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
    Hi all
    I'm posting this, but not really looking for advice, I suppose I am just making a statement here to get it off my chest.

    I have let my Dad down:(

    After 'flu, a cold/chest infection and a kidney infection that landed me in hospital for two days all in the space of six weeks, plus carers who don't do what they are supposed to do for Dad on a fairly regular basis, leaving him undressed and unshaved on occasions and not carrying out instructions as to medical care, plus a full time job I can't give up, plus my anxiety, panic attacks, sleeplessness and a social services that just make things so difficult, I admit defeat. I can't take care of him anymore and I have no other family to help. I have no oil in my lamp anymore and life just isn't worth living like this.

    He has moderate dementia and can't do much for himself. He is at home on his own and lonely since Mum died. I am too weak to cope anymore. I just feel really awful. I love him very much but he is taking up so much time and I am so upset to see him like this; three doctors appointments this week alone, food shopping, clothes washing, ironing, banking, bill paying, feeding his cats every day and tending to their vet care, fighting with SS to get the day care his GP has recommended but which they refuse to fund....... I have failed him because I can't do it anymore. I have to have the discussion with him about residential care. And I feel really guilty and bad and he isn't self funding so SS will be involved, which will make things much more complicated and stressful than they really need to be.

    Sorry about posting this. Don't know why I am doing it really, perhaps I am hoping that someone will say 'there, there, it's not that bad' and then I'll stop feeling sorry for myself and pull myself together.

    It seems a bit self indulgent to whine like this but I am tired of being tearful and upset all the time.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,336
    Merseyside
    Oh my love you have not let him down.
    You have exhausted yourself caring for him.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,740
    Female
    London
    #3 Beate, Apr 12, 2015
    Last edited: Apr 12, 2015
    Who says you should pull yourself together? Who says you have to go on like that? You have your own life to lead and you have done the best you can. Please remember that no one has a duty of care for another human being. The state, though, does. And it seems they are letting YOU down badly.

    So tomorrow morning you are going to give social services a call and say that you can't do it anymore and if they don't sort out day care or a care home TODAY, you are going to drive your dad to A&E and leave him there. That should concentrate their mind.

    Are you in touch with Alzheimer's Society, Age UK or the Carers Centre? Whatever is available in your area, contact them tomorrow as well. They can put pressure on social services too. As can and should your GP.

    Good luck and please don't feel bad. You have nothing to feel ashamed about. Social services should, for driving you to a carers breakdown.

    Good luck. Here's a virtual (((HUG))).
     
  4. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    You are exhausted, your own health issues make that perfectly clear. Do what you have to do to find a good care home for your father. Remember, in healthier days your father would not want this for you. Take care.
     
  5. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,643
    Hampshire
    Ceridwen - please read this thread which has a similar situation and lots of advice http://forum.alzheimers.org.uk/showthread.php?t=81550 and please don't beat yourself up, it's a superhuman input that is needed at times when supporting / caring for someone and your wellbeing also matters xx
     
  6. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Dear Ceridwen :)

    No way should you feel guilty. You have driven yourself on through your own ill health, for your dad's sake. It is the various services that have let him down, not you !!!

    As others have said, you must demand care for your dad, which in this case will most likely be in a residential setting. As far as I can see, it's the most loving thing you can do for him :)

    ((((Hugs))))

    Lindy xx
     
  7. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    You can't look after him any more feeling so unwell in yourself. It is the role of Social Services and the Care homes and all their staff to look after your dad, they are not doing it as a favour or because you aren't doing it... it is their job.
    So get on the phone to SS first thing tomorrow and say you have completely burnt out, because I suspect that this is what has happened to you and that you simply cannot carry on for another day. This in no way reflects on the love you have for your dad, it is something that could happen to any one of us, and often does.
     
  8. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    I feel for you, as has already been said please don't feel guilty. I don't have the experience of others so much but wanted to offer you a huge ((hug)). Xx
     
  9. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    I just want to echo what everyone else has said.
    I can't emphasise enough how much I admire you and anyone else like you who has cared like this singlehandedly for any length of time.

    I know I couldn't do it.

    It's time to put yourself first now.

    Wishing you strength to get through what must be done.

    xx
     
  10. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,585
    Female
    Auckland...... New Zealand
    Cerridwen , you have far from let your father down.
    Dementia has let your father down :(

    Even with family & support this illness tries everyone.
    My Mum has moderate Alzheimers and the constant mental and emotional battle is exhausting. Even nursing my husbnad over 2 yrs through two brain surgeries, chemo and radiation for a brain tumour didn't leave me this weary.
    Its no wonder your health is suffering, and I imagine your Dad is maybe in good physical health in comparison?

    You have done your absolute best. Its time not to admit defeat, but time to admit that your Dad needs care so that you can concentrate on your health and wellbeing. xx
     
  11. Redpoppy

    Redpoppy Registered User

    Jul 31, 2012
    268
    Glamorgan s.wales
    Nobody would say " there there it's not that bad" because it IS a really bad situation you are in. You cannot carry on this way without becoming more ill yourself.Far better you speak with SS and arrange care for your father now, before you get too exhausted to deal with all necessary planning. I hope you feel better soon,and feel so sorry you are going through this difficult time. You can't be expected to carry on in this way.
     
  12. FozzyC

    FozzyC Registered User

    Aug 3, 2014
    53
    Staffordshire
    Completely with you, frail incontinent mum, dad with dementia, both alcoholic I'm convinced. I feel like running away as far and fast as I can for my own survival, but I can't. Seriously confused and disturbing thoughts, described it as having a huge weight tied to my foot, weight thrown down a deep deep well, I can't escape..

    Have to keep telling myself I've given years and years to this, I didn't choose this, and they wouldn't have chosen this for me in better times, I'm sick of the lies and the game playing, the hidden bottles, begging carers and waitresses to buy bottles. Things have to change, they won't, so I have to withdraw from what I can't control before it finishes me.

    This has been a dark time, isn't guilt just the worst thing, but we have to remember that we didn't sign a contract, we don't have a duty to care so anything we do is a gift of love and of our lives, our energy, our sleepless nights, our time we should be relishing our lives and sanity, our children, partners and friends. I'm exhausted just churning this over and over. So I wouldn't follow my example, but the words of the wise and experienced people on this forum sound right to me! Try not to feel guilty, easy words I know, but everyone on here has done far more than many would even attempt.
     
  13. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Thank you for all your kind messages of support - when I read them I realise that it's not unreasonable to want to have a life and have good health. It doesn't take away completely the guilt I feel but it does give me a bit of perspective.

    I will call Dad's social worker tomorrow and talk to her about a referral as soon as possible. I don't really have much of a choice.

    Night night

    Jayne xx
     
  14. FozzyC

    FozzyC Registered User

    Aug 3, 2014
    53
    Staffordshire
    Take care, God bless (if that's appropriate, but I always say that to my children though they are grown and not religious, it feels right to say it though). Have the strength to fight for what you need to keep you and your dad safe. Hope the SW hears you and gets things moving, I think a hysterical voice mail got something moving when I hit breaking point. X
     
  15. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Good luck today Jayne - do let us know how you get on x
     
  16. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    It suits the culture of this country to make us feel guilty. They give us an image of women (in particular) which adheres to the old nurturing stereotypes, while also telling us we should be dynamic workers, adding to the country's wealth. They then expect us to give up those jobs to step into the breach caused by inadequate funding for social services. Why should any of you feel guilty? Cerriden, Fozzy - you have gone above and beyond the call of duty. Be strong. Which would be the bigger regret to you in retrospect: that after huge effort you handed the care of your parent(s) to the state and they were safe, or that you broke up under the strain and wasted years of your own valuable life?
     
  17. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    139
    Think we all feel for you and understand. Get all the help you can. We get respite every 3 months for mum cos we cant afford full time care home and its not enough!! But better than none! Sometimes i feel i cant go on, i have anxiety issues too and thatz wen its hardest to manage. Love to u, keep in touch and i hope things improve soon xx
     
  18. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Hi all,

    I am really touched by all of your messages of support. Thank you all so much for your support and advice. x
    I thought I'd give you an update on my situation.
    I have to go away for work for two weeks end of April and I have arranged that Dad will stay in a really great new care home whilst I am away. SS are paying some towards the care, Dad and I will pay a small top up. I have also arranged with the care home that he will stay an additional two weeks to give me a proper break when I return from working away, and I am paying out of my own savings for the extra two weeks. I have also spoken to Dads social worker about Dad going into this home permanently. It's not quite a straightforward as you would expect (actually, when SS are involved it is never straightforward). Apparently Dad can only stay in the care home permanently if the Care home are prepared to give him a SS bed - i.e. they are prepared to take £515 per week ongoing, when it actually costs £875 privately. The care home has approximately 5% of its beds allocated to Social Services and these are taken, although they do have some other places. When I inquired of the social worker whether Dad could have a place where I could pay a top up to the £875 per week they said they weren't prepared to sanction that and that the care home would need to give him a social services allocated bed. Does this sound right to you? If so, it means that I have no choice about where Dad can go unless he/I can pay full price for a place ongoing, which we can't. We can sell his flat, to be sure, and he has about £40,000 of equity in it, but that will last only about a year and he is only 78 so he could run out of money. What happens then? I just don't know what to do.
    What is clear in all this is that no-one is giving any thought to how caring for Dad is affecting me. I have been put forward for a carers assessment but have been waiting since December for this. Dealing with SS is a nightmare. They are difficult, slow and are prone to trying to withdraw aspects of Dad care periodically unless I fight. I am tired of fighting. Some advice or insight would be useful, thank you.
    I'm not feeling great today. I suffer from really bad indigestion/stomach problems when I'm stressed and I am feeling poorly today. It all seems a bit harder to cope with when I am stressed. Sorry.
    xx
     
  19. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    There's no need to apologise, Jayne. Things are difficult enough, and if you're feeling poorly then of course things will seem to be much worse. Give yourself chance to recover.

    You have done fantastically well to have arranged all this when you were actually at the end of your tether, well done :). I'm delighted that your dad is going into respite and that you will, at last, get a proper break.

    I can't really advise you regarding the funding, or the permanent SS place, unfortunately, but I couldn't just read and run, and wanted to give you a well deserved hug. I know others more experienced than me will be along very shortly, and I'll be interested to hear their advice myself!

    Again, well done, and here's that (((((hug)))))) xx
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    Oh Jayne, like everyone else has said - you have not let your dad down, its just been too much for you to do on your own and you have burned out. :(

    Im glad you have got some proper respite which will allow you to recover a bit, take stock and work out what help you need.
    BTW if your dad goes into a CH and has £40,000 equity in his flat then I think that SS will consider him self-funding. You may find the money goes further than you may think because he will also have income of pension and Attendance Allowance (if he hasnt got this already then apply for it), but once he goes down to £27,000 SS will start to put money towards the fees. It will be easier to argue that it would be in your dads interest not to be moved once he is already there.
     

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