Respite to permanent care

Discussion in 'I have a partner with dementia' started by sah, Feb 5, 2016.

  1. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Hi all.
    Just went down to collect OH from his first respite stay. Advice from GP and carers is that-as he's settled so well-it now becomes permanent. I've booked another week to give me time to think...

    When I went to see him-he didn't know who I was and thought I was one of his daughters. That was a shock-although I know that may come and go.

    Came home feeling shell shocked and not knowing which way to go; then rang his daughter to bring her up to speed. She is not happy-says he's nowhere near as bad as other residents and that he was fine at home ( How she knows that on spending 3 hours in the last year with him I do not know). She may well go down there tomorrow-wants to know if anyone has asked him what he wants....

    I just don't know what to do. He gets a lot more input in the home and is settled in...but of course he would rather be home. However, I have looked after him for eight years now-this was my first break-and I'm close to burn out. Feel so guilty about leaving him there anyway and could live without this from her.

    But a lot of me wants to bring him home.Sorry this is rambling but my brain is swimming!:rolleyes:
     
  2. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    870
    You must do what's best for you both,that seems to be full time care.If daughter is not in agreement maybe she would like to take over?Her Dad probably will say he wants to go home,almost everyone does,but as is said on here so often he will probably have limited understanding of where home is.Try not to be bullied or guilt tripped,your health and well-being are just as important as your OH's
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,883
    Female
    Scotland
    If this is another step child who wants you to martyr yourself on the dementia stake then I would avoid phoning her. If she's anxious to know how he's doing let her phone you or go to see him and offer to help. Offers don't always become reality though.
     
  4. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    At the moment I have a really good support network in my sister son nephew and stepson. Away from home there is another older stepson whom I always looked to for support before, well when other half waa diagnosed hex was with me when the doctor said you will have 5 to 7 good years then good luck. Those words will haunt me for ever stepson sent the Dr a very abrupt letter complaint about his manner in which he gave the news....anyway where is son 5 years on when things have gone pear shaped he went off to China so his kids can learn mandarin his business is here and he comes every 6 to 8 weeks. Barely pops in for an hour and texts every other week to see what's happening. Other half's daughter left home 18 years ago to live with her mum and has never been part of our lives although I maintain a good relationship with her. 6 months after she had an accident and is temporarily in a wheelchair she keeps ringing wanting to be part of dad's life although she has never been prevented from coming over and always welcomed when she did, her dad does not want her over does not want to see her and has told her so on her last visit but she keeps texting wanting 5o come over the worse thing is my younger son does not even know she exists because the last time he saw her was when he was 2. She is angry she is bring kept out of his life and dads even though she knows dad does not want to see her. I think my son has enough on his plate without having a so called sister who only comes over when it suits her. My elder supportive boys don't want her or there elder brother involved in dad's life as they have had nothing to do with him and have not helped in his illness. I agree with them but at the same time it is there dad as well. I am not happy for step daughter to come as hubby gets upset my hubby is immune to his elder son and it makes no difference if he came or not. I am disappointed with them both as they have left their younger siblings who have no intentions of jumping ship with the burden of helping me.........am I boring you......
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,883
    Female
    Scotland
    When you are in the middle of family strife it is hard to see a way through it. My birth family have never given me anything but support in my long life. My husband was always a stable solid character in a family of ne'er do wells who got by on what they believed was charm and I saw as crass stupidity.

    Well bit by bit they have all died off or succumbed to ill health and the pointlessness of many of my fears have proven to be a waste of valuable time.

    Do what you think is right and anyone who brings negativity or meanness of spirit into your life is better just to be politely ignored.

    Move on and leave them wallowing about in the smallness of their minds.
     
  6. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Thank you all. Just got back from care home-had to go down again as stepdaughter decided to go and tell OH I should be picking him up and got him very agitated. I will not repeat what my daughter said.....but the carers in the home agreed with her!

    It may be I'll bring him home next week-but only if it's felt to be the best for him. I miss him like hell but can't be here all the time-and he gets far more input there. Just could have done without her selfishness.

    Have blocked her on my phone-she can wait until I contact her.

    I hate this disease - stinks.:(
     
  7. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    870
     
  8. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Sah, my hubby went for 2 weeks respite 5months ago, he is still in the CH, this is now permanent, l was on the verge of a nervous breakdown, having looked after my hubby for 10yrs with no help, if you are offered long term care take it, it will only get worse, it certainly will not get better, you must do what feels right for you.
     
  9. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    A similar thing happened to me in mid 2014. John went for a month's respite, whilst I had a much-postponed knee operation, but, due to various changes in John's behaviour, Social Services advised me that he should stay permanently.

    Like you, I had cared for him for a long time without a break, (nearly 12 years), and was bone-tired, and I agreed. At times, I too thought about bringing him home, but didn't, and when he died 6 months later, I had that old-familiar guilt feeling, that had been with me for years, whenever I felt less than patient etc.

    Should I have brought him home? Would he have been "better"? Would he have continued to live? And I knew the answer was "no, no and no". He had deteriorated so much, and I just couldn't cope any longer and my tether had long ago been reached.

    I had listened, with anger, :mad: to the people who saw him once in a blue moon and declared "well, he looks fine to me!", as if a clean shirt and a shave dispelled Alzheimer's. I had yearned for 2 or 3 hours unbroken sleep without being woken and asked, for the zillionth time "is it Thursday? - his favourite question - and I had coped with violence, both physical and verbal, incontinence, him not knowing who I was, and me dreading the future.

    Unless somebody has lived your life and walked in the shoes of a carer for someone with AD, they haven't got a clue what it's like. Sweetie, only you know if you could cope with him coming home, but please remember why you needed respite.

    It's a rotten decision to make, I know, and I hope you find the strength to make the right one. xxx
     
  10. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    870
    Well said!It is too much for one person to cope with.
     
  11. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,995
    UK
    Your husband may want to come 'home' but as he didn't recognise you his 'home' could be to an ex partner or more likely to his parents. Make sure that if he is asked does he want to come home that the next question is who will be there waiting for you.

    It's a very simple question but often shows the real state of mind rather than what SW want to see.
     
  12. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Respite to per ament care

    Hi Sah,

    You have been offered permanent care for your OH. You are his carer and nobody knows the reality of this except you and the staff. Obviously the latter advise permanent because he now needs it. My advice is to choose permanent care. You know he will be well cared for. It is difficult. It is amazing how families have opinions etc when they are not involved in the daily grind.

    My OH is at home with me and wants to go home daily! It is now 24/7 and getting impossible.

    Aisling (Ireland)
     
  13. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Update: Have bought OH home as I don't feel he's quite there yet...will continue with day care at the same place and -over time-increase the days he goes.

    Have had awful problems with his family-his brother harangued me on the phone-ordered me to bring him home-and then said they would take over his care and I would no longer be responsible.This from a man who visited his brother for first time in three years last November.Also said he will be involved in any meetings about care.

    In his dreams - but it's knocked me for six. I don't have LPA for Health-am now making appts to see solicitor/social worker. Have had to take day off work as feel so awful-no sleep.
    My doctor is livid...as are my children. I know they can't do anything legally ( I hope) but to have this attitude when I've looked after him for 8 years so far -with no help from them-is so hurtful. I'm the second wife and the family have never accepted me-I was banned from attending two of his daughters weddings.Just don't know what to do next. My main concern is that OH will get hurt and confused...not on.
     
  14. Julia B

    Julia B Registered User

    Apr 13, 2015
    80
    #14 Julia B, Feb 8, 2016
    Last edited: Feb 8, 2016
    oh you poor thing, 8 years of being brilliant and they still treat you like this? Appalling people. His brother owes you an apology, he knows nothing of how hard life is and how much care your husband needs , you aren't the second wife babe you are THE wife, and you are the one loving and caring for this man - I know how it feels to be banned from a family wedding ( second wife too lol ), I know it hurts but you DO know best with regards to your husband, so get the all the paperwork behind you and know you are doing so well. We take care of MIL, and I've had to ban family from our house for the way they talk to me ( or ignore me) despite the fact they visit her once a year...People like that aren't welcome in my life, time to be ruthless babe, get rid of those who drag you down, you have enough to deal with. Take care, big hug and stay strong x
     
  15. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    Dear sarah,

    This thread touched me so much that I found your first post in this forum and read all of your posts in that thread - havent read your other posts yet but my advice to you would be to go back and print out all your posts and then send them to all the unfeeling and uncaring members of his family, who have hardly spent any time with him, and who do not know what you have gone through. Your posts are dated, with the first one being April 2009 and so they will be able to see how long you have been coping and what you have had to cope with.

    I am also a second wife, but I have had over 20 years of a lovely life with him before dementia gradually started taking him way, and even when it started, maybe 8 or 9 years ago, we still managed quite a good life together until I could no longer cope. His outbursts of aggression and his wandering were meaning that neither of us were safe. After a very traumatic time, when he was sectioned, and then ended up in a bad care home, he is now in a good dementia care home that can cope with his bouts of aggression - still says at times he wants to come home, but thats all he said when he was at home, and I have brought him home a few times, and he still says it after he has been here for a while. I can still take him out for meals, walks with the dog, to the theatre etc which he enjoys..

    Your husband's family should know what you have been through. Its wonderful that he settled so well in respite - not many of us have had that experience - for me it was full of trauma. I can understand why you brought him home from respite, with your feelings for him, and with the pressure from his family, but they just do not realise what you have been through - perhaps if they did, and could read your heartfelt posts, they might understand that it is probably time for permanent care. Your safety and his is all that matters now xx
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Oh sah
    I couldn't just read and not respond
    families !!!!
    so very sorry you are being put under such pressure
    good idea to have a solicitor involved and update the SW - make it clear to both what has been going on so that they know you need support
    I don't see how his brother can make any such statement! - your husband's medical and financial, indeed any, affairs are HIS - his care is between him and his consultant, GP, SW etc and anyone else can only be involved with HIS permission, so let all the professionals know he does not give his permission and they will back you up

    You have been your husband's support for so long and done so well - I have such admiration for you

    It's your decision to have your husband at home with you - please, though, do increase the day care asap - and gird your loins to make a permanent placement when the time is right for YOU and him

    every best wish
     
  17. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    870
    I am so angry on your behalf,how dare they?What a pity you care too much for your husband to take up his brother's offer.He is bullying you and it is unforgivable.As has been said he has no right to be involved in any decisions re your husband's care.Do take care of yourself,thank goodness you have support from your own family
     
  18. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Ditto! I get so mad :mad: when people who've left everything to others, take a superior stance.
     
  19. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Thank you all....the support really helps. Just got back from coffee and cakes at garden centre around corner-OH has insisted on going out again for a walk (AKA going through al the neighbour's bins) even though it's the day of the storms. Can't stop him....but will they accept responsibility if he comes to harm?

    Been to care home and rearranged day care-going to try a day where they do trips out which may be better for him. Also going to have more care in the home.( I do have carers in for an hour on the day I work-he thinks they're my cleaners...)


    Solicitors tomorrow morning....thought we'd got past all that. :mad:
     
  20. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Have seen solicitor...she was very good. Mentioned harassment and said she could take action if I had any further trouble. OH sat there throughout meeting -his comment was that he doesn't need anyone to look after him. :eek:

    But why has it come to this? They've made me feel so ill that it makes caring even harder. Their actions -if they continued-would mean I'd have to stop looking after OH sooner rather than later...but they've never cared about me so that won't wash.

    Have appointment at clinic with son today (fractured foot) Just hoping the strike doesn't stop it. Given up alcohol for Lent-think it's just as well!

    Next stop - social worker Friday.x
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.