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. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    hi, new to the forums. My mother has vascula dementia, I'm 37 years old have a full time job 4 kids of my own ranging from 2 years to 16 years one of whom has autism I also have residency of my niece since mums dementia got to the point that she couldn't care for her, my niece is8 has severe behaviour difficulties.

    Mum has hallucinations and is declining quickly, it's just me and my husband dealing with everything mum lives in the same street as us I have to visit and phone so many times a day do all the cooking and washing and finances and shopping etc.

    I just feel like I don't exist anymore as a person, there is no point in my days where I'm not caring for someone or running madly from home to work trying to juggle everything and failing, social services are putting together a direct payment package to put some care in but the negotiations with my mother to accept them will be exhausting it took nearly a year to get her to go to day care a couple days a week .

    Mum has just started getting incontinent feels like this is a step I can't handle, but then I thought that about the shower until last week.

    Everything is my fault, she hit me the other day, I know she can't help herself but I'm so tired out there are these uncontrollable waves of grief at the loss of who she was and huge anger at being in this situation

    Not sure I'm looking for answers just ranting about how rung out I feel.
     
  2. elizabeth20

    elizabeth20 Registered User

    Dec 28, 2013
    35
    Welcome!!!

    You sound like you need some help and fast. I don't know what to say other than there'll b lots more people on here along soon to offer some practical advice. You're not on your own I tap into Talking Point quite often when I'm feeling low and take a lot of solace from other people's situations and the kind and practical comments they leave if I post.

    Are there no other family members to ease the pressure?

    Please don't beat yourself up and remember you're no good to anyone if you become ill yourself - you are a very important person and you need to make sure that you remain healthy both mentally and physically. Speak to your GP be honest and tell him what you feel like.

    Good luck x
     
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Livvereywill, welcome to TP
    I've nothing useful to say just wanted to say Well done both of you:)
    I only have to cope with a wife with AZ and how you manage to look after; a family, work, your mum, housework, the autism and the behavioural difficulties I can't begin to imagine.
    I'm sure people will be along with some more practical advise in the meanwhile you'll have to settle for my undying admiration for what you're doing.
    K
     
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi Livveywills and welcome to TP :)

    What a dreadful situation for you! No wonder you feel wrung out! :eek:

    There are people on here who are struggling with all kinds of things.....but I would say that the demands on you as you describe them, are more than most people could deal with. I hope the social worker sorts out those direct payments quick smart, you need help urgently.

    In fact, I do wonder whether even with help, this whole situation would be too much to handle? To be doing a full time job and looking after five children, two of whom have particular needs, surely that's enough for anyone?

    I have a feeling that it may not be so much your mum's incontinence that's the problem, but more the total level of demand on you. Plus, if her condition is such that she has hit you....well, I think this may just be too much...:(

    Please be aware that you do not have to care for your mum ( although as such a caring person, it sounds as though you want to). If it's all too much, you can say so to the social worker, and they should then arrange sufficient care so that you are not needed every day as you are now. Your mum will always need you personally, but it may be time to hand over the day to day stuff to someone else.

    I hope you don't mind me writing like this. I just feel you need a lot more help, and I would encourage you to ask for it.

    Sending you (((hugs)))

    Lindy xx
     
  5. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    There simply isn't anyone else. The sister responsible for my niece disappeared 7 years ago II keep looking at my situation and saying do I give up my job? But my husband stays at home to care for our little one and he couldn't earn enough to support our family so I'm stuck being the one with the qualifications.

    I know I could put mum in a care home but she makes my life miserable enough for sending her to say care.

    Age often doesn't know who I am as in her daughter but she is always certain that I'm the one who should be doing stuff for her , social worker just kept saying to my mum that she had to accept help for my sake but it was a wasted conversation.

    There is a part of me that longs for the day that she truly had no recognition of me then maybe I could live with the guilt, confessed to my teenage daughter that I was praying that this would ve a quick journey through dementia, big mistake think she felt I just wanted to bump mum off.

    I guess the problem is whatever happens the buck stops here and there is no one to take the pressure for a while.

    Thank you all for your kind words doing a but of crying in the dark where no one can see me
     
  6. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    Its just me and my mum with Dementia. Can only say I have nothing but admiration for daughters like you, coping with more than your fair share. I really hope you get the extra help you so obviously need, may be a day or two extra day care would help as well. Where ever are you getting the strength to carry on. Keep posting, sometimes it helps to write it all down.
     
  7. elizabeth20

    elizabeth20 Registered User

    Dec 28, 2013
    35
    Me too

    The GP is the way I woud go if you're feeling so low at least give it a try it can't do any harm to mention that you feel like your drowning any GP worth their salt would listen you out.

    Lots of hugs x
     
  8. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    Worried if I turn up at go it'll be anti depressants
     
  9. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Feel for you, Livveywills :)

    Your husband is doing great things for your little one - and presumably he helps out with the others too? At least you have someone at home for the children. Although.......you have no choices in this situation, do you, so it must feel hard even when though hubby is so helpful? And I do know that feeling of there being no-one else when it comes to mum.....having to make decisions for a parent is truly miserable, especially when she only feels comforted and supported by you.

    Something has to give, though, Livveywills. If you've reached the point of confiding in that way to your teenager, then you are, I feel, crying out for help. I know, I've done the same....:(

    I really think you need to speak to the social worker, or your GP, or someone in your local carers social services. Please get help!

    Lindy xxx
     
  10. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Don't rule out anti depressants, they may help you through this time....:) xx
     
  11. elizabeth20

    elizabeth20 Registered User

    Dec 28, 2013
    35
    And ............????? You might need them. There's no shame. If we had a gashed knee we'd wear a dressing a broken leg would be in a cast, we wear glasses because we have problems with our vision, hearing aids, crutches, paracetamol for a headache........you get my drift.

    He may offer you Talking Changes the NHS Self Help service for people suffering from stress/anxiety disorders - not a pill in sight and can b quite helpful but in our area there's a bit of a waiting list don't know what the availability is nationally.

    You've made a positive step this evening by being on TP. Talk, talk and talk don't keep things bottled up. If you can't cope and most of us can't at some point please ask for help.

    Hope you realise what a special person you are x
     
  12. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    I know there's no shame in anti depressants it's more that I feel like I'm disappearing as it is under all this, worried about taking tablets that might take away what little
    Of me There is left.

    Yes I know I need to go, just rather terrified, putting it off has been my way of saying I'm ok, if I crumble who is there to pick up the pieces?

    Better head off now small child woken up
     
  13. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Livveywills,

    Sorry for all you are going through. That's too much for anyone. No wonder you are at the end of your rope.

    I'm on both anti-depressants and anti-anxiety meds and they saved my life. Far from taking away my personality, they brought me back from the brink. I honestly think I'd be dead now without them. Talk to your doctor - that'll reassure you a bit if nothing else.

    Good luck!

    LS
     
  14. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    Just wanted to flag up that your local area will have an Incontinence Service (NHS)which will provide incontinence pants for your mum free of charge. Ask your/your mum's GP to arrange that for you.
     
  15. jeany123

    jeany123 Registered User

    Mar 24, 2012
    19,049
    Durham
    I believe a lot of Incontinence services only supply pads not pullup pants free,
     
  16. Sooty2

    Sooty2 Registered User

    Jun 1, 2015
    30
    Really feel for you love its so hard xx big hugs x
     
  17. Keepingup

    Keepingup Registered User

    Jul 13, 2015
    12
    That is the situation we have for my mum. also the quality of the pads provided isn't great. We buy pull-ups for her but are also now trying to sort out bed protection, another area not covered by the incontinence service.
     
  18. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    One of the best steps for me when I felt I was drowning with everything was finding out about TP - here you can say anything - nothing you say about Alzheimer's will shock anyone - it's a horrible terminal illness that destroys whole families.
     
  19. Keepingup

    Keepingup Registered User

    Jul 13, 2015
    12
    Definitely. The biggest benefit I see of the Internet is finding people in similar circumstances and sharing with them/learning from their experience. (whether it's health conditions or other stuff like hobbies).

    I can't imaging what it would have been like 30 yrs ago.
     

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