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. marionq

    marionq Registered User

    Apr 24, 2013
    5,883
    Female
    Scotland
    This is an illness like no other. It tests the carers mental and physical strength, emotional endurance, and temperament to the nth degree. What it is doing to the person with dementia depends on the type of dementia and many different kinds and symptoms are discussed on TP. We look at others posts and think how much worse other people are finding their life and that helps to keep us going. In truth if you are the person doing the caring then your problem is your problem whatever anyone else is going through.

    @Amber17 you are a young mother which is to me the most important job you will ever do. Your own mother obviously did a good job when you care so much about her. All of this will push you to your limits so you have to plan now how to get all the help you can. This might mean personal care help in getting her washed, dressed and fed or day care centres which will keep her entertained. Make enquiries about how you can get this started. The earlier the better. Please make sure you have Power of Attorney in place for Finance and Health and Welfare either through a solicitor or by downloading the forms and doing it yourself which is much cheaper. Register immediately whichever you do.

    Ask on here if there is a specific problem you are dealing with or if you just need to vent your feelings. Best regards.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    Good on you @Brian_P6 - it is all about mental attitude I think. I keep giving myself a shake, but it has taken me 3 years to almost get my head around the situation here. My OH moved in with me from the Midlands to 'help' me with my business - and he did - until this awful illness came along and practically ruined my business.
    At least working from home, we don't have business rent/wages etc to pay and overheads are less......
    You are right though - everyone thinks dementia is for old people - and it isn't and it is not 'just forgetfulness, yesterday for me, it also meant my computer glasses were broken !!!
    Good Luck
     
  3. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    I often think I will run away to a remote Scottish Island!
     
  4. Juba

    Juba Registered User

    Jul 27, 2019
    27
    I found I could no longer work at the start of this year when my OH really needed me around. My job really needed me to be able to travel which meant very long days as some places were a 5 - 6 hour round trip. I'm lucky in that I've been able to take paid sick leave - full pay for 6 months and half pay for 6 months. That's coming to an end in the New Year. I'm afraid I'm being pretty ruthless and not resigning/retiring as I'm still only 57. To date, work have been very supportive so I know I'm lucky......(in that way at least)
    I know I'll have to take retirement soon and early retirement will be a hit and it scares me silly losing what was a really good well-paid job. I honestly don't know how people get by with no steady source of income. It really disgusts me what people have to give up for measly payments/entitlements. Add to this the disgrace that despite being told my OH should be getting daily care paid for that doesn't happen because there is no capacity to deliver services in our area - we live 4 miles from a city centre....
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,658
    The lack of qualified care staff is a huge problem
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    Re Care Agency Staff - my OH has a stoma that he cannot manage because of his dementia.

    We live in a remote area, and care staff have to travel quite a distance to see him yet......

    I have had one agency send staff out to 'peg feed' him !!!!!!! He is NOT peg fed - he has a stoma
    I have had one send an untrained member of staff, in the hope I would train them ! I suggested I invoice them for my time
    I had our present agency only last week, arrange with a professional stoma nurse for a staff training session at our house - sounds good. The agency arranged this and the time - yet their trainee turned up 40 mins late, keeping the nurse waiting because the agency had given her a different time....

    Yes, good, qualified help is really hard to find
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,658
    it sounds very stressful, trying to liaise everything is never easy. Amazing how people don’t appreciate rural distances, compared to motorway miles.
     
  8. White Rose

    White Rose Registered User

    Nov 4, 2018
    83
    This is excellent advice Marionq - POA is essential, it has been invaluable to me dealing with my partner's financial affairs and health, particularly as we're not married. Getting help as well, absolutely vital to have some time off and try to maintain some sort of 'normal' life.
     
  9. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    40
    Female
    Sussex
    Hi Maryjoan. This is an interesting subject for me as I’m now struggling with my four days a week job. This week has been bad as I’ve not been able to go in except for short spells (fortunately only 20 mins drive). It’s causing problems ( as if there aren’t enough already). We have carer in morning after I have left and sometimes for lunch so I don’t have to pop back but it’s going to have to be more than that now as I cannot afford to give up work. From a sanity point of view but also financially as i have no pension to speak of. I can do a bit of work from home but not for whole days - the role doesn’t fit the work from home pattern. Also it wouldn’t be tolerated and I won’t get another job at my age. But the situation here has gone from bad to worse and we are getting to the point where OH cannot be left alone. He has fallen twice in past week and that is a new development. His mental distress is now seriously bad and it is heartbreaking to see. I know things can’t go on like this for much longer but some decisions are so hard to make.
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    I don't know your age, but I am self employed as a genealogist. Maybe you could do something from home that is essentially self employed ??
    My OH has taken two falls in the last week - unexplained, when out of the house, so the Dr raised the question of whether he should go out alone at all.....we live in a lovely caring village, so are fortunate that he is relatively safe.
    Our work is often our identity, and whilst our PWD loses their identity, we also start to lose ours - it takes an awful lot of effort to keep all these plates spinning....
     
  11. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    40
    Female
    Sussex
    It’s great that you live in a caring village. Fortunately so too do I but my husband doesn’t ever go out on his own now. I can’t imagine him on the pot holed road being safe. But he also has no desire to go anywhere unless someone is taking him by car. I don’t know about you but while living in a village is lovely on the one hand it does mean that useful facilities are quite a long way away as dementia help seems to be concentrated in cities and large towns.

    Going back to the work situation, I am 66 and work as an administrator in a small firm. I have been there a long time. Its difficult to do much from home as sadly the directors have not embraced modern working practices and don’t understand that certain things can easily be done from home and can even sometimes better be done from home. If I had a pension as back up i would feel more relaxed but with nothing other than a state pension I need that job to keep a reasonable standard of living. I am very fearful of poverty! The job, while it’s hardly the most exciting in the world, also gives me respite. The thought of being cooped up here all day (without being able to afford a carer for my very uncooperative PWD ) frightens me too!

    The solution may be forced on me soon. It’s 3am and he has woken me up with his terrifying ranting which I am trying to ignore. I don’t think he will come upstairs where I sleep as he doesn’t like stairs. Without that safety barrier I don’t think I would be safe being alone in the house with him at night.
     
  12. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    As others have said on here in similar situations - you need to feel safe in your own home - just in case he does climb the stairs - have a plan 'b' - ie a room you can lock yourself into and a phone with you at all times - and do not be afraid of phoning the police if necessary.

    Have you had a carers assessment? Are you on social services radar? Has your OH got an up to date Care Plan?

    We do not get dementia help as such -but we do have access to carers via an agency, and this is paid for by social services as we do not own our own house and cannot self fund. The carers can be a boon, and if you have a care plan, will do what is needed within that plan.

    Also bear in mind there is a stage when it is not about what your OH will accept, or refuse - it is about what you say is happening.

    I have to work, as I only have state pension, and I am 70, but you are allowed to refuse to look after your OH if it comes to that.

    Are you getting all the benefits you are entitled to - Attendance Allowance, reduced Council Tax etc etc

    We have no car any more and I am as you say 'cooped up here' 24/7, it is very hard. I am going to Scotland tomorrow, to visit my baby grandson, OH's daughter is meant to be coming down to look after him - but despite attempts to contact her this week, she is not responding.......tricky - we will see what happens.

    Good Luck
     
  13. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    40
    Female
    Sussex
    Thanks. Maryjoan. Enjoy your time away. Indeed hope you get away.
     
  14. CWR

    CWR Registered User

    Mar 17, 2019
    36
    I work but only part-time. They had a restructure and wanted me to work in a nearby town and since I have no car I had to turn this down, losing over £100 a month but what can you do? I do find the juggling difficult even working part-time. At times I have to take personal days, but this reduces my annual leave, which I like to leave for when mum is in respite, so a lot of juggling involved.
     
  15. Emac

    Emac Registered User

    Mar 2, 2013
    180
     
  16. Emac

    Emac Registered User

    Mar 2, 2013
    180
    You sound like an amazing woman and an exceptional daughter! You also must be highly resilient and resourceful to keep on problem solving and moving forward in a system that seems determined to give us as little support as humanly possible. It sounds to me like you have done a great job and are coping well in very difficult circumstances. Just keep on doing what you are doing honey and remember not to exhaust yourself beyond what is possible. Sending love and a big hug xx
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,658
    Today I attended my local monthly market to sell my art & craft! my one morning a month escape had the dreaded mobile phone call ....so trying to sort out Mums shopping & sell art 100 miles apart isn’t a good combination!

    But I survived & my nerves shredded, I am now trying to restock & prep for a mid week event!

    I’m going to be very busy until Christmas!
    I’ve spent all year sorting out both PWD if I don’t sell I don’t have an income!
    So who needs sleep? Well as I’m used to being part of the wide awake club at silly o’clock I might as well be productive ....


    I’m afraid I’m going to be selfish & put my work first for a few weeks - after all by the middle of December it’s all over bar the the wrapping! I can sleep then!
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,658

    Oh bless you, to be honest I blunder my way through life, apologising a lot for standing on toes, & just laughing at myself a lot! I think I’m just like” Dory “in “Finding Nemo “( a story about fish! It’s a Pixar film!)
    “Just keep swimming “ a little ditty that Dory’s character sings ... how apt for a fish!
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    640
    Female
    cornwall
    You should do an ebay shop.Im not up your way but I do love Arts and Crafts
     
  20. Ruth1974

    Ruth1974 Registered User

    Dec 26, 2018
    32
     

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