1. Pixiedust1

    Pixiedust1 Registered User

    Jan 4, 2016
    My mum is 65 and has recently been diagnosed with early on set Alzheimer's, I live at home with both my mum and dad and I'm my mums main cared but my dad says that I am not allowed to have a life nor can I stay at my sister for one night every now and then for a break, my mum gets confused when watching the TV and sometimes gets angry with me for no reason but my dad doesn't understand that I need to take a break for my own well being.
  2. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    Welcome to TP but sorry you have had to come & find us.

    When you say you are your Mums main carer do you mean you get carers allowance?
    Is this why your Dad thinks you are not allowed a break? To qualify for carers allowance you have to be caring for someone for 35 hours a week (or more) Everyone needs a break from caring & it is a good idea that you go to your sisters at least 1 night a week. I presume your Dad is working & you aren't? If so why is he not taking over when he comes home at night?

    You are entitled to a life outside your caring role, in fact it is necessary. If I have got the wrong end of the stick or have presumed too much, forgive me.
  3. Lawson58

    Lawson58 Registered User

    Hi Pixie,

    I am so sorry to hear that you are in this situation. I am really concerned that your father is being difficult about your having a short absence to have a break and without knowing all the details, it actually sounds a quite an unreasonable thing to expect and sounds as if he is being very controlling.

    Unless there is some particular reason for his objections, I think you both need to get on the same page sharing some of the care and giving each other a little time off. He may well be experiencing some problems coming to terms with your mother's diagnosis and may indeed be rather fearful of what lies ahead but he certainly can't tell you what you are allowed or not allowed to do.

    I would be interested to know if he has always been like this or if the behaviour is new.

    There will be others along who will be able to make some suggestions about what additional help is available for you and what other steps you can take.
  4. Pixiedust1

    Pixiedust1 Registered User

    Jan 4, 2016
    I look after my mum from them moment we wake up to the time we go to bed, my dad thinks I'm not allowed a break because he looks after my mum through the night for example if she wakes up for the toilet, the behaviour is new I think it's down to the fact that he hasn't had to care for someone with Alzheimer's before whereas I've seen it before with my nan.
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Pixiedust1
    Yes, it seems your dad is scared out of his mind (hardly surprising) and maybe as he can't control what's happening to his wife, he's trying to control other aspects of his life and that includes you - it's also not unusual for parents to rather assume that their children will just step in, drop everything and do the caring especially if the child lives with them (not a criticism, just an observation - my dad was a strange mixture; said it was he and mum against the world, but left everything to me when I was around)
    Have you applied for Carer's Allowance (if your mum receives AA and you care 5 hours a day, you qualify)? Built into that is the expectation that carers will take time away from caring - I didn't realise this and cared for my dad for over a year without a week away from him, when I cancelled the CA as dad had gone into a care home, the DWP phone person was very surprised.
    Also contact the LA for a carer's assessment - part of that can be to offer YOU chances for respite care for your mum to cover for breaks for you.
    So breaks are (notionally) built into the caring system. You might try pointing this out to your dad, to let him see that no-one is required to care every hour of the day -not him, not you. Actually, no adult is legally required to provide the care for another - it's just that we chose to or take on the role due to circumstances.
    Also the Attendance Allowance is just that, an allowance to spend on ways to help care for your mum - could be day care, for instance, or a sitter to come to your home. Maybe a couple of days with your mum at a day centre would allow you and your dad some time to do whatever you want for a few hours - he needs a break too, but can't rely on you providing all the cover for him. You can contact your SS/Adult Services to look into this.
    Your parents are fortunate to have such an understanding, caring and knowledgeable daughter :)
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hi Pixie
    You can take a break and you need to take a break so that you can care for someone properly otherwise you will become exhausted and resentful instead of happy and comfortable x

    I don't know if you have any information about services that are out there to help you and your Dad look after mum but these are just a few basic things. The helplines will give you more detailed info and Age UK will often send a volunteer to help with forms (and you really do need help with forms trust me!!)

    You can ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly a few hours here and there is a good idea to help you recharge your own batteries and to give your mum a different face. You do this by phoning the Adult Social Services duty desk and explain that you are caring for your Mum full time and that you need a carers assessment.

    You might be able to access a local day centre maybe one or two days a week - that would give you both a break too and give your mum some new faces to see and a chance to make some friends - another question you could ask social services

    If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that you need (not the help that you get ). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081.

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.

    The Dementia helpline is a useful number to have and they will give you lots of help and advice tailored to your needs and circumstances

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    Do keep posting and let us know how you are getting on and I do hope you get to your sister's for an evening or a night very soon x

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