I feel so guilty but I've had enough

Discussion in 'I care for a person with dementia' started by cerridwen, Apr 12, 2015.

  1. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks everyone, I am considering sick leave as an option. It might force SS to sit up and listen to me. Its comforting to hear that other carers have been in the same position and come out the other side!
    How far can I push Social Services? I met with dad's SW yesterday. My original intention was to get Dad into respite for four weeks (done - SS are paying an amount for two weeks, which Dad tops up and I am paying for two more weeks) so I can have a complete break. Then I was going to have a chat with the Care Home Manager about Dad moving into permanent care, we sell his property and use he £40k equity to fund care. But no, it's no that simple (it's never simple where SS are involved). Because the money from the sale of his house will run out within a year, it means the SS will have to pick up the bill after that, so they have to approve Dad going into permanent care NOW. I have to refuse to care for him, then they will offer him extra care at home or a care home, but it might not be the care home he is in now which is lovely and which he likes. Because he has no night care needs at present his SW told me they are more likely to try and care for him in his own home. Our local authority SS are millions in debt so they won't spend anything unless they really have to. I think this in unacceptable. They can't possible do everything that I do for him - shopping, cooking, cleaning, washing, taking to appointments, banking, looking after his pets.....etc.....etc......I am so angry. I want to know how far I can push them. I just can't cope anymore.
    Dad's blood tests show he has internal bleeding and he needs an urgent referral to a specialist next Weds then more tests. His GP suspects some form of gastrointestinal cancer. I am so worried and all this argy bargy with SS doesn't help. I cant pay his care home fees and I cant afford to give up work but my work is suffering. I am just about holding on to sanity:). Any further advice re SS would be very helpful, thank you. I hear about some of you having to stamp and shout and scream to get what you need from them. I don't have the fight for that anymore, I've already tried it and lost. Why should I have to be pushed into a mental breakdown to get the help I am entitled to? Its a scandal.
    Jane:(
     
  2. SueShell

    SueShell Registered User

    Sep 13, 2012
    395
    Orpington
    Jane - you pretty much have to get tough and tell SS you are not prepared to care for him anymore and please tell me who I need to give his keys to! Its terrible to have to resort to such extremes but that's what I had to do so they really knew that I meant business. I'm sure I would have ended up in hospital myself if I hadn't done it.

    Just as a footnote I damaged my back to such an extreme that for the first time in my life I rang 999 for myself. They gave me a morphine injection in A and E. When I got home in the early hours I couldn't lie down or sit down because the pain was so intense I was screaming. In severe pain unable to care for myself let alone Mum when I rang SS as I hadn't slept for two days they only offered a carer for Mums breakfast at 11am and a carer for her lunch at 2.45pm just for the weekend. They said it was short notice! Well, I didn't have my crystal ball handy to foresee I was going to be incapacitated. I couldn't bend down to put her c!othes on her or do much of anything. You are just a faceless number to them so you have to make a nuisance of yourself in order to get help. It shouldn't have to be like this but sadly it is. Its a struggle because like you, I was so stressed and exhausted you don't have the energy to fight but the system being what it is, that's exactly what you have to do. If you go down then who'd look after your Dad then? As other TP'ers have told me, you have to think of your own health. Take care, Sue xx
     
  3. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    Jane - I don't have any advice on SS but I do have some advice, reading your distress.
    It is quite simple. You can't care for him as you have been. If SS try to care for him at home, let the journey take its course. As long as you step up to the plate, they will take advantage. Of course, you may feel the care package helps and that you want to do his finances and his pets and leave the rest to them, say, and if so do it with CLEAR parameters over which you won't step. They come to you and ask you to do (or assume you will do) a/b/c/ which you find unacceptable, tell them you're not helping. They can't force you. There is no reason for you to feel guilty.
    As to your father's health - I was told my father was dying a few months ago because of a gastrointestinal bleed. Suffice to say, he pulled through. GPs really should not add to the stress we go through with their best-guesses.
    Stay strong. Stay calm. Hold your head up high. You've done your best and your best is good enough.
     
  4. patsy56

    patsy56 Registered User

    Jan 14, 2015
    839
    Fife Scotland
    Don't feel guilty, we all do, and I am in much the same boat as you, but I live 50miles away and my husband has Parkinson's I also work but went parttime to care for him. As they say who cares for the cares, we are here for you
     
  5. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    I am so sorry to hear about your back problem Sue. Being in terrible pain is bad enough, but to have to worry about your Mum being taken care of when you are incapacitated because you can't trust Social Services is just awful. Actually Dad's SW told me in confidence that it's the carers who shout the loudest who get help. So that is what I have to do. Thanks for your advice, Jane xx
     
  6. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thank you, Patsy, for you words of support. I can appreciate how you feel, just being torn between your caring responsibilities and your work. I get so annoyed about the way things are set up in the UK; public sector cuts have been found by slashing the social care budget in my borough, because NHS money is ring fenced. This means that SS are millions in debt and won't pay for anything unless its an absolute crisis situation. Public sector cuts hit the poorest people in the UK, without a doubt. My Dad's crime was not saving for his retirement and we are now both suffering. The truth is, if they provided the care they should, the whole of the Social Care system would collapse. I hope you have managed to find the right balance and get some time for you. Jane xx
     
  7. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Redlou; I have a friend who is a doctor and she told me that doctors today have to point out the worst case scenario a) for fear of being sued and b) because person-centred patient care principles mean that patients have a right to know what is happening at all times and have a right to know if there is a risk of something serious. It is comforting to know your Dad pulled through his health crisis. Mine has multiple health issues as well as dementia, so I am not so confident but I am suspending judgment until we know more. The universal message I am taking away from all you the TP'ers is that I need to be brutally firm with SS otherwise they will continue to take advantage of me to the detriment of my own health.
    Thank you xx
     
  8. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Quilty, I long for a bit of peace! To potter around in my garden, grow more vegetables than I can find the time to grow now, just spend time doing nothing. I have forgotten what that was like! Wouldn't all of us carers like that? I could also do with returning to doing some exercise, I've gained weight through zooming about in the car all the time and comfort eating. Yes, I think Dad may stabilise too - I am happy for him to go into respite care because I don't trust his domiciliary carers to notice if he's deteriorating. Jane xx
     
  9. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks, Sister Act, reciprocated xx
     
  10. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Canary, I have always wanted to go to Dan Francisco on holiday but it's the right decision not to go at this time. I just hope Dad's GP will write me a letter for my travel insurance to say that it was essential I not go. He did say he thought it was the right decision on the phone.
    Jane xx
     
  11. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Fozzy C, things have moved on a bit. Dad is having tests and probably a short stay in hospital. He will still be going into respite care too, so I will get a break and have peace of mind that he is being cared for 24/7 for a month. I will take him to his hospital appointments, though. We'll have the holiday at a later date and I hope I can claim on my insurance! I hear that the GP may write me a letter. He thought it was the best option that I stay to supervise my Dad's hospital visits and support him through tests. I am taking time off work to rest up and do some nice things for myself.
    Jane xx
     
  12. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Rea123, I would like a halo! Yes, I am going to start throwing my weight about. Actually, I made a formal complaint about Dads care a while back because they wouldn't pay for one extra day of daycare although it had been recommended by his doctor (he was over budget, apparently) I saw the top dog Technical Lead and as soon as I walked into the room I burst into tears! Not intentionally, I grant you, but it did throw them sideways a bit. Didn't make much difference though:( I suspec I'll have to kick up a stink, Jane xx
     
  13. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    What wise words, Zuzu72,
    I hope you find your courage too. It's the pushy people who get what they want, my Dad's SW told me last week (so I am, of course, broadcasting it to the whole world). I hope she doesn't read these posts:) Jane xx
     
  14. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Hi Chemmy,

    Thanks for the advice, yes, I have looked at all the other care homes in our area and they are much the same. All of them have SS allocated beds where they must take £515 a week from SS (when the average fee is £800 - £1000), but of course, that doesn't go anywhere near covering the cost of the care home fees so most of them only allocate about 5% of their beds to SS. The one that takes more SS referrals is, given a very mixed rating from the CQC. I also agree that we need to explore more options, but I am so exhausted that the thought of Dad going into a care home that is great and that he likes the look of, is the easy option and perhaps a fantasy? Jane xx
     
  15. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks CollegeGirl xx
     
  16. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Hi Pickles, yes there is. But SS don't regard Dad as self funding because he has less than 1 years worth of care home fees from his equity. I have to get their 'permission' for him to go into a care home.....and if I refuse to care for Dad anymore and he goes into a care home I may not have much choice about which care home, either. Thank you for your support, Jane xx
     
  17. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Chelsea Girl, I hoe you get some relief from your anxiety too, Jane xx
     
  18. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Cat27, it's nice to know people understand. When you have been dealing with SS for so long you forget that other people actually care, Jane xx
     
  19. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thanks Beate, yes I have access to a dementia adviser from Alzheimer's UK. She is great but overworked and it sometimes takes over a week for her to get back to me. Thanks for the hug, really appreciated, Jane xx
     
  20. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire

    Thanks, Tin, sending hugs to you xx
     

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