Giving up work to care for MIL

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

  1. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    I have thought long and hard and this morning i have decided i am going to have to give up my business to look after my MIL . She has lived with us for 3 years ,but it has been getting harder as she is now incontinent both ways and it came to head this morning when i got up to find she had took her pants off again and put then in the sink covered in No 2. , the toilet was covered some on the floor . I followed the smell to her room where she sat with day clothes on ,her night dress on the bed covered in NO 2 and on her slippers the cream carpet and bed lining. I made her take clothes off to find No 2 all over trousers as she had no pants on . I shouted husband ( who fell back to sleep) with out getting up he has a cold. I cleaned his Mum up , scrubbed the carpet and then yelled at my husband it was that or yell and his mum. As i needed help. He rang in sick , i burst in to tears , have decided to close my business giving 8 weeks notice.
    Does any one know what i can claim we claim attendence allowence and coucil tax reduction and guessing i can claim carers allowence now but £62.50 wont cover what i earned although paying some one is not an option at £20 /hr is more than i earn. .Just wont to scream . Out daughter is in last year at uni and now i not going to be able to help her , will have to use savings.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Hi balloo
    if that is your decision, then I wish you well
    you already know just how hard it is to care for someone full time - your post gives evidence of your situation and just how much you are doing for your MIL - and you know the situation will not improve in fact
    I wonder how often this happens, though:
    with or without a cold, something tells me you would have had to get up
    we are all human, but if you feel like this now
    how about when you are there 24 hours a day?
    I am not at all surprised - I would too
    but is your real torture because
    You have done so much for your MIL - your daughter, though, is your daughter - should she not be your priority?
    I appreciate that care homes in your area are expensive - but your MIL will be self funding and it will be a wise use of her finances to have her supported
    to have you able to continue your business and your life
    to have your daughter helped by you in a key year in her life
    to keep YOUR savings for your needs

    would your MIL truly want you all to make these sacrifices
    in fact, to be blunt, it is YOU sacrificing for your husband's mother

    Apologies if what I have written is out of line
    I just want to offer an alternative as your post is full of such distress, frustration and sadness

    very best wishes
     
  3. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    we have MIL living with us and has been for 3 years , we said from day 1 she is not going in a home ,i dont see why because she worked hard and saved hard and has good pensions which she is taxed on why should she loose it now. to be honest her son inherts all so sorry care homes are not getting is just because govenment are **** and people who work had get nothing in old age but people who dont save and work get everything.We can live on my husbands wages with tightening our belts. MY daughter should be ok we can still help , we pay her rent any way so her loan covers food as it does not cover rent. i sent her with plenty of food and when she comes home we send her with more . She is family and family comes first, its a hard choice because i look after children one of which was 2 weeks old when i started looking after her she is now 6 almost 7 yrs old, it will break her heart.
     
  4. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    362
    I think you should have been claiming attendance allowance for some time, but it's your mil who claims. You can claim carers' allowance only from when attendance allowance starts, so you need to get that and then put in the carers' allowance claim.

    As there are already two of sound mind adults at your address, you won't get a council tax reduction; you'd get it if there was just mil on her own, or just one of you and mil.

    What is your mil's financial position? Or have you said and I've missed it? You should ask for a social services assessment for both you as carer and mil as cared for.

    I had no 2 on cream carpet syndrome when Mum was ostensibly going to the loo ok, but her bowel was full, what was coming out was "overflow", sepsis was setting in and she was, to all intents and purposes, away with the fairies. A week in hospital and a few enemas returned her to her usual level of dementia.

    That said, I wholly agree with Shedrech's remarks.
     
  5. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    Hi balloo

    It doesn't sound as though the current situation can go on as your MIL needs more care around the clock. However if you haven't already given notice, maybe take the weekend to think things over. If your MIL is in good physical health then you could be looking after her for a while to come so you would have think about the financial implications, especially if you are paying into pension.

    Is your MIL in day care? It would give you some hours free to continue working. Do you have any carers coming in that could get your MIL washed and dressed? I know these things cost but depending on your MIL's saving and with attendance allowance, it could be a bit of bridge to allow you to work reduced hours whilst still caring for her at home?

    If you enjoy your work it's a big thing to give up. You have had a dreadful morning but if you can give yourself a bit more time, there could be other options to try first. If you are going ahead, good luck and I really admire you as I know I couldn't do it.
     
  6. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    882
    Middle England
    #6 Hair Twiddler, Jan 22, 2016
    Last edited: Jan 22, 2016
    Hi Balloo,
    I agree with Shedrech if that is your decision then I too wish you well.
    But, is it your final decision?
    You do know how difficult caring for your MIL is, you have up to now fitted it into your working life, around your husband's and your daughter's needs. Suddenly an element has changed - incontinence has come along. It will not go away, it will soon be everyday. Can you really cope with this by yourself at home with MIL all day, everyday, Saturday and Sunday?

    I ask this as it is somewhat of a "red line" with me. My mum lives with us, I have a hubby who is little help day-to-day with my mum, our 2 children are teenagers and I ensure that they are exposed as little as possible to mum's difficult behaviour. But that is all it is - difficult behaviour, mum isn't incontinent. If she does become so, then I have admitted to myself that I could not cope with it here within our family home.

    Only recently I've discussed the matter with my GP who is very understanding and very supportive of my reasons and mindset - this has cemented my resolve (some might say hardened).

    I will know that I have done the best that I possibly could for mum and will be at a point when I can no longer be "a team of one", mum will be found a place in the best care home I can find to suit her needs. Perhaps you could consider a similar way forward for your well being and that of your family including your MIL?

    Best wishes.
     
  7. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Carers Allowance will probably be the only extra payment you can receive. All councils are now in such financial difficulties that they charge for everything they can charge for and anyone with more than £14000 or thereabouts has to pay for all services to at least some extent.

    It is a shame that people who have managed to save have to spend their money on care but I can see why - with the large and growing numbers of elderly and infirm people in the country that would never be affordable even if a government more sympathetic to the situation came into power. Care and homes are a massive industry now - I'd like to see them as services rather than profit making businesses but that is never going to happen so at least I want to see carers getting a decent wage.

    I am happy to see my mum's money used for her care despite this, as I like her to have a comfortable home, flowers in her vase, good quality frozen meals, special treats, clean clothes in good condition. All of this costs more than it did when she was able to manage on her own as I cannot provide this without carers so her money pays for carers too (around £14 an hour in her area, through an agency) - and if she moved into a home (which she will when she can't live at home anymore) I would want this to continue so I will look for a very good home where she has the best possible situation.

    I realise that this is not how you feel as a family about the care you want for your mother in law but if you did it would be completely acceptable. If you change your minds about using her money to pay for good quality care you would be doing something completely reasonable.
     
  8. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    515
    You say that your MIL has a good pension and savings - if her care needs have increased, perhaps she could use some of that money to pay for a few hours care to take some of the burden off you. If you give up your work because she needs care then all the financial burden is falling on you (and ultimately your daughter), which doesn't seem fair if your MIL has her own income.
     
  9. Beate

    Beate Registered User

    May 21, 2014
    11,732
    Female
    London
    I had to give up my job as it was no longer compatible with looking after OH, even with Day Centre and sitting service, as he needs constant supervision. I feel happier now that I have time to take him to appointments and can go to carer meetings and don't have to justify any time off to an unsympathetic employer, but financially it's of course a disaster. I get Carers Allowance but don't qualify for any other benefit as apparently I'm too well off.

    Please make sure that you get more help - no one can look after someone 24/7 on their own. Contact Alzheimer's Society, Age UK and the Carers Centre for emotional and practical support and advocacy. They can tell you everything you may qualify for.
     
  10. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    #10 RedLou, Jan 22, 2016
    Last edited: Jan 22, 2016
    Do think this over carefully Balloo, because once done it will be harder to get back. If he's not helping you with his mother now, is he likely to help more if you're officially designated the 'carer.' ? Will that annoy you? Suggestions of using her pensions to pay for carers to come in may be good ones? How about a laundry service?
    Just to add - I did not give up work voluntarily to look after my father but his needs took a terrible toll on my work (I'm self-employed.) I found the work I was able to do helped me feel like 'me' rather than the person who got ordered around and did the thankless stuff while he made a fuss of my brother!
     
  11. mancmum

    mancmum Registered User

    Feb 6, 2012
    390
    Will attendance allowance last?

    I look after my father. He is easygoing, his needs are met and he does what I tell him. He has no short term memory at all but trusts us. I have got it relatively easy but its still hard.

    He is well off. Worked since he was 14, saved all his life. My mum watched the debate on the care home cap and was disgusted...said she wanted to reduce their capital and then she died before she could do it.

    I would not put my dad in a home. Largely people here warned me off but I was working for an underresourced charity and I had had enough ..so I am not a total angel. I thought the government announcements on care home fees set my decision and then they changed it. No cap till 2020...four years away. Then they changed the pensions. Fortunately Carers allowance will just take me over the minimum for a new flat rate pension but then I found out they would deduct other years so I will get about 40.00 a week. I am worried about the change of Attendance allowance money being given to local councils. I suspect they take attendance allowance from self funders.

    On the plus side I was at home when some of my young adults needed support. My middle son got a job on the strength of care he had given his grandad and will hopefully become a social worker - and have the benefit of this experience.

    The kids have seen how a family can care for each other and that is good. But my husband has a good job and I have been able to pay the adult kids if they have taken on hours of caring from father's money and now I employ someone using his money to gives us something of a break. I am nearly into year three but my life is on hold. Respite is hard to get even if you have money.

    My husband and I had the discussion before it was needed and decided we could support our mothers but not have them to live with us but we could have my father to live with us.

    Good luck
     
  12. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    108
    I think you have done an amazing job balloo having your MIL live with you for so long. I couldn't do it. Perhaps I'm too selfish but I do think that the needs of your children and your marriage have to be a priority and it isn't a normal life for children having a dementia sufferer live with them. I know that sounds hard but it just isn't. And going into a CH isn't always the negative thing that people think. My parents are in a wonderful CH that feels a much better life for them than being at home with us. They go to art classes, reading groups, have pianists come in, have made friends. And yes it's using their savings but it's their money and needs to be used for their benefit not to be planned for an inheritance.

    I know everyone has different views and the situation is different for everyone but I would seriously think about the impact on all of your lives and whether there might be a better solution. I do agree with what Shredrech has written.

    Good luck with it all as I know it is really hard. And you are definitely entitled to Carers Allowance / Higher Rate Attendance Allowance etc.
     
  13. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    thanks for all replies . i know what care homes are like a close friend of my family had things stolen by staff after she died . we had to threaten with police and majically they came back . i don't see why we should pay for careres with MIL money when i could do a better job. would be less stress as i would not be on a time limit to clean up the mess.my husband cannot deal with personal care for his mum but he did do this for my mum. DAy care is very limited where we are and care agencies . we have A SITTER from age uk that is wonderful. how can you get a carer in if MIL is going to do what she did this morning and mess bathroom etc she does not go by a clock and it would me she would have to sit in it for some time at least this way i dont have to put up with the smell for long.
     
  14. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    873
    Are you a foster carer?I would reiterate what everyone else has said,think very carefully before you commit to this.The system of paying for care maybe unfair but I would rather have some quality of life than any amount of inheritance.This won't get any easier and could go on for years.My father was diagnosed at 84,will be 95 soon.Could you give up your life for that length if time?There is some help out there,very much depends on where you live but it is means tested.
     
  15. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    no i am a childminder , i used to work 52 hrs a week but am down to 15 now so not really worth it. Am looking at restbite but £2000 for 2 weeks and thats minmum in local dementia home and it cannot be booked so whats the point.
     
  16. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    873
    Just to add,there are some excellent care homes out there,it tends to be the bad ones that get publicity.My mum was and my dad is extremely well cared for.Certainly much better than I could have done
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Hi Balloo
    You've clearly given this a lot of thought and as you are a childminder you have a lot of experience of caring (not to mention to the time you have already spent looking after MiL). My only concern for you would be that you will need some respite - however you do that, even if you have a live in carer whilst you and hubby go away for a few days or a week and even if it does cost a bit to do it. If you can plan some respite in at least you will have some balance in your life. Shame there isn't a day care centre but if you are looking after her full time perhaps she could go to something a bit further away once or twice a week.

    Good luck and keep posting xxx
     
  18. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    I have decided to give it another week before i make my mind up .if i can stuggle along until june my daughter will of finished uni .
     
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    you take care of yourself xxx
     
  20. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    244
    Just a thought -- dementia is a progressive degenerative disease so it's likely your MIL will get worse and the situation you describe sounds pretty awful now. Do you really want to care full time for someone who is only going to get worse? Where will your respite come from? How will you manage on what is likely to be a reduced income? Do you want to be stuck indoors with her around the clock?
     

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