Plese can someone help i feel as though I'm on my own with all this

Discussion in 'I have a partner with dementia' started by Martarita, May 16, 2019.

  1. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Yes it has helped thank you we have a social worker but I feel he's dragging his feet , I only know how much top up fees I've to pay the new nursing home ,which is a substantial amount ,and now I've just received a bill from the residential care home for top up fees from when he went in and we was told that they didn't have top up fees , how worrying is all this I really think I can't cope with it all I don't know which way to turn ,all I want to do is shut myself away ,I wish with all my heart I could have carried on at home with him but my health suffered too and it still is Thank you for posting back to me .xx
     
  2. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you so much I will ring the citizens advice if the social worker doesn't contact me today like he said he would ,Thsnk you again for your help .im so worried.xx
     
  3. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Hi martarita
    Sorry to hear you have been hit with a bill from other CH. Try not worry to much, I wouldn't pay anything until you get some answers. Just a thought you have a SW so why not contact SWD and ask for a welfare rights officer to visit you at home. They can look at all you and your husband Pension/ benefits/ allowances and tell you what you are entitled too. They can also help you fill in forms and make a claim .
    Hopefully you will get this all sorted soon and can relax and your enjoy visiting your husband.
    Rose x
     
  4. herindoors

    herindoors New member

    Dec 21, 2018
    6
    Hi Martarita, You have to keep on at social workers as they have such big work loads, but you just keep ringing them, have you no one that can help you. Don't you pay the top up fee's that have just come in, if they said there was nothing to pay. You phone your social worker and tell them they need to sort this out. Did you no that whatever saving you have you split between you and your husband, if your husbands has more than twenty -three thousand five hundred, he may have to pay some topup, but his pension will go towards his care. Please get them to do a financial assessment you shouldn't have all this stress, that's why you have social workers. If you have to phone every day.
     
  5. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Ho,thank you Rose and Herindoors for all your help and advice it really has helped me I was so upset this morning I just didn't no which way to turn everything was to much I was overwhelmed with everything that's going on I feel so anxious all the time i don't seem to be able to get my head round it all ,I think maybe if we had lots of money I wouldn't be in this situation,but we haven't so I've got to the very best I can do for my husband , so I've tried to pull myself together and went to the memory cafe which we both use to go to once a month for coffee , it's run by our local MP and there was an Alzheimer's representative today for advice so I approached her and asked for some advice about the meens testing and both the top up fees and she said the same as both of you ,they're going to look into it for me as its so very complex she's going to get in touch with my social worker, so thank you both for giving me the strength to talk to someone who knows the in's and out's of all this financial mess I'm in and hopefully can help so in the mean time I'm suppose to stop worrying and don't do anything just yet ,get my husband to the nursing home which I think it'll be Monday hopefully with a lot of luck ,Thank you so very much I really appreciate you advice, XX
     
  6. DianeW

    DianeW Registered User

    Sep 10, 2013
    497
    Lytham St Annes
    I am so sorry you are going through all of this stress, but at least now you have a little help.

    I honestly would cancel the direct debit at the bank, ASAP.........you need to understand and agree everything first.
     
  7. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    959
    Female
    Dorset
    Delighted to hear you have somebody to support you now Margarita. There isn’t much you can do over the weekend so try to relax a little.
     
  8. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you I think you're right ,will do just that and then wait and see what the people I spoke with this afternoon can do for me i can't thank you all enough for your support and advice . Xx
     
  9. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Your welcome Martarita
    We are all needing support and this is a great place for it. There is not much help around, this terrible disease needs more public awareness and support. The media only show the nicer side i.e The Dementia Choir, it never shows the reality of being o full time carer, both physical or financial.
    As we all said try and relax and enjoy the weekend, and I hope the move on Monday is a positive one.
    My OH is settling, but I still have bad and good days too. I have stopped worrying about the financial side, I have notified DWP, LA etc, so will wait and see.
    Rose x
     
  10. herindoors

    herindoors New member

    Dec 21, 2018
    6
    Hi Martarita, so glad someone was at the club for you to talk to. I find the weekends are worse so I'm glad these people are looking into help for you. So please relax and concentrate on you and hubby. This process you're going through is awful like a mined field, we have just been through it with dad. I've made myself so ill, no one seems to understand. I now have a councillor who helps me with the way I feel . So when I caught up with your post this morning I was so happy you found someone to help. please keep in touch if you want. sending you a big hug. Pauline xx
     
  11. Martarita

    Martarita Registered User

    May 11, 2018
    112
    How lovely of you Pauline to say keep in touch I really will , I've felt so so anxious and worried to the extreme point of wanting to close the curtains and stay in bed , don't want to see or speak anyone, Thursday I went to the care home to see my husband he was worse than usual ,I didn't stay as long as I would have done I just couldn't stand to watch him he seemed so tormented,it really made me feel so ill , he is never still walking up and down all the time ,getting very agitated and annoyed swearing,which my husband would never have been like that , he was a very kind and lovely man before this horrible disease it's taken him away from me there nothing I can do , I have found it very hard to accept what has happened, and now as you say I find myself in this mine field,but hopefully it will get sorted soon fingers crossed, and hopefully when he gets to the nursing home they will get his medication sorted and thing will settle down for him and me as it's been terrible seeing him sad and agitated most of the time when I go to see him . Sorry Pauline for this long post but I really need to talk to someone who knows exactly what I'm going through, I'm so pleased I went to the memory Cafe yesterday and I wasn't going to go didn't feel very sociable but I went and I meet someone who can help me hopefully I keep saying hopefully but I've been let down so many times ,I was so relieved I feel I just might be getting somewhere.I Thank you so much for replying . reading your post for me it is helping me to be stronger and I've got to carry on for my husband.Thank you for your kind words .Martarita xx
     
  12. nita

    nita Registered User

    Dec 30, 2011
    1,790
    Female
    Essex
    Just been reading your thread @Martarita and hope you can relax a bit this weekend. Someone mentioned it earlier but I really think you should pursue it: NHS Continuing Health Care, which is a payment made by the NHS for people with complex needs where all the fees are covered. (I am not sure whether there are sometimes still top-up fees with this as well though, but I think these may be for superior rooms or things of that sort). Has you social worker mentioned applying for this? There is first a checklist to see whether he will likely meet the criteria and, if so, the full assessment is then carried out.

    I am glad to hear you are now getting the support you need and can get things sorted out next week.
     
  13. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you Rose for your reply I understand what you mean about the Dementia Choir it seemed to make it look so easy , but I'm sorry it's never been easy for me like you say physical,emotional,and now the FINANCES!! but hopefully there really is someone that can help me My morning started very bad just wanted to leave the curtains drawn and not see anyone crying and worrying, but I did get up and went to see my husband , not a good idea again same as when I went Thursday, very agitated and annoyed , crying and still walking up and down which that's what he did at home he wouldn't sit , never slept walked all the time ,it made me really upset to see him again like that I couldn't do anything to help him calm down , but hopefully when he gets to the nursing home on Monday they'll get his medication sorted out and things just might get better for both of us at the moment it's killing me to see him like this ,think I stayed with him a bit to long ,I was crying when I got into the car , sat awhile and decided to go see my brother and sister in law , it was nice to see them I stayed for tea . IT took my mind off my problems for awhile, until I got home and then it starts all over again , but having friends like you at Talking Point to give me support and strength as my family try's to do , I'm sure that things will work out well I hope with all my heart , so thank you for your support and your understanding I think the only people that truly can understand what it's really like are the ones that has gone and are going through this horrible disease So a big thank you I really appreciate you replying to me .Martarita xx
     
  14. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you nita , as far as I understand he has got NHS health care but I really don't know if its continuing health care but I know he had the checklist assessment done that's when they told me he needed the EMI nursing home ,and his room isn't a superior one its just a nice room with a window not a patio window , but yes I feel as though I've got someone in my corner now hopefully and I've been told today that it will be Monday when he moves into the nursing home , he also needs his medication sorted as they don't think what he's taking isn't working for him ,so hopefully on Monday he'll be in the right nursing home for his needs Thank You so much for for posting back to me much appreciated.xx
     
  15. herindoors

    herindoors New member

    Dec 21, 2018
    6
    #35 herindoors, May 18, 2019
    Last edited: May 18, 2019
    Hi Martarita, Well you are getting some good advice from Rose and Nita, I hope they don't mind but I'm taking down bits of information they are sending you. This is a minefield someone should write a book about how you cope with the stress and where you can get help. The site is brilliant. I spoke to the deputy manager at dad's care home yesterday, as he's had 3 falls in the last couple months, but she said that I can take him out as he really enjoys going out . He has a hospital appointment this thursday so I am driving up to Downham Market where he lives and arrange Driving Miss Daisy to meet me there to take him to hospital . As I can't see me managing to park the car near the hospital and then dad walking more a shuffle to the hospital door. Miss Daisy will drop us off and then I'll ring her when we are ready to go back. Dad will love that as he can sit in costa coffee shop in the hospital and people watch, he loves that. I've had 3 weeks off from mum and dad as my brother in law came over from America to stay with mum and visit dad, the rest was nice for me but I worry more when I don't see them. Mum's Alzheimer's is getting worst and sometimes she just won't visit dad, it's so unfair on us the family having both of them with this, but in another way neither mum nor dad worry about each other, which I suppose is good for them and heart breaking for me. speak to you soon Pauline xx
     
  16. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    959
    Female
    Dorset
    You are not allowed to pay any top up fees if you receive CHC funding because the NHS are paying, just like you don’t pay top up fees to get a better room in hospital. If your husband’s checklist assessment showed he needed the EMI nursing home then I would imagine he could well receive CHC funding, i.e. all his fees will be paid for by the local Commissioning Group, however he will have to go wherever they are prepared to pay for in whatever nursing home are prepared to accept him. You probably wouldn’t get any/much choice in the matter.
     
  17. Beate

    Beate Registered User

    May 21, 2014
    11,620
    Female
    London
    I somehow doubt that he is getting CHC funding, first, it's fiendishly hard to get, and simply qualifying for nursing care is not enough, and second because of the top up fees. It does not hurt to do the check list, but don't get your hopes up. He might receive the Funded Nursing Care of £155/week, and that's it.
     

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