refusing respite care

Discussion in 'ARCHIVE FORUM: Support discussions' started by mivazo, Nov 26, 2004.

  1. mivazo

    mivazo Registered User

    Nov 26, 2004
    Has any other carers had experience with loved ones refusing home/daycare ? What has been your solution ?
    My father has been diagnosed with AD for a good few years now. He has always been of a suspicious nature and won't take any advice from anyone, he does take his medication though. My mother would like a breather and a few minutes for herself but he categorically refuses to go to the day centres, he runs away once at the door (literally), kicks up a fuss, gets aggressive, sneaks out, the police get involved etc. He thinks everyone wants to lock him away.
    He is behaviour is getting very wild, he sneaks out of the windows at home, goes to see the neighbours telling them about those 2 men (maybe his reflection ?) He uses his few words to talk about those 2 people, is it his parents ? He is on tranquilisers but they don't have much effect, he is still quite hyperactive, he could be starting on mood stabilisers too.
    Has anyone else had any similar experience ? i'm sure the disease will progress and the daily home situation won't get any better. A volunteer befriender does come round from the local Alzheimer society which is helpful but only 2hours a week. Has anyone used any professional skilled nurses at home ? Thank you for your replies.
  2. barraf

    barraf Registered User

    Mar 27, 2004
    Dear Mivazo

    Has your mum had a carer's assessment? If not get her to apply for one immediately. She should then be able to get funding to pay for private carers to come to the house and give her some respite. This is under the Direct Payments scheme.

    Having said that it is a slow process but it is available to all who need it and worth persevering.

    Do not be put off by the Social Workers trying to fit you into one of their prepared packages. Stick out for Direct Payments as it is obvious that your dad does not fit into pattern that they are used to handing out.

    I am in the process of applying and have got the sanction of the Social Services but I am now waiting for the Direct Payment Section to agree. I have asked the local Alzheimer's Society branch to push them and they have agreed to do so.

    Margaret is not as bad as your dad sounds to be, but there is no way she will go to a daycare centre, I can't leave her as she wanders, and isn't safe to be left in the house by herself. Which is why I applied.

    Hope this is of some help

    All the best

  3. mivazo

    mivazo Registered User

    Nov 26, 2004
    payments and care

    thank you for your reply which was very helpful. It seems that my mother does get some kind of payment which maybe what you are talking about. I didn't realise she did get any payment. However she doesn't know what to do with the payment ! I wondered if you could guide us in the right direction to finding a local qualified nurse or carer ? Any information would be helpful, either internet sites, local organisations etc. Thank you for your help.
  4. barraf

    barraf Registered User

    Mar 27, 2004
    Dear Mivazo

    I don't think the payment you mum gets is Direct Payments as that requires the setting up of a separate bank account.

    Also as I understand, it the liason person from Direct Payments will provide a list of suitable agencies in your area from which the recipient can employ suitable carers.

    The money your mum gets is probably Attendance Allowance.

    Does your dad have a Social Worker? If so try to make arrangements to be there when he or she visits.

    I found also that the local branch of the Alzheimers Society were and indeed still are marvels at providing information and helping with forms etc. I find the support group run by our local branch extremely helpful.

    This site is really a very good starting point for getting helpful information, I am sure one of the Moderators will shortly be giving you a list of suitable web sites and organisations which may be of benefit.

    As a piece of general advice I suggest you read as much as you can manage about both the official services and the voluntary groups in your area.

    Keep on posting, the quickest way to find things out is to ask, there is nearly always someone who has gone through the proccess before you. Most people are very willing to pass on the benefit of their experiences.

    Cheers Barraf
  5. carol

    carol Registered User

    Jun 24, 2004
    If you haven't already done so, join a local Alzheimers support group, they have proved to be an invaluable source of information, from helping to solve practical to financial problems.

    The group that I attend has a community psychiatric nurse, and a carer support worker from the social services that attend each meeting. We also have a librarian that keeps a good stock of books, leaflets and videos for anyone to borrow. There is also an Alzheimers support worker, who has an office and can be contacted at any time, as can any of the committee members.

    Also I very much like the social side, I have made some lovely friends, 23 of us had an early christmas lunch last week, we have all had or are going to have much the same problems, so they will always have an answer for your current situation.

    Love Carol x
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Mivazo, sorry to hear of your problems, as the other's have said, try to find out about a local Alz support group, they will know just what is available in your area. The wandering is a nightmare I know, many sufferers do it unfortunately. It must be very wearing for your Mum. When I first tried my Mum at day care she kept getting out or being disruptive like your Dad, so I stopped it for a while. Later we tried it again and she settled for the most part although she did get sundowning so often played them up a bit in the afternoon. You have to hang on to the thought that it is not your Dad, it's the illness. He would not behave in this way I am sure, it is what the illness has done to him sadly. Love She. XX
  7. Jude

    Jude Registered User

    Dear Mivazo,

    Both of my parents used to attend day care once a week. They hated it but it was literally the only break I ever got since at that time I was a sole carer with no other support, so I can really appreciate how your mother feels.

    The night before was always a huge strain since my father used to complain all evening and invent reasons why they couldn't attend. Usually these were due to one or other of them being 'ill'. Hiding shoes and coats was another favourite. They caused such a fuss that in the end it was easier to withdraw them from the Centre altogether.

    Fortunately we now have additional care assistance so that I manage to have breaks during the time that I am at home with my parents. Home care may be a way out and give your mother a well deserved break on a regular basis.

    Good luck with finding a solution.


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