Tag Archives: work

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!

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

 

 

 

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!

Follow on from yesterday’s blog

I had another thought following on from the workshop in London which I spoke about yesterday……..

During the discussions, the researchers still seemed to be in the realms of the ‘elderly’ when they spoke of dementia and the types of trials they were undertaking.

Whilst the elderly are undoubtedly a signficant group, I highlighted the fact that, an ageing workforce, combined with younger people being diagnosed, would pose different challenges for the future and it would make sense to start asking those questions now. It will be a whole new generation of people with different needs and requiring different types of research. For example, more studies are needed on ‘working well’ with dementia and the needs, not only of those working with dementia, but also a need to support those who are trying to juggle work and look after someone with dementia. You may or may not remember but I’m due to meet with NHS Employers with regards to two Toolkits they are working towards – one to support employees with dementia and the other for carers. The meeting is now taking place at the beginning of February so watch this space………..

I’m currently part of the research being carried out by Dr Louise Ritchie from the University of the West Of Scotland into dementia in the workplace and they’re in the process of asking for more funding for this to develop further. I hope they’re successful. There are lots of good engagement projects coming out of Scotland.

I also think my generation will have different expectations of care homes in the future and this could also make for a very interesting study in preparation for future needs. The fact that the National Institute for Health Research is planning to consult with those affected by dementia can only be good and may bring about more ideas and thoughts on future needs.

We’re heading in the right direction but so much more needs to be done, but this can’t be achieved without more talented individuals being attracted into dementia research and people with dementia openly being offered the chance to take part in research.

Post diagnosis care sadly lacking

I was diagnosed on 31st July 2014. I thought there would be support available from the very start. After all, this was momentous news, so surely services would be geared up for such situations and would kick in immediately to support and advise me?

How wrong I was. At hospital, I was in the care of 2 wonderful doctors (a specialist registrar in neurology and a clinical psychologist)and my GP has always been very supportive. After diagnosis I was quite rightly discharged from the hospital and referred to the memory clinic – the perfect place to be referred, I was told. However, due to unforeseen circumstances the allotted Occupational Therapist had to cancel and already stretched resources meant no one was available to cover her cases. I finally saw someone on 7th October – doesn’t sound a long time to wait in the grand scheme of things in the NHS but for me it seemed like forever.

In the meantime, I turned to occupational health at work – after all I work in a hospital, surely they could advise me how best to cope at work if nothing else. Again, I had to wait 4 weeks for an appointment………….. Once I got to the appointment, it turned out that although it may be a good place for patients, it had no knowledge or experience of supporting employees.

Each person I’ve met eventually has been very nice yet openly admitted that they are not geared up to support ‘young’ people with Alzheimer’s. That first month post diagnosis is so important. It’s the time you need advice and support yet it wasn’t there.

Every which way I turned I seemed to hit a locked door and remember feeling abandoned and let down by the NHS. I’ve since found out, through reading and talking to others, that this is very common. Services are geared towards older people at a more advanced stage of dementia. Something will need to change. In the future I can see that more people will be diagnosed earlier so services need to develop news ways of support as the numbers diagnosed yet still in work can only increase.

As I hope you’ve realised, I’m very independent and resourceful. I trawled the web for information, but only had to look in one place for everything I needed initially – http://www.alzheimers.org.uk/   (A few blogs will follow solely about this marvellous organisation)

I was overwhelmed and felt totally relieved by the amount of information I found available on one website. I was also lucky to find some research being carried out by the University of the West of Scotland – ‘Dementia in the Workplace’. I’m working with Dr Louise  Ritchie and she and the rest of the talented team there are looking not only at the challenges faced by those of us continuing to work with dementia but also the perspectives of work colleagues and the challenges they face.

It’s only through research such as this that changes will take place so I feel honoured to be a part of this project which will help future generations.

*I’ve updated my gallery if you fancy taking a look*

 

 

Acknowledging the diagnosis at work

I’m in my 20th year of working in the NHS and I’ve loved every minute – well almost! Whatever I do I have to do well and hopefully my work colleagues will endorse that  – although I won’t ask them just in case…………..

Confession time (to those that don’t know me) – I have been something of a workaholic. I’ll happily catch up with emails on a Sunday night ready for the week ahead. When workload exceeded the number of hours in a day, I’d simply log on in the evening when I got home and continue whatever needed doing. It was just part and parcel of the work I always enjoyed.

In September, once I’d come to terms with the diagnosis, I decided it was time to come clean with my team. They were use to me having  a bad memory but had always put it down to the stroke I’d had 18 months ago, so that was nothing new to them. I knew I was getting slower, could no longer multi task and struggled to follow conversations in meetings. I felt it wouldn’t be long before they recognised all these extra shortcomings too, so I decided to deliver a talk on ‘Dementia Awareness’ before telling them of my diagnosis.

They have been wonderfully supportive. It must have been a difficult and embarrassing talk to sit through but I did try and bring humour into the situation to reduce the seriousness. I can forget where I am sometimes so I described this by saying I sometimes need a sign to hang around my neck which says ‘Back in 5 minutes’. A sense of humour is something you must never loose………

Working in the NHS and having a wonderful team made me feel confident that I would receive the support I needed once I did ‘come clean’ about the dementia. It was a momentous decision to say it out loud. Obviously you always get those  who suddenly think you have 2 heads and use the diagnosis to accuse you of all sorts but, after my experience, I would always recommend honesty and openness to anyone at work so  you can get the support you’ll need.Those that know you well will treat you well. Today’s ‘me’ is a totally different person. A diagnosis of any illness will focus the mind. A diagnosis with no cure and an inevitable end will suddenly wake up every self preservation cell in your body.

It took me several months to accept that it’s ok just to work at work and make the most of the time at home to enjoy being at home.

Different me each day

It’s taken me a while, but I’ve realised that each day can be slightly or hugely different. Some days, like yesterday,  you can wake up and your head is tangle free and feels as clear as a bell – you can fool yourself into thinking that the Alzheimer’s has left you for a few minutes or hours. It does play cruel games though as it can change without warning and before you know it, you’re lost and confused. The most extreme example I’ve experienced is at work. I was sat in my office working quite normally and needed to go out for some reason. I was stood in the corridor next to my office and just didn’t know where my office was or who was behind all the doors. I’d been warned that this could happen and that it hopefully would only last a few minutes, so had developed a plan already. I walked to the end of the corridor and found the cloakroom. I sat in there for a while and eventually could feel my head clearing and after a while I could walk back down the corridor and fit the pieces of the jigsaw back together again. It was such a strange feeling though, as there was no panic involved, just confusion.

Another incident, which some of you may be familiar with after a few too many sherbets, was waking up and not knowing what day it was or whether I should go to work. We’ve probably all experienced that feeling at some point after drinking too much. If it’s due to drinking, it will eventually dawn on you what day it is. I don’t drink and I remember waking up and sitting on the bed really not knowing what day it was or what I was suppose to do now. Did I go to work and if so was I due to go today? Again, I’d been warned of such confusion so I used my phone to find out what day it was and used my calendar to see if I was due at work. The phone has proved to be a life saver – even though I’ve only got a little brick! I don’t know what I’d do without it. I’m so lucky that I’ve always been highly organised so I haven’t had to learn that new skill.