reminders….ha!)

Back to the story – I now find it difficult to learn new things so we knew it was important to see if I could navigate the touch screen technology of a tablet. What I hadn’t twigged was I never use a mouse on my laptop – I use the square, touchy thing instead of the mouse, so the slidy technology of an iPad seemed to be ok. Hmmm, now I’m reading that back, that should tell you all you need to know about the limits of my technical terminology….:)

I asked Helen to advise me as to the best tablet to get. Before I could show a nano second of hesitation we were ensconced in this enormous Apple store (I could say at this point, ‘with not an apple in sight’, but I won’t), surrounded by an array of alien goods.

The guy that helped us was very patient and reduced from 6th gear down to first when he saw the dazed look on my face. I needed:

Keyboard – tick; lightweight – tick; will I have problems remembering security code….thumb recognition – tick.

We played, Helen demonstrated, I forgot, Helen demonstrated again…….her enthusiasm was infectious. “I’ll have one” – I might get lost many times over and I might lose my APs (not even sure what they are yet!) but I’m sure Helen will help me find them again.

So here I am, blogging happily on my new toy and I’m almost competent (well, that may be a slight exaggeration) with the slidy, touchy screen technology thingy.

Thank you Helen! I’m suddenly ‘cool’ – I’ve never been ‘cool’ in my life……..

For the sceptics amongst you – what do you mean ‘how can you do that, you’ve got Alzheimer’s….?’ Haha! I can do anything!

The reasons why I still love working

I’m still working full time but it’s been a real struggle recently for a variety of reasons. However, last week I was training 3 new staff and they helped me remember why  I love working. They’re all young, full of enthusiasm, questions and wanting to learn. They’re all at the start at their working lives so have not been influenced by any negative happenings yet. There’s no greater joy than passing on knowledge to hungry young minds.

Admittedly, it was a very different experience for me this time but I knew it would be and planned the training with that in mind. I was shadowed by Michele – guru in waiting – and it turned out that I needed her there more than I expected.

She was so valuable to have in the room, to speak when I couldn’t remember the words, to demonstrate when my brain was giving up but most of all, to support me whilst in turn, learning from me.

I may leave the team soon, but no one is indispensable, There’ll be all the ‘old’ faces with all my knowledge and more in their heads and lots of young faces to bring a fresh perspective.

Billy: working hard
Billy: working hard