1. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Hi everyone, My wife Jean had her EEG on the 3rd and I was advised it would be with her GP in a week. Checked on 10th, confirmed letter received and GP would phone me late Fri, not happy so went to see her at 4pm. Recived copy of report which outlined Consultants results. It appears one area of her brain is potentially epileptogenic. Thus it's probably Epilcpsy. Suggested referral to Stroke Clinic for advice and treatment? Should have medication or treat as fits occur.

    Had to wait until Monday to make appointment, and what a day it turned out to be:
    Up as normal at 05.00, breakfast, got Jean up, washed and fed and laid down for nap.
    06.50 Went for morn run. 08.00 prepared veg for lunch.
    08.30 Phoned the number GP gave to arrange appointment. I was asked all details about my wife then:
    "Does your wife know you are arranging this?"
    "I don't think so!" and went on to explain her condition."
    "Which hospital would you like her to attend?"
    "The local one, Hereford"
    "Sorry I can't arrange that, Hereford is not on our system yet." I was given the Booking Center number of the hospital, which I phoned but got no answer.
    08.50 I make my way to the chemist to pick up the prescription for Diazepam Rectube to be used when fit occurs. A walk of a mile there and back, medication not available has to be ordered, try to-morrow.
    On my return I phone to make an appointment, answered by some faceless person: "No staff available to take your call, but you will be answered etc, you are 9th on the list".
    This went on up to 11.15 when I called it a day and decided to feed Jean her lunch, having taken mine between time trying to get through to Booking Center.
    By now I'd had enough and stopped short of throwing the phone at the wall.
    Dressing Jean in her outdoor cloths, lifting her into the car I arrived at the hospital
    fuming.
    At the fromt desk oprerator: "Where's the booking center?" she pointed to it.
    "You can't go in there". "Try stopping me, I need to give that faceless person a piece of my mind".
    "Please, I'll phone the boss and ask her to see you" I agreed. Surprise she could not get through she was put on hold with other callers. This maybe helped her to get the point. Keeping my temper under control I explained my day to-date, and now I wanted some action. Jean just sat looking into the faces of the two girls present. The receptionists entered the booking center to explain my problem.
    On her return she handed me her phone saying the boss wished to speak to me;
    "I'm very sorry etc, I can arrange an appointment for your wife in Feb"
    "Not good enough, I'm not prepared to wait that long"
    "It normaly takes 11 weeks for an appointment, but I'll see what I can do"
    I accepted 12.00 noon 30th Jan. This morn 08.30 a letter confirming app arrived!
    Visited the chemist this morning, medication still not in, I failed to hide my frustration so was offered it to be delivered this after noon, and has arrived at I type this.
    Sorry to have rambled on but I needed to share my fighting day with you.
    May the road raise with you and the wind be always at your back. Padraig.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    Dear Padraig, I really don`t know what to say to you but your post filled me with despair. It`s so awful that you have to fight for everything. I would like to challenge all the people who keep letting you down by asking them how they`d feel if they were in the same position.
    I hope by now you`ve at least received the medication.
    Take care. Love Sylvia x
     
  3. suzi

    suzi Registered User

    Jan 15, 2007
    12
    Hampshire
    Support

    Dear Padraig.

    I only joined the site yesterday, but I do remember the fustrations of the system and social workers when being pressured to place my Mother in and EMI nursung home. Sp much so that it ended up with my having a meeting with Social Services on Christmas Eve and placing Mum in a home three days after Xmas. They kept her there for just three days before putting her back in hospital as they could not cope with her aggression.

    We are here to support and listen and I truly hope you get the support you need.

    I think unless you have had to fight the system no one knows the frustrations and the pressure put on us the carers.

    Be strong, Jo x
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    May I be cheeky (bold??) enough to say, on behalf of your wife (whom I feel WOULD say this if she was able), Thank Heaven for you Padraig! You are such a fighter! I don't know how I would cope with some of your frustrations, but cope you do!! Congratulations, and thanks for the inspiration. Nell
     
  5. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Thank you very much for your support Grannie G, Suzie and Nell.
    It was more than five years ago that I discovered the real pressure starting for me. When Jean had a fall, broke her arm and walked into hospital, but came out four weeks later in a w/chair! was then moved between home, hospitals, NHs and a respite centre six moves in six weeks. The final one to a NH which turned out to be a nightmare for both of us.
    The words I used to our daughter as I removed her from the 'home' are emblazened in my mind; "There is nobody or anything out there so I'll just get on with it" and got on with it I have, and in that way I can't blame anyone else if things don't work out. By accepting these facts I have been stress free.
    It is only when I need to touch base with the 'Professionals' do I become stressed. I forgot to mention in my anger I told those people at the hospital, I was aware they thought there was little point in bothering with people with AD, but that carers like me were saving the NHS money.
    When I'm below par I take it a day at a time. Once again thanks for your support.
    Padraig
     
  6. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Padraig, as Nell said you are an inspiration. I some times think that the 'systems' are designed to make life as difficult as possible for service users and their carers (as though we haven't enough to cope with..:( ) Hope you've rediscovered your equinimity after such a terrible day.
    God bless you with enough energy to keep fighting your 'corner'.
    Take care
     
  7. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Thanks May, I'm feeling better, but I need to see our GP later this evening, having pains around ribs which will not go away. Felt better yesterday after sit-up, push-ups and weights work out. Jean is asleep just now and I'll have to get her up and dress her, to take with me to the appointment. I use a hoist around the house so I'll walk her to the surgery, I have to lift her into the car when I take her shopping, like this morning.
    I knew what I was letting myself in for almost four years ago when I took her home from the HN. There's no way I'd want any of our family to help me, I have to accept they have their own lives to get on with, and I wouldn't want them to take on caring for me should I ever be unfortunate to end up like Jean.
    The best we look forward to at the moment, is a twice a week visit from our daughter. I'll miss that for the next two weeks as she is off to the villa in Spain.
    I wouldn' know what to do with myself if I had a day off it's over five years since I experienced one. The plain fact is I can't be parted from the purpose for my living. Everyone is different in circumstances and relationships, in ours she embodies the love of parents I never knew and so much more. Taking one day at a time. God bless Padraig.
     
  8. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Padraig
    I so admire your strength and determination in caring for Jean.
    She is such a lucky lady to have such love and care given to her.......
    Take care
    love Wendy xx
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    Take care of yourself, Padraig. Your light shines from the screen. Love Sylvia x
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Dear Padraig .... whatever our reasons or motivations for caring, I guess we all want everyone else involved in that care to demand the same high standards of themselves as you do for yourself and it's so frustrating at times .......

    That others don't share your passion, blatant common-sense, diplomacy (including self-restraint!) and sheer determination in caring is their problem, not yours ..... know it's not easy when you're battling against ignorance to secure what Jean and you need in practical terms ... but walk tall, soldier!!!! The cavalry is right behind you!

    Much love, (and God bless you for your inspiration!), Karen, x
     
  11. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Well it appears I may have gall stones, with any luck they'll go on their own. Had a call on Friday with an offer of a visit from a OT (an American girl) wants to see how I treat Jean's stiffness and maybe share ideas on methods.
    My big concern is if Jean has an other fit before the 30th (her appointment at the Stroke Clinic.) My problem is administering the Diazepam as her face will have to be away from me. It makes me laugh and I hope your not offended when I tell you what enters my mind:
    There was this farmer's wife kept nagging him to see the Doctor about his tummy pains. When he did see the Doctor it started;
    "What can I do for you my good man"
    "Well doctor I got these 'ere pains in my tummy"
    "When have you last been to sit on the toilet?"
    "Er about three days ago"
    "Here are a weeks supply of capsules, place one in your rear passage each evening after meals. Come back in a week and we'll see how you are"
    His wife asks how he got on at the doctors.
    "He gave me these 'er capsues, and I gota put one in the backage each evening"
    "We don't 'ave a back passage, do ye think it'll be OK to place them in a row on the mantle piece" "Suppose so" A week later: at the Doctors:
    "And how are we to-day my good man"
    "Well Doc for all the good those capsules did, I may as well stuck them up me A****"
    No offence meant. To laugh is best medicine. Padraig
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    Well done Padraig, you got me laughing out loud. That you can give others cheer when you`ve so much to cope with is a measure of your character.
    So sorry about the gallstones. Maybe you could get some `capsules` for them.
    Love Sylvia x
     

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