My body is in turmoil

Discussion in 'I have a partner with dementia' started by christmas, Dec 1, 2015.

  1. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    I just don't know what to do, I need help and my care worker is brilliant she is helping me get care allowance, this morning I had a form from the council for a cares assessment and I know that's a good thing ,but Peter keeps saying there is nothing wrong with him but he is getting worse I can't go out I worry about leaving him now and there is nobody to stay with him. My children work so it's no good asking them, I would just like someone to sit with him while I go out ,my son is great and will come at weekends but my daughter is always unvailable it not fair to put it all on my son he works 12 hour days and only sees is family at weekend, when he came this Sunday he was so upset because his dad did not know him and the children Peter said to me all these people who are they he does not know anyone now except me he dont know my name but I am his wife h e did call me da and yesterday he said it I was so happy, I know I am just going on but I need help so bad but something is holding me back I don't know what I just feel so bad please help me if you can sorry I am just rambling on again Christmas
     
  2. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Please don't feel bad, sharing your thoughts here, Sweetie. Everyone here is either sailing on this boat, that's called "Alzheimer's", or has been on it before. You desperately need a break, so have you considered a Day Centre.

    Even a few hours, a couple of times a week, will give you a break. My hubby didn't like his at first (he was then in the middle stages), so I said that if he felt the same after a "few weeks", we'd think about it. This was a lie, because I was determined that I had to have a break, but after moaning about everything, such as "the singer we had this afternoon was rubbish", "I ordered meat pie for lunch and got fish and chips", "they couldn't organise a ****-up in a brewery", he stopped complaining. :)

    As the years went on, he was going 6 days a week, to 3 different places, cos I couldn't cope without a break, due to lack of sleep, and everything else. I wish you well. xxxx
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,478
    Yorkshire
    Morning Christmas
    so sorry you are feeling so overwhelmed - and very glad you thought to come here to tell us
    you do sound as though you need much more help - and it's tough to try and get some when you feel you are going behind your husband's back
    sadly he's not, though, really able to understand the whole situation any more - so you need to do what you know is best for you BOTH - you count just as much as he does :)
    the care worker has been so helpful - can you contact her and have a chat about how you are feeling right now - if she can help you fill out the form it will be a start to getting the help YOU have a right to as a carer, your husband is not asked about this, it is all for and about you
    it may be that you will be entitled to some hours from a sitter and some respite time - I appreciate that, if asked, your husband may want to say no to these - however, YOU absolutely NEED a break so go ahead and accept what is available - your husband will be well taken care of
    You are clearly a caring mother, too - and I'm glad your son is approachable - maybe your daughter hasn't quite grasped the seriousness of the situation (maybe she has and she's scared) - please sit down with them and lay it on the line, they need to help out or at least help you to put more support in place - as a daughter I worried so much when my parents did their 'I didn't want to bother you' and 'we'll work it out ourselves' - they're my parents, I wanted to help, I just didn't always realise when they needed me to step in - I do appreciate how tough it must be for them if their father doesn't know them, but they are grown-ups now and that's a sign that YOU need them very badly

    so sorry - I'm ranting at you - I am so concerned

    so I'll say one last thing - it may be time to consider a care home for your husband - he will be looked after all day every day, he will be safe and warm - you will be able to visit whenever you want to and you will be able to relax a little - just ponder on that

    if I've written anything out of line, Christmas, I apologise

    do keep posting here

    very best wishes
     
  4. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    I think it gets to the stage that you have to make your priority what you NEED in order to continue caring for your loved one, regardless of what they want. If you need to have carers come in to give you a break for a few hours or use daycare then do it. With your children at work there is going to be a limit with how much they can realistically do to help you.

    I hope I am not sounding harsh but I finally had to call Social Services today to get a carers assessment for my Dad. He didn't want to use carers or a day care centre for Mum as it made her unhappy. However now he is starting to break down with the stress of caring for her. I would hate for you to get in the same position. Please ask for help as his needs are only going to increase and you can't look after him 24/7. Even nurses get to go home at the end of their shifts, it's not wrong to want to have time off from caring for a few hours {{{hugs}}}
     
  5. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    You cannot pour from an empty cup. You need help and support. Great advice above.
     
  6. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    you are all right what you say I have got to face up to it and get help , l don't mine looking after him I love him so much but I do need a rest from him just for a day would be nice to do want I want , it so horrible this illness part of me knows he is ill but the other half of me keeps thinking he is ok, he doesn't get nasty I just agree with everything he says and he is happy, it's just hard to ask for help. Up to now he just can't do anything and he don't know anyone only me he can still go toilet himself thank God.Thank you for all your help it does help me
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,478
    Yorkshire
    How wonderful, Christmas, to still be able to say you love your husband so much after so much time together - he is a lucky, lucky man to have you caring for him
    it doesn't come naturally to reach out and accept help, I appreciate that
    you've made such inroads already, be proud of yourself - you are entitled to support so I hope having the carer's assessment will point you in the right direction and find you some day care or respite or a sitter and maybe some home care, whatever is best for you
    do keep us up to date :)
     
  8. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I have got my carers assesment next week. I'm going to them neighbour sitting for me. On the phone today they said I could get two days care free when I need it . Sounds too good to be true,but I will see .
     
  9. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    That what I want at the moment just someone to sit with him , It's not being able to go out that gets to me I can't leave him now so I am stuck in, he has had it for six years now and it seem to be getting worse quit quickly now I want to go shopping for Christmas but looks like I will have to do it on line.Oh well I feel like I am always moaning on here there is more people worse of than me bless them xxxxxxx
     
  10. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    No you're not moaning - just telling it as it is. And there's no "worse than" or "better than", because each individual still has their own rocky path to walk. The only difference is that some folk have bigger support networks than others, family members or care, which for some is free, and it's this postcode difference that is so grossly unfair.

    When John was in the middle stages, and started going to a Day Centre, a couple of times a week, I only had to pay £1.50 a day, and about £3.50 for lunch. When he deteriorated, it increased to £9 - an hour. :eek: But we were well past the stage of going on holidays, so this was my holiday.

    Crossroads Care was part funded by the Peoples' Lottery, and I had 12 hours every 4 weeks for £22.50 in total. And I could use the hours however I liked, so I had 3 x 1 hour visits a week, to bath John (he kicked me if I tried to bath him) whilst I had a sleep.

    You badly need some time to yourself, and you deserve it. :)
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,854
    Suffolk
    I just wanted to say that the last person to realise they have a problem is the person with the problem. They believe they are fine and everybody is making a fuss.
    You know there is a problem, he's not in early stages anymore. You need respite of some form or another, so 'love lies' might have to be brought into play, so he will accept befriending or respite. By the time OH needed 24 hr care he had 2 days day care and a morning where a respite carer came. Two days soon went up to three, btw.
    You really don't want to get Carers breakdown, either. Been there, done that.
    Have you got LPAs for him? The health and wellbeing one will make life easier for you ( and you will need finance as well of course).
    Good luck!
     
  12. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    Not sure if every where is the same,but following your carers assesment you may get the cover to let you get out. My daughter and son are fab and I'm sure would sit ifor me if needed but they don't think of it how can they understand.So I too am at the stage of being almost house bound or taking him with me,so no choice really. I can only sympathies and hope you get all the help and support you need.
     
  13. marmarlade

    marmarlade Registered User

    Jan 26, 2015
    183
    body in turmoil

    you are not rambling we all get to this stage at some time,my hubby had to go into care as i just couldnt cope any longer .also hubby only knows the daughter as his girl knows the sons name but me im mum.i think this came from the children calling me mum when they were small,dont worry what he calls you,as long as he knows its you,hubbys face lights up when we go and he says to anyone who will listen here comes my mum.
     
  14. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    Thank you everyone it makes me feel so much better I just don't want to start hating him he has look after me all my married life now it's my turn and I won't let him down X
     
  15. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    I feel like I am on the same page as your journey. Tomorrow I have the nurse coming to see us don't think other half will be happy. However I need to put a care plan in place before I can go back to work. He is so used to me but I am hoping to get him into day care for 3 days..........probably easier said than done. Everything but the disease if moving at snails place. Keep posting so I can pick some tips......Other half is off wandering at the moment but I can see where he is from the iphone app, in a way its like having some breathing space when he wanders off (with the piece of mind knowing where he is)........
     
  16. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    Peter is the same but he doesn't go out all he does is lay down so that's one good thing but he is putting so much weight on, I am going to get help he won't like it, my healthcare worker is going to see if she can get him in day care, it's funny he will go anywhere with her but no one else,but if she don't take him he won't go I know him, so I am going to ask for someone to sit with him while I go out just an hour would be nice ,l love him to death but I miss going out with my sister's will let you all know how I get on. I hope you get what you want tell me also how you get on hugs to everyone I think we need them xxxx
     
  17. christmas

    christmas Registered User

    Apr 27, 2014
    205
    Leicestershire
    I think we are the same , the healthcare lady who comes take,s him out for an hour but she doesn't come all the time haven't see her for two weeks said she will come tomorrow but if something come up I am on hold again, he will go anywhere with her but know one else only me,she said she going to try him at a day care but when she stops taking him he won't go I know him x . I will let you all know how I get on big hugs to everyone we sure need them xxxx
     
  18. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Christmas, do hope you you get the care plan you need sorted very quickly. A few hours break makes such a difference. I don't know how you've managed for so long without help, you are amazing. Big hug. xxxx


    Sent from my iPad using Talking Point
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.