Care Home? I'm Scared to Ask

Discussion in 'I have a partner with dementia' started by Jennyc, Jan 28, 2017.

  1. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    I recently had a needs and financial assessment for my husband who has fairly advanced Alzheimer's (can't dress, toilet, shower, eat, find his way round our tiny cottage, get a drink of water etc independently). I do all these things for him. Six year's ago, when all this blew up and I was about to retire, after many year's of what as far as I was concerned was a very unhappy marriage from which it seemed impossible to escape as my husband was financially dependent on me, we had agreed to live "separate" lives. I would continue to support him, but he would do his own thing (for the last 25 years essentially a bit of gardening and not much else, it's a long story)' and I would live mine. However, Alzheimer's intervened and I felt obliged to forget my plans and care for him.

    Since then, I've got more and more depressed, undergone counseling a couple of times, health going downhill through lack of sleep and lack of social contact (he can't safely be left) and had thoughts of suicide or murder circling round my head.

    SS agreed I needed backup, mainly to give me some "me" time, and are about to start funding three days a week daycare. I said what would happen if I decided I just couldn't carry on? I feel sometimes very hostile to my husband but keep it under wraps so far. He is 74, I am 68, I feel my life disappearing and hatred growing, and I am on my second course of antibiotics for the chest infections I get these last few winters because my reserves are down - I used to be a very healthy person.

    The Social Service person's response was that if I said I couldn't or wouldn't care for my husband any more, they would be obliged to take over. It felt as though I had been thrown a life line. At the moment, my husband still knows who I am. I'm the only person he always, well almost always knows. But there will probably come a time when he doesn't, and as people keep pointing out to me, it's because I am there, 24/7.

    Some time before too long I want to say I can't do this any more. It would be different if, like for so many of you, he were my great love, but frankly, he sucked the joy out of my life for many years, and threatened suicide in front of our then 11 and 9 year old daughters when I said I wanted to leave. My main feelings are sorrow that he should have to have this beastly disease, accompanied by dislike bordering at times on hatred. I wish him dead 20 times a day.

    But what I am really afraid of is my life line being taken way - that is, if I say no more, will they in reality just keep throwing more day care, or carers at me. I don't want my home turned into an old people's home, I don't want hoists, grab rails, incontinence supplies, puréed food, a house that smells of wee, all things we are steadily creeping towards. Suppose they say after all, no, SS won't fund (and we certainly can't) then what? I feel terrified to ask and put it to the test. My daughters cannot understand my fears, they think I am mad. But life has been such a strain, keeping everything going for so many years since my husband simply stopped working at the age of 49 and refused to discuss it.

    I'm sorry, this is a very selfish post when you all work so hard to care for people you love, but I feel very end of tether'ish.
  2. pippop1

    pippop1 Registered User

    Apr 8, 2013
    Could you see a solicitor about divorcing him? Maybe it would feel better about letting others take over his care and SS would see that you are separate.
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    If you can no longer cope then it's time for social services to step in.
    This whole business has obviously pushed you as far as you can go and it's time to do something before it affects your mental health any further.
  4. Beate

    Beate Registered User

    May 21, 2014
    You don't have to divorce him. All you have to do is say to SS very clearly that you are no longer prepared to look after him, you have reached the end of the road and ask them to take over. This can be difficult to do out of a misplaced sense of guilt or because they might try to change your mind. Contact your local Carers Centre or Alzheimer's Society and ask for an advocate.

    And no, you're not selfish. You've done your best for a man you don't love, risking your own health in the process, now it's time to look after yourself.

    Best of luck.
  5. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    Years ago I was financially dependent on my husband. I had 2 small children and had just started my own business. It wasn't doing very well when he left me and my children. He was their father so he left his own children.

    Had he stayed we would have lived a life of regret and resentment. I'm glad he's gone. I panicked at the time!!

    You shouldn't have to live your life in the shadow of someone else's. Is there any way you could divide a portion of your home off so it could be your sanctuary? I'm assuming you can't afford to sell up and each buy your own?

    I don't think you sound selfish. Quite the opposite. You've looked after your husband for years when he should have been caring about you too. It sounds as though he was the selfish one. If he'd got ill after you'd split up would you have gone back?

    If you need to walk away to save your sanity - do it. BTW - I'm happy now although I wish I'd chosen more wisely in the first place [emoji53]

    Sent from my iPad using Talking Point
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Does it have to be all or nothing?
    Why not go for day care now? You sound like you are getting to the end of your tether and the hours with him being away will give you some space. Will you be self-funding? If not it will also make it easier for you get SS to organise a care home. Unless you physically walk out of the house SS may insist that you try other things (like day care/carers) before the Local Authority will fund a care home. Certainly SS will take over when you are unable to, but unless its a crisis you may have to jump through some hoops first.
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
  8. Slugsta

    Slugsta Registered User

    What an awful situation to be in! Jenny, I don't think you sound selfish at all, far from it.

    If you feel the time has come where you cannot continue (and it certainly sounds that way), you need to tell SS that and let them get on with things.

    I'm afraid you might have to jump through a few hoops first (the system is overwhelmed with people needing care) but don't let yourself be 'guilt tripped' into doing more than you want/feel able to manage.
  9. dancer12

    dancer12 Registered User

    Jan 9, 2017

    Hi Jennyc:

    You are not selfish at all, quite the opposite, caring for someone you love is hard but caring for someone you no longer have feelings for is much harder. DO TAKE CARE OF YOURSELF. I CAN'T STRESS THIS ENOUGH.

    My neighbors had an elderly father with dementia and a few other problems. When they went away for vacation, they arranged for him to go into a nursing home. He loved it, he had other older people he could communicate with, they had regular activities and he got nutritious meals (not that yours aren't). When they came back from vacation, he (the father) was so happy that he didn't want to leave and he looked forward to them going on their next vacation. Bonus - they didn't feel bad leaving him there whenever they went away.

    You need a break as much as he does, if not more. If you can afford it consider it a mini vacation away from each other.
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #10 Shedrech, Jan 28, 2017
    Last edited: Jan 28, 2017
    hi Jennyc
    Kevinl is right - don't divorce or leave or sell the house - the financial assessment for you husband's care needs is based solely on HIS income and assets (I hope you have organised Attendance Allowance and discounted council tax); YOURS are not taken into account and, as you seem to have funded your marital life, I hope all assets, savings, shares etc are clearly in your name - the house will be disregarded as you will still be living in it - may be worth organising separate accounts so that his income is wholly separated from yours; make sure each of you keep paying half of all household bills
    tell SS that you are no longer able to provide the level of care your husband needs - make it clear that you are close to carer breakdown - if they insist on care at home being tried ie day care and 4 carer visits a day etc go along with it but register with them that you no longer want your husband living in your home as you can no longer cope, and will not be actively providing any care yourself ie it will be as though he is living alone - update them regularly on his deterioration - as much as possible leave all his care to the carers; if you intervene SS will not recognise the full scope of his needs and will not accept that he needs full time care - why not have a few holidays; let SS know you are going away and your husband will be alone in the house - theirs is the duty of care, not yours
    when it comes to it, let SS organise the care home, refuse to pay any top up - you are not legally required to finance his care
    from what you describe, your husband made decisions years ago which he assumed would have few repercussions; he thought he didn't have any responsibility for paying his own way - well now he'll have to take the consequences of those decisions
    sorry to sound hard; you're husband will have his care needs provided for; you don't have to be the one supporting him
    I appreciate that in reality it just isn't this easy for you - you have unselfishly put up with him for long enough - to me, your post doesn't read as selfish at all
    do I take it that your daughters are backing you - if so (and I hope so), you have their support to make a stand
    best wishes
  11. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    JennyC I applaud you. You need to get your life back. You are not selfish and I wish you all the best x
  12. Aisling

    Aisling Registered User

    Dec 5, 2015

    Your post is not selfish. You have done so much. Now your health is in danger. People with more knowledge will advise you.

    I think you should inform SS that you cannot care for him anymore. They may have a duty of care as he is a vulnerable adult.

    You are totally stressed and courageous in your honestly. In my opinion carers should not be expected to do the impossible.

    Please make app with your doctor.

    Sending lots of support,

    Aisling xx
  13. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    You're not selfish Jenny, you have gone above and beyond and must look after yourself before this destroys you. Other people have given you excellent advice on this thread. I wish you strength and courage in the difficult times ahead.
  14. Krug 22

    Krug 22 Registered User

    Dec 12, 2015
    Can relate totally. My husband was very controlling and emotionally abusive and I too struggle to be his full time carer now - he is much older than me. I think you are very honest and very brave. I may be in your position at some stage. My problem is that if I understand correctly, we would have to fund a nursing home out of his pension and this is what I have to live on. I do not work although I would love to do a computer course and vol work so if the time came, I would stand a chance of earning my own living.

    Non Carers do not realise that it is hard to care for someone if one has had a happy marriage but when things have been difficult it makes it much harder. I would take legal advice and also try the Advocate route to try and get the best out of SS. I do know with my late father, who told the hospital staff 'I was his carer and lived over the road' I had to get really hard and threaten legal action using terms such as 'vulnerable adult' and 'duty of care' to make them take me seriously.

    Could you get a letter from your GP to back you up and say you are near breaking point?
  15. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    Hi Jenny,

    So sorry to hear your story. It might be worth your while considering your trail of evidence, sadly.

    Go to see your GP and offload there. It may worth writing a letter describing what has happened in your marriage e.g. suicidal comments by your husband, your feelings and what you are coping with.

    Also, consider having a good talk with Alzheimer's Society. I have found them a fund of information and - more importantly - sanity. Your local one will have a good understanding of how the local systems work.

    The suggestions of separating your bank accounts is a good one. It means you are no longer, your husband and you, one person. Get Attendance Allowance sorted. Very easy, all online. I was told that is a pre-requisite for consideration for a Care Home. Alzheimer's Soc can help with that as you are sounding overwhelmed. Also, for the interim, but get guidance, you could claim Carer's Allowance. If you have written evidence of an Alzheimer's diagnosis you can also claim Council Tax disregard on the ground of Mental Incapacity on behalf of your husband. Again, online on local Council website.

    Do you think you can get a separation sorted? Sorry, that is getting really personal. From what you have described I can't imagine you want to be involved in his further care or decisions on his later care. There may e a solicitor locally who does 1/2 hours free guidance - or low cost e.g. £60.

    I would suggest getting guidance on whether hubby pays part of the bills. This sounds a tricky one. Are you seen as supporting him if he does pay, or, if he does pay does that give him rights?

    And then, also as suggested, get onto SS and tell them they need to sort out a vulnerable person as you can no longer cope.

    Best of luck.
  16. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Quick and certainly not comprehensive reply Krug. I feel sorry for all of us, but can imagine that it must be even more intolerable if you have not had a relationship in the past which can sustain you in the present. Other replies on this thread touch on benefits i.e Attendance Allowance etc. I think if your OH went into a CH and you are under pensionable age then you would have to claim Job seeker's Allowance and be expected to look for employment. Something I heard on the radio recently is that if you are caring for at least 20 hours then you can get a stamp credit towards your pension (maybe other benefits too). This can be backdated for a year. Please do look into this asap as it's important for your future. This link may help
  17. doobedoo

    doobedoo Registered User

    Dec 4, 2014
    I've just read your post and my heart goes out to you and you are not at all selfish, never think that for one minute. You are certainly not alone in feeling like this, I had many days just the same as you. Can you talk to social services at all or do you have any of the mental health team to talk to, I got so much help from the mental health nurse? Your health is suffering so much. Have they offered you respite care at all? If not ask if that's possible, you will be able to then have time to take care of yourself, which you so badly need. My thoughts are with you x
  18. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    Thank you

    Thank you all so much for your really helpful advice, and understanding, it helps not to feel condemned. My husband has been in emergency respite since yesterday afternoon, as I got too ill to be able to cope. My older daughter took time off work - she is a pediatric physiotherapist working with children who have severe problems and understands a lot about residential care - and contacted Social Services on my behalf. My case manager, I only got involved with SS around Christmas, is very supportive and organized a financial assessment to which we only have to contribute a small amount. This was towards some day care and two weeks' respite.

    Both my daughters are very much in agreement that the time has really come for permanent care. Jane took her dad to a CH about 20 miles away, she said he was surprisingly good about it, though he had no idea who she was. She just said I was ill so needed a rest, which he seemed to accept. She showed him lots of photos of our grandsons now 2 and 5, who I've looked after, one of them, then two, and now one again as the older has started school, one day a week at our house for the last 5 years. He thought they looked nice boys but again, had no idea who they were. Sad. She went to see him today and said he seemed very relaxed and had only wanted attention five times in the night. It was 10 or 15 here.

    Anyway, my daughter is working towards permanent care, stupidly I didn't arrange Health and Welfare when I got POA, hadn't realized it was necessary, did EPA for my mother, but it didn't exist then. This makes things a bit more difficult, have to have Best Interest meeting, but SS case worker called my daughter back and said they would start to sort this out, husband being totally dependent, cannot be left, would be in his best interest to have 24/7 which till now I've been giving, but it is breaking me.

    I'm keeping my fingers crossed and will keep taking the antibiotics.

    Once again, thank you so much for responding, my heart goes out to you all- until you've done it, I don't think anyone actually understands what being a carer to someone with Dementia is really like. And to all who feel as I do, a sense of duty but not of affection, I think you definitely need to beg for more help, no-one will seek you out, you need to ask.
  19. Morty

    Morty Registered User

    Dec 13, 2016
    Southeast Ireland
    Go with your instincts ,get your life and health back on track asap
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi Jennyc
    that is such good news
    your husband will have the support he needs and you will have your home as a safe place to live
    your daughter Jane is wonderful - so glad you have the support of both your daughters; quite a team
    best wishes

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