Sorry I have crashed again

Discussion in 'ARCHIVE FORUM: Support discussions' started by sammyb, Oct 4, 2007.

  1. sammyb

    sammyb Registered User

    Sep 19, 2007
    126
    Nottingham
    I dropped into the hospital at lunchtime just to take my husband's lunch and was told that, after I'd gone last evening, he played up, dropped to the floor and refused to eat his tea. The nurse herself told me that she had threatened him with going to the main hospital to have a drip put in and a nasal gastric tube if he didn't eat. I am horrified as he had already had 1200 calories yesterday and with another fortisips that would have made 1500. He's not even moving about much so he isn't using up a lot of energy. My husband apparently said that he would never have a gastric tube because he wanted to die. The nurse said that wouldn't happen whilst he was on their ward. I know nurses get frustrated and tired but I find such a threat dreadful particularly as it was totally unnecessary. Tonight I was questioned about his original assessment - I wasn't there so I don't know but I think staff are beginning to realise that my husband's problems are linked more to the Alzheimer's than the depression and that perhaps he shouldn't be on a ward for people with depression and anxiety. My husband's consultant is now on three months sick leave and we await the arrival of a locum. So there is no-one for me to talk to at the moment except the ward manager - except he is there very rarely. If only the consultant had read my letter of concerns before placing him on this ward! Fortunately my husband heard nothing of this conversation because he was in a different room but when I went to see him he was in a dreadful mental state. He was holding his head and I thought he had a massive headache but he said not. He was in absolute mental turmoil and wanted me to go. I went but just sat outside crying my eyes out again. Sorry people - I have tried to be so strong but I am just crying as I write this. On top of that on Sunday my husband's daughter and her husband are coming to see him. 14 weeks ago she had a half hour, lucid, normal conversation with him at home. Now I doubt they'll be able to have even a few words together because of his rapid decline. I have tried to prepare her and she is in her mid-thirties and she says she doesn't need to be protected but I will just crumble and not be able to support her because I can't even control my own tears. And hers will flow uncontrollably too .............if she did but know it.

    Love from Sammyb
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I am so very sad to read your post. Cannot make useful comments except to sympathise so very very much.

    I am glad your daughter is visiting. I agree with her 'she does not need protecting' - at least no more than you do. You are both going to share massive tears together and whilst that is awful it may be good for both of you.

    I am glad you can pour all this out here on TP - keep doing so - it may help a little.

    Take care Jan
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Dear Sammy.

    I`m so sorry there is no one to support you, no consultant and a nurse who resorts to threats.

    I don`t know how to help you out of this but all I can suggest is you phone the

    AS Helpline tomorrow, on 0845 300 0336 8.30 a.m. -6.30 p.m. Mon-Fri
    or contact
    Admiral Nursing Direct 0845 257 9406
    Tuesday 10-4 6-9
    Thursday 6-9
    Email fordementia.org.uk

    Someone else may have better suggestions, I do hope so, as you are suffering so much.

    Love xx
     
  4. sammyb

    sammyb Registered User

    Sep 19, 2007
    126
    Nottingham
    It does Jan thank you. At work I have a very supportive team who are doing everything rather than see me go off on long-term sick. Not would I want to because the routine and life of work is keeping things as normal as they can be. But TP is my absolute lifeline and I really don't know what I'd do without everyone here. I can't begin to imagine what some people are going through who have no access to this level of support.

    Love from Sammyb
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Sammy, I'm not surprised you've crashed. I would be thinking in terms of a formal complaint, the nurse had no right to threaten your husband with a tube just because he refused one meal.

    It's also very poor that you've no-one to talk to about his treatment. It certainly sounds as if he shouldn't be on that ward at all.

    Why not ask about PALS? I'm sure they would be able to advise you on who to contact.

    In the meantime, crash all you like. It's a horrendous experience to watch such a rapid decline in someone you love.

    Don't try to protect your daughter -- after all, she's going to see the state of things for herself. Tell her how upset you are, possibly she'll be able to suggest other possibilities. If not, at least you have someone to share the problems with.

    And post here whenever you like, we're all thinking of you.

    Love,
     
  6. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #6 CraigC, Oct 4, 2007
    Last edited: Oct 4, 2007
    Hi Sammy,

    firsly, don't worry about crashing, that is one of the things that this forum is all about, helping crash victims! Some things just happen and we can't control them or do anything about them and this is a fantastic place to talk about it!!!

    Do phone the helpine for practical advice, and keep firing away if you have specific questions. There are a lot of people here who can help (but I think you know that). Just keep asking and talking, we are all ears.

    Don't ever feel gulity, you are in the company of a lot of people who don't know how to deal with this, but company is good!

    Kindest regards
    Craig
     
  7. sammyb

    sammyb Registered User

    Sep 19, 2007
    126
    Nottingham
    Do you know, I don't think I've ever used a support website, network or helpline in my life before. This one is fantastic for me and I am feeling a bit better already because of your responses. I just hope for every other disorder and disease, there are such support people as there are here.

    Bless you

    from Sammyb who is now going to take her little dog out for a walk in the dark!
     
  8. Westie

    Westie Registered User

    Dear Sammy,

    You are so right. I too am having a hard time at the moment and the support I have received from everyone here on TP is nothing short of miraculous. It REALLY does help to know that someone out there is thinking of you.

    I am thinking of you now and hope you find strength from the support you receive.

    Hoping that tomorrow is a better day,

    Love Mary-Ann

    P.S. I have a little dog as well, Jessie my Westie. Aren't they a comfort? She knows when I need her.
     
  9. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Sammy

    As if you didn’t have enough to cope with, now threats, for goodness sake this is totally out of order.

    First things first, there just has to be another doctor, if not a Consultant available somewhere within the hospital, a Registrar probably. Someone has to be in charge of the team. Maybe a phone call to the hospital General Manager will help with that. It seems that your husband needs a reassessment, and quickly, I am sure the hospital does not come to a grinding halt until a locum is found.

    Whilst I have every sympathy for our nursing profession, yes they can be over worked etc., etc., but sadly it is a fact of life, you get good and bad in every profession, even nursing. To ‘threaten’ a patient is totally out of order, its abusive, and to insert an NG tube without consent is assault, they would have to have your hubby sectioned first, and nobody is going to go along with that on the basis of one refused meal. I would most certainly, when you feel up to it, write a formal complaint.

    I am so sorry that your husbands daughter is going to see her dad has declined since her last visit, but you at least will be able to support each other.

    Thinking of you.

    Love
    Cate
     
  10. Bristolbelle

    Bristolbelle Registered User

    Aug 18, 2006
    1,847
    Bristol
    Sammy

    Persnally I think you have to report the nurse. You don't even have to do this yourself, just print the message you sent to TP and add I small covering letter with your name, the nurses name etc, tell them your at the end of your tether, and do not wish to discuss this with anyone t present. they should be able to tell which nurse it was form his notes etc. Have you had a carer's asessment yet? It might be good to try and access a social workeer for yourself too - I certainly intend to do this when we come back form our holiday. In themselves I find them pretty useless but if you add a coment about a social worker to a letter or conversation it seems to hold a lot of sway (never understood why the ones I've dealt with have all been really poor).
    Other than this all I can do is send bug hugs, and tell you to keep loving that little dog of yours. My dogs are my sanity I have a German sheperd cross chocolate labrador who is big, soft and totally adorable, a hyperactive border collie who is obsessed with collecting stones and odd socks, and my Mum's jack russel cross who has so much character and a such a smily face even when he's really naughty he get's let off!
    I'm off for two weeks tomorrow, and I;m going to miss TP! which is amazing because I've only really been posting here for just over a week, and I'm going to miss it because of people like you! I read you stories and I know for me the worst is still to come, but you help me see that now, and to prepare for it as best one can. In your desperation you are still being both a support and inspiration - keep strong .....lots of hugs

    Firebelle
     
  11. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Sammy,
    Sorry things are not going so well for you. I can't understand the nursing staff these days, not all of cause some are very caring, but, it seems a heck of a lot these days are so uncaring. My dad has just gone yet again back into the hospital and I was just saying to my hubby last night that it seems the compassion and empathy from health professionals is severely lacking. Hopefully your hubby will have some better days and you all can have a lovely visit. Take Care Taffy.
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #12 Margarita, Oct 5, 2007
    Last edited: Oct 5, 2007
    Do feel for you as it was only last mouth that they told you your husband has cerebral atrophy ,
    and who can blame you if you can't control those tears , you need support also , so much information to take in , so much change in your life !
    lucky for your daughter she got her husband and in a way if you both cry on each other shoulder your supporting each other , sure your love for each other would pick you up , when you crumble and cry with her or with out her


    I use to worry so much in wanting to protect my children I had no husband to lean on when it was all happing with mum dad had just pass away also , my life felt like it was all ways crashing around me .

    Then found TP released it happen to other people so when those moments hit , I new it was normal . That once I let all those tears flow took few deep breath it help me to carry on , just making me stronger as time went on . Reminding myself that tears can't kill you , so what don't kill you just make you stronger , am always telling myself that .

    Its early day for you now . I am just sharing how I cope

    My son was great in lending me his shoulder to cry on , not at the beginning because I was always pretending I could cope.

    Must add that if they told my mother , what they told your husband about gastric tube, she be telling them to stick it where the sun don't shine , who can blame her . some nurses just don't have good bed side manner .

    But you can stand up for your husband and tell nurse

     
  13. sammyb

    sammyb Registered User

    Sep 19, 2007
    126
    Nottingham
    Thanks so much for all your replies. I sobbed my way through them but have come out the other side. You were all so brilliant. So, I rang the AD Society as you mentioned and the person there suggested that I get the name of the locum doctor and write immediately and expect him/her to say exactly what stage my husband is at in his AD and what medication is going to be prescribed to try and stabilise things. Then I moved on to my letter of complaint. I wrote it to the ward manager and handed it into the ward at lunchtime. I put matters as nicely as I could without naming and shaming and when I visited tonight one of the nurses spoke to me about it, so clearly it had gone the rounds. Such patronising words as 'that shouldn't have been said to an intelligent man' had me replying in perhaps not the nicest of ways! It shouldn't have been said to anyone!!!!!!!!!!!!!! But I do feel a bit better tonight thank you everyone. My little dog is a straight Jack Russell (unimaginatively called 'Jack') and he is everything that Jack Russell's are noted for. He's a little .......!! He hates to see me cry and hides under the bed. Its always been a rule that he doesn't go on beds which he has always abided by. He just sneaks into them from the bottom and under the duvet. He's a wonderful hot water bottle in the morning!

    Love from sammyb and with grateful thanks to everyone and my how I sing your praises everyday at work.
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Sammy,

    Well done! It sounds as if you've got your message across, and hopefully you'll see some action with a new assessment for your husband.

    Your little dog sounds adorable. They're such good company, aren't they? I don't know what I'd have done without my little Skye these last few weeks. They've suggested I take her into the NH to visit, but she'd just go mad!

    Let us know how you get on,

    Love,
     
  15. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Sammybe.crash all you like.i have done it on tea room tonight.For all you do and all you feel,life wil make you feel inadequate in some way.The lesson is to "take it","don't let it take you over"and "spout off as much as you can".Tp offers much relief on many postings.take care el;ainex
     
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Y'know, this is so sad, my mum had absolutely fantastic treatment in her unit, I wish everyone could have the same.

    I can't say much except stick out for the best you can. My heart goes out to you. But I think you will win in the end. Don't give up.

    Margaret
     

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