How do I find a 'respite' break?

Discussion in 'ARCHIVE FORUM: Support discussions' started by BeckyJan, Aug 9, 2007.

  1. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    #1 BeckyJan, Aug 9, 2007
    Last edited: Aug 9, 2007
    I was advised some time ago to search out a suitable care home for possible respite break for me. I have today looked at a possible home.

    My thoughts were to try a place for a couple of days, then maybe a week or two thus creating a familiar atmosphere should my husband ever need a more permanent place.

    Well, the NH is a business and does not hold rooms for respite. I would only be able to get a room (if at all available) at short notice when they are sure it would not be needed for a long term resident. No way could I book a holiday in advance with confidence knowing that my husband had a 'respite' place. (In no way could I phone up one morning, find there was a vacancy, then suddenly whisk him away).

    I will obviously have to do more research locally but it would be interesting to hear how others on TP have managed short respite breaks.

    Best wishes Beckyjan
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Beckyjan
    You should have a SW who should be assisting you with funding respite care.
    Have you had a community assessment?
    This should be the first step,again with the SW.
    Hope this is helpful
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    I have book a flight for the 29th august and social worker phone told me she book a place for my mother for 2 weeks .

    So I don't understand why you can't do that .

    did care homes that you been to or rang up tell you that
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Thanks Norman and Margarita:

    At this stage we would be self funding - and that seems to make us unimportant with the SW. But your comments have made me think I should perhaps push them a little harder. The trouble is I have hardly any faith in the SW who I have met on only a couple of occasions. She just does not seems to understand dementia and the problems around it.

  5. Kayla

    Kayla Registered User

    May 14, 2006
    When my Mum needed some respite care after an operation on her foot, she stayed at a Care Home in an old listed building. Some of the rooms were too small for long term residents and they were put aside for emergencies or respite care.
    The new rules about en-suite accommodation in every room, could mean that older homes have a few spare rooms available for short stays. Mum was very happy at the home for a couple weeks, as it seemed like a hotel and had a beautiful garden as well. It was quite expensive, but helped Mum get over her operation quickly.
    The Home advertised short stays in the local papers.
  6. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Beckyjan

    Your Social worker should arrange respite.

    If your SW is useless, go above him/her to the team leader, supervisor or manager.

    This was what I had to do for everything, I needed for my parents.

    I also got in touch with my local Counciler and MP, when I was told there there were no funds for respite care.

    Low and behold, suddenly our SW, phoned me (unheard of before at least 10 messages on her answer machine) asking for dates when respite was required.

    In MHO Social Services will try to do as little as they can get away with.

    Maybe this isn't true for all councils, but it certainly was for ours and you have to let them know, that you know, what help, you are entitled to have.

    Take care
  7. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    Hi Beckyjan

    All of the respite for my Mum was organised by Social services. The first couple were done just by ringing the SS office and speaking to the person on duty - not the assigned SW, she only got involved when it turned into emergency respite. The self-funding issue should not stop you from receiving this service from them so try ringing them again & speak to the duty officer.

    They will have pre-paid respite beds at care homes in your county and you should be able to book one. Give them a few weeks notice and a choice of dates. Be prepared for them to not necessarily offer you the closet CH to where you live on your given dates. The more flexible you can be the more likely you are to get a better choice of CH. Go on the CSCI website ( to research local homes first so that you will know which ones they are talking about in advance.

    I'm not sure about the money side of things as Mum is not self-funding but I'm sure the duty officer will explain it if you ask.

    Good luck

    Liz x
  8. connie

    connie Registered User

    Mar 7, 2004
    Hi Beckyjan, I was always being told by Lionel's CPN that I should have respite.

    As far as SS or anyone else was concerned that was the end of story. We were then, and still are, self funding.

    I was fortunate in finding good care homes for Lionel, and did manage to book my respite in advance. Takes a lot of time and effort. In my experience, when you fund yourself, you are definitely on your own.

    Hope you have success.
  9. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Thank you all for your replies so far. Your comments about approaching SW are taken 'on board' and I will have another go just to see what comes from it. The problem I see is that they will just want to push David 'anywhere' and I am not in for that!! (except perhaps in pure emergency when choice is not so possible).

    I really wanted to 'organise' it properly. I.e. to try out for a couple of nights (the CPN recommended that and is now backtracking as he says it will not be possible). Then once familiar try a week or two, so that I could get away. Then at least it would not be so strange should it need to be permanent.

    This idea seems to be impossible!! (It would not be if it were a cancer case, as hospices seem to co-operate).

    You have all set me 'thinking' more clearly. My next approach is the local AZ organiser as she heard of some 'hotel' who did day care with a view to familiarizing loved one and then maybe able to offer longer stays - that sounds a good idea but IS IT AVAILABLE - I will report back.

    (Connie: I do agree with you - if one has a bit of money aside then you are definitely on your own).

    Take care all Beckyjan
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    BeckyJan, I understand exactly what you mean and why you want to do it this way.

    Pity the SWs with all their training and professionalism, don`t have the same understanding. ;)

    I hope you get what you want, in the way you want it.

    Love xx
  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi BeckyJan

    This is what happens in our area too. One NH has the SS contract for respite, and four rooms are set aside for this. They have to be booked through SS, even if you're self-funding.

    If you want another NH, it will only be posssible if they have a room free, and you cannot pre-book it.

    It all seems to be pretty much pot luck.

  12. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Beckyjan,I just wish you lived in the northwest area.The company i work for have residential,nursing and dementia homes that offer respite care.They call it "take A break" and carers can have a break for up to 3 weeks.£150 a week though.such a shame.I agree the s/w should be helping you with this.
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    #13 Margarita, Aug 10, 2007
    Last edited: Aug 10, 2007
    I don't know where CPN coming from as you say his backtracking , may be his trying to be diplomatic about it .

    When really if you perceived it as properly when he said
    for me that does not sound helpful , knowing what I know how in how my mother would react to that , if would confuse her more when she come back to me , it take my mother a good week to settle back in to her sounding with me , after being in a routine with respite care home .

    for my mother it does not make her feel or be ready for care home in the future . I feel that a myth made up by someone that never lived with a person with dementia 24/7

    I only started respites as emangancey , they was 2 lots of emangancey , and when they was no emangancey and I wanted a respite for myself , mum was more resilient in going , then when it was an emangancey.

    I can't tell my mother till the night before , Or she get loads of irrational thoughts about it till she upset herself about it and won't sleep . a week of that if I told her to early [which I have in the past] is very stressful for me so that why I tell her the night before

    my point is they is no preparing or doing it properly for respite , that my view anyway , other may think different if so please share
  14. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Perhaps we should move to Lancs. (David is a Yorkshire man so whoops!! - would he remember???).
    Elaine - is your company thinking of expanding?? I feel they would have much support down here in North Derbyshire. We are very much on the outskirts when it comes to dementia care.

    The trouble is I start being totally enthusiastic about these things, then wham I deflate, mainly cos there are so many other things going on and things dont go to plan. I WILL keep trying - all the advice is so helpful.

    Take care all - enjoy the sun, have 'as good as poss' weekend. Beckyjan
  15. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Sorry Margarita - I was 'posting' before I read yours!!

    I think you probably have a good point. So there I am trying to do it all properly and maybe trying just a bit too hard - you may be right and it will be interesting to hear what others think too.

    Love Beckyjan
  16. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Seems to me help over respite happens when the carer starts to look as if they are going to flip. But I am not sure one or two days is the answer. I was recommended to take a week of respite, and did this in the home where my husband went for day care. He is now resident there, so the whole thing sort of melted from one thing to the next. Maybe that is not possible everywhere, but I don't think it would have happened had I not been fairly close to breaking point. I've said on this site before, it is not a good idea to be of the 'mustn't grumble' fraternity. Look wild of eye, and on the brink, and more help is forthcoming.
  17. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Hi Beckyjan
    To be totally honest with you I don't even know how far we do expand.I will check it out on our website.I work for a non profit charitable organisation perhaps there may be some of the kind where you live.I will post back if we do exp[and that elainex
  18. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    sorry beckyjan
    our organisation does only cover the elaine and good luck in finding somewhere.
  19. dave b

    dave b Registered User

    Nov 21, 2006
    sorry if i have misread your thread,but if you are self funding,could you not get people to stay at your place with your husband while you have respite?
    i have done this with mom for the last two years it's not cheap. but they have been brilliant with her,it's worth checking out (i can tell you who i used if you like?)
    xx dave
  20. strawberrywhip

    strawberrywhip Registered User

    Jun 26, 2006
    Self funding ? additional support

    Hi Becky Jan,
    MIL is a self funder, before she went into her R/H she went to an EMI day centre for which we paid : initially. As a self funder she wasn`t entitled to go on the minibus, which would have made things much easier. My husband had to take her in ..and then have a battle at the door, whereas if she had been able to go on the bus she would have regarded it as an exciting outing. We even offered to pay for the bus .. but were still not permitted to use it! (grrrr)
    However ..... just the other day we were sorting out outstanding bills, as she is now in an EMI home.....and were told that we would not have to pay for her day centre care : social services were paying! . Delighted to hear this, but not sure why ...are there new regulations out? Worth asking a few questions I think.

    I`m sure you are aware of all the allowances which are not means tested ; attendance allowance has been very useful : tops up the fees at the home, and we have just applied for the higher rate. Every little helps! While MIL was at home to our amazement after a purely chance discussion with the town hall we also discovered that she did not need to pay poll tax, because of her dementia diagnosis, and I think the fact that she lived alone ; worth chasing up.

    Have social services done a proper assesment of your husbands needs, and have you been through a financial assesment with them and had a proper discussion? Sensitive subject I know but i thought if spouse was at home there are different financial rules and regulatiions.

    I must admit as soon as they kew MIL had it over 21,000 in the bank they dissapeared fairly rapidly. However there mus be more detailed advice for self funders to look at exactly what they are entitled to.

    Sorry to have waffled on a bit .... in our area respite beds are few and far between and only seem to exist in private nursing homes at a hefty price. (1,000 a week at one home I know!). I think there is a serious lack of EMI beds in the community, and the competition for places at the reasonable homes is huge, because social services earmark a lot of beds. In our area priority is given to patients in a hospital bed awaiting EMI placemement in order to free up acute beds. A home in our home town where MIL went to the day centre just nenver has beds for self funders because it is always filled by patients waiting in hospital. We had to look further afield in Sussex where there were more beds. In fact is was only an hours drive away, and the home is lovely.
    Best of luck with your search. I reckon if you are looking for respite you have admitted to yourself you need it. Care for the carers, as one very good care manager once told me ...if you are flagging it all goes to pieces!

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