Desperately looking for some help and advice please

Discussion in 'Younger people with dementia and their carers' started by Beannie, Sep 24, 2015.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    What a morning!!

    I went to pick my husband up from his care home this morning to take him to his day care centre and was asked to speak with the Manager of the home. Apparently during the night my husband rang the call bell several times and because someone didn't come at his beck and call he became aggressive and when the carer did try to go into the room he was blocking the door and she had to 'brush' past him and he took affront at this and 'thumped' her. I have been told today if he does this again he will be asked to leave and of course I will have to tell a new care home he has been violent. I have looked at prices on the internet and they are £250 more a week than I am paying now!!!

    I have spent the last two hours crying as I do not feel I have anywhere to turn to. I have to self fund as our local Council refused to fund him as I hadn't tried carers 4 times a day. I tried to tell them that wouldn't work as he needs care during the night (which they said they could not provide) as he wakes frequently and needs someone there immediately. He had started to wander and we have steep stairs.

    I had carried on at home as long as I could but couldn't carry on any longer, and things came to a head when he urinated on the bathroom floor for the 10th time one Sunday and said if I didn't get him into care he would take his own life.

    At what point do the Council have to be forced to pay I am only just treading water financially at the moment and keeping my head just above the parapet as I have to look after my own home expenses as well. So in effect I am running 2 households.

    We are both 62 and just when life should be at the enjoying stage, mortgage paid off, kids independent, we are lumbered with 2 life limiting illnesses, Parkinsons and Alzheimers Disease. My husband gets DLA and has 2 occupational pensions, one very small. I had to retire early last Christmas as I couldn't juggle work and home care anymore and I have a pittance of an occupational pension to live on. I have cut my expenses to the bone by eating what I can afford, not what I want. I turn lights off and only put one bar of the halogen heater on to take the edge off the cold in the lounge. Don't want the central heating on until it is absolutely necessary. Any savings we have will now have to meet the care home fees, when we should have been 'enjoying the fruits of our labour' I know I am not the only one dealing with this. I have found that neighbours avoid me unless I am in the car and then a wave is given as they know they won't have to speak. I also care for my 92 year old mum who is still living in her own home She doesn't really need any help as she has a cleaner and a gardener and I help with her meals.

    I don't have a large network of family (only have 1 brother who lives a long way away) and of the friends we had most have walked away, not sure what they thought we would ask them to do. So it is a pretty isolating place for me right now. Life doesn't really hold much for me to look forward to anymore, it is all just a drudge. Went to the Doctors when it first all happened I was given a simpering look and told to make the most of my time on my own. Won't be going back to the Doctors again. The only time I want contact with them is when I am dead and they can certify I am gone!!

    Sorry to have a rant but don't know what else to do. Any help or advice re funding would be very much appreciated. Thanks for taking the time to read this post.
  2. marionq

    marionq Registered User

    Apr 24, 2013
    I think you will have to consult the doctors again to request medication which makes your husband less aggressive. I'm no expert on anti psychotics but it sounds as if he may be ready for something of that kind.
  3. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    North Hampshire
    As well as a visit from your husband's GP - I wonder if it's time for another "care assessment" for your husband ? - perhaps he now qualifies for some financial help (always assuming that he's financially entitled)

    Sounds like you're understandably at the end of your tether... if it were me, I'd be visiting a different doctor (for yourself) and getting some medication to help me for a while...

    Have you thought about visiting a carers support group ? I've just googled "Carers Support Derbyshire" and found the following link:

    As for financial advice... perhaps Citizens Advice (or the above support group) could point you in the direction of someone who has expertise in this area? Often, the first consultation is free.

    Hope things are looking a little less overwhelming.

  4. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    #4 Mrsbusy, Sep 24, 2015
    Last edited: Sep 24, 2015
    First of all I'm sending you a big bunch of cyber flowers to say well done you for getting this far and a gentle hug too. Secondly those friends who wave and pass you by aren't worth the bother of raising your hand next time as they aren't friends just people you met in life and don't really have your best interests at heart so ignore them.

    I agree that maybe get your husband to be visited by the GP and see if he has an infection, or needs some medication to help him. Then visit a more pleasant GP than the last maybe a female one and tell it like it is and ask for some support and melds to get you through this life changing event. Even if she can put you in touch with other carers, or a food bank maybe,someone to have a chat with.

    Have you assessed your income on the Turntous website as this takes lots of things into account and tells you other things you can claim. Today I read about Independent age I think it was called but will confirm who give you more ideas for older people financial and otherwise. Yes it's called independent

    Have you got your council tax reduction that you are entitled to being a sole occupant. Can you claim for carers allowance for your mother? If you are ill yourself do you claim Attendance Allowance? Please phone your local benefits office and ask them to visit you and ask them to fill in the forms for you which they will happily do. You may even qualify for pension credit. They will be able to tell you. They never offer things now it's up to you to research and enquire, but make sure you do. Water companies and utility companies also have reduced rates for hardship cases like you but you have to let them know. If you or your husband gave served in the forces, even just for national service SSAFA or British Legion are happy to help you with funding too.

    Another idea to keep warm is if you invest in a heated under blanket for your bed to at least keep you warm whilst in bed at a very cheap rate about 20p a night. If you do have some friends why not make one evening a week a dinner night where you can cook one course and the other person does the other, or even just make one course between you saves on the energy bills too.

    Wish this country looked after the majority of its people better than it does.
  5. TinaT

    TinaT Registered User

    Sep 27, 2006
    Has your husband been reassessed by any consultants recently? It seems to me that a spell on an assessment ward where his changing needs can be reassessed and his medication reviewed is needed??

    His needs and behaviour are rapidly changing and the current care home are not coping with these changes. His reassessment by a consultant may be the catalyst to him receiving better care and in getting some form of continuing care which could be paid for by the authorities.

    You cannot be expected to pay extra each time his needs become greater. If he is detained under the mental health act section III all his future needs would be paid for by the Health Authority.

    My very best wishes to you in this most distressing and worrying time you are going through.

  6. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    Thanks for reply marionq,

    The care home are going to arrange for a CPN to be re-instated, as he has now switched to their Doctors. She discharged D as she said he seemed settled in the CH. I have never dealt with these things before so just accepted what she said.
  7. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    Hi Mrsbusy,

    Thanks for reply. I cannot get Council Tax reduction as my daughter still lives at home, she is single and cannot afford to buy, a decision I fully support. She does contribute to the household as much as she can. Thanks for that website I will have a look at it. As for me I was turned down for DLA and cannot face going through it all again, it was like the Spanish Inquisition, some may say I am a fool to myself, that's as maybe but it was awful. The savings I do have cannot be spent as I don't know how long I will have to pay the fees for. I see others mention a Care Assessment Package, what is that? In our case the SW came to the home and after a lengthy discussion, she said the Council would under no circumstances fund as he had not tried 4 Carers a day. In our area you are lucky if that visit lasts 20 minutes,the Council are so in debt!!! she also suggested he lived in sheltered housing on his own either renting or buying, I had to surpress my amusement as I pictured D in sheltered housing on his own, they haven't got a clue, not sure what they have to do to qualify!!!!!

    The Care Co-ordinator at my Mum's surgery is looking into help for her which is good.

    The sun is shining here today so that is a good sign, might go for a walk later to blow the cobwebs away.
  8. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    Hi TinaT

    Thanks for your reply. D hasn't seen Consultants for either his Parkinsons or Alzheimers Dementia for at least 2 years. Each time I have tried to speak to the relative Department I get The Secretary and I am told his appointment will be along soon. He has been discharged by the Alzheimers Consultant as in his words, 'there is nothing else we can do' It is just the useless way the NHS operates and the strain being putting on it from outside influences, don't get me started. The Care Home where he is at the moment say they can fulfil his needs for now, but they put the fear of God in me when they said that if he acts this way again, they will have to give him, notice to leave and that I would find it very hard to place him somewhere in our City and may have to go further afield as I would have to say he had been violent, I think a better description may be aggressive.

    You mention Continuing Care what is that? I feel so stupid not knowing what all these things mean and I think I may have been 'fobbed' off because of my ignorance, but I have never had to deal with these things before. Like all of you I just cared for my OH without thinking about it and didn't really think of myself as a carer, it was just something I did until I could not do it anymore and only now do I realise I was/am a carer, albeit a stupid one not knowing about the help because I took what I was told at face value.

    As for me going to the Doctors, not going to happen. I visited 3 different ones in a week two of whom were female and got the same sympathetic look and told to go and enjoy the time on my own. So as I said in my original post no Doctors for me until I am at death's door or dead and they need to certify I am gone, stupid talk I hear some of you say but that is how I was made to feel.

    Anyway the sun is shining and I hope you have a good day and thanks again for your reply it is always nice when someone responds.
  9. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    Hi ElizabethAnn

    Thanks for your reply it really means a lot when people respond to a post. I think I always just did what was necessary for D and it is only now I see myself as a carer, I am sure a lot of others feel the same way. I am going to the CAB next week I have been told to go mid afternoon as they are less busy then. Apparently here you cannot make an appointment for your first contact.

    As I have said to a couple of others I feel so stupid not knowing what help there may be out there, when the SW said no to any funding I just took what she said and it is only looking on Talking Point and reading other posts that I now realise I may be entitled to some help even if it is an upward struggle to get anywhere. I was told by the SW that all D's occupational pensions would be taken if at anytime they did fund but I have been told by a welfare rights advisor this is absolute bunkem as I am legally entitled to half of his occupational pensions to help keep my house going. The problem is who do you believe. One website says one thing and then another is a total contradiction. So I think they feed on people's ignorance and maybe it is my fault as I didn't investigate more but believed what I was being told at a very difficult time.

    However, today the sun is shining so I think I will take myself out to enjoy the brightness. Hope the sun is shining for you as well.

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