1. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all. Some of you will know that we have just had a c.c.assesment for mum who is 91,they gave me a 2hr sitting on tuesdays which i am happy to have. They did also offer to send someone in to get mum up and at bedtime but i would have found this to intrusive.What i would really like is for mum to go into respite now and again because if i think we are never going to have a break it just makes it harder to keep going. I did mention this to the lady who came to do the assesment but she said this was another department.Is there anyone out there that has any idea about the respite system? Do you have to fund and arrange this yourself or will S/S do it? What happens if i have to go into hospital? i also asked about this didnt really get a reply! all she really said about respite was that if i was thinking of wanting some NEXT YEAR i should book now.I have been looking after mum for the past 18yrs 2 of those 24/7.Does anyone know how much respite we get and do we have to pay ?
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Storm, it would depend on your mum's financial assessment. If she is entitled to help with costs, (that's if she has less than about 56 thou. I think) SS should arrange it. Trouble is, there are only a few respite beds to go round so it's a long waiting list. That's why you have to book a long time in advance. If she has to pay full cost, SS can set it up, but you can also arrange respites yourself. I did this with my mum, SS arranged some, but I rang around, found what homes did EMI respites and booked 'em. (Always go and visit the home beforehand, preferably unnanounced and in the morning as you get a good feel for the place that way regarding care etc.) Respite don't come cheap, you are looking at a bill of probably 5-6 hundred if you have to pay. But if you need that break and weigh it against full time care at the standard you give at home it is a) worth it b) you won't get one to one in a home. We used to have one every 4 -6 weeks, I booked them in advance with her SW,what they call ongoing rolling respite. That way I could see on the calender and sometimes it helped a lot to think "I get a break in so many days!" It gave us a chance to have a life other than around mum's needs and the strength to carry on. It was pricy but it stopped me having to put her into full time care. Love, She. XX
     
  3. Jude

    Jude Registered User

    Dear Storm,

    Expensive but true... Sheila is quite correct.

    You need to weigh up the pro's and con's but in the long run, you can hardly do a great job of caring if you are personally totally exhausted.

    You should be able to get some carer's vouchers which you can exchange for respite, free of charge. These may not be available until the next financial year since it's a bit late apparently this year. Book yourself in now. If you have the resources to pay privately until then, I would do so.

    Best wishes,

    Jude
     
  4. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, Just to let you know i had my first 2hrs of freedom yesterday ,didnt get off to agreat start because the sitter came early so mum refused to go to loo! I went shopping anyway and mum had been to the loo for the sitter no problem even the dogs liked the sitter! The only thing i found strange was that mum just seemed to accept this stranger coming in and never even questioned it even when she had gone she doesnt usally like any change at all?
     
  5. Jude

    Jude Registered User

    Dear Storm,

    Good news indeed...! Hopefully you will be able to get a few more hours to give you a really good break for at least 6 hours a week.

    Jude
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Storm, funny you should say that. My mum often used to create merry hell at the thought of change, then accepted it without a word when it happened! Glad you had a break, love, She. XX
     
  7. Heather A

    Heather A Registered User

    Nov 2, 2003
    7
    Co Durham
    Hi Storm

    With regard to a sitting service, as a carer you are entitled to a carers assessment by SS. I had one and was able to say how many hours a week I wanted to be able to continue with a life outside 24/7 caring. I was then put on the direct payment scheme whereby £X was put into a designated direct payment bank account and this is used to pay the sitter. This is not means tested and I am sure it is now a national scheme not just available in County Durham although I believe they ran a pilot of the scheme. Respite contributions are based on your mothers financial situation not yours so depending on her situation you may get a carers support grant towards respite care costs. I did for my husband.
    Hope this is of some use. Certainly worth a call to Social services.

    Heather A
     
  8. Heather A

    Heather A Registered User

    Nov 2, 2003
    7
    Co Durham
    Hi again Storm

    Forgot to mention you can request regular respite eg every four weeks or every six whatever you feel you need/want. However as mentioned before the difficulty arises because of the lack of respite beds. But if you find a home you are happy with you can book a bed in advance for respite at regular intervals.

    Heather A
     
  9. Jude

    Jude Registered User

    #9 Jude, Sep 30, 2004
    Last edited: Sep 30, 2004
    Dear Heather,

    Many thanks for your heartening information. I wonder why the SS don't bother to tell carers such things? They appear to have a policy of active confusion, so that we all have to glean small pieces of information and try and link it all together here on TP.

    Perhaps it's because they do not have a national initiative for home care procedures or maybe they really are totally and utterly incompetent.

    It might be a bright idea to ask somebody from the SS to contribute to TP to answer 'most asked' questions on a regular basis. Of course, that would have to be on the understanding that we all didn't circle the poor victim for a feeding frenzied shark attack....

    Jude
     
  10. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all, Thanks for your relys i am more baffeled than ever,after they did mums assesment they sent the care plan out which had the 2hrs a week on i did phone to query the fact that it also said i had already had a carers assesment in the past which i wasnt aware of the s/s then told me that the S/W who arranged mums shower had done one! I then asked again about respite care and was told i will get asupport worker from the mental health team when they get round to assesing us! how many dam assesments do we need i am fed up with the lot of them i feel like giving up and just coping on my own i am not begging for care. Mum passed the money from the sale of her house onto us which was less than 45,000 and her solicitor was infomed of this he said that was ok. So how would we stand money wise with respite? I did ask about the voucher scheme but they told me that i would be like a employer and would have to sort out tax and insurance for whomever i got in to care? I THINK IM GOING MAD.


    STORM
     
  11. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #11 Mjaqmac, Sep 30, 2004
    Last edited: Sep 30, 2004
    Folks I was meant to be getting 2 weeks in with mum in respite and 2 weeks at home, dad and I were ecstatic we thought it was a God send, but they have left it now that because mum got stroppy with the medication we may not get any more respite there. It's such a shame that a few days made such a difference after them all telling what a joy mum was to have and urging us to leave her in every week. Talk about turncoats! What do they expect with dementia? If mum was an angel 24/7 I wouldn't want her out of the bloody house! Not a happy Magic today I'm afraid!
     
  12. Jude

    Jude Registered User

    Dear Storm,

    I am now just as confused as you!

    If you have an assessment as a carer, then YOU have to sign the forms personally to say that the information is correct. So the SW, whomever that is[?] can't possibly have done so without YOUR permission and YOUR signature, surely?

    Vouchers are based on YOUR assessment and so far as I understand are NOT means tested, which is the whole point of having vouchers in the first place. So tax and all that other stuff doesn't apply and your mother's finances are again, absolutely nothing to do with the issue. It's YOU that they are assessing.

    It might be time to start jumping up and down Storm! No wonder we all get into such a frenzy about these things - who needs it!!

    Jude
     
  13. Jude

    Jude Registered User

    Dear Magic,

    Get on the phone and speak to the Manager. Respite Homes have to give medication every single day to their patients and I'm sure they aren't all happily gulping down tablets without some of them refusing to do so, or at least making a fuss about it.

    What next! Homes refuse to accept respite patients who can't go to the loo by themselves....? This is totally absurd of course. As you say, it's the whole point of the exercise ....

    Jude
     
  14. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Jude, you're right. Do you mean to say in the whole history of that respite place my mum is the only one whom made a fuss about tablets? She did, by the way, take them all in the end, but not in the nice Stepford Wives way they like down there.
    Wee mummy was brilliant today. The nurse came out and she sat with her arm held out while she had the needle in her for ages, she didn't pull away or be annoyed or anything, but the nurse couldn't get a vein and had to leave. I asked her to examine mum but she said she was just an auxiliary. She said she would go back and tell them mum was too agitated for the blood test to work. That was my mistake for warning her beforehand mum had dementia and might get a bit agitated.
    A classic case of someone whom is not fit for the job blaming dementia for their own incompetence. Isn't dementia a handy tool for these eejits?
    I am getting really sick and tired of the so called "caring" professions' staff.
     
  15. Jude

    Jude Registered User

    Dear Magic,

    I've been spitting chips all day.

    Answering Storm's posts about incompetent SS assessments and your posts about even more incompetent Respite Homes and Nursing Aides. Oh, for God's sake - can't any of them do anything correctly??

    It seems that the sad fact must be that anyone with an ounce of brains and initiative is firmly indoors caring for their own loved ones. And when they aren't taken up with that, they are filling in stupid assessment forms or completing 47 pages of job application bumpf.

    Unfortunately we can't go on strike and have a demo, since there would be nobody left to look after those that we are looking after. Talk about a no-win situation.

    Jude
     
  16. Chesca

    Chesca Guest

    Dear Magic

    Is she a nurse or an auxilliary? Where I come from an auxilliary doesn't take blood tests she auxes, whatever that is.

    The inability to administer medication does not just extend to nursing homes. No! I am here to tell you that hospitals suffer the same problems. Yes, hospitals with their 'fully qualified and experienced professional' staff. The staff of the hospital wherein my mother was being assessed for 'suitable medication' were unable to administer the cocktail of pills she had been taking for about five years prior, albeit with our patience and allowing for her own pace and a little respect for her remaining independence.

    The hospital staff's answer to this problem was to call a meeting with the psychiatrist and us with the aim of Sectioning my mother in order to do administer medication, with force if necessary - and with the funeral over my dead body! According to them they had 'tried everything' (a condition of any such Section act) and when I suggested that they hadn't, we got the mantra about 'in their experience as fully qualified and experienced professionals'. They hadn't asked us, the family how we dealt with it. The psychiatrist agreed with us and the fully qualified and experienced professional staff, highly put out at the suggestion she may have been wrong, never spoke to me again! I also made a formal complaint about the CPN who had endorsed the Section, who had known mum for some years and well understood how we managed the medication. Haven't seen hide nor hair of the woman since and every night I cry myself to sleep at this sad loss!!

    It's an eternal problem and one of the things I've had to let go of is that my routine is of no consequence; AD calls the shots and I have to go with the flow.

    I do seem to remember you saying at some earlier date that the respite place is not EMI (not that it makes much difference that the staff are supposedly trained to deal with AD) and you may find eventually that it may seriously become a problem for them. But always defend your Ma. She is not aggressive, never has been. It's the AD. DO NOT let them note her in their records as 'aggressive' - more of which later zzzzzzzzzzzzzzzzzzzzz

    Lots of love
    Chesca
     
  17. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Magic, I think spitting feathers is the words i need how dare the nurse say your mum was agitated when she was being so good and as for the care home i really would complain. I worked in a care home for 3yrs and believe me the only time guest wouldnt take pills was when the so called carers hadnt got the time or the skills to give it to them.I had to leave in the end because icouldnt take how the conveyer belt system worked.I dont want to tar all homes the same but i definatly would not go on the managers word!IAM IN A FIGHTING MOOD NOW it is time we as carers stood up for our rights and the rights of people we care for!Do not let them blame your mum talk about kicking some one when thier down.You have spurred me on to get out of my corner and fight bureaucracy which as gone mad.luv STORM
     
  18. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Got in touch with my GP to see if there are liquid forms of the meds. She came back today after checking but there aren't any. She said to crush them, but to get in touch with the chemist first to see which ones might not be crushed. He is now getting back to me, but the antidepressent capsule can't be touched as it is slow release and needs to stay like that.
    I am really fed up today. People with dementia are treated like second class citizens and us, their carers have to stand cap in hand listening to a load of clap trap, in case we upset everything and find ourselves back as the Lone Ranger. It looks like it's me and Tonto (Dad) back to caring 24/7 on our Todds again. Don't know if I really care to be honest. Have stood smiling at a load of incompetence eejits lately whom seems to have an awful lot of tea to drink and sweets to eat. Am utterly disgusted with the whole system.

    Seriously Miffed Magic.
     
  19. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    HEY MAGIC, come on my band wagon! WE ARE GOING TO FIGHT i felt like you earlier but we are not giving in we have to keep going because of the fact that we do care.Sod the system remember they are not always right as i am finding out and if we have to tell them how to do thier jobs then we will or we could always get jude to blow up thier computers they would be lost without them! Ican feel a headline coming on THE LONE RANGER RIDES AGAIN. LUV storm
     
  20. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear all, reading these posts is like reading my diary from when Mum was in hospital. They used to leave all her meds for me to do when I went in to feed her, "she takes them so much better for you!" only because I gave her time and attention! If you are looking for recruits to your cause, I'm there, so are my diaries. Love, She. XX
     

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