where does all the time go?

Discussion in 'ARCHIVE FORUM: Support discussions' started by angelaby, Feb 21, 2007.

  1. angelaby

    angelaby Registered User

    Apr 5, 2006
    I cannot believe that it was early Dec when I last came on this site. Even that makes me feel guilty! There has been so much to sort out and some things are still not sorted.The story so far-
    Mum was diagnosed with AD over a year ago. She lived in a bungalow about 5 mins from me and I worked full time 3 miles away. I had worked for this company for 5 years ( a large tour operator) and escaped several redundancies but the final straw came when the part of the company I worked in was going to relocate 30 miles away. Before the announcement was made I had asked mum would she like to come and live with me. All my decisions had been based on being close enough to get home at lunchtime as mum had started to forget to eat the lunch I had left for her. I had also asked about carers flexibility.There was an exceptional circumstances criteria set for not relocating and my first shock came when the company advised me that my circumstances were not exeptional and that I would have to relocate or leave.They classed my circumstances as no different to that of a parent seeking childcare.I contacted the Alzheimers Soc and they too felt it was totally inappropiate to categorise me like this. Well to cut a long story short I kept going back at them with the help of my very caring supervisor and gp. The meetings were awful -I cried,shouted,pleaded until they reversed the decision. It was then called a compromise agreement and my contract was terminated on Feb 5th with a small final payment.So I won that battle but not the war. I tried to apply for jobs close to home and work 30 hours and I had read somewhere that recruitment agencies were the best for flexibilty - wrong! I applied for jobs myself and stated that I would need to get home at lunchtime as my mum has Alzheimers. Should I have lied as I have not been offered one position?
    Finally as I am now too mentally tired to try any more and feel now that I have lost my fight, I have decided to stay at home and claim carers allowance whilst still hoping to find a suitable part time job. I now cannot cope with all the form filling as apparently it's all linked to income support/housing and council tax benefit of which I know nothing about as I have always worked and the thing I seem to have messed up is having savings which believe me I have worked very had to get.
    All I want to do is look after my mum until the time comes when I can no longer cope-my decision. Why is every thing made so difficult? I hate feeling like this as I have always been a doer and not a moaner but why does wanting to be mum's carer make me feel like a worthless member of society now?
    Wow - do I feel better getting that off my chest!
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Angela,
    I`m really pleased you feel better for getting it of your chest. What a lot you`ve had to cope with.
    I`ve also has no experience of all the red tape and form filling that goes with claiming benefits and I understand how you feel about them after working all your life.
    If the NHS and Social Services had to care for your Mum, it would cost them a fortune. This is what makes me so angry when the available help is so unsatisfactory.
    There are a couple of things I can suggest.
    1] See if AS has any factsheets relating to benefits
    2] Phone the AS helpline
    3]Contact your local CAB
    4] Contact Age Concern
    5] See your GP. It sounds as if your own health is suffering
    Try to keep in touch with TP. There are so many people here who have such a variety of experiences, someone is bound to be able to help more than I have. Also, even is TP can`t offer to actually do anything to help, the support is here, the concern is here and the emotional back-up is here.
    Let us know how you get on. Love Sylvia x
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Angela

    I'm afraid I can't offer advice re benefit claims, but just wanted to offer my sympathy.

    It all seems so unfair. The tour company could have been more understanding. I wonder if any of them have any experience of caring?

    It's sickening too that you can't get financial help because you saved yourown money. There is an article in today's Mail about the promise of extra help for carers


    Believe that you are not 'worthless member of society'. Or if you are, there are a lot of us out here!

    Keep in touch, and let us know how you get on.
  4. angelaby

    angelaby Registered User

    Apr 5, 2006
    good grief-twice in one day!

    Thanks Sylvia and Hazel. I will try again tomorrow to sort it out. I was so upset and frustrated this morning that I had to just get out in the garden. I was forking in the mulch from my composter and was deep in thought. I took the lid off to throw in some veg peelings and the resident garden rat was in there. I don't know who jumped the highest me or the rat!The garden is my haven and I spend hours outside. Mum and I take the dogs for a good walk every day-hail rain or shine-mum really enjoys it. Isn't it a national shame that carers cannot be paid a decent amount in order to be able to just enjoy the role chosen. Angela xx
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, Feb 21, 2007
    Last edited: Feb 21, 2007

    I have been asking myself that for 2 years and still feel like you , but am learning to live with people attitude and all that I can come up with is that if I had children and working I would get more help.

    I finally got a understanding employer then found out as I could only work for 16 hours I would get no help, but if I had children or had a disability or was 55 years old returning to work I would of get top up of working tax credit

    If I had chosen to work 33 hours I would of got working tax credit, how was I meant to work 33 hours and take care of my mother when Social services would not fund those hours while I was working.

    If I work 14.4 I would get top up to the same amount I get on income support , I was in a job that was going to pay me 22k a year 5 years a go and more fool me gave it up to care for my mother , because they where complaining that I was taking to much time of to care for my mother who back then I did not know she had AZ and my brother , oh what the hell good for you , do what you thing is best for you , you only get one mum and one life ,
  6. Ashburton

    Ashburton Registered User

    Feb 19, 2007
    Wow, maybe I am lucky living in Ireland, my mum was diagnosed in 2003, my company allowed me go part time from 2004 until 2006, by end of 2005 it became clear that my mum needed full time care, i.e. When I asked my company if I could take full time leave from work,it was with regret that they were unable to offer this, I went home and was about to start my resignation letter when I got a call from the department head informing me that having spoken to HR they had come back saying that I was legally entitled to carers leave which is set out in Irish Legislation, this meant that I could go leave for 16 months from work, receive a carers allowance which was not means tested and my job had to be kept open for me. This was a huge relief at the time. My leave runs out soon and I will be leaving work officially and continue to stay at home. Do you not have a similar scheme in the UK?
  7. Áine

    Áine Registered User

    Wowwwwwwwww!!!!!! I was offered 10 days carers leave ...... and never did get to the bottom of whether this was 10 days per year, or 10 days in the whole of one's employment, or what. And I think it was 5 days compassionate leave allowed when dad died.
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Gosh! And when my mother went into the NH, I asked for leave of absence to clear out her house before we put it on the market, and had to take it without pay.
  9. Ashburton

    Ashburton Registered User

    Feb 19, 2007

    Wow, I can't believe that, we are really are lucky here in Ireland then, I must see what political party introduced that scheme in Ireland, it actually covers all forms of carers leave not just ad,but I am really surprised you do not have that in the UK.
  10. Zadok

    Zadok Registered User

    Mar 15, 2006

    Yesterday mum burnt her hand really badly by puttting it on the electric cooker plate. It has been difficult to know how much feeling she has and how much pain she is in. Is this common? (The hospital emergancy department staff were very kind and helpful and patient with her .) I feel awful as I'd swapped her gas cooker as she was in danger of gas escapes and for 4 months or so she had happily ignored the new cooker which is only used occassionally anyway. The carers usually use the microwave.
  11. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Zadok

    It is not only Ad suffer's who do that. My youngest daughter, when we were living in a cottage, felt the plates (solid black plates) on the electric cooker, to see which one was on:eek:
    Needless to say, she had to attend the burns clinic for weeks.

  12. angelaby

    angelaby Registered User

    Apr 5, 2006
    good morning all. I woke up feeling very low this morning so decided to log in early instead of later when i will be too tired. This is because yesterday i tried to get through to several orgs by phone and email and did not get one reply so i will ask tp as i am scared i have done something wrong.Yesterday I finally read the enduring power of attorney booklet from cover to cover- the memory clinic consultant suggested this as sooner rather than later but if i sit mum at the computer and show her her bank account and transactions she seems to totally comprehend. Since she moved in with me in November we have done it this way as i pay all the bills,buy her clothes and everything else and if money accumulates in the account i have set up a transfer to my account.On reading the epa booklet it states that money has to be kept separate-she only has her state pension and a small occ pension from my dad who died 28 years ago and does not have a savings account and I'm not sure due to her AD if she could open her own savings account. It's a vicious circle now because the savings account is now stopping me being able to claim any benefits.Neither of us have any life insurance so this really is rainy day money. Any ideas?
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    seperate account

    Hello Angela

    We have a savings account for our young daughter at our bank which is in both my name and hers.

    Ask your bank if they could set one up for your Mum's money, it's probably worth visiting them to see what they have to offer.

    Failing that shop around the other banks and building societies, most of them have a lot of information on line.

  14. angelaby

    angelaby Registered User

    Apr 5, 2006
    Thanks Kathleen-will do
  15. angelaby

    angelaby Registered User

    Apr 5, 2006
    pain threshold

    mum gashed her leg on mon morn and wasn't going to tell me. I just happened to walk in the bathroom as she was padding it with a cloth. She said it didn't hurt and I did wonder about the pain threshold but then she makes quips like 'where's there's no sense there's no feeling'! While we were in A&E the triage nurse asked me about her medication and explained that the aracept was for AD and mum said that she didn't know she had AD and when did she get it. I explained again and she has never mentioned it since.
  16. Robbie

    Robbie Registered User

    Feb 22, 2007
    East Yorkshire
    #16 Robbie, Feb 23, 2007
    Last edited: Feb 23, 2007
    Financial headaches!

    When my dad started to develop dementia we took out an epa and all went well for a few years. Eventually it became apparent that he was no longer able to cope and I registered my part, taking over his finances. he only appeared to have very little in his account, less than the amount he was able to have to claim benefits. At this point we were advised to make various claims which I did. As usual DSS were over generous and we ended up getting more than we could possibly spend as he wouldn't let us buy him anything. So his savings grew and grew!We did manage to offset the amount in his account by taking out a Funeral plan, with his agreement, which also turned out to be very useful when it was eventually needed. When he died we , on sorting out his possessions, found a post office savings book that we had never known existed. When we declared this to the DSS we had to repay all the benefits they had paid him. Fortunately we had not spent much of it.

    You can't win!


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