1. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Just wanted to tell you all of my worst day ever.
    I have finally thrown in the towel. As I write this Jim is in emergency respite,
    I have battled this horrible disease all the way with him but I cannot physically or mentally cope any more.
    Only recently has he reluctantly gone to a day centre for one day a week ..we were allocated two by SS but Jim nagged pleaded threatened until I gave in and said one day would be fine.

    I am physically disabled with Rheumatoid Arthritis and I Also have Angina and high blood pressure. I am in receipt of the middle rate of care and higher rate for mobility DLA so I should be getting help washing dressing and preparing a meal. Instead of which I have been full time carer for my Husband with Alzheimer's disease,
    he now requires help with dressing , showering and cannot cook a meal or make a hot drink for himself.

    his behaviour is challenging and he will not let me rest ...if I fall asleep in the chair he shouts and wakes me up ..on occasions telling me I am Lazy and stealing his time. He has no sense of time and will wake me up in the early hours of the morning thinking it is mid day again telling me I am stealing his time.

    This one day of him going to the day centre was to be my lifeline five whole hours to myself whoopee.

    However today he had only been gone an hour when the day centre rang to say he was insisting on coming home he was getting very agitated and aggressive with them.......I just burst into tears and said I cannot cope any more I needed this time to myself..the conclusion to this sorry tale is that someone from the memory clinic at the hospital was called out and came to the day centre to see him ( my children were involved by this time as my son had called and heard me on the phone to the day centre crying) they managed to persuade Jim that he needed to go into respite as I was ill and couldn't look after him it took three hours for them to talk him into it ,...if he still refused they were prepared to section him.

    Anyway he is now in emergency EMI unit at a local Nursing Home I have not seen him since I took him to the Day centre this Morning...I have an appointment with my GP in the morning as everyone thinks I am having some sort of breakdown and need some medication .

    I feel so guilty and useless especially knowing how worse off so many people on TP are. As I am feeling now no matter what care package they offer I cannot cope with looking after Jim at home...I know Jim will not want to go into full time care so I will have no option other than to leave my home and look for somewhere to live

    All the Advise I was given today when I said what about emergency respitewas ....you will have to pay for it...I don't care about paying I just want out of this crazy crazy world .

    I an sorry if I offend anyone by seeming so selfish thanks for reading through this tirade.

    god Bless
    Judith
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I am so sorry to hear your news and I certainly do not think you are being selfish or feel guilty. Thank goodness your son became involved.
    I do hope tomorrow brings good advice and help for you as you most certainly need it.

    Try not to get too despondent - things have a way of turning out and many have posted here at their breaking point, and amazingly help inevitable comes their way.

    Try to rest and keep us informed Good luck tomorrow Beckyjan
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,094
    Kent
    Dear Judith,

    I am so sorry it has come to this. But no-one would be able to last long if they weren`t allowed rest and had to suffer verbal abuse. You cannot be expected to live with this inappropriate behaviour and must not feel guilty.

    One thing I beg you. Do not leave your home. Your husband will not be able to look after himself if you left, so he should be the one to go into care and you should get the SS to support you.

    You are not guilty, you are not useless, you are worn out, emotionally and physically. You know where I am coming from, and believe me I would not be able to withstand what you are being expected to.

    If your husband has suffered rapid deterioration, it is not your fault.

    Love xx
     
  4. tazzi22

    tazzi22 Registered User

    Feb 17, 2007
    7
    Edinburgh
    Hang in there

    Jude

    My dad was have the same time as you;ve had. On saturday, after a week of aggressive behavoir and the start of some violence, he called NHS 24 after 5 solid hours of this behavoir. An emergency doctor was round within the hour and an ambulance followed within 2 hours. She was taken to the local psyco geriatric hosp and is in an assessment ward. I was so upset and shocked at what happened but i'm starting to think maybe it was for the best as she is now getting another scan, her medication reassessed and rehydrated. I thought she would hate it as she hates the day centre she goes to but she has accepted she is there and is surprisingly ok. I thought my dad would take months to accept some restbite care for her but after this i think his decision will be easier. He is still lost without her and can't wait for her to be back home with him to carry on and be toghether like they both want. She will be in hosp for up to 28 days but hopefully things will be better when she comes home. Hope things work out better for you as it can be so hard,

    Tazzi22
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Judith, 'god bless' you too sweetheart.

    Firstly: utter rubbish:
    Judith, your life is unique to you and Jim.....no one else. Cases may be similar, but people have differnt areas of backup and support. Never feel guilty.

    You have done the right thing for you today. What the outcome is only time will tell.

    (I am supporting a friend in slightly similar circumstances......outcome, after 6 weeks in respite, he is coming back home....That, hopefully, will work for them)

    You need time to get yourself back into some sort of shape.....I know how hard the, looking forward to a short 5 hour break, reality is when it does not happen.

    Take care of yourself, Jim still needs you, and let us know, if you can, how things develope.

    Love n'hugs coming your way. Connie.
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #6 Margarita, Aug 23, 2007
    Last edited: Aug 23, 2007
    Oh bless your not useless , your human and no your limits you may not feel it , but your very brave strong woman , to know your limits and admit them and seek help in getting more support for your husband , even if they support is in a EMI unit , that what emergency respite is for , am please to read that it has help you , so you can take care of yourself
     
  7. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Judith

    I am so very sorry to hear about your dreadful day. Please don’t feel you are being selfish, you have done all you can, and more especially considering your own ill health.

    There is nothing worse than sleep deprivation, you must be exhausted.

    Tomorrow I would contact your GP and get help with your own needs, also asking your GP to support you in your need to have respite, or long term care for your husband.

    I am sure Social Services will be able to sort out the funding for you, and I am also sure you will have plenty of advice from other TP members on this subject.

    Time to take care of yourself. Please keep in touch.

    Cate
     
  8. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Dear Judith,
    You have done and given all that you can - now let your children help you to sort this out. You have not thrown in the towel - you just cannot deal with it any longer; at present you are worn out. Your mind and body are telling you that enough is enough. You should be so proud of yourself that you have coped for this long. Jim is safe, and now you must look to your health; you need to get your strength back.

    You have nothing to feel guilty about; you should not feel useless. You have done your best and given your all. That is all that any of us can do. Like so many other carers you have been prepared to sacrifice your own mental and physical health, in order to care - as a friend said to me on the phone 10 minutes ago "carers, they are a special breed of person".

    Try and get a good nights sleep and let us know how you get on with the GP tomorrow.
    Thinking of you.
    Love Helen
     
  9. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thankyou all ..I just feel so bereft I am going to bed now I keep hearing sounds around the House I cannot stop "listening out" for Jim always trying to keep one step ahead and avoid any mishaps or mayhem he may be causing ..looking for something that has all of a sudden occured to him!!
    I can't stop crying but I am going off to bed now my Dr's appointment is 8.20 in the morning so I need to get to sleep.
    Thankyou once again for caring it does help having someone around that knows how you feel. I will keep you posted on developments.

    love

    Judith
     
  10. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Dear Judith,
    you have just gone through exactly what I have. I have felt all your emotions, guilt, despair, sense of failure, euphoria at first that the enormous burden of care had been lifted off my shoulders, then a deeply unhappy feeling of loss when finally alone in the house without him.

    I'm so lucky in that the staff at the assessment unit at the hospital have been so kind to me. They have shouldered the burden of responsibility and assured me over and over again that my husband is a very sick man and needs hospital care. They have kept me in the loop of carer and made me feel that I am still involved in a hands on, sharing role. It is very, very hard to walk away from him and leave him in the assessment unit when he has told me he cannot sleep without me and doesn't want to waken up if I am not at his side.

    You have my thoughts and love in this very, very hard time. xxx TinaT
     
  11. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    36
    Hi Judith

    My heart is breaking reading your post. I don't know how you can describe yourself as useless - from what you've written, you're anything but. You are clearly a wonderful person and carer who has finally reached breaking point. It's a tribute to your inner strength that you didn't snap before this.

    At this moment in time, you really need to look after yourself. I'm sure you know yourself that if you become ill, that you'll be of no use to Jim. I also hope that you will be able to accept more help from other people and Social Services.

    Please don't do anything too hasty. I know from personal experience that if I'm upset, my pathetic little problems seem like doomsday scenarios. Don't be afraid to talk to your children - they might help you to see things from a different point of view. I also hope that you get good professional advice about where to go from here. When you're armed with the facts, you'll be able to make some better decisions.
     
  12. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    #12 TinaT, Aug 24, 2007
    Last edited: Aug 24, 2007
    Dear Judith,
    you have just gone through exactly what I have. I have felt all your emotions, guilt, despair, sense of failure, euphoria at first that the enormous burden of care had been lifted off my shoulders, then a deeply unhappy feeling of loss when finally alone in the house without him.

    I'm so lucky in that the staff at the assessment unit at the hospital have been so kind to me. They have shouldered the burden of responsibility and assured me over and over again that my husband is a very sick man and needs hospital care. They have kept me in the loop of carer and made me feel that I am still involved in a hands on, sharing role. It is very, very hard to walk away from him and leave him in the assessment unit when he has told me he cannot sleep without me and doesn't want to waken up if I am not at his side.

    If he is sectioned, which it sounds as though he may have to be, please, please don't be afraid of this. It has benefits for both of you, one of which is that any further care will be fully funded by social services and the health service. Your husband is in the best place to serve his needs and also the staff will be very aware of your needs.

    You have my thoughts and love in this very, very hard time. xxx TinaT
     
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Judith

    Judith,

    How brave and hard-working you have been. You cannot do any more, you have yourself to think of too. You are a person as well.

    You seem to have done so well until recently, and there does come a time when it all gets too much, and this applies to everyone, not just you. You have stuck out for so long. Now, perhaps, is the time to accept that your husband needs permanent care from someone else, i.e. in a home, where you can visit him in a relaxed manner, being refreshed yourself from a good night's sleep.

    Judith, you cannot do the impossible, none of us can. It is very hard to accept that you cannot provide everything for your loved one, but it is a fact. We are all human, and even the fittest of us often can't cope with the emotional aspects of a loved one needing help, let alone if we have a physical problem as well.

    Do what is right for you, and accept your choice. I wish you well.

    Love

    Margaret
     
  14. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Judith,

    {{{{HUGS}}}}
     
  15. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Judith

    (((((((((hugs))))))))))))))

    I think that you are a truly remarkable woman to have carried on for so long when your own health is not great.

    Do not feel guilty. I know that this is easier said than done. Caring saps the energy from us be it for children or adults. Your post reminded me of days when my twin toddlers used to get to me and something went wrong, e.g. I couldn't get to the Toddler Group or Nursery closed unexpectedly. The difference is I knew that they would grow out of it but at the time it was a nightmare and when exhausted and tired and grieving for my Mum who was ill at the same time it could all become too much.

    For you and the other carers of those with this disease unfortunately the reverse is true they don't grow out of it so your position must feel so much worse.

    You need to get your strength back first. Then look at your situation with your family members. I know of husbands and wives whose partners are in my Mum's EMI unit who say that it is such a relief and they feel their relationships are easier as they can enjoy being with their partner again. I know of others who, as the various stages of the disease have progressed, have found it possible to cope with their partners at home again when aggression etc dies down or is under control from medication.

    Take your time and try not to feel guilty about resting up. Talk to your children and work out the best solution for all of you.

    Love

    Mameeskye
     
  16. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thanks for the Hugs Nell .I really need them right now.

    I have just got back from seeing my GP I'm afraid I just sat and cried at her at first. She has been very supportive and prescribed a sleeping pill just for a few days so that I get the sleep I need...I was awake every two hours during the night.
    I turned down the offer of anti depressants as I am already on quite a list of medication for my other ailments.

    I told her that I was anxious about what would happen after the week's respite care for Jim and was honest in that I cannot cope any more with the roll of full time carer I am not abandoning Jim I shall always make sure he is cared for its just that I am unable to physically and mentally take on the responsibility for him.

    She said there would be a further assessment done of Jim after this respite and that I was to make clear to SS and the mental health team that if Jim were to return home I would not be there.

    I am now trying to sort out a financial asssesment ..I have been told that this weeks respite is self funding but I have no Idea of the Cost ...it will sort out eventually.

    I have not been in touch with the care Home where Jim is staying cannot help worrying that he is OK and not creating about coming home. I will wait until Imeet with the CPN next Tuesday and seewhere we go from here ...I shall keep you posted on the outcome

    love Judith
     
  17. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Judith,
    If anything you deserve a medal, please don't sell yourself short. Judith, clearly you have made many sacrifices and put your own health issues aside. I echo what Sylvia said about not leaving your home. I feel that you are so exhausted, physically and emotionally that your unable to rationalize the situation. A time does come in the caring role when we all reach our limits and this is overwhelming in it's self. You have done Jim proud, you have given your all and now you need to take care of yourself. I hope that your feeling much better soon and that things go well for you. Well Wishes. Taffy.
     
  18. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    dear judith

    please dont feel guilty
    i know how hard it is you have coped well for so long
    we are only human
    you did the right thing i can empathise with you as i can see my self comming to the same stage as you bob wont have any care ---and it crusifies us so PLEASE dont feel guilty
    love bel x
     

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