1. doobedoo

    doobedoo Registered User

    Dec 4, 2014
    Really concerned, I work part-time and today is one of my longer days, got home and hubby said he had been knocking on the neighbours doors to ask them for a cup of tea and a biscuit!! He was diagnosed with Frontotemperal Lobe dementia in February but since his diagnosis he's behaviour seems to be rapidly deteriorating. He is quite capable of making a cup of tea and the cupboard is always full of sweet stuff as he has a terrible sweet tooth. I really don't want to give up work as I love my job and I'm what I think is young 56, but I know he's only going to get worse so what do I do? We get no benefits whatsoever so we would really struggle if I had to give up. Has anyone had this problem and is there a solution?
  2. daisydi

    daisydi Registered User

    Feb 25, 2015
    I gave up work to look after my mum a couple of years ago. I am a similar age to you. It was not a good thing to do and I really regret it now but I couldn't see any alternative at the time. The only thing I can suggest is day care which we eventually did for my mum and she is now in full time care or dementia friends to come and sit with your hubbie. I'm sure other people on here will have plenty of advice for you.
  3. marionq

    marionq Registered User

    Apr 24, 2013
    Giving up work would be very bad for you financially in the short and long term re pension contributions, savings etc. Worse still at an early age you would be cut off socially. I think you need some serious advice about what help social services can provide. Phone Age UK and have a chat with them about what might be available in your area.
  4. doobedoo

    doobedoo Registered User

    Dec 4, 2014
    Thank you, I will contat Age UK. I really don't want to stop work as I work with learning disabilites and love my job, but finding it hard work caring for hubby, I feel awful as he is oblivious to how he's behaviour is having an impact on me. I had a carers assessment but have no idea really what that means or what happens after that. I'm waiting for a financial check, but again I've no idea what that will mean. At the moment I just feel lost and bewildered with all the different agencies. Hubby gets a small work pension but there is no way we could manage on that.
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    Hi doobedoo i don't your husbands age but I was diagnosed with Alzheimer's in 1999 & after several conversations with consultants I have a PET brain scan in 2003 repeated in 04 which showed loss of volume on frontal lobes so the diagnoses was chance to frontal temporal dementia , re: work I continued to work in full employment for 8 years until my retirement age 65 , and now after 16 years still going strong in myself No different from my first diagnoses in 1999 so it's doesn't necessarily mean dementia is all down hill hope this helps in making your decision obviously every person is different I can only speak how FTD is and has been for me over the years

    Cheers Tony
  6. malc

    malc Registered User

    i'm 48 caring for my wife who is 45 with alzheimer's,i had no choice but to give up work,she is terrified if she is left on her own,has epileptic symptoms so can't make a drink(shakes so not a good idea),so i'm 48 with my wife going down hill,no job,shortfall on life insurance,house that won't sell and probably stuffed concerning my pension,but we manage,if you don't go very far you don't spend a lot.
  7. marionq

    marionq Registered User

    Apr 24, 2013
    Being bewildered with the number of contacts is an issue. I advise you to start a list (I have mine at the back of an A4 diary) of all the people you deal with. Ask their first and second names, phone numbers, their position and who they are employed by. This is the only way you can keep track of what will be a long list by the end of the year. You will learn who is reliable and who you can contact again for further help. Some are nice but useless and sometimes you get a pleasant surprise. Good luck.
  8. kingybell

    kingybell Registered User

    Feb 3, 2015
    Could you claim for ESA and PIP payments for him?
    My mil gets about £1200 per month in benefits but she is in her own. She is 56 and also gets the interest paid on her mortgage.

    The process is not easy (I spent months applying).
  9. kingybell

    kingybell Registered User

    Feb 3, 2015
    I know people on here love age concern but my local one were not very helpful. They said as she was under 65 they couldn't advise or offer us any support.
    They just sent some flyers through on local groups. I was very disappointed with them,,
  10. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    If Age UK can't help, the local branch of Alzheimer's society and/or CAB should be able to.
  11. Beate

    Beate Registered User

    May 21, 2014
    I gave up work but that was due to my workplace not willing to accommodate shorter hours. I did and do get a lot of help through social services, with OH constantly either in the day care centre or with a sitter while I was at work. It is possible but it was still exhausting, and work resented time off for appointments or emergencies. If you want and need to stay in work, insist on support like this - social services have a duty to assess you and a duty of care. You as a person cannot be forced to look after another and they know that.
  12. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    #12 Pickles53, May 13, 2015
    Last edited: May 13, 2015
    Don't do anything in a hurry. Might be an idea to talk to your boss and see if they can help in giving you some flexibility in the short-term so you have time to sort out what help/support your husband (and you) need. Emphasise that you want to continue working. You may need to take some holiday but some employers do have 'compassionate' or 'special' leave for any kind of crisis.

    When you talk to SS, start from the point that you are going to continue working, and that plans have to be made which take that into account. Not just for financial reasons, though these are vitally important for both your future and your husband's, but because your life matters too. It is not in any way selfish to say so.
  13. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    I give upwork my self

    hi im dislex so baer with me on this. . My wife was only 58 her self .when she was dignosed with lewy body dementia. I to had a job that i like very match . And did not want to finnsh . My s/worker heelp to get me pip benitfit . For my wife £ 554 a month. Big help. I had a well payd job at the time .stll very young my self 62 old .. This illness missing evry thing up . You life has well.
  14. john51

    john51 Registered User

    Apr 26, 2014
    Dunstable, Bedfordshire
    View from someone with dementia

    I was forced to retire from work in October because I have dementia.
    I really feel for you with the problems you have with your husband.
    I wondered if any of the prompts I use might help with the issue you wrote about.

    We bought a role of white board film which sticks to cupboards and other surfaces with static. My wife writes messages for me when she has to go out reminding me of things to do, like drinking. she is very worried that I get dehaydrated.

    My other big friend is the calendar app on my smartphone. My wife sets up appointments on it. The reminder tone which I have is that it yells Oh No which makes me look to see what the problem is and then I see messages like make a drink.
    Maybe if your husband had reminders like this he might not panic and need to go to other people.
  15. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    He might just be knocking on the neighbour's door because he's lonely and it's a way of interacting with other people, sat at home alone day after day can't be much fun.
  16. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    He may have got to the stage that if he can't see something he doesn't know you have it. I would leave him out a tray with tea/coffee/milk /sugar etc and see if that helps
  17. polly1

    polly1 Registered User

    Dec 8, 2011
    Hello Nellbelles
    I think the link you posted only relates to Southern Ireland!
    I am in a similar predicament. My husband has PCA and was diagnosed 3.5 years ago. I work 21 hours each week. I need to work both for financial reasons and for my sanity. I will need to pay for a carer or a sitter in the not too distant future. Absolutely dread and fear what lies ahead.
    My employers no longer offer Carer Breaks from employment. It is a nightmare.
  18. Reds

    Reds Registered User

    Sep 5, 2011

    My husband goes and knocks on my neigbour's door and she has complained a couple of times! She sent me a message saying 'can I always take him with me'!! Felt hurt by this comment as her mother had Alzheimer's! just like my hubby.

    Not just because of the above but I try my best to not leave him alone at all but not always able to do this. I have put three sorts of weekly day groups in place for him. Sometimes my brother-in-law looks after him and takes him for a walk. Whilst hubby is at the day groups I get my shopping etc done so that I don't have to worry what he is doing. Luckily he does enjoy word searches etc.

    If I do go out I make sure he has things to do even if its something on tv he is interested in or something he can do in the house. I give clear instructions to him and remind him not to knock on the neigbour's door as she will complain. I try and make sure he has biscuits or chocolate or something to enjoy. He can't resist finding someone to joke to but I discourage it as much as I am able.

    I am afraid I did have to give up my job and whilst the future is daunting I just have to keep telling myself we will manage somehow financially and will just have to see!

  19. patchworkamber

    patchworkamber Registered User

    Jan 6, 2014
    south east wales
    After having 4 months off work i went back this week part time,I am 53 hubby 68. It felt like I was a whole person again. I told our social worker that i needed to go back after hubby's hospital admission and decline in the Vas dementia. I have direct payments so can choose my hours and employ two carers that hubby likes to come to the house and sit/look after him. It has been gradual and he has slowly accepted carers in the house. Do work as long as you can and find out your entitlements and be bold in asking. Don't ask, don't always get!

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