How much respite care do you receive?

Discussion in 'ARCHIVE FORUM: Support discussions' started by currywurst, Mar 23, 2006.

  1. currywurst

    currywurst Registered User

    Jan 29, 2006
    I was wondering how much respite care everyone here receives?

    I am filling in my carer’s assessment form and a question asks what help as a carer would I like/find most effective.

    What I would really like is regular respite care but I don’t know if there is a certain amount you are entitled to or if it depends on circumstances etc.

    It had been arranged that a family member would look after mum while my partner and I had a break but this offer appears to be withdrawn now, so I have had to ask SS for help but am unsure how the system works, When I did call them I was asked how soon I wanted a break, he said I don’t want to put words in your mouth but how stressed, tired are you? This made me feel terribly guilty for asking for help and I didn’t know what to say so I just said that I had been looking after mum for a year without a break and really needed one, so he asked me to call back with a couple of dates, which I did. He obviously didn’t think I needed it too soon as the first date I gave him has past! I would just be glad to hear what other’s receive.

    Many thanks
  2. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Currywurst

    My experience tells me that there is no "entitlement" to respite but there is a desperate need. After a year of caring you need a break and often nobody will listen until you stamp your feet and shout so go for it - make a damn nuisance of yourself.

    There may be a voluntary group in your area who can help and if so SS should be aware of them so make enquiries, if you are not in touch with your local branch of the Alzheimers Society do so now. What about friends? I have been very surprised at the help and support of not only friends but also people I hardly know.

    I have been very lucky with social services and have had offers of help from them but unfortunately Mary has rejected them all. Also the CPN has been very helpful - have you tried contacting him/her? Let us know how you get on.


  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  4. zan

    zan Registered User

    Jan 4, 2006
    Dear Currywurst, My Mum had respite on a private basis every two months. This was a good length of time for her. She didn't have alzheimers although I think that she may have had vascular dementia. Mum and Dad together had respite through social services. We were told that they were allowed 6 weeks total for the year. I used to work in a respite home. Some people had a regular 6 weekly package of care, i.e. 6 weeks out , 1 week in, others had an occasional week where their carers were on holiday, and others had an inbetween of these two. Ask for what you think would be best for you. Remember that it often takes people with AD a while to settle into somewhere new. 2 weeks together can sometimes give you a better break than odd weeks, as the first few days are spent adjusting. Good luck from Zan.
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, Mar 23, 2006
    Last edited: Mar 23, 2006
    I was told that I am entitled to 8 weeks a year; I took my first break in October for 1 week a social worker arrange for a car to pick mum & me up and to take us back home, I was really surprised about that & they paid for it all.

    Then had 10 days over Christmas, to sort out a funeral aboard ,again they pick me mum up

    You should not have to justified how stress you are & don’t feel guilty, but I no that feeling, it come from not knowing your rights on this issue.

    Keep ringing the Social worker up do you have an altercated social? Or are you just talking to a duty Social worker? I ring the town hall & ask for the elderly section & talk to a social worker on duty now she got to know me so I always ask for her

    My mother is now in what they call an emergency respite placement, its been 4 weeks now & was worried that would take up all my entailment, but was told it would not, because its an emergency as I am caring for my brother who also has a mental illness.

    If I was you I would want to no why
    phone him take his name & talk to someone above him
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    Two thoughts occurred to me on reading this (& I hope there aren't too many who will shoot me down in flames for being naive & wrong!!)

    1. The person you spoke to may have been 'prompting' you to be helpful; I think he may need a clear indication of need from you in order to get things moving (why he said 'I don’t want to put words in your mouth", because he needed it to have come from you).
    Guilt goes so hand-in-hand with caring for someone that it is easy to be over-sensitive - even paranoid - about hidden meanings in what other people say. Resist it. You are doing your best, and most people will try to be helpful if they can, and if they can understand clearly HOW they can help.

    2. A follow-up call from you might have reminded them of your request for help, and obtained a definite result.
    "The squeaky wheel gets the grease"

    Try again, and I hope you have better luck next time.

    Best wishes
  8. currywurst

    currywurst Registered User

    Jan 29, 2006
    Thank you for all your responses, I can see I have a lot of calls to make in the coming week!

    Margarita you are quite right

    That is the problem, I don't know. Because I thought that my family were going to care for mum while we had a break I didn't really look into any other care package but now wth all your suggestions I can make a start. Thank you too Margarita for posting the link.

    You too are right Lynne and I appreciate your thoughts. I WAS over sensitive at the time as I had hoped that I wouldn't have to have mum go into respite care as she doesn't cope with change at all well and I feel incredibly guilty that I have to leave her, so yes I probably was/am paranoid.

    It's very re-assuring to know though that there are people here who can offer advice.

    Thank you.
  9. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England
    respite care

    Every time my husband was seen by his doctor I was asked if I needed respite care but I refused as I didn't think my husband would tolerate it. To cut a long story short-on New years Day I fell down a few stairs in the house and badly sprained both ankles. I was told I had to keep off them for at least 3 days and the A&E nurse started the ball rolling for my husband to go into a resource centre for 10 days. He took to it like a duck to water[to my amazement] so I arranged at the same time for him to go in again in February so I could give my daughter a hand after a major operation. Again he was fine for a week and then got a bit agitated. The Manager of the centre said perhaps a week was long enough at a time. I have not been given any indication of how many times he may go. The trouble is it costs us £370 a week. So that can put a curb on it.
    In a previous letter I read how a lady missed her Mother although she was still alive. That's how I feel about my Husband. All the drives out and chatting and joking have gone, although he does still raise a smile
    Best wishes to everybody
  10. Bets

    Bets Registered User

    Aug 11, 2005
    South-East London, UK
    Hi Mocha,

    Don't know your circumstances, but have you and your husband had any social services assessments? You may find that he qualifies for help with funding of respite care.

  11. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England
    from Mocha re care charges

    Hi Bets and Norman,
    Thanks for your interest regarding respite care charges. So far I have paid the full amount because I think our savings are above the threshold. I have some money in my own name which I don't know if this is taken into account. My Husband has shares in his name only and we have a smallish joint account. I know he has always been reluctant about people knowing your finances. Can anybody give me the figures and do they vary between authorities?
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
  13. currywurst

    currywurst Registered User

    Jan 29, 2006
    Just an update. Called SS and respite is still on track for 25th April. It seems that they want to do my carer’s assessment and also re-assess mum just to make sure they provide the right care. Thanks to everyone who replied. I was having a difficult week last week as I was feeling very angry that my sister is no longer going to look after mum so I could have a break and I was struggling to accept that mum will have to go into respite at all, but I can’t carry on 24/7. I feel a lot brighter this week though.

    Thanks again.
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    Pleased to hear the good news, doesn’t worry I felt the same, your mum may even enjoy it my mum did.

    Are you going anywhere Nice? Or just taking time out for you?

    I felt really wired ,when I took my first break from mum did not no what to do with myself , but I did enjoy it .
  15. #16 Poppetweb, Apr 1, 2006
    Last edited: Apr 1, 2006
    My father, a sufferer, received two days care a week where he attended a day centre to give my mum a break (his only full-time carer).

    This has been increased to three days a week only recently but the day centre have been intimating that they are finding it difficult to cope and would prefer my mother to consider allowing my father to go into a home permanently. They have not said this directly but reading between the lines....:confused:

    He was diagnosed with Alzheimers over 5 years ago and things are not easy at home.
  16. Margarita

    Margarita Registered User

    Feb 17, 2006

    Contact the AD group in your area & he can join in one of there day centres, they really are good

    I did this with my mum she loves it, she went 2 times a week, they play bingo all sorts ,they just as good even better ,because they Understand
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    Just thought is it an Alzheimer’s group? Or just an old people day centre ?
  18. It's a day centre dedicated to patients with Alzheimers.
  19. Update

    Just thought I'd update everyone on the current situation.

    My father was taken into hospital last Thursday after suffering the whole day with pain in his stomach, well that was as much as he could point to.

    The GP came out that evening and prescribed some painkillers but it turned out to be more serious. A few hours after I collected the prescription at 8pm (from ADSA) I had to call NHS Direct. looking back it would have been quicker to call for an ambulance there and then because it was almost midnight when one came.

    We arrived at Accident and Emergency and there was a 4 hour waiting time to see a doctor. The nurses were very good and helped out with Oxygen and drips until the doctor arrived at 4am. She was about 25 years old and very efficient. She managed to push back the hernia temporaryily to make it more comfortable for him, something the GP's has decided not to do.

    Just to recap - My father suffers obviously from Alzheimer's and Prostate Cancer (which is under control) but was taken into hospital that evening for a hernia problem. He had had a repair only four years before but it had come away again.

    It was touch and go them whether or not they should operate given his mental condition.

    Four year's down the line things are much worse but they decided to operate on Monday afternoon.

    To cut a long story short, the operation has been successful in terms of the hernia. He is up and around the ward but still a little uneasy on his feet. His mental condition seems to have deteriorated somewhat, perhaps due to the operation(??)

    Anyway, he will be more comfortable and that's all that matters. The hospital were wanting to release him herfore he could urinate or eat properly (which my mother and I thought unusual) but my mother said she wouldn't be able to cope at home as he may not be able to use stairs. (She has first floor bathroom and toilet).

    Social workers have become involved and said the hospital muts kep him a few days extra until a suitable home is found for at least 2 weeks where he can receive 'intermediate' care.

    During this time my mother will think long and hard about his future (either back at home or in primary care).

    Has anyone else been in this position?

    The hosital care has been very good on the whole.


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