? Giving up work to care

Discussion in 'I care for a person with dementia' started by CAL28, Jul 24, 2015.

  1. CAL28

    CAL28 Registered User

    Aug 25, 2014
    Hi, my mums Alzheimer,s is getting worse and needing more help and my Dad is needing more support . I am considering giving up my part time job and being her carer and supporting my Dad. Have other people done this and has it worked?
    Also confused as to what benefits I would be able to claim apart from carers allowance. They will not consider having anyone in to help but they allow me to help out which I am happy to do.
  2. balloo

    balloo Registered User

    Sep 21, 2013
    my MIl lives with us I have now gone P/T and will in end have to give up to care full time for her .she claims attendance allowance and when I give up will get carers allowance of less than 100 a week . we also get 1/4 off council tax as her carer.
    when I give my other half said I could use her money as mine as I am self employed . I think you can get credits towards pension but not sure . This is coming closer for me and to be honest dreeding it .have worked 12 years to build up my business to then loose it all.
  3. Beate

    Beate Registered User

    May 21, 2014
    You can get Carers Allowance of £62.10 per week if you care for more than 35 hours a week and earn less than £110 a week. The cared for must be in receipt of Attendance Allowance or equivalent. CA will also give you NI credits.
    Any other benefits depend on your circumstances ie how many savings you have etc.
    Any charity like Age UK or Alzheimer's Society will help you find out your entitlements.
    As for using her money as your own: NO. ABSOLUTELY NOT. THAT WOULD BE FRAUD.
    So think about this step long and hard. Find out first what Social Services could do for you. They have duty of care. You do not, and you have a right to your own life.
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I do not know how old you are, but I think it is also worth considering what will happen at the end of your caring role. Will you be able to return to work? Where will you live?
    I have given up work to care for my husband (receives DLA) and I can also look after my mum who is in a CH. In my case however, I am nearly at retirement age and have taken early retirement. Also, the house is paid for.
  5. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    My mother moved in with us 4 years ago and I gave up my job 6m later. She didn't need much care at that stage but I could see what might be coming and caring wasn't compatible with a full time job 100miles away from home. Does it work? Yes, to a point. We're much poorer financially (I do some work from home but earn a fraction of what I did before) and more importantly we can't go out together as we don't feel able to leave her on her own in the house. We spend a lot of time watching out for her, I do all the domestic chores and increasingly help with personal care and handle money, medication and, most importantly, communication as she is quite hard of hearing and is beginning to show cognition problems. We worry a lot and quite frankly my mother is one of our main topics of conversation. She is becoming frail and her quite fierce indepence is increasingly a problem as she won't really accept external help even to the extent of refusing to wear a falls alarm (she can't get herself up from the floor if she falls). I'm sure you are doing it, but think carefully before giving up your job. It's not just the money (though that does matter) but it's also your and your OH's life as individuals and as a couple; you also need to be in total agreement before you take the step. Get advice on the money side - and be sure that you can cope with being a full time carer; it's not always the positive and enriching experience that some people try to say it is. We are realising, hopefully not too late, that we need to make changes to make sure we do have a life away from my mother and can do things together. Best of luck
  6. doodle1

    doodle1 Registered User

    May 11, 2012
    I care for both parents with dementia and I work part time. the advice I have had from the consultant psychologist I ended up seeing,from the memory clinic and from my oldest friend whose mother died from Alzheimer's was NOT to give up work. I can see both sides but whatever situation you are in now it is only going to get harder. Make sure there is a piece of YOU still left after the caring ends.
  7. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    #7 Suzanna1969, Jul 24, 2015
    Last edited: Jul 24, 2015
    I gave up my part time job and became a full time carer for Mum who has Vascular Dementia. She still lives at home with Dad who has Vascular Parkinsonism and is very frail. Getting outside carers in would confuse and upset Mum and Dad wouldn't be happy either. He still tries to do the garden and has ended up sprawling in the flower beds on two occasions recently, despite me pointing out that if he breaks a hip we are in deep doo doo as he'll end up in hospital (which is a truly horrendous one under special measures) and I'll have to move in with Mum as she can't be left alone. He just laughs it off. It seems denial is NOT just a river in Egypt.

    I get Carer's Allowance of £62.10 a week and get a 'top up' of Income Support which is about £45. The government reckons I can live off £107 a week. I have a mortgage on a house which I share with my brother who works full time in a low paid job (and is my rock, I couldn't do this without his help and support). I am in the process of applying for a Council Tax reduction of 25% and, if I can fathom out the forms, can also apply for Mortgage Interest Tax Relief which will be about a tenner a week.

    I will also get free prescriptions and free dental treatment from the NHS.

    My bills alone come to over £400 a month so how could I possibly live unless a magic pixie was letting me have some money? Luckily I have, officially anyway, learned to live without food, recreation, social interaction and clothing. Amazing what can be achieved. :rolleyes:

    As far as the personal impact of being a full time carer is concerned, I do really crave adult conversation. I don't have kids but I should imagine this, in part, is how it feels to be a full time mum - my days are filled with 'baby talk' ie I have to watch everything I say to my Dad in case he gets upset about 'burdoning' me and I have to talk to my Mum like she's a child ('Have you cleaned your teeth? Do you need to use the loo before we leave?' etc etc). I chose not to have kids and yet I have two octogenarian children.

    Although I've had to give up work I do try to maintain a social life of some kind for my sanity. It's a fraction of what it used to be but I see it as vital to keep a part of the old me alive. My brother is fantastic and steps in to give me respite for when I have a couple of days away seeing friends even though he works really hard too. I do find that I enjoy my time away far more than I used to because I value it far more than when it was much more frequent and a given. I also find I go a bit more crazy on those occasions too - I certainly make the most of my respite days! ;)

    I had to attend a 'Work Based Interview' at the job centre a few weeks ago as part of my application for Income Support. It was horrendous and humiliating but necessary. The woman who interviewed me was new and it was tempting to tell her that I had over 15 years' experience as a recruitment consultant and employment consultant and was more qualified to do her job than she was... I resisted of course as I need the extra money and am keen to stay 'off radar' as much as possible. I have worked in management positions and high pressure sales jobs in my career but those days are behind me now. As and when I go back to work I want to do something that won't give me any stress as I have high blood pressure, same as my parents did at my age. Obviously I'm worried about what lays ahead for me too.

    But there is no way I wouldn't have stepped up. They sacrificed so much for us while they were raising us this is the very least I can do. And if I wasn't doing this they would almost certainly need residential care which, given their very different needs, would almost certainly mean they would have to go into different care homes and be separated after 50 years. Well, you might as well shoot my Dad through the heart and give my Mum a total lobotomy. I will do everything in my power to keep them together in their own home for as long as possible.

    So, to summarise, what you are proposing is a tough road but you know in your heart if it's the right one, or indeed the only one - for as long as you can manage it anyway.
  8. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    I had worked 4 days part time for quite a while, due to my husbands health issues but he is in remission and quite independant now so doesn't require a lot of looking after.
    When my Mum was diagnosed with Alzheimers in 2013, the added pressure of hospital and doctors appointments and extra supervision, was a bit overwhelming so I reduced my days from 4 to 3 and changed my hours.

    My parents live in their own house behind ours, and despite being there on hand, Mum is increasingly needing supervision as Dad does not understand or have much in the way of coping skills with Mum. He has cognitive impairment.
    I know if I was to give up work completely, Mum would have a much better quality of life. Apart from 3 days a week when she goes to an Alzheimers activity group, Mum is in front of the TV. There is so much Mum cannot do anymore that TV is her only pleasure. That and food. The extra eating means she is gaining weight at a steady pace.
    Giving up work would mean, I could take her out more.
    Supervise her more, where she isnt in total confusion.
    Play music, play games, do puzzles and basically keep her more occupied.
    This in turn would take the pressure of Dad and he would be less irritable and the pair of them would argue less.. BUT

    Working is my only respite.
    I enjoy my job, I have been there 25 yrs. I like havng that independance, and my work colleagues are great.
    Also, in New Zealand we do not get any regular financial assistance for caring, as it is income based, so my husbnds income would be assesed. Financially we need the money.
    We have two teenage a children, one of which is about to start university.

    Before you decide to give up work completely, is it possible to take a leave of absence for a few weeks or a month to see how it goes?
  9. balloo

    balloo Registered User

    Sep 21, 2013
    sorry but we have no option nursing homes I would not trust from what I have read and had dealings with before although not local to us .Also she would be self funding and no way is the government getting away with not paying for her care even though she has paid tax all her life. We have a sitter from age uk 3 times a month free she is a loverely lady my MIl likes took a while for my other half to accept but I had to insist as he goes out to work and we need time together away from our home .
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I should like to point out that not all care homes are awful abusive places. Mum is in a CH where the staff are genuinely fond of her and she has thrived.
  11. mancmum

    mancmum Registered User

    Feb 6, 2012
    I did this ..although I didn't plan it in advance

    I had planned to carry on a v high stress well paid professional job and would get carers in to take care of father during the day.

    It rapidly became apparent that because I know father I was the best person to calm him down when he was worrying about x y and z. Work gave me a month to make up my mind. I only finally gave up work when I was certain that he was not going to spend his time trying to get back to his old house.

    Money is a huge worry. I have supported myself (and at times the family) since I was 18. I get carer's allowance of 62.00 and nothing else - my husband is working.

    I could only do this because his retirment in now on the map (and likely to coincide with father's final decline). I would not have done this at all if I then later planned to return to work unless I would have been content with doing care work. I spent years working towards my well paid job and I was never going to be able to get it back.

    My real worry is that o government will change the rules again. I currently get credit towards my pension. This is critical because the new flat rate pension is only going to be paid to a small amount of people and I am not one of them. This information was not really in the public domain until after I gave up work.

    I had expected that carer's allowance would be taken from those married to wealthier husbands or caring for someone with signficant funds, but it seems to have survived.

    I would actually max out on the entitlement you have to leave for family emergencies if you can to make sure that this will work for you before finally stepping away from paid work.

    The new care act which was supposed to recognise the needs of carers seems to have resulted in my pathetically useless local authority using this an excuse to take individual benefit away from carers. So don't count on getting that.
  12. emz_33

    emz_33 Registered User

    Oct 25, 2014

    I gave up my job and home to care for my mum and sister. Mum had dementia at the point that I gave up my job we didn't know that she had dementia, just knew that was was no long able to care for my sister who is on the Austic spectrum. I have lived with them for three years now, went from earning 1300 per month to being on carers allowance and income support, my situation isnt normal. Both mum and sister suffer from extreme aneixty which and lead to both having behaviour issues. And I felt that I was the best person to be able to handle both of them. Even though there was some very bad days the good so out way all the bad days. Only advice I can give is to think about it carefully, weigh up the finances maybe look into what help you will actually get like housing benefit council tax. Do a pros and cons list too. Friends tell me that I'm crazy for doing it as I don't have a life, my family is my life.

    Take care
  13. Pete R

    Pete R Registered User

    Jul 26, 2014
    It worked for me in the sense that my Mum was able to stay at home for many more years than if I had not cared for her.:) I would not change that.

    However the quote from canary below is very relevant.......
    ....in that now my Mum is in a CH I will be made homeless and am unable to return to my previous profession due to the amount of time I have been away.

    I applaud you for what you are about to do but make sure that you are financially and physically/mentally looked after as well.:)
  14. Skyrim

    Skyrim Registered User

    Jun 19, 2015
    Giving up work?

    As mentioned above, you have a difficult choice to make and only you will know what is right for you. My partner gave up work to care for his mother and has to exist on the carers allowance plus a little income support top-up. We don't live together....for these sort of financial reasons.....so he can get the max from the taxes he has paid all his life. i provide an equal amount of care but work flexibly and absolutely refuse and couldn't afford, to give up work, although I'm currently off sick with stress. That should tell people something about either option!
    I am firmly of the opinion, having worked in this sort of field for some years, that you cannot rely on the support you currently think you would receive, to continue. You should base your decision on a "what if there is nothing?" scenario. Please look carefully at posts about the withdrawal of respite for example. Another concern I have is that LAs will up the charges for things like day care....we already spend the whole of MILs attendance allowance on 2 days a week at a centre so, if my carers assessment says we need more "break time" I wonder where that funding will come from.
    Think very, very carefully about this before making a decision as you may be unable to draw back from it.
  15. nov14

    nov14 Registered User

    May 27, 2014
    Goostrey, Cheshire
    Helpful website

    Someone from my local council suggested that I use the following website to see what benefits I would be entitled to if I have to give up work. It does seem quite helpful.

  16. beckibee

    beckibee Registered User

    Jun 20, 2013

    I reduced my hours just over a year ago to 10 hours so I would be then entitled to carers allowance. I care for my mum along with my dad, I have a husband and 2 teenage daughters. To me it was the best decision for my parents, I can give my mum the best care no rushing we do virtually everything in her time she needs help with eveything she does, she is still mobile but has no understanding of what is asked of her. My mum gave her time to me when I was growing up and then looked after my children when I was as at work so this is my chance to help her. While it is not always easy it is extremely rewarding, my family are very supportive of my decision. My dad gets to have a bit of space, he walks my dog in the morning which gets him out and about, he is a very sociable person but since my mum got this dreadful illness he doesn't get to see as many people and of course people stop visiting- why is this???
    I feel good in myself knowing that my mum is getting great care, I would have been a wreck letting others care as you don't know whats going on.
    See if you can reduce your hours temp at work or stop for a short time to see how it works out. My work just keep extending my reduced hours so if anything changes I can go back to my old hours.
  17. CAL28

    CAL28 Registered User

    Aug 25, 2014
    Thanks for replies. I am still undecided what to do. I so want to help my parents as I can do lots to help them both and my Dad lets me help. He would never have carers in and Mum loves having me up there and is happy for me to bath her etc. Unfortunately my work isn't very sympathetic!!!!
  18. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Would your Dad or Mum want you to end up in difficult financial circumstances because they won't consider any other form of help? Do they even appreciate the implications if you give up work? Only you can say, but I wouldn't want my daughter to risk her own future when I could perfectly well afford to pay for my own care.

    It's to your credit that you want to put their needs first and shows what a loving family you are. I hope you are able to find a compromise that works for you all.
  19. Skyrim

    Skyrim Registered User

    Jun 19, 2015
    Giving up work to care

    Referring back to my ealier comments I really support you in your values about being the best person to care for your parents....I am confident that the way my partner and I care for his mum gives her exactly what she wants and needs, at the moment, but we do face stresses. The most important of these is the absolute lack of quality time together and you realise this when the only outings you get are late night trips to the supermarket!

    At the same time, I've worked in care professionally and understand reservations about the system; like everything else it can be hit and miss as to the quality of service you receive and, unless you have control through a direct payment. Y don't have much say over the staff who come in. (Btw, some of us are very, very good!) But, from my experience, it is the Local Authority who let us down with the constant fobbing off "pending assessment". I could do with some help around the house, occasional respite and a guaranteed set time that I could spend with my partner without clock watching or the implication that I am being unreasonable in wanting to be out after 10pm ( for heavens sake...!!!). We are also still waiting for a direct payment arrangement-after 8 months.

    Perhaps you need to push for that assessment and get an idea if there would be any financial support that can balance giving up hours at work. At the same time you have a legal right to request flexible working ( see .GOV.UK, NHs choices or Citizens advice). Unless the employer can demonstrate their business would be adversely affecte, they are obliged to comply with reasonable requests.
    Other posters are right, your parents wouldn't want to see you struggle, regardless of your feelings about what they have done for you ( and we feel exactly the same) so you have to find that acceptable, happy balance that works for you and that does include you taking a sensible look at your own support network and how you can build on family/money/services to support you n this undertaking, both now and in the future.

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