Light at the end of a very long tunnel

Discussion in 'ARCHIVE FORUM: Support discussions' started by Trisha, Sep 11, 2006.

  1. Trisha

    Trisha Registered User

    Apr 8, 2006
    Hi everyone, at last I feel that there is a light at the end of my very dark tunnel!!MIL (94) is due to go for respite next Tuesday, hubby and I have taken the advice posted on my previous thread, taken the plunge and have spoke to the social worker regarding the home keeping Mum permanently as we just cannot cope having her back home with us. Now heard that a permanent vacancy is available, all we have told Mum is that she is going for 2 weeks, why then do I feel so, so guilty???? social worker says Mum (with dementia who changes her mind at whim) will still have to agree to stay permanently at the CH, how can this be? why should she be allowed to make the decision? we all know that it is the best thing for her long term, she has deteriorated so much and is a danger at home even with us here 24/7. If she doesn't agree to stay then I am dreading the next course of events as hubby will have to tell her that I have left him and our marriage.
    I hope with all my heart that her CPN and social worker will persuade her during her 2 week stay that she will be better off in the home, but knowing my MIL she will dig her toes firmly in.

    So, I can see the light but with a very heavy heart, I did not wish for things to end up this way, wish us luck!
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Trisha, I do sincerely wish you luck, not only for the sake of your sanity and your marriage, but also for the safety of your MIL.

    Incidentally how can that be? That she has to agree to stay? What about all the AD loved ones who are constantly asking to "go home"?

  3. sunny

    sunny Registered User

    Sep 1, 2006
    Home for good

    Trisha, by the sound of it I think your mum is virtually in the home for good!
    People with dementia at a certain level cannot be expected to make this decision as jennifer said they keep changing their mind, so the family, social care team and doctors - psychogeriatrician and gp - have to make the decision for her. Obviously, after a while she will settle in and of course you can visit very frequently and still show her you care for her, and depending on her condition take her out for a little while in a chair or for a ride or may be home for tea depending. Feeling guilty is the most natural thing in the world everybody who does care feels this, but obviously you feel that you have gone as far as you can safely for your own well beings as well as hers. Just because she goes into a home does not mean that you don't care - nobody in this Talking Point thinks that for one minute I am sure! Good Luck!
  4. Helena

    Helena Registered User

    May 24, 2006
    It is precisely the difficulty that the Human Rights Act causes for so many families and carers of AD/VD patients which causes so much anguish

    The disease robs the patients of the ability to reason or see sense and thus they stick to the stubborn refusal to go into NH care

    While on the other hand the Medics and the Social Workers who could very easily solve the problem by having the patient sectioned will not do so both for some kind of ethics and because i saves the NHS fortunes

    Not one of the officials involved with either the HRA or MHA have tried to cope with the problems od patients with AD or VD ................if they had they would have a lot more sense than to make such stupid laws
  5. lou lou

    lou lou Registered User

    Nov 9, 2005
    Light at the end of the tunnel

    Dear Trisha,

    forcing the hand of other agencies is sometimes the only thing you can do.

    My mum was admitted to hospital after a series of falls and a bad UTI. After a couple of weeks she said she wanted to go home and the doctors said she could. At the time I was off work with a heart condition so was not in a position to support my mum as I had in the previous few years by staying over at hers during the week with carers going in three times a day. Even with the carers in place she had had several falls, the in between times were distinctly unsafe she needed 24 hour care.

    My brother wrote a very stiff letter to the consultant in charge of her care saying that he would hold him personally responsible for any harm or injury to my mother if she were discharged home without a thorough assessment of her capacity to manage taking place.

    We agreed that as far as she was able she was entitled to make decisions about her future but not at the cost of her personal wellbeing, and regardless of any danger she might place herself in ( by then we had had numerous episodes of her leaving the gas on ,flooding the bathroom, blowing up 4 microwave ovens etc)

    In the end she was taken on a home visit by the ward where an OT did an ADL assessment and it was her report that swung the decision at the end of the day. Mum didn't know her way around her four bedroom flat, had to ask the way to the toilet gave them a wicker basket and told them it was her commode and was obviously hallucinating.

    There was a point where we refused to cooperate with her discharge before the assessments were complete and she did not have her house keys on her so could not gain access to her house without one of us being there. I think this was the only thing that staopped them from sending her home at one point.

    It felt pretty drastic at the time but she has been in a NH for just over a year now and is now pretty settled and well cared for and I am no longer a physical and mental wreck doing a full time job and then going home to the night shift with mum.

    My marriage was also suffering as I was away from home all week. Fortunately my husband was/is very understanding. You can legitimately refuse to have MIL home. We have a moral duty to our elders but not a legal one. Social Services however do have a legal duty, it's just that they often have to be dragged kicking and screaming to live up to it.

    Just because someone is capable of expressing the desire to go home doesn't mean they should always be allowed to do so. Doctors and care staff would be grossly negligent if they sent an old person home to die who they believed to be unable to keep themselves safe. Of course if they don't do the appropriate assessments they can claim not to be aware of someones frailties and difficulties.


    Kind regards
    to you and everyone else

    Lou Lou
  6. Nell

    Nell Registered User

    Aug 9, 2005

    Yep! Lou has it right I think. I know that refusing to have the person home is SOOOOO HARD to do (and talk about guilt inducing!!!) but sometimes it is the only thing to do.

    My family faced a similar issue some years ago with a younger relative with mental illness whom the hospital kept dischargoing into our care when we were clearly unable to cope.

    After insisting that we wouldn't be responsible (which makes you feel very uncaring and as if you are dodging your responsibilities) they finally provided additional support which was better (though not ideal).

    The eventual outcome in our case was positive. I think this experience has made me feel that it IS worth while sticking to your guns and insisting on the rights of the patient being put first - not some "airy fairy" concept of "rights" which are irrelevant when the person hasn't got the ability to reason.

    Be prepared to feel gut-wrenchingly awful about the whole thing but DO stick it out - remember whose sake you are doing it for. This is for everyone's best interest including your MIL.

    Take care and be kind to yourself.
  7. Trisha

    Trisha Registered User

    Apr 8, 2006
    Thank you all soooooo very much for taking the time to reply, your kind words and thoughts are really appreciated, it makes me feel that I am not so bad after all!! I know that come next Tuesday when Mum goes into care I am going to experience the absolute guilt of guilt trips knowing that she isn't coming back home, BUT perhaps we can get our lives back and start to enjoy our retirement in the knowledge that Mum is being well looked after. Mum has today been reminded she is going on holiday on Tuesday and we go on Wednesday there was much muttering and moaning, I am sure we haven't heard the last of it yet!!!

    Will keep you posted!!

    Hooray for TP I simply echo what has been said many times before I don't know what I would have done without you!

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