1. Carer Respite Break

    Posted by andromeda63 at Tue May 08, 2012 7:57 pm

    New to this forum, I have been a carer for some years for my partner. Somehow I changed from caring for my partner as a loved one to being a carer for my partner. Over the years we have struggled by with basic benefits and retirement pension, as have many others.

    Some weeks ago my wife needed to be in hospital for several weeks, and was discharged without a care plan for home life. Some days later she
    became quite unable to stand or walk, and I needed to arrange short term
    support and rehab. This took a day to arrange, but soon I was getting
    a team of 2 carers visiting 4 times a day, to help with toiletting and
    care etc. as I could not manage on my own.

    Having had 10 days and nights without sleep, getting headaches and feeling dizzy I begged for some emergency respite overnight but was
    refused, instead offered extra night-time visits. This would have meant that even if I had dropped off I needed to get up to answer the carers as I had to wait weeks for even a key-safe.

    I was told that if I just up and went to a bed and breakfast, and something happened then they would have to arrange something for my wife, however they could not do anything as long as I was at home. This is ridiculous, and still is as I still cannot get even one night off.
    The websites from the council all say I am entitled to up to 4 respite breaks a year, but I have never had one since I took the carer role.

    Has anyone else had this problem, how did they cope and just what does one have to do to get a night off, let alone one of the promised weeks ?

    Do I really have to leave my wife and live alone just to get some sleep or just leave her alone for days on end and hope for the best. We have no savings to speak of, have no family and friends support network and now think that if I do not get a night or two of sleep I will be in need of care myself - Heaven forbid.

    The Care Manager just talks down to me, says I am doing a great job and should be proud. Pride comes before a fall and I am falling, badly.

  2. Re: Carer Respite Break

    Posted by swissmiss at Thu May 10, 2012 8:15 pm

    Hi Andromeda
    Sadly this is pretty normal. So long as you carry on and many carers have been doing so for years, managing on very strange life and sleep plans and becoming isolated as a result. However, if you are determined enough it is not impossible to get respite. My advice would be to detail what you can and cannot cope with or without in writing and tell Social Services that unless they meet those requirements they will have to find full time residential care for your wife. If they will have to pay that makes your case stronger as respite will be cheaper. That usually makes them sit up and take notice. Then you need to find the respite as they can be very lazy over it. Visit some care homes and see if one makes you feel happy about your wife staying there to give you a break. At least then you can book and schedule it without relying on individual carers who tend to rush in and out and arent that reliable. You and your wife will have to be a little bit open about the standards as it isnt ever like home. But the break will give you both a feeling of being less isolated and the ability to manage your lives .
    Good luck
    Karen :)

  3. Re: Carer Respite Break

    Posted by andromeda63 at Thu May 10, 2012 9:56 pm

    Karen:
    Thanks for your words of support. My wife and I have discussed a respite
    break before, and she did agree that I need to recharge my batteries and have an unrestricted break. However, the local Social Services seem to have intimidated her by saying that she may have to fund her care even though we are well below the savings threshold, and that these breaks are not a legal right just something that they would like to achieve.

    My wife has now said that she will not agree to me having a respite break away on my own, which fits in nicely with the local authority statement that the "service user" has to agree to any breaks. I hate that term, SU as shown in the care sheets.

    I am trying to find somewhere I may get impartial advice as to my "rights" and the obligations Social Services have to meet, as I feel that I am being misled somewhere. One of the most basic rights should be for anyone to be able to go to sleep when they are tired, and wake up when they are not. This is being denied me.

    One bright spark [a carer] suggested that I leave my wife, find my own accommodation nearby, which as a pensioner I could get housing and council tax benefit for, then apply to be a carer for 35 hours or more and get an allowance for that as well. What a way to run a Social
    "Service"

  4. Re: Carer Respite Break

    Posted by swissmiss at Fri May 11, 2012 1:00 am

    Sounds like creative thinking!!! :D
    Find out whether your council support moderate,substantial or critical needs. This was new to me this year but it does make a difference to what they will fund. Most councils no longer do moderate and some have restricted it to critical which means virtually nothing. Another idea is Park House at Sandringham...Leonard Cheshire hotel...quite nice place, next to Sandringham estate which you can walk into, they provide health care so you get a break from caring but you can stay together.Charges vary according to the time of year and needs. http://www.parkhousehotel.org.uk/
    Another source of funding is http://www.respiteassociation.org/Home.aspx
    SS spout a load of rubbish and the answers you get vary day to day. Keep asking until you get the one you want!!! To get any respite...first in 20 years...I had to sit in for 7 hours at the hospital one Sunday because my son wouldnt sleep and was hitting himself and I couldnt therefore sleep and after weeks of it I finally exploded. It worked...got emergency respite and theoretical 5 nights a month but no services as yet!!
    As for your wife allowing it..another problem. My husband wouldnt let me go away...he needed me with him...part of his anxiety disorder. I needed the break but didnt get it. I was knackered..he had to see me struggling and that added to his mental pressure..he plummetted into critical depression and took his own life. He has thanked me through a medium for looking after him and not putting him in a respite home...but he is dead...not a result. You have to keep at this. I think that if you could find somewhere lovely your wife would be happier...fear of it being awful wont help. I dont know where you live but if you could get to Sandringham it would help you both.
    I do think that a definitive statement to SS of what you need to carry on is a good starting point. Another tip is to send simultaneous emails with it in to your SW, her manager, your GP and finally, when I really couldnt cope the local community WPC took on my case and fought on my behalf!!! In general people cannot believe how little help carers get..she was shocked and felt motivated to sort it for me. You have to let them know you are desperate ...they are trained to ignore polite requests!!!
    Karen :)
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