Help needed by Magic again!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Mjaqmac, Feb 1, 2005.

  1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #1 Mjaqmac, Feb 1, 2005
    Last edited: Feb 1, 2005
    Hi everyone.

    Mum is in the elderly care unit at the hospital until I can get the lift installed to take her upstairs. No one will give me a date for the lift, they wouldn't even give the MP I enlisted to represent me a date just said that we are high priority and in the next few weeks. My mum can't wait that long.
    She is refusing food, medications, and oxgen and is very frightened, I think she may be fretting for me as she never does any of these things at home and I can't get up everyday to see her as the hosp is some distance away, there are other complications with visiting too. In short, I can't always be there as I usually am.

    I have asked the nurse should I take her home, she said what back up do you have? What back up have I ever had, just me and dad. I will have to sleep her somewhere downstairs with dad but everywhere is pretty dangerous for a fall with fireplaces etc and steps into rooms.

    I don't know where to turn, I am constantly told to see my social worker I only have a CPN whom has had nothing to do with us and a temp care manager, the social worker of the ward just wants a date for the lift to get mum's bed, she's only been in there since Thurs.

    Should I just take mum home, but what do I do when the dirty week's work starts for the lift installation. I don't know where to turn. Why is no one helping me?

    Please advice someone quickly. I don't want mum to die up there.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Magic, oh dear, you really are going through hell right now aren't you? Does your MP know about all this and the fact your Mum is not eating etc? Can he insist that they set up a care package immediately so that you can bring her home and nurse her downstairs? We used baby gates to stop my Mum getting somewhere unsafe or where there were steps she could fall down, could you do that? The only other thing is to get private carers in if you could afford to, I did that at the beginning with Mum for a while, (but I didn't advertise it so they still thought I needed a proper care package ASAP. ) You must be exhausted and worried out of your mind. Is your Mum mobile or does she need a lot of help? If you had to, could you get family to help more now in the circumstances? Sorry I haven't put forward a real answer, there isn't one is there, you want her home like yesterday, I can see that, but without any help, it would be really tough on you and your Dad. If only you lived in my street, I'd be there like a shot! My thoughts are with you, much love, She. XX
     
  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Thank you Sheila, for the quick response. Please can I come and live in your street, it would be lovely to have you nearby.

    Since my last post I have found out mum has started another chest infection.

    I told the doctor there looked to be another starting when I was up on Sunday but obvioulsy I'm just the carer and know nothing!

    They have started her on more antibiotics today. Hopefully she will now start to eat and take her meds, but I am going to have to get to that hosp everyday no matter what else, to give her the meds and do her physio, she's not getting it everyday and it's absolutley essential. Why does no one listen to the carers?
     
  4. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Magic
    My heart goes out to you, it’s a shame we all live so far apart keep strong, I hope tomorrow brings better news.
    There are two houses on my street for sale maybe we should set up a commune.
    Anne
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Magic, yes I think you are right, hard as it is, you need to get to the hospital every day. I know now that it was only what I fed my Mum myself that she had each day. Like you, I wonder when they will really start listening to us. At least the chest infection explains why she has been down and not responding so well, hopefully the antibiotics and your presence will see her through. You have such a heavy load Magic, thinking of you, much love, She. XX Ann, thats a darn good idea!! Love She. XX
     
  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Yes Anne, that would be great. Imagine having somewhere with friendly faces whom listen to your concerns etc. Although to be fair, I found a lovely nurse at the hospital and when I broke down talking to her today (poor love got my whole life story) she really listened to me and pestered the doc until he looked at mum for a chest infection.

    There are still angels in those wards. Thank God I found one today.

    Thank you for your support again, I panic and post and then someone always makes me feel better with a few kind words and a bit of reason.

    She, you are so calming.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Magic

    I do hope you can manage something here.

    I get really mad about this stuff, then I remember the basic equation [please excuse programming type notation]:

    carer cost = 0

    if carer cost = 0 then ignore

    ...in other words, if they had to pay for the care we put in, then they might listen to us. As it is, we're trench fodder and as such, expendable. They only worry if they believe we are about to go AWOL or snuff it [with implications for costs from their own budgets] - then they take notice.

    Caring is not their vocation. It is their spreadsheet that rules. There's another equation:

    if costs are greater than budget then you don't get promotion/keep your job/whatever

    Best wishes
    Bruce
     
  8. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Help needed by Magic again

    Hello Magic

    I am afraid Bruce is right about cost being the be all and end all when it comes to SS.

    My advice is complain long and bitterly, to your MP again, to your local Councillor and through the official SS complaints procedure, write to your local newspaper and don't pull any punches. There is nothing they hate more than having to deal with awkward and difficult carers who keep shouting the odds about the service or lack of it.

    I know that sort of fight is the last thing you will feel like doing when you are worried to death about your mother's condition, but unless you are very lucky that is the only way to get anything constructive done.

    I hope your mum is improving with the antibiotics, do try and look after yourself as much as you possibly can.

    Wishing you the best of luck.

    Barraf
     
  9. bjthink

    bjthink Guest

    Magic, because you're my role model, will you allow me to say summat? It's this. You know more than anyone what your mother needs. But, although your input on this is essential, maybe you're not best placed to provide it? And maybe you should consider just yelling and demanding, because others actually can provide it?
    Say what you're happy with, and what you know won't work. Have faith in your own voice. And, believe me, YOUR voice has to be listened to, although They won't ever admit to that.
    Best of luck, mate.
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    #10 Norman, Feb 1, 2005
    Last edited: Feb 1, 2005
    I have said this before"what a pity it is that the ones that shout the loudest get what they want"
    I have just been shouting and got funding for sitters from SS.
    I am now waiting for direct payments to be set up.
    What we need is to be able to shout together then all would get help.
    What happened to our search for a carers champion? Did it just die or what?
    That is what we need a person of some influence to shout with us,not for us but with us.
    Anybody know what happened?
    Norman :confused:

    Magic sorry to hear of your problems,hope they improve soon
    Norman
     
  11. Jude

    Jude Registered User

    Wee Mummy

    Dear Magic,

    Sorry to hear about all your current worries. Your stress level must be through the roof again. Looks like virtually taking up residence at the hospital is going to be the only solution.

    Get on to your MP again and see if he can push some action through. Start yelling! You can't be expected to cope with all these recurring problems alone - it's too much for one person.

    Good to hear that you at least have a sympathetic ear at the hospital.

    Jude
     
  12. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Jude, the nurses in that particular ward are very nice and trained for dementia and Alz patients, it makes such a difference. Unfortunately mum was in a very bad way today. Still refusing meds etc, I spent the whole day at the hosp and cared for her and got the meds in but had a bit of a run in with a sibling, which to be honest, I could have done without.

    He thinks I shouldn't be having this huge through the floor lift installed for mum and should sleep her and dad downstairs and wash mum in a basin or get a shower put in downstairs. I tried to explain that dad is 78 and that would be a big change in his routine too, moving out of the room they have shared for 39 years. He got quite angry with me and said I was ruining the property.

    All I'm trying to do is adapt the house for mum's special needs so that she has the freedom of her own home forever. It's a 7 day job for a lifetimes aid. I can't stop thinking about the comment, all I want is mum better and home and an easier life for her, so does dad. Family can be so idiotic and unfeeling sometimes, I feel like I have forced another chest infection on mum because of the prolonged stay at hosp because of the lift episode. In the meantime no one will speak to me about the damned thing and they are all dodging my phonecalls from care manager to OT, even the MP had no effect in getting a date, yes he pushed the process on very quickly, but to be honest I feel like I still have a million miles to travel.

    No one listens because no one cares.
     
  13. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Magic
    I would not worry about the remarks of someone worried about their inheritance.
    I wish we could help you more,but Magic we do listen, and we do care

    wishing better days for you
    Norman
     
  14. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    I know you and the gang listen and care Stormin', that's why I post because it always helps me personally.

    I mean the people being paid to care for us carers and our loved ones don't listen to us. I really am seeing a very uncaring society until of course, it happens to a loved one of their own! The people whom have helped me the most are those I've encountered whom have lived this nightmare themselves, not the so called professionals whom are paid to help and advise us.

    that's just my own experience of being a carer and I find it very sad and disheartening.
     
  15. bjthink

    bjthink Guest

    My thoughts and my love are with you.
    You will survive because you owe it to yourself. You can get though this, Magic.
    What does Norman say - one day at a time? And tomorrow may bring better help, and care for you.
    xxx
     
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    I know bj, I'm starting to gather the old fighting spirit up again thanks to the TP troops.

    Sometimes you just think you can't take anymore, but I'm not going to be ground down, mum needs me and I will always be there for her, there are plenty of others coping with much worse here.

    Think I will put on my white beauty queen shoes and have a dance round my handbag to Gloria Gaynor.

    All together now folks...

    "I will survive"
     
  17. bjthink

    bjthink Guest

    Magic Queen, tonight I decided that I was so angry with the way A&E dealt with my mother, that I've put in a complaint to the hozzie, and done that 'don't you know who I am?' routine that I've always avoided.
    But what the hell. Let's throw the three piece suite at these scoundrels, and their minions!!! And then the footstool! And the pouffe!
    Magic, I'm with you all the way!
    Will even come up with my 'don't you know who I am?' routine on your behalf, but they'll only say 'NO' and we'll both be up the creek without a pouffe..............
     
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Magic and BJ, you are both going through such a difficult time right now, and yet through it all you both have not lost your sense of humour, hang on in there! As there wouldn't be enough room for us all round your handbag Magic, lets all go "Dancin' in the Street "so we get some "Fame" and as BJ says, they "Remember Our Name", Alzheimers/dementia that is! Magic, don't worry yourself, like Norm says, not worth it. Do what you and your Dad want, your the ones doing all the caring! Do hope the sun shines for you tomorrow, give Wee Mummy a kiss for me, lotsaluv, She. XX
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Magic

    there seems to be natural break between carers and what you might call 'non-carers' [and by that I mean those who are not involved in hand-on care and also those who appear not to give a damn].

    Carers do what they are able to do/have to do for the person for whom they are caring, regardless of personal situation. Something needs to be done and they try their hardest to do it. They put the patient first.

    Non-carers, of whatever variety, have their own agenda and that is what is first priority.

    A Brucie story:

    just after I joined my last place of work, way back in 1991, I pranged the new company car they had provided. Next day I drove to the office [car was just a bit re-modelled at the front] and parked as far away from anyone's sight as possible.

    When I reported the accident at work they amazed me by saying, "as long as you're all right. The car is just a bit of tin and can be repaired/replaced".


    Same thing goes for houses. They are bricks and mortar and if a lift can be put in, then it can also be taken out again. The lift might actually increase the house value anyway. If it decreases the value, and siblings worry about that, then they are weighing the values of inheritance £££ and the well-being of a family member, and finding the family member wanting. That puts them in the non-carer category, not giving a damn. :mad:

    Fight on! :)
     
  20. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #20 Mjaqmac, Feb 3, 2005
    Last edited: Feb 3, 2005
    Braveheart I know what you're saying. And I know exactly how my siblings think, they are not bad people but they are self absorbed and materialistic.

    In my eyes the lift increases the house value for mum and dad in their own personal use estimations and that's all I care about. Who's to say what could happen to dad or I in the walking/stairs dept, the lift could benefit us all in the future. The siblings can go boil their heads. I'm not an estate agent I'm a carer.

    In saying that, it never fails to hurt when the siblings refuse to see that wee mummy is a human being with a brain disease, not a menatally retarded burden whom has no choice in having comfort in her own home, and if they spent a bit more time with her they would still see their wee mummy's usual self on a daily basis as she is well and truly still there beneath this torturous disease.

    That's my rant for the day. Thank you troops for rallying as usual. Here goes another day of ringing depts and being ignored.

    "Another day in paradise" might be my anthem for today, what do you think She?
    Name that tune!

    bj well done in making your complaint. All the best with it.
     

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