1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. father ted

    father ted Registered User

    Aug 16, 2010
    My mother who has AD has lived with our family for 5 years. I also have a daughter in her 20's who lives at home too. She has complex needs, in a wheelchair, uses an electronic communication aid, needs feeding, toiletting etc. She had been at college during the day Mon-Fri up until last summer, now the funding has been stopped and we now supposedly have 18 hours week care for her at home. The carers often turn up late, if they go anywhere I have to take them and pick them up as no transport anymore. They change or move on frequently.

    This weekend I had managed to get a sitter for Mum as daughter was going to respite. In the last 5 years I can count on the fingers of one hand how often this has occurred.
    To cut a long strory short. My daughters respite has been cancelled. My husband and I have had to cancel our original plans. At such short notice could not find accomodation for the 3 of us in a wheelchair accessible room so I am taking my daughter on my own, while my husband does some DIY at home whilst Mum has the sitter. Looking after my daughter is tiring but she is good company and so pleased to do anything and never moans that we will have a nice time.

    I am so disappointed as I had so been looking forward to the break as I needed it. Mum can wash and dress herself but needs to be cooked for and her meds put out due to her confusion. I feel so ashamed to say that lately everything she says and does irritates me. In the week I met an old work colleague for a meal and because it had already got dark she said 'Oh its not worth going-its dark and cold and she(the work colleague) isn't even nice'! Initially when I told her we were going away for the weekend it was' Well I've got nothing to reproach myself for I was a good mother- I'm saying no more, you do what you want don't mind me!!!'

    When I say it is not unresonable to want a break/go away for a weekend she says' Oh now you are trying to twist my words and make out I am the selfish one!!
    I even resent it now if she sits up late watching TV with us as we seem to get no privacy and pulls faces if she isn't enjoying it. I feel very sad at it all but ashamed to say the person I feel saddest for is myself.
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    oh my goodness you do have a lot on your plate xxx I too was double caring for a number of years and it is exhausting.

    However it does sound as though at the moment the root of your difficulties are the carers for your daughter - that must cause you so much grief and work just trying to arrange it. Can you speak to SS - do you have an understanding SW? - and tell them how difficult and exhausting this is making your life? This shouldn't be happening because if your daughter was living independently they would be funding far more and they would have to provide decent quality regular care or there would be safeguarding issues. It seems to me that they are shirking their duties because they are relyin gon you to mop up the slack - NOT good enough! Some of these care agencies really take the ****. I'm afraid the only way to deal with it is a complaint to the Head of Service at SS if you can't get any results through individual social workers.

    I don't believe your mum means any of what she says - dementia talking!!! My Ma was the same - she knows how lucky she is to have you and you are a wonderful daughter - please don't forget your own value I all of this (but your Ma is unlikely to tell you that these days so I think we all should be telling you because it really is true xx)

    I'm so sorry you are missing your weekend - you really do need a break with hubby - even a theatre and a night away. Can you try this through your local carers organisation - they have been giving one off grants for exactly this purpose?

    keep posting, thinking of you xxx
  3. father ted

    father ted Registered User

    Aug 16, 2010
    Thank you Fizzie for your response. I think you are right because now I have no time to myself. Life is an endless round of household chores, trips to chemists and hospitals and chasing up those who are supposed to be supporting me but all I am doing is plugging the gaps left by their incompetance.

    I feel guiltier still as you were the only person who responded and feel maybe the others reading my post thought I was a selfish and cruel to voice my feelings. I know my Mum needs as much kindness and patience as my daughter but because of the AD has lost the ability to have insight into others feelings and how what she says hurts even now. I do know its the AD that has changed her but it still hurts.
  4. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Don't feel guilty. I don't think you're selfish or cruel.
    It's flippin hard work caring & you deserve a break & you need one.
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    Good grief girl - you're a bloomin' saint. --The only reason I didn't respond earlier was I didn't see your thread but a] never forget you deserve a life and b] you'll get no thanks from your mother, in my experience. One of the horrible things from a carer's point of view is the way dementia makes the sufferer utterly self-centred, or appears to. Sounds to me as if you need a break from your mother quite badly - are there any siblings to take up any slack?
    *hug* *doffed hat* *second hug* !!
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im so sorry that you got let down on your daughters respite and had to cancel your plans. Its not in the slightest bit selfish to want a weekend away every now and then.
    Your mum wont be able to understand - loss of empathy is a very common early symptom of dementia, so just ignore her comments.
    I hope you manage to get another weekend sorted soon.
  7. marionq

    marionq Registered User

    Apr 24, 2013
    I too have only just seen your post. Selfish is the last thing I would call you. This loss of self and an independent life - even for a short time - is one of the hardest parts of caring. I had a visit from John's CPN last week who insisted on me having a full days break and went straight back to her office and arranged it! We all need a little glimmer of light in our lives and as you are caring for two you need all these services on board to make sure you get that.

    Write that letter to the top brass and tell it how it is!
  8. susy

    susy Registered User

    Jul 29, 2013
    North East
    Wow wow wow, how on earth do you manage to do all this? You are amazing. I often read things on here and think of how difficult life is made with this awful disease. I'm afraid I can offer no advice other than keep trying through social services and see what care and respite you can have.
    A thought went through my mind when you said your mum was difficult when you went out, is she jealous of you "having a life"? Is there a day care centre she could go to? In my area there is day care where in fact both your mum and daughter would benefit from going to. There is a cost implication but SS would do a financial assessment about that. Worth exploring if you havnt already. My mum was dead set against my dad going there until we got her to have a look round.... She was so happy she asked if she could go too!!!
    I wish you well and hope that you do get some proper respite. You are certainly not selfish, not in the least, please don't ever feel guilty, you need rest. X
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    I am as sure as I can be that not one person would think you were selfish xxxxxxxxxxxxx You are fab and I do understand all those chasings you are doing - it is endless and it is incredibly frustrating and exhausting - sometimes you feel that you could do their jobs a hundred times better and get paid for it (if only you had that key called TIME!!! lol)

    It does hurt and I think your Mum would be mortified if she knew she was hurting you - but she just doesn't know how to express herself and it comes out as self centred and in some ways I really think that some people with memory loss do become like selfish toddlers or very selfish teenagers (and before anyone shouts me down - I used the word 'some' and fully know that not everyone is the same).

    It really is one day at a time but you need to work out some way of your Mum and daughter going to somewhere on the same day to give you AT LEAST one day a week completely to yourself and NOT to do catch up jobs - 2 days would be better and then you could use one to catch up with yourself sometimes and the other completely for you. We lose friends and connections when we are caring and then we lose sight of self xxx

    Is there some way that you can think of that you could ask for help to get this time for you? Keep posting xx
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I hadn't seen your post until now, either. No, I don't think you're remotely selfish. Caring for someone with dementia can be so very hard, both physically and emotionally. As someone else has said, people with dementia can become incredibly self centred - they become quite unable to consider anyone's needs or wishes but their own. And however much we tell ourselves, 'It's the disease' it doesn't make it any easier to live with.
    Personally I think all the feelings you have expressed are perfectly NORMAL in the circs. I know I would feel the same.

    There is sometimes a (usually unspoken) assumption in what we read and hear, that the person with dementia is the most important - everyone else's lives and needs must come second, and if you don't feel the same then you must be selfish.

    Well, after so many years of caring for relatives with dementia, both 24/7 and supporting them at home, I can't agree. Other people's lives are most certainly important, too.
  11. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    stoke on trent
    Just to add you are not selfish xx you have a lot to contend with xx you deserve a break xx
  12. father ted

    father ted Registered User

    Aug 16, 2010
    Many thanks to all of you that have responded. FYI Mum does go to a day centre twice a week which she enjoys and the staff from there are the one's that provide the sitting service. I am an only child so no siblings to share my concerns with or who can take over the reins. I have a very good cousin who has offered to care for Mum for a weekend in her home but Mum refused to go.
    Don't like to offload on husband as if he sees it getting me down he can be a bit abrupt with my Mum, also his own mother who lives in sheltered housing is needing more and more support with keeping her place clean, general hygeine, paying bills etc.

    I know that Mum is doing quite well compared to some of the others at her day centre but I find it tough. She has become very child like and sulks if things dont go her way.
    For example on a Wed I have to take my daughter and her carer to a day activity she is booked into at 10am. I also have to take Mum to her day centre at the same time. So 2 weeks ago because Mum wasn't ready I took daughter and carer first then returned home to take Mum who then refused to go as it was too late(10.35)! She also said it didn't matter if my daughter got to her class late. When I pointed out how hypocritical this was she said I used any excuse to pick on her!

    Thank you for your kind messages even though I don't know you. When you feel really low, unappreciated and constantly locked in battles with someone who forgets all about it 10 minutes later till the next thing sets her off you start to doubt your own sanity. She doesn't understand that everything I do has to be for the common good of 5 people at home not just her. The sad thing is that she would have understood all that not so long ago but I know she never will again.
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Oh no! :eek: I'm so very sorry that we made you feel that way :(

    I have no idea how you are coping with all the demands being put upon you and the very last word I'd use to describe you is selfish. It's impossible to please everyone all of the time, and sometimes you have to prioritise, as you have obviously been doing. Unfortunately your mum can no longer appreciate this, but that's not your fault.

    I hope you manage to get some time to yourself to recharge your batteries, because you so clearly deserve it.

  14. 100 miles

    100 miles Registered User

    Apr 16, 2015
    Oh my goodness. People with dementia are total toddlers. It is all ME, ME, ME. And even more annoyingly ...they have a much more extensive vocabulary and put together a well reasoned argument...so long as you ignore a) any information that contradicts what they say and b) the laws of the land (or maybe physics).

    Ummm, dare I say that while I want my mother to be happy -almost nothing in the world will actually make her happy. Often because she changes her mind....or just generally hates the world and everyone in it.

    I try so hard to avoid squabbles...but often find myself trying to use logic in public. Hah! Stupid me. I really should know better. Muttering bad words under my breath helps. A teeny bit.

    It sounds as if you are doing a superhuman job with little support. Keep on muttering darkly. You know it makes sense.
  15. Slugsta

    Slugsta Registered User

    You poor love, you sound utterly worn out! I'm really sorry you didn't get any replies sooner, I can only guess that your post slipped down the page and went un-noticed :(

    You certainly don't sound selfish, quite the opposite!You are being pulled in several directions and don't get time to look after yourself. I'm so sorry that your, badly needed, respite didn't happen, that is so unfair. I do hope you are able to get something sorted so that this does not keep happening.
  16. hvml

    hvml Registered User

    Oct 10, 2015
    North Cornwall
    The other guys are right IMHO. You need to find a way to get some time for yourself in order to carry on in the longer term. I'm a bit of a 'pot- kettle' poster as I only get one weekend off a month, but I care for one person (my dad), have my brother and his partner to call on in case of emergency and am actually handing over the reins to my brother next year. All this means that I can tolerate a difficult situation,with an end point. Your position is ongoing and I think you need to pace yourself. Not to mention the fact that when you have time to yourself and can gain some distance from the carers role, you can process the day to day objectively, think up solutions to problems without the pressure of the immediate crisis and......just be less stressed and more patient as a consequence.

    I have also found that if you are lucky enough to get even one efficient and empathetic support worker, it can make all the difference. I was 3 years without and now I have 2 who are both really supportive. I'd agree withMarionq and put pen to paper. The old saying about one rotten apple is true in terms of how you feel about the Service in general, but can happily be proved wrong.

    Keep your spirits up, father ted. You have got a lot on your plate.

  17. swoops03189

    swoops03189 Registered User

    Dec 1, 2015
    mrs a

    your mother would certainly not have wanted you to be doing this for her. But you are and now she cant tell you how much she appreciates what you are doing. Because if she could just stand back and see how much you are doing for her she would give you the biggest hug and say thank you. You certainly do need a break/respite. Can you get intouch with your MP see if he can do anything for you or point you in the right direction. You'd be surprised how much a call or a letter from your MP can do. As for your daughter, its rotten that she's had the grant taken away from her, cant you apply again as rules are always changing. Any chance a charity might be able to help? I do hope you get the break you so deserve.
  18. Bizzylizzy73

    Bizzylizzy73 Registered User

    Sep 16, 2015
    Southport, Merseyside
    I too am a double carer. Although you sound more frazzled than me.
    Caring as you do wears you down day by day and you don't notice it at first, when you do, you just resign yourself to it.
    I agree care companies can be ****!
    I have been afraid to leave my mum for fear of repercussions. This ends up with with you on edge and angry!
    You have a right to be angry, you've been let down. But if you can muster the energy, do complain, try n get some more help. There is a place near me called "revitalise" who offer respite for younger disabled people.
    Maybe you could get mum in respite at same time so you can get a proper break
    Thinking of you

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