1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #1 Mjaqmac, Jan 11, 2005
    Last edited: Jan 11, 2005
    Hi everyone. Have been desperately trying to help mum fight yet another chest infection but it has been in vain and we ended up rushing off to hospital yesterday, first ambulance dash of the year. We were there all day and night and she still has not got a bed in a ward.

    Instead of being relieved I am worried sick now in case she falls, or is ignored or not helped to feed properly. Dad and I will be there as much as poss but we are exhausted from the last fews weeks building up to this.

    In the past 3 weeks our usual homehelp has been replaced by a new woman whom I call Godzilla. She appears when she feels like it, (which was 1 of the 7 days she's supposed to come last week) complains that she feels ill, or has a toothache or is in a rush. She said last week, I didn't bother calling in on Wed but I did drive past the house. Hello? Have I missed the introduction of the new home help friendly drive by service? Complaints have been made but no change, until today when I told the boss under no circumstances was the woman to be sent back. I have also been hauling my poor mum up and down stairs for the past year as I am on the "list" for a through the floor lift. After being totally sickened by the whole experience and of rubbish helpers I wrote to my MP and have now created huge amounts of paperwork for all parties concerned (they hate this!) My MP got back to me within 4 days and we are now getting the through the floor lift installed, as I have now learned that my mum is what is known as a respitory cripple and there is no question she could manage stairs. Yet, she has been left for a year to do so. I now have a letter of apology from social services for "the oversight" of mum's case. (This is rubbish as I was told that the team leader of OT said we were not an emergency and could wait our turn, this is what insensed me!)

    So to tie up folks, what I'm saying is, I am one person caring for my mother whom has 3 diseases, I also do her physio everyday, I wash and dress her myself, I now also have been doing all of the house work and ironing that Godzilla has been getting paid to do, whilst I have been nursing mum with a cronic chest infection, I have also been battling the social services and writing letters to my MP to get a lift installed. All I can say is where is the help for the carer's? Whom is going to fight our corner? Are they having a laugh at us or what? I for one have had enough of this and am no longer willing to be "Social Services Skivvy" while someone, somewhere is getting paid for all the jobs I am doing. Action is to be taken here soon. As soon as mum is out of the hospital I am going to become the biggest pain in the ass that is it humanly possible to be. I will be creating huge amounts of paperwork for all concerned demanding answers to questions, ****ing people off no end, in short I will become Victor Meldrew. Let's face it, what's going to happen? Will I lose all my helpers? I think not! I have none anyway. I am the Lone Ranger as many of you out there are. But what is really scary is, what happens to the men and women living alone out there relying on these services and having no one to fight their corner? Why are the Social Services and hospitals in such a bloody awful mess? They didn't used to be, did they?
     
  2. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Hi Magic.
    I'm sorry, I don't have any of the answers(like most). Just wanted to say that I was thinking of you and what you and lots of people out there who aren't getting any help, have to deal with on a day to day basis.
    Sorry to hear that your Mum is back in hospital, I hope that it won't be too long a stay.
    In the meantime I hope you and your dad are able to get some rest.

    Take care.
    Karen.x
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Magic

    Sorry things are so troublesome. Yet you still pepper your post with humour.

    With references to Lone Ranger and The Blessed Victor, how could I not make the attachment?

    Hang on in there - you are doing an amazing job.

    Very Best Wishes
     

    Attached Files:

  4. bjthink

    bjthink Guest

    I sympathise totally. The exploitation of carers by the Statutory Powers That Be is one of the greatest disgraces of our times.
    In the five minutes per day I get to think about myself and my needs, I have a dream of Utopia. That Utopia consists of a Carer Pack being given to everyone who accompanies a patient for a final positive diagnosis of dementia. This pack would contain every fact-sheet produced by the Alzheimer's Society.
    It would also contain the long lists of everyone in the area who will now have some input into the life of the AD sufferer - one expert from every department who could not pass the buck and who has to be on the end of a phone or come to your home and answer questions and provide services. These would include Social Services case-worker, Memory Function Consultant, a designated CPN preferably specially trained in EMI medicine, personal Benefits Advisor, Meals on Wheels, Nursing/HomeHelp specialist who could provide respite care at the drop of a hat, GP specialising in gerontology, Occupational Health expert specialising in disability issues who could immediately assess needs and make (free) adaptations to your home, transport firm who would ferry you and the one you care for to wherever you need to go....etc etc etc.
    In my Utopia, every person diagnosed with dementia would, immediately on diagnosis, be issued with Attendance Allowance as of right.
    And every carer would be contracted to work for a maximum of 35 hours a week - all extra care, including night care, to be provided by the state.
    Every carer would be given an annual allowance equal to the salary they earned before they gave everything up to care for the dementia patient.
    And then I wake up................
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Thanks Karen for your good wishes.

    bj.... if only you were prime minister, or someone resembling a human with a heart was! Maybe we could send Tony to the Wiz of Oz, but needing a brain, courage and a heart might be a tad greedy.

    Braveheart, what can I say? You're an IT genius and you've made me smile.

    Mum has stayed stable today, still no bed in a ward and we are battling terrible storms here in N.Ireland. 90 mile gusts and power strikes. Spring and Summer seem like an eternity away. Is it just me or does the world feel like a horrible place at the moment?
     
  6. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Magic

    So sorry to hear about your Mum, hope there is an improvement soon.

    You are right to stir things up as it is the only way to get anything done.

    I know it is nothing compared with your problem, but I have in the recent past suddenly been given 8 hrs respite care for Margaret, when none was available according to SS. I was also on the waiting list for help from Crossroads who had run out of funds.

    I put in an official complaint through the SS complaints procedure and at the same time involved my local councilor who promised to pass on my remarks to the head of SS in our area.

    Suprise Suprise! Suddenly Crossroads got unexpected extra funding, and SS discovered a Carers Support Fund that apparently nobody was aware of. So we got 4hrs from Crossroads and another 4hrs from a private agency paid for by SS. Crossroad have been this week for the first time and the lady who came to sit with Margaret for 4hrs was brilliant. I haven't yet taken up the private agency deal as I was waiting to see how Margaret would react to a stranger sitting in.

    As you say Magic, anyone alone, or without someone prepared to fight their corner has no chance at all. As I have said before on this forum the ones who shout loudest and longest are the ones who get the most out of the system. It is wrong but when you are battling for a loved one anything goes.

    Hope you get a quick result from your efforts, you certainly need all the help you can get.

    Cheers Barraf
     
  7. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Barraf that's great news, well done. Sure don't you feel like you've achieved something now? Isn't it amazing how, when you become a pain, you are suddenly treated a little better. And rabbits are produced from hats. As they say, the crying child always gets!

    It's exhausting having to chase people and deal with the stress, depression and limited world of a carer but one thing I have found out:
    THEY HATE PAPERWORK. And it generates loads when you get an MP or the likes involved. Give them the paperwork to do, it'll keep them all busy. The social services now have to produce a detailed plan and date that the work for the lift will be finished on or by to the MP. Tee bloody hee!!!
     
  8. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    #8 barraf, Jan 11, 2005
    Last edited: Jan 11, 2005
    Thanks Magic

    Yes I do feel a sense of achievement, but we shouldn't have to fight for every bit of extra help over and above the basic service. Still if that is what it takes, that is what I am prepared to do.

    Nil desperandum illigitimus carbarundum doua

    Cheers Barraf
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Magic, you are totally right in all you say and you have every right to say it too! So sorry to hear your Mum is down with yet another of her chest infections, they just go on and on don't they. (My Mum was the same) Yes, it is such a worry in case they fall in hospital and your concerns about the care and feeding were mine too. You work so hard to care for your Mum and you do a grand job, I am incensed on your behalf at the way you are/have been treated. Your main concern right now is that your Mum gets the care she needs to get better and return home to you. Once that is done, I shall look forward to hearing how you progress with your letters having done the same myself. I did get some changes and some apologys here so lets hope you can over your way too. That Godzilla should be sacked, she is a disgrace to the caring proffession. I do hope things improve for you soon. It was good to see you post, just so sad you are having such a rotten time of it yet again. Lots of love, She. XX
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Barraff, so pleased to hear your dilligence has started to pay off, well done! Love She. XX
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    It seems that every one is echoing my thoughts.
    I have just won a battle with SS ,2x3 hours sessions funded by SS and provided by Crossroads.
    I am now waiting for a nosey parker to come and tell us how much we must contribute towards the sessions.
    I will only disclose Pegs income so we should have fun.
    I am still waiting to hear about direct payments and am told I can't have SS funding and direct payments .
    If I pursue the direct payments my SS funding ,whilst they sort the direct payments will cease
    I am also disgusted at the obstrutive,unhelpful attitude of the females on the SS switch board.
    As someone else said "what happens to the timid souls when the ring in,I expect they say"thank you" and go away.
    I think the switchboard have an attitude and think we are all old fools,this is one old fool who won't go away!!
    The bottom line is work all your life ,pay all your taxes and dues and when you ask for help it ain't there,the whole system stinks,and in particular when any form of mental illness is involved.
    I enjoyed that rant,I have an MP in mind to sort out next.

    Norman
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Norm, who loves ya baby, I do! Go for it boyo, think we are all at it, - out to shake up the system that is! You are as usual so right in what you say, there is no reason I can see why other illnesses get help but if it's a mental illness, you just pay and pay till all the savings are gone, Mum's flat had to be sold when she could no longer live alone, they've had a hell of a lot of that money plus her savings, grrrrr, I'm with you Norm. Love She. XX Oh, by the way, has your frog got home safely yet or has he camped out in that field near the wedding reception hotel? XX
     
  13. bjthink

    bjthink Guest

    That's not true, Norman, it's what they want you to think.
    The Direct Payments make an allowance for what you already have from SS.
    If, like me, you have an SS input, that is therefore yours to do what you like with. You can use that fund to employ your own carers.
    In my case my mother has £80 of SS payments made to her care. Of this 60% goes to the Agency they fund her out to, so if I take over we have an extra 40% of income for the same care input.
    The advantage of Direct Payments is that we can employ our own carers, recruited by DP to our specifications for this amount. We would therefore be getting 40% more care for our money.
    The downside for some is that we have to open a separate bank account to pay for care and to take in to this any SS input money, and from this we have to pay the Nat Ins on any carers we employ, if we take them above the minimum working wage of £76(?) per week (DP will recruit for us and we can choose our carers, and choose what we want them to do). But if we employ more than one carer, then we can get both of them below the minimum, and still have a proper level of care for the one we care for.
    I am in the middle of converting to DP, and since I'm self-employed anyway, it's not a huge hassle to open a separate account for care wages, and to oversee this.
    I want to try to make this thing work. It's bugging me that no one seems to know the mechanics of the scheme, and that it's the blind leading the blinded carers.
    I live in hope. I think I'm the only carer on this board who has a cared-for who wants to live alone, without help from whatever source, and who has to accommodate the needs of the AS sufferer, who is and always has been difficult in the extreme, with what I feel is safe for her and others.
    My mother is sending carers away. She has made makeshift bolts on her door so they can't use the key-case. I need to get someone in there who can deal with her, help her to live comfortably, and understand what she wants. I know what she wants, but she hates me and always has, so I'm a bit at a loss to know what to do next, since she refuses to go into residential care, which is actually what she needs, although she will never admit to it, or accept it. She would have to be Sectioned.
    Direct Payments may be a bridge between her needs, and my capabilities to watch over her. I don't love her. Her unbelievably cruel treatment of me, as a baby and child, is registered with the National Commission for Inquiry into Child Abuse, on which I served in my professional capacity, and to which I offered evidence.
    I shall never let her down. Everything that can be done for her will be done, and if she chooses this "independent" life, such as it is, so be it. I am there for her, and will organise, and put into place, whatever needs to be done.
    She deserves nothing.
    She has me to work for her. She always did. She always hurt me. She always will.
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear BJ, wish I could give you a hug. Your Mum is extremely lucky that you still feel that you can do your best to ensure her well being if she choses to live alone. It is hard, and from what you tell us, you have had a particularly hard time of it. If you need to get help for her, then you must explain the situation, and keep explaining it.They have seen it all before and as long as you and the carers register that she refuses entry, then you can do no more. It does however have some bearing if she deteriorates further into the need for residential care. They would be able to say how things are and if it came to it and your Mum was becoming a danger to herself and others, the powers that be would be legally entitled to insist she be put in a place of safety. Try not to worry more than you are, you are doing your very best for her as it is. Thinking of you, love She. XX
     
  15. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Magimac

    I totally agree with everything you say. The whole system is such a complete mess that the SS can now only 'firefight' ie help those in dannger with no one to help them at all. OR respond to those who complain loud and long....how many postings have we seen on this site that help has been refused until an MP's help has been enlisted or threat of official complaint have been made.

    I applied for NHS free care for my Mum in July - after being stalled for many months I went to see my MP the excellent Nick Palmer, within a week just before Christmas things suddenly started moving and I have been promised a meeting by the end of this month, SS also found time between Xmas and the New Year to do an assessment for Mum when they were on usually on emergency staffing!
    I also found out yesterday that MUm had been moved onto the Highest Nursing band - which nobody had the decency to to tell me about.!

    yours spitting in anger daily if not more!!!!!!!

    Geraldine
     
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Magic, how are things today with your Mum, and with the weather over there? Hope you are all OK. Love She. XX
     
  17. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Have had a dreadful day She. Mum is no better and I received a bill this morning for respite, looking for the amount for a 4 week stay when my mum had only been in respite for 2 weeks. I then had to ring the finance dept of SS and get it cleared up. This is the 3rd mistake they have had made, we are also lying in credit with them as we overpaid by almost £300 on the first calculated respite stay. It was also myself whom found out this error and had to chase them again then, to clear it up.

    I also contacted OT trying to get the lift in before mum comes back as we were promised after Xmas, and I was fobbed off on the phone again today, so a letter to my MP went off again this afternoon letting him know that not only are they making a fool out of me but also of him as he was supposed to receive a detailed schedule of works and completion time. I am also writing to the "Care Manager" a term I use loosely, to ask him exactly what or whom's care he is managing. He couldn't manage a chimps tea party.

    In the midst of all this paperwork I went to the hospital and found wee mummy in a bad way. I am utterly sick of this Lone Ranger stance. I don't have time for all this nonsense and chasing finance depts and OTs, my mother is very ill, I am grieving for the life and people we all used to be, I am saddened by her misery and I don't want to have to be doing all of this alone. In the meantime my father is falling apart watching his darling wee wife suffer. (As most of us on TP are) The weather here is starting to ease slightly and that has been the only bonus today.

    Thanks for thinking of me She and I hope you have a lovely hangover today from your birthday.

    Lots of love.
     
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Magic, when will they get their act together!?! This finance rubbish happens all the time, computer errors, sorry, yeah, I don't think. It was the same for me and for others in our local Alz. group, so I know it happens throughout the system. Is it really so hard, when you think that carers, tired, overwrought carers can do their sums better in between the million other things they have to do than the fully paid finance team of SS and their computers, well, gggrrrrrrrr!! Glad to see you are using your MP to stand your corner, now you have him involved. Although it's a different thing a bit, when my son lost his leg, (he's a thru-hip amputee, confined to a wheelchair) they only awarded him mobility for two years, I wrote to our MP and asked him to ask on my son's behalf when he could expect his leg to grow back! He got him it for life within three weeks! It's not fair that we have to do all these extra things that should automatically just flow is it, on top of all the emotional stuff and the exaustion, wonder how some of the decision makers would cope if they had to don't you?! I can imagine how you are feeling watching your Mum struggling in hospital, you feel so helpless, oh how I long for a magic wand. Just love her, be with her and try to take her little treats to please her. It's all you can do. My Mum particularly enjoyed a little phone call on my mobile to her sister and to her grandchildren etc. just a short one of course and yes she rambled, but she felt real and human and they felt close to her too. So glad the weather has eased for you, do you have power back now? I kept thinking about you when they showed it on the news. Hope tomorrow has better things in store for you in all ways. Love She. XX
     
  19. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Yes She power is on and it is calm again.

    Thanks for all your kind words. I had no idea about your son. You're quite some lady! As sad as it was, I loved your quip to the MP, thank God carers can somehow keep their brain, common sense and humour in tact. You're a star She. Glad to hear I'm not the only one with finance dept problems.

    Keep doing what you're doing. Thank God there are lovely people like you in the world and in the midst of all your troubles you still find time to worry about others. Wish there were more of you She.

    Lots of love.
     
  20. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    dear magic,first time i have posted for a while and what do i find you kicking up a rumpus again. so sorry to hear about your mum but i am so glad you have still got your fighting spirit i will try to catch up on all the new people we seem to have and i am really going to try and get back into the swing of things i have missed you all but things have been a tad rough lately. storm
     

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