Living with dementia at work

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I think the biggest challenge at work is the sheer mental exhaustion experienced from a relatively small amount of time in the office. My job centres around attention to detail. Trying to concentrate, keeping up with the everyday goings on, trying to shut out corridor conversations, coping with interruptions and having to start again if I am interrupted are some of the challenges I face. But the biggest change to come to terms with is the amount of time it takes to perform certain tasks – those that once took a minute now take (what seems like) forever. I can still do them, I just can’t do them quickly…..very frustrating and demoralising.
I’ve been trying short days in the office and making up my hours at home – sounds simple but the mental exhaustion just leaves me so worn out that I invariably fall asleep on the 90 minute bus journey home. My bus’s destination is the coast – one day I’m sure I’m going to wake up with the sea in view…….
I’m still working in my current job but don’t feel as though I’m able to contribute as much as I should. I feel like I’m letting the team down. I’m continually trying to find ways I can contribute more and, depending on my state of mind on any given day, am determined to go out with a bang and not a whimper……well ,that’s how I feel today………..:)
You may or may not remember that I had a meeting with our director of HR re the lack of support for employees with dementia in their lives. Well, true to his word he’s arranged for me to meet a team from NHS England as they’re working towards producing 2 documents – one to help staff who care for someone with dementia and the other to support staff with dementia. I’m hoping to meet with them this month – watch this space.

Whatever the outcome of the meeting with NHS England, the resulting toolkit won’t benefit me but at least it will help others in the future. It’s so important to have options. I want to work in some shape or form but like so many others of my age, I’m in a Catch 22 situation. I live alone so can’t reduce my hours or take a less stressful job as I wouldn’t be able to afford my mortgage. So the only option left for me is to retire and use my pension to pay off my mortgage – I’ve been accepted for Tier 1 early retirement so I can’t go back to the NHS but can take another job, no matter how few hours, if an appropriate one comes my way – fingers crossed it does.

I’m lucky, I’ve been allowed to organise my own working hours due to the nature of my role and for that I’m grateful. There are, however, frustrations in my current role because it’s so specialised.
As more people are diagnosed early, more people will find themselves in this situation. I hope the Toolkit considers this and enables the possibility for each situation to be considered on it’s own merit and allows options of all sorts to be made available at a time when you most need support and that needs to be at the start of the journey.

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “Living with dementia at work

  1. Hi Wendy,
    I’ve been following your blog for a while now and I must say: you are one of the most courageous and had-working people I’ve known! It must take a huge amount of energy, patience, and resilience to face the many challenges of dementia while keeping your day job and taking on so much advocacy work.
    In just a few months since your diagnosis, you’ve already managed to change the world! I know that you said you used to be faster and more efficient in your daily tasks… However, from what I am gathering, I would be super-tired too if I had so many projects going at the same time (and I don’t have dementia!)
    I wish you all the best to you and thank you for sharing these beautiful pieces of you in these pages. xoxo from Italy.
    Eloisa

    Liked by 1 person

  2. Wendy don’t be so hard on yourself you are cramming so much into your life your going to feel tired and personally if it was not for the fact I’m driving I would defiantly make use of time spent travelling by taking power naps xx

    Liked by 1 person

  3. Reblogged this on george rook and commented:
    Difficult times for people at work and living with dementia. I retired before diagnosis, and can now see many of my colleagues knew my memory and inability to meet deadlines but actually did and said nothing. I did not have a happy departure, but I too would like others to in the future. If I can help with the toolkit let me know.

    Like

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