I'm a young Carer in need of some advice

Discussion in 'Younger people with dementia and their carers' started by Pinkpanther1484, Nov 10, 2015.

  1. Pinkpanther1484

    Pinkpanther1484 Registered User

    Mar 8, 2015
    9
    Folkestone
    Need some advice

    Hi I'm wondering if anyone can give me some advice my has Alzheimer's and she's only 53. As her Carer i am really struggling to cope I'm only 30. I work full time as well having to Carer for my mother who is detirating.

    Our relationship is damaged beyond belief for the past two days we haven't spoken to each other. When we do talk we argue. My mothers personal hygiene is awful every time I bring the subject we argue. I'm at my wits end I have no support everything falls on me
    Working full time is my only escape I dread coming home at the end of the to find what mood she will be in from happy and normal to extreme anger. I'm constantly living on egg shells. I really don't know what to do ,

    Every night I'm going to bed in tears because I'm lost even more of mum, we're not mum and daughter anymore. I'm finding it so hard to cope.

    Her personal hygiene affects me so much that I can no longer go out in public with , I find skin crawlingly embarrassing.i should be able to enjoy the time that I have with my mum , but I feel guilty because I feel so embarrassed when I'm with her.

    I've tried going down the route of social services but they sent a social worker that didn't speak English. Which just made things even more stressful ,they didn't understand my mums condition and said I couldn't have regular care workers come in . Which made both my mom and I uncomfortable.

    I've tried registering with Carer support filled in all their forms and didn't hear anything from them. I've been to an evening support group that consists of me and two other cares who were in their late 70's . No offence them but I struggled to relate with them as they were both retired and had the time to spend with their repent , where as I work full time.i can't afford not to work as my wages pays the bills. I really don't know why to turn or what to do next. I really am at my breaking point

    I would be great full for anyone advice because I know need help but I don't know where to go next
     
  2. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Hello,

    You most likely will get more support in the Younger people with dementia and their carers forum.

    Your doing a great job, but you need support. Phone the support line tomorrow and they'll point you in the right direction.

    Take care x
     
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Hi Pinkpanther and welcome to the forum. I'm so very sorry to hear of the difficulties you are facing over your mum. It's hard at any age, but when it happens to someone so young - both you and your mum (I'm only 3 years younger than her) then it just seems so much worse.

    I think you need to contact social services again and just badger them until they listen, and also go to your own GP for your own state of mind and health. Carer breakdown is a very real thing and you need some help.

    I'm sure others will be along very soon with much better advice, but I just wanted to say hello and reassure you that you are not alone, you are among people here who understand totally.

    Hang on in there xx
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hi there
    welcome and I'm so sorry to hear how difficult life is for you at the moment.
    It might be that your Mum is incontinent and that once that is sorted out you will both feel much better about the situation. I suggest that you contact your GPs surgery and ask to speak to the continence nurse or ask for an urgent referral to the continence service. This was our first stop in a very similar situation to yours and the service was amazing. Mum was provided with pads by the NHS which made a massive difference to the smell and provided relief for both of us.

    You need to apply for Attendance Allowance - you might need some help with the form, it is important that you fill it in as though it is her very worst day and that you remember this form is not about the care/help that you get but the care/help you would need in an ideal world. This would bring in a bit of extra cash which you can use as you see fit. If you need some help with the form and you can't get any locally then private message me and i'll help you through it.

    I would go back to social services and tell them that you just couldn't get on with the social worker and that you need some help and please could you have a carers assessment with someone else. You desperately need someone who can support you through this.

    The leaflet on her about compassionate communication is very useful and it may help you speak to your mum. Please remember she isn't doing this deliberately and you are under a lot of stress - this is the link and I'm sure it will help you http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

    If you have a local Alzheimer's society ask if they have someone who will visit you to help you through this. You need someone by your side helping and guiding you.

    This is just a start, keep posting we are all here to help you. Thinking of you
     
  5. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Bless you heart I can feel the pain in your words.

    Please do not feel you are alone, you are not.

    I am a carer for my Mum and Dad but I have given up work to care for them and am not in a relationship (well, not a conventional one anyway!) so my circumstances are very different, however there are many member on here who have to contend with similar problems you face so I am sure you will get some helpful responses.

    In the meantime please have a big hug from me xxxxx
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    hi there i just posted this on your other message, hope it helps
    Hi there
    welcome and I'm so sorry to hear how difficult life is for you at the moment.
    It might be that your Mum is incontinent and that once that is sorted out you will both feel much better about the situation. I suggest that you contact your GPs surgery and ask to speak to the continence nurse or ask for an urgent referral to the continence service. This was our first stop in a very similar situation to yours and the service was amazing. Mum was provided with pads by the NHS which made a massive difference to the smell and provided relief for both of us.

    You need to apply for Attendance Allowance - you might need some help with the form, it is important that you fill it in as though it is her very worst day and that you remember this form is not about the care/help that you get but the care/help you would need in an ideal world. This would bring in a bit of extra cash which you can use as you see fit. If you need some help with the form and you can't get any locally then private message me and i'll help you through it.

    I would go back to social services and tell them that you just couldn't get on with the social worker and that you need some help and please could you have a carers assessment with someone else. You desperately need someone who can support you through this.

    The leaflet on her about compassionate communication is very useful and it may help you speak to your mum. Please remember she isn't doing this deliberately and you are under a lot of stress - this is the link and I'm sure it will help you http://forum.alzheimers.org.uk/showt...emory-Impaired

    If you have a local Alzheimer's society ask if they have someone who will visit you to help you through this. You need someone by your side helping and guiding you.

    This is just a start, keep posting we are all here to help you. Thinking of you
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,711
    Female
    London
    #7 Beate, Nov 11, 2015
    Last edited: Nov 11, 2015
    Don't worry, we all know what it's like! I'm in my forties and recently gave up work to care for my OH but that was more down to my office placing unreasonable demands on me. Social services helped as much as they could (still do) because I was like a Rottweiler with a bone and I didn't give up until a proper support plan was put into place.

    If you were sent an inadequate social worker, ask for another one. You have the legal right to a carers assessment and they should be supporting you to stay in work. You could ask for day care and sitters and most definitely for respite or you'll risk carers breakdown before long. You need to impress on them that they "have duty of care for a vulnerable adult at risk". Keep repeating that like a mantra. Your job means she is being left alone. That puts her at risk - of wandering, of accidents in the kitchen, of falling with no one around, of fraudsters on the phone or on the doorstep.... I am not saying that this is necessarily going to happen but it could and social services should put measures in place to prevent this. They could also refer you to telecare for trackers and alarms and to an OT for grab rails, bath seats and the like.

    What do you mean when you say you filled in for carers support but nothing happened? With whom? The Alzheimer's Society, Age UK and the Carers Centre are usually very good in providing emotional and practical support. They can provide advocacy if you are too overwhelmed to deal with authorities yourself, and they can help you fill in forms like Attendance Allowance and Power of Attorney (the latter is very important).

    Please try and be a little more understanding of your mother's failing hygiene. She is not doing it on purpose to annoy you, it's a sign of her illness, and she could have incontinence problems or a UTI. Get her urine tested for infection. If she smells more than usual, that might be a sign.
    I see the brillant communication article link has already been posted.

    But please also understand that you do have the right to your own life, you cannot be forced to look after someone, and if you can't cope without or with support, then there is no shame in looking into care homes. She might be happier if her needs are taken care of in a professional setting and she is with other people. You would then be hopefully more relaxed and able to spend time with her without ill feelings.

    Good luck and keep posting! Btw, I don't think it matters much in which sub forum you post here - most people read all recent posts regardless where they were posted.
     
  8. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    MODERATOR NOTE Threads merged.
     
  9. Pinkpanther1484

    Pinkpanther1484 Registered User

    Mar 8, 2015
    9
    Folkestone
    Need some advice

    Thank you all for your post

    I have a huge problem with my mum washing and changing her clothing, she will stay in her same clothes day in day out. I've tried the passive approach nothing so I tried being blunt still nothing.

    I've battled with social services as I said the person they sent didn't speak English. So I battled to get another. Which I eventually got the day after I met her she left. Every time I called they just me through to the finance department to see how much we can pay for care. I gave up because I wasn't getting anywhere

    Carer support is a local organisation in Ashford registered with them , met with one of their workers filled in all their forms and sent them back and nothing no matter how much I chased.

    I don't have the energy anymore to keep fighting to support, I know soon as I go to my go all they will do is give me anti depressants. Which isn't going to help its not going to change anything. I'm still going to have my feelings , my financial issues ,my still going to be ill . I'm still going to be trapt but just doing it high as a kite

    I do feel so alone and I have told people that I can't cope but nothing. I live in Folkestone and Alzheimer's care is so ****. I really don't know where to turn. I'm in my 30's I should be enjoying my life instead I hate it. I have changed as a person I used to be the life and soul of the party and now I can't bear going out I'm so self conscious I can't bear it.
     
  10. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    I realise that you probably want to do all that you can for your mum, despite everything - but it also sounds as though you have reached breaking point. That's not good for you or your mum.

    You have no legal obligation to look after her. If you feel you can't cope, go to your GP, and ring Social Services once more, and tell them that you can't and won't care for her any more. Say the magic words 'vulnerable adult' and 'at risk'. THEY have the obligation to step in. Don't let them fob you off.

    Have you tried ringing your local Alzheimer's Society branch for help and advice? They will be able to give you more pointers.
     
  11. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    #11 CollegeGirl, Nov 11, 2015
    Last edited: Nov 11, 2015
    Pinkpanther, I really feel for you. Please don't dismiss the idea of antidepressants (unless you have taken them in the past and know they don't suit you of course).

    They shouldn't make you as high as a kite. True, they won't solve the probems you are facing - but if they do their job properly they will help you to cope much better with those problems. I know this because I've done it, and believe me I didn't want to go on them and tried lots of other approaches first which, for me, didn't work.

    Anti-depressants were a last resort for me, and I only took them, eventually, because I was heading for a breakdown - and then I wished I'd taken them sooner. And I am now off them, so they don't need to be forever.

    You say you don't have the energy to fight and I understand that totally - many of us here will. But if you get your own health sorted then that energy may well return.

    Sending you my very best wishes xx
     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    You need a carers assessment and you need to claim attendance allowance. Both of these will relieve some of your stress in a practical way, you will have a bit more money and you will have some free time. So don't give up get onto it!

    If your mum doesn't have much in savings then you won't have to pay. Your money is your own. If necessary let them do an financial assessment and then you will know exactly where you stand. You can then begin to access things like a day centre and sitting services which will give you time

    Give the continence nurse a ring . This is the link to your continence service and it looks like they will visit at home. Tell them that you aren't coping and you need their help

    http://www.kentcht.nhs.uk/home/our-services/continence-service-kent/?entryid109=228816

    A couple more phone calls and you will start the ball rolling, i know you are at breaking point but you need this help desperately and it looks like you are going to have to make a supreme effort to get the services moving.

    I'm so sorry you've had such a rough time, is there just one person who will help you do this - an aunt or an uncle or a close friend, just to hold your hand through this last bit xxx
    keep posting xx
     

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