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Feel so lonely

Discussion in 'I have a partner with dementia' started by christmas, Sep 13, 2017.

  1. christmas

    christmas Registered User

    Apr 27, 2014
    Hi can you help ,what do you do when they have an toilet accident ,Peter was good he would let me wash him and put clean clothes on him ,but now he won't and he puts it everywhere , I have to fright him to get his clothes of I am getting so tired and every bone in my body hurts , I tried getting help with carers but no one can do it till 11 30 and buy then he is up and not going to let anyone do it then , I think I need a rest but I worry he will be incontinent and worse when he come home ,just don't know what to do oh God I just feel so down right now and I don't think its helping Peter xxxxx Christmas
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello christmas

    You need more than a rest. If you fear Peter may be worse when he comes home, perhaps the time is right to think of permanent care.

    I know it`s a terrible decision to have to make but sometimes there is no alternative and you sound on the verge of carer breakdown, if you are not already there.

    Do you have a care home in mind? I understand being a full time carer you will not be able to visit lots of homes until you find a suitable one.

    My husband was much happier in residential care than he was at home with me. He accepted help from the staff there who handled him well, with sympathy and experience.

    Please ask for help from Social Services.
  3. Carmar

    Carmar Registered User

    Feb 2, 2016
    Hi Christmas,
    11.30 a.m. is very late for carers to be coming to get your husband up and dressed. Have you tried another agency to see whether they can do an earlier time for you (if you are self funding). If care is paid for by the local authority, I know it can be very difficult to request a specific time at all and you tend to have to take what you are given. This kind of behaviour and incontinence I think is one of the most difficult to deal with as a carer. You definitely need a strong stomach. Christmas, I am not the best person to help you but I know that someone with direct experience will come along and offer suggestions. I didn't want to read your post without replying as you sound so alone and exhausted. You definitely need some help and I hope you contact Social Services (if you haven't already done so) to do that as soon as possible.
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Have you spoken to the Incontinence service attached to your GP practice? They may be able to give you some advice. Please speak to the SS as well and ask if they can give you details of any care agencies which could help at a more suitable time of day.
  5. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hello christmas
    you sound so bone weary
    you have done so much to keep your husband at home with you for so long - your health and welfare count just as much
    so I'm agreeing with Grannie G, maybe this is the signal for you to look for 24 hour care for your husband so others take on the physical personal care and you provide the loving care only his wife can offer him
    in the meantime, definitely go back to the home care providers and explain your situation, then they may be able to juggle their timetable or at least fit you in an earlier slot when one becomes available - is it possible that your husband get up in the morning but stay in his PJs, have breakfast ... until the home carer arrives to sweep him off to get cleaned up - not ideal, I appreciate
    best wishes
  6. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Hello Christmas,

    Just want to echo the advice that others have given. I had a similar experience with my FIL - he was recovering from a bowel cancer operation as well as having dementia, so toileting was a real issue for him.

    Unfortunately, he got into the habit of 'holding on' whilst the carer attended to him in the mornings (he did have an early call, by the way), then he would 'go' after they'd been, leaving yours truly to sort out the mess. This is just what happens.

    For this, and other very valid reasons, I would say the time has come to let others take on the burden of personal care. You cannot continue to do this alone, nor should you feel you have to.

    Please let us know how you get on. xx
  7. irismary

    irismary Registered User

    Feb 7, 2015
    West Midlands
    Hello Christmas
    I too am with Grannie G, perhaps now is the time for full time care. You sound close to a breakdown as I was about 10 weeks ago when my OH stopped cooperating with me following a seizure and a stay in hospital. I was told to get carers but at what time - his needs varied day to day, and he wouldn't cooperate with them either, he was pleasant and laughed at them but wouldn't let them help him. He is in a home a mile away and he is happy, content and lets them help him most of the time with only occasional need for persuasion.
    Its a hard decision and I miss him terribly but sometimes there is no alternative for both of you. You matter too - who would be his voice if you were poorly? Please take care of yourself, best wishes.
  8. christmas

    christmas Registered User

    Apr 27, 2014
    Thank you I am thinking it's time for a home I never thought it would come but it's so hard and with him getting nasty I always said if he did get nasty with me I would fine a nice home , I really don't want to but my body hurts with all the frightening , he grabs my wrists and I have arthritis and they are so swollen I just can't do it , but he has to be cleaned up when he is in a mess , if I go on much longer like this I won't be able to do anything for him I have phoned round today to get help , hopefully I will be able to get a carer in , I feel terrible that I have to admit I can't do it anymore ,I have looked after him for 6years a lone but now it has got to me , I need help so bad all I did today is cry and I always try to be happy round him but couldn't help it today , I am dreading the morning xxxxx
  9. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hi christmas
    6 years is an awful long time to be caring on your own
    you both deserve to be safe and comfortable, and sadly that's not how things are now
    is it possible for you to see your GP about how you feel, as the GP may be able to make an urgent referral to Social Services for you
    best wishes
  10. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Just sending a hug Christmas, you sound so exhausted, and I think recognising that you can't carry on. If/ when you contact SS it is really important to stress that you are at breaking point and can't care safely for your husband anymore. Very sorry it has come to this but you need help to protect his and your welfare now.
  11. christmas

    christmas Registered User

    Apr 27, 2014
    Hi if my husband was to go in a home do they look at just what money he has or what we both have xxxx
  12. canary

    canary Registered User

    Feb 25, 2014
    South coast
    They only look at what money he has, including 50% of joint accounts. All the while you are living in the home it will not be counted in the financial assessment. If his saving come to less than £23,000 the Local Authority will start to part pay his fees and once he is under £14,000 they will be paying their maximum rate. The only time your finances may be considered is if the fees are paid by the local Authority and you choose a CH that is over this maximum rate and needs a "top-up" fee which has to be paid by someone else (presumably you) - so they might want to check that you could afford it.
  13. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hi christmas
    as canary says, the financial assessment is only on your husband's finances
    the value of your home, if you own it, is not taken into account, as his spouse, ie you will, continue to live there - so there is no question of you having to sell your home to pay his fees

    if your husband's assets are below £14250, Attendance Allowance will stop, his state pension is taken to put towards paying his fees and half any private pension (the other half is for you) unless you will not be able to cope on your own income, then the LA have the discretion to leave you with more than half his private pension

    be very wary of anyone suggesting you pay a top-up

    do have a chat with one of the folk on the helpline as they will be able to reassure you
  14. christmas

    christmas Registered User

    Apr 27, 2014
    Thank you everyone for your help xxx

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