Dementia Tax

Hi I am struggling to come to terms with my husbands illness. On 30 June last year my life changed for ever my husband is 68 and had a massive bleed on the brain which has left him severely brain damaged and bed bound double incontinent paralysed down his right side and has lost his speech. I am so lost with out him we did everything together and had been married 49 years. He has just failed a re-assessment for continuing care in the community so half my house has to pay for his care.

21 Replies

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  • Thinking about you Jules. It is so traumatic when a beloved husband/partner falls ill. I do hope that you will be given strength to cope. Husband Brian fell ill with cancer but he was 80. Still hard to deal with. on the positive side, he was a wonderful person, but it took his demise to fully realise this. Do you have family and friends to give support. Love Pergola XX

  • Two brothers no support at all.have two loving daughters and 4 grandaughters who are my rock

  • Hi Jules, based on what you've posted about your husband, I cannot believe he isn't able to get his continuing care in the community, maybe it's worth contacting GP and any other health care professionals involved in your husband's care to see if it is worth appealing the decision, I'll be thinking of you both, sending you both love and hugs xxx

  • He has been assessed twice its the government rules so no joy. We saved for holidays and was always careful with money so thats all our savings going towards his care as we own our own house too. People who have no savings and dont own property dont have to pay a penny.

  • I too think it's disgusting that you should have to pay whilst others don't , doesn't make you you want to be responsible for yourselves any more x

  • Life is so unfair, you work and save all your life, and then have to spend it on care, and all those people that don't work, live in council houses, continue to get everything paid for the rest of their lives! It makes you wonder why we bother!

    My Husband died 10 years ago from a Brain tumour, he was ill for 18 months, we had no help either, I now try to live life as best as I can, and spend money, but it's hard when you are used to saving for your old age.

    We have just put my parents both 90 with Demetria into a care home, and we are paying for this, again without any help.

    Thinking of you, through this hard time, god bless and good luck

    Sarah xx

  • thank you Sarah thinking of you toox

  • Unfortunately life is cruel, you just have to take one day at a time and deal with one problem at a time, and at times like this you find out who your true friends are, so many of my late husbands friends who I thought would help and support me, soon disappeared. My sister was my rock and still is, family are the best (well most of them anyway!), my son was only 8 when is dad died so it was tuff, but he's at uni now & 19 next month.

    Good luck

    Sarah xx

  • Hi Sarah that friend who I think is a bit heartless and has had a cancerous kidney now a tumour on her spine I wouldn't dream of saying to her lets hope you live until your next birthday! My Girls are my rock and dont need anyone elsex Hope all goes well with your son at unix

  • Thinking of you too Sarah life's so unkind and cruel. Its my husbands 68th birthday today this time last year we had been for a birthday meal and was packing to go to Tenerife for two weeks. Then two days after we arrived home he had the massive bleed on the brain, so I have been coming home to an empty house for almost a year. One person said to me who I thought was a friend, at least he has made it to another birthday, How cruel was that! I wouldn't dream of saying that to anyone.

    Wishing you luck as well Sarah my mum is 91 and Dads 90 both frail have two brothers who have done nothing to help me either, good job I have two lovely daughters and 4 granddaughters to look after usx

  • My heart goes out to you. I was under the impression that " Nursing Home care was free" I can't believe that they can take have half your home to cover care costs whilst you are alive and living in the home.

  • Do they give you a reason for not continuing with the payment for care? Seems wrong to me. You do need to appeal ! Good luck with it

  • This was my appeal we had to have two severe marks or one priority and only had one severe. So no chance unless is health worsens

  • They say its not them its the government who make the rules. When i die and my house is sold my daughters then lose half their inheritance as they have to give half of the money they get from the sale to Social Services. The home he is in is £6000 per month!

  • Hi there Jules, I really feel for you and think that it's absolutely disgusting that you have been told that you cannot get help. My only thought is have you thought about contacting your local MP? Also, have you thought about writing to the local press as I cannot believe that someone with the awful disabilities that your husband now has isn't entitled to care.

    Am thinking of you at this awful time.

  • I wrote to my MP and never even got a reply but its the government rules so they say!

  • On that note I would now write to the newspaper detailing everything and saying that your MP hasn't even responded. I think it's absolutely disgusting so really hope that you get somewhere.

    My thoughts are with you through this very difficult time.

  • Hello Jules, I'm sorry to read the story above and some of the replies. It is as difficult time.

    I noticed you have been through the appeal process but would suggest you ensure you reapply if your husbands health worsens. I'm assuming if he is in a nursing home he is receiving the funded nursing care (FNC) element of £155.05

  • yes he is receiving the 155.05 which before April was 156 .25 penalised on that too. I will indeed appeal again if his condition worsens.

  • Hello Jules

    I'm sure you already know, but it will be a new application in the future if your appeal wasn't upheld. The home should be able to advise on the best time to reapply

  • thank you

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