How many of us manage to keep a job going?

Discussion in 'I have a partner with dementia' started by maryjoan, Oct 15, 2019.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Just wondering how many of us manage to keep our own jobs going when we are live in carers for our PWD?

    Is it impossible? Or just difficult?

    I have managed to keep working from home for going on 3 years now, but I do find that breaking at about 11.30am when he wants to play his board games until lunch time, takes away my motivation to work in the afternoon.It's as though my brain has lost all motivation.

    I love my job as a genealogist and am still getting lots of commissions coming in even though I don't advertise - and I am sure it helps keep me sane, but for this 'down' I have in motivation after playing his beloved board games - and the board games are literally the only thing we still do together, so loathe to give them up.

    I did have the idea of an office outside the home, but various family members were correct to point out to me that OH cannot be left on his own for any length of time now - I missed that boat by a year or so....

    So, back to original thought - are you still able to work if you want to?
  2. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    I wish so much that I could, unfortunately mums 'needs' are getting to the point of overtaking every corner of my life. I wanted to even try part time work but mums timings won't allow me to have consistent hours. I miss the social interactions with colleagues and customers and feeling of normality.
    The money side has been awful too. Yes I would love to go back to work full time and do worry my skills will be left behind and I will struggle to keep up with changes if and when I do
  3. LizzieM

    LizzieM Registered User

    May 6, 2019
    I now freelance - nuff said.....
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    I gave up work as a carer to look after dad.I got fed up with the phone calls from the care company saying dad needed this or that.It got too much....
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    I tried but my job had split shifts so I was at dad's early in the morning then work for 4 hours then dad's for dinner etc then work from 7 till midnight. Impossible and it was a rubbish job anyway. Then I tried evenings only but I was becoming unreliable so that went. I was promised by my boss that I could go back whenever I wanted but she has left now so that's out of the window too.

    I had a rather nice Saturday job that I was determined to keep and managed that for more than 3 years but we got shut down for redevelopment.

    I have given up with trying now.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think it is easier to keep a job going if you dont live with the PWD.
    Mum wamted me to give up work, leave OH and go and live with her, but I didnt and eventually she moved into a care home where she was happy.

    With OH it became much harder because I was at the "pit face" and had to keep sorting things out and go for appointments. Eventually I took early retirement. We dont have as much money now, but the house is paid for and OH cant go on holiday and doesnt want to go out much, so, TBH, we dont spend much. I get carers allowance and get NI paid so I will have a full state pension and we survive, but I do miss my work. I used to say it was my respite!
  7. DennyD

    DennyD Registered User

    After initially reducing hours I reached burnout last July. I reached the conclusion I could no longer cope with the stress my job brought, the 2 hour daily commute, and looking after the house as well as caring. I have handed in my resignation and my last day will be 31 Oct. I have to say in some sense it is a relief, but equally daunting in a financial sense as well as emotionally. I know the advice about getting help etc, but that only goes so far, for our situation at least. I could no longer continue as we were my health was suffering and therefore he was suffering as well.
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    It's a double edged sword, isn't it? Our lives are lived for the benefit of our PWD, and not on our own terms..... Good Luck with all you do....
  9. kindred

    kindred Registered User

    Apr 8, 2018
    I kept working with reduced hours and carers but it was hell. Every time I came home it was to some destruction or other in the house, pillows shoved down the toilet and the flush pulled, floods, some other electrical fault or other …
    I do not know how I survived it, and didn't eventually, having a breakdown. My beloved husband is now dead. I long for him back, but I would not have it at that price.
    I do still have my job, but will retire soon anyway I guess (I'm 73).
    warmest, my help needs to be given to us. Kindred.
  10. kindred

    kindred Registered User

    Apr 8, 2018
    I meant MORE help … wish I could actually give my help!!xx
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Oh, bless you - you give plenty of help by way of support on here ! x
  12. DennyD

    DennyD Registered User

    I hope you will keep trying with your work Maryjoan. You seem to have dedicated so much to it and clearly are passionate about it. Having read about your experiences you are a clever and resourceful lady.
  13. White Rose

    White Rose Registered User

    Nov 4, 2018
    Hi Maryjoan - by having carers in I've managed to keep a part time job going, it's the only thing that keeps me sane. I'm going to start taking my partner to a day care centre so I can continue to work and not have to worry about him - I have to keep working to feel like I have some sort of 'normal' life.
  14. Olliebeak

    Olliebeak Registered User

    Sep 13, 2014
    I work two mornings a week and as I have always worked while OH who is 15 years older retired way before he became ill, it is part of our routine and he is used to it. The down side, as someone else said, is what mayhem I might find when I get home. I am thinking of giving up because I am not really enjoying the job anymore. I only go now because of the contact with sane people. My fear is being stuck at home without the guaranteed get out of jail card.
    I did hear about someone who left her job but didn’t tell her husband. Just carried on going out for two days a week! Tempting!
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I'd do it, as long as I wasn't coming home to bedlam.
  16. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    In hindsight, I dearly wish I had hung onto my part time job. The boss even offered that I do 'a couple of hours a week' (presumably he was thinking ahead, to when I could up the hours again). But as mum had just had a serious stroke, I thought her end was near, and I wanted to spend as much time with her as possible. She lived for almost another year. That time was precious, and I have no regrets, but now wonder if I could have just kept those few hours a week going, as I know it would have helped me to go back to work 'properly' after mum died.

    I'm mid 50s and don't even get responses to any jobs I apply for. I think I'm very employable and have a good CV, but I suppose they don't want people as old as me! It's rather demoralising. If anyone can cling onto a job, by whatever means, I recommend they do so. My financial situation isn't dire, but it's not great either, and I really could do with some extra income right now!
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I find it almost impossible to keep up with the paperwork for both parents & the constantly changing needs- & Im not a live in carer 24/7 either ! How on earth you are expected to care & work as a live in carer just boggles the mind!

    I struggle being self employed & working from home, have great admiration for anyone who is trying to juggle dementia , work & life ......
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I really do wish you all the best for the future, how awful to add the worries of finances to the pot
    I applied for everything possible for Mum & Dad ; & before Dad went into the care home they were actually financially secure for the first time.
    So contact Age concern / Alzheimer’s society & hopefully there might be allowances available.
  19. DennyD

    DennyD Registered User

    The finances are the key, using my time now to work this out. I would dearly like to work some hours, I tried for PT work closer to home, but as someone else mentioned being in your mid 50s is a barrier in particular once you disclose you are a carer! So much for equality and inclusion, however I understand it from the employer's point if view. I had already reduced hours but as I increasingly started to resent my job, probably because I could only see how futile it had become due to living with the experiences of being a carer and witnessing the devastation of dementia, I decided to go especially having gone through burnout, this scared me tremendously. I hope it will bring a different opportunity.
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I went self employed years ago due to ill health but that’s not possible for all. I think that ensuring you have council tax reduction applied from the point of diagnosis is important. It was a big rebate back in the pot for mum & Dad. Also ensuring that the correct level of Attendance Allowance is in place & pension credits, Mum was entitled to a lot of financial help but she was unable to access it herself due to dementia!

    age concern started the ball rolling & I just took over eventually when Mum found it beyond her & distressing.

    money worries are horrendous ontop of everything else. Good luck

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