Giving up work to care for MIL

Discussion in 'I care for a person with dementia' started by balloo, Jan 22, 2016.

  1. Missy

    Missy Registered User

    Dec 18, 2006
    71
    Good luck with you decision.

    Like others, I would advise you to be very realisitic about what will happen if you take on the 24/7 caring role. You will in effect be giving up your life to dedicate it to the needs of your MIL. And for an unknown length of time. What will you do when you want a day off, or a holiday away from your MIL. Or even two hours down the pub or in the bath. Will you be able to get respite?

    Double incontinence day after day would be a dealbreaker for me. Couple this with maybe night after night of broken sleep and it might become too much.

    Care homes get such a bad press, yet there are some good ones out there. Sure, they cost money, but what use will an inheritance be if you are too ill and exhausted yourself when it finally comes.

    Anyway, I apologise if I speak out of turn, and wish you all good luck with your decision.
     
  2. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Balloo, I sympathise immensely with your situation which is oh so similar to mine. We moved mum in with hubby and I in June 2014. Though she was not coping at all living alone, she was still quite able bodied but just needed support and someone to ensure she had meals meds etc. I ran my own business as a driving instructor and was still able to do this up until June 2015. Mums needs increased, her short term memory got worse and suddenly she became very unsteady on her legs. I found myself worrying constantly about leaving her even for short periods and this meant my concentration levels where not where they should've been. Not good in my profession. I made the decision to give up my business. Mentally for me made a huge difference not having to worry about going to work and leaving mum alone for long periods. The downside is that I have no money other than the pathetic carers allowance of £64 weekly. I still have bills to pay and that doesn't even cover my fuel! Mum gets the higher rate attendance allowance some of which I also use when I really need to. If you can carry on for a bit longer then I would, but not to the detriment of your own health and sanity! You can get reduced council tax for yourself and hubby as you care for mum more than 35 hours a week if she's getting the higher rate allowance. If she isn't then you need to apply for it pronto as once you have that, it opens up other doors so to speak. You certainly need it now with her needs increasing, particularly if she's awake at nights too. I was so annoyed just before Christmas as mum also received pension credit to top up her state pension which meant things like dental treatment is free. They stopped her pension credit in December (great timing!) as I now claim carers allowance and you can't have both!! I gained £64, mum lost £58!! What a disgrace. We decided that a care home wasn't for mum and my parents were adamant that our inheritance should come to us not the government. There is nothing wrong with that. The care system is damn awful and whilst I'm sure there are some 'good' homes, personally for my mum, none of them are good enough. xx
     
  3. 1954

    1954 Registered User

    Jan 3, 2013
    3,835
    Sidcup
    Just a thought about all the faeces problems.

    We have tried to minimise the problem with MIL

    We have put vinyl down in her bedroom as it's easier to clean. We don't allow her access to her clothes. I take them all away when I have assisted her evening wash and then give her clean clothes in the morning ( we keep her clothes in our bedroom upstairs)

    We have an alarm mat at her door way so we are immediately alerted if she decides to go walk about at night

    MIL has a commode in her room by her bed (the commode pot is now tied to the chair as she started pulling it out of the chair causing horrendous mess)

    We have a baby monitor on all night in case she needs us and so we hopefully will not have any surprises in the morning but that does mean we never get a full night sleep

    She has plastic covered duvets for winter and summer which just get wiped down when they get undesirables on it. Mattress covers, pillow covers, 'waterproof draw sheets'. Minimises washing hugely

    Eventually we anticipate the lounge, hall way will have to have vinyl too. No carpets in the house just floor boards

    Oh and copious amounts of vinyl gloves, aprons, nappy bags,pull ups, wipes!!

    It all sounds terribly controlling but it's the only way we can cope

    I too had to give up work (RGN) with the full knowledge that I sadly will never be able to return to and huge loss of earnings

    Is it worth it? I honestly don't know

    You are doing a grand job though


    Sent from my iPad using Talking Point
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Hi balloo
    it is such a tough decision to make; I'm glad you are taking time to consider
    as little sheltie says your care should
    I'll be upfront - you may not at all agree with what comes next - of course, ignore completely if none of it is appropriate to your situation

    I didn't live with dad but was spending so much time with him I pretty much only slept and woke in my own home - so gave up work to care full time - I was lucky, no mortgage and I live alone so carer's allowance just about covered major living expenses (and I had a lot of savings) - I did eat with dad and took him everywhere so the deal was I didn't pay for food and he paid my petrol - he has very good pensions and savings and had lower rate attendance allowance, and no council tax (both of which I arranged)
    so he used those to have carer visits for the morning - so I could go over for the day after that and know he was usually up dressed and breakfasted (less so as he refused more) and an evening carer - both took the stress of some personal care from me
    I also shared care for him so had some days off - and for a year he had first one day then 2 at day care, which was really good for him - he paid
    that lasted nov 2013 to apr 2015 when he went into his care home as he wandered and for lots of reasons I am not able to live with him - he has been generally settled there but some of his slightly challenging behaviour when he was home has escalated at times and I really could not have coped with him, he was very close to being sectioned but the staff have worked so hard to keep him in the home
    I was so tired I chose to not look into working straight away - of course lost the carer's allowance - so am living off my savings - and back to paying food and petrol myself; I visit dad 4 days a week generally to see him through the early evening as that is when he is most likely to become anxious
    I'm 58 and have decided to take early retirement - my pension will just see me through, though taking it now means I will keep the remaining savings I have, so I don't need to count the pennies any more, just the pounds
    I don't regret anything - but it has taken it's toll financially, that's for sure, and the effect is for the rest of my life - all my decisions only affected me, so that's fine, my choice - I don't have a partner or children to take into consideration
    mum and dad too always said they'd saved to give me a good inheritance - even while mum was alive I told them to spend more and treat themselves, that their money was theirs and they should enjoy it - fell on deaf ears
    dad, though, happily spent money on mum's care when she had a stroke - new car to take her wheelchair, alterations to the house, regular carers - so when it was dad's turn I felt he had pre-sanctioned any payments needed for him to be cared for - no way would he want me to work myself into the ground caring for him alone - he never wanted to be a burden, he said - in fact he would never, if he had been able to understand, have agreed to me giving up work, to him working hard was a source of pride - but then caring is hard work too! - and he considered every adult should pay his or her way - he never, though, wanted me to go without

    I'm writing this just to let you see how much decisions do affect the rest of our lives - I'm not suggesting that you haven't thought through your own situation - just be entirely sure
    I've only just sorted out my pension - I lived the last year thinking I would have no income for another 2 years, and worrying that my savings would run out - it's only now that I feel secure again that I've realised what a weight that fear was, constantly in the background, influencing every decision
    it's no real security to know there will be an inheritance some time - mum and dad may have expected to pass on their hard earned money to me, lovely of them but I'd rather it was used to make sure dad is comfortable, and he would never have expected me to sacrifice now for some 'promise' of future money - he has always paid his own way

    so although I appreciate that you don't want a care home to get your MIL's money, that respite and day care is expensive, and carer visits cost £20 an hour, my guess is that she and her husband expected to pay their way in their lives and didn't expect their children to sacrifice for them; if you lived with her, you would pay your way, your share of bills so that she wasn't out of pocket and pay for any care you needed - why not use her Attendance Allowance and pension to pay for extra care for her now to make her life and yours more manageable

    your business is clearly important to you as the person you are and is a connection with the larger community - starting up again in the future will be costly and difficult, no doubt - please try to find a way to keep it going, whether or not you keep caring for your MIL at home

    that's all from me

    I have nothing but respect for the amount of care and caring that you provide for your MIL - just don't forget yourself, you are amazing and deserve to have your needs taken into account equally
     
  5. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    A bit at a tangent, but promoted by little shettie's comment about using mum's attendance allowance if she needs to...

    Nobody who is caring full-time for a relative should feel any guilt or reluctance about using AA or indeed any of that relative's income/savings to fund a share of the household bills or any of the relative's other personal needs. Everyone has to pay for their own living costs if living in their own home. Why should they not contribute to household expenses if they are sharing s home with their carer?

    AA in particular is surely intended precisely to meet care and support need, not to just stack up unused in the bank.

    You are already giving so much, you don't need to financially subsidise as well.
     

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