1. Chocolateear

    Chocolateear Registered User

    Aug 7, 2014
    My husband has quite a few medical problems mostly stemming from his Type 1 diabetes which he has had for over 50 years.
    Six years ago he was diagnosed with Normal Pressure Hydrocephalus. Eighteen months later he had a shunt fitted and initially he was fine. Then the symptoms started to reappear and for the next two years we were backwards and forwards having it adjusted.
    Eventually, they basically washed their hands of him and he was referred to a 'Neurologist' I put it like that because the guy we saw was once upon a time a GP in a practice I'd left because of his attitude, especially towards my elderly parents. Apparently, he did these consultations in the Neurology Department on a part time basis, but I digress.
    After a cursory examination he dismissed my hubby with the throw away remark of, 'Oh your brain will go on thinning. No need for a follow up appointment unless there's a significant change.'
    No chance to ask questions just booted out so we dipped into our savings and saw a Consultant Neurologist who diagnosed Autonomic Neuropathy, which in conjunction with the NPH is progressive and were advised to enjoy as much of life as we could while we could.
    Hubby started to deteriorate quite rapidly last year and after speaking to the Clinical assistant in Neuro Surgery the decision was made to put the shunt onto the widest setting to relieve the pressure in hubby's head even though there was a greater risk of a brain haemmorhage, collections of fluid or a stroke. Thankfully, a recent CT scan showed none of these, but my hubby is still deteriorating.
    We went to see our GP to try and get a referral to the Neurologist. According to our GP it's all par for the course and no point getting a referral. We know that the Autonomic Neuropathy affects every function in his body, but my hubby after being in denial for years actually wants to know what to expect so we can prepare but we are met with a wall.
    He says I'm not eligible for any assistance in looking after my hubby so I give up on the medical profession. They don't listen, don't care and aren't interested. I've managed to keep hubby going this far even after my own mini stroke, so I'll just keep going.
    Sorry to rant.
  2. marionq

    marionq Registered User

    Apr 24, 2013
    Have you had any assessment from the social services to see how they can help or advise you both? Surely the GP referred you to some agency rather than leave you all on your own? If not then get on to SS yourself and ask to arrange someone to come out and talk with you.
  3. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    I absolutely agree. The Social Services have a Duty of Care towards both your husband, and you. Alas, my own experience has been it's no good stoically trying to carry on. You must phone them up, and give an Oscar winning performance, of how desperate you are.

    I found that as soon as I started to speak, I cried anyway, but just go for it, and let them know how desperate you are. Plead, cry, sob, but insist on some help, to which you are entitled.

    You're never alone here on TP. :)
  4. Chocolateear

    Chocolateear Registered User

    Aug 7, 2014
    According to our GP we are a long way from needing anything like that. He says that when he feels it's necessary he will refer my hubby.
  5. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    I don't think that's good enough and would seek a second opinion, chocolateear. You are obviously at the end of your tether and if something isn't done you will be ill yourself, which will help nobody.

    Sending you a hug, and wish it could be a real one xx
  6. Chocolateear

    Chocolateear Registered User

    Aug 7, 2014
    Thank you. I have befriended the Consultant Neurologists secretary and she said much the same. I've got to change my ways I think. I've never been one for making a fuss. I looked after my Mum and Dad until they died and it made me quite tough. I have dealt with his hypos at night for the past 18 years and only call an ambulance if he has a fit or I can't rouse him after giving a Glucogen injection. I've learned to deal with his mood swings, distract him when his obsessions get too much and put strategies in to keep him fully and gainfully occupied. His mobility is getting worse and I asked my GP about an assessment especially for a stair lift/ stair gate and he was so patronising I felt like punching him. Ive got Adult Social Care's telephone number now so I'm going to sound them out.
  7. Chocolateear

    Chocolateear Registered User

    Aug 7, 2014
    Thank you my lovely. I'm made of stern stuff. It's days like today when a 20 minute journey takes all morning because he has to keep stopping, then sleeps all afternoon because he's so tired.
    It's not being able to unpick which bits are Autonomic Neuropathy, which bits are NPH or something else. When ever he has a bad episode we have a routine of checking blood sugars, blood pressure then it can only be the Neuropathy or the NPH.
    When he rests I do things I like doing, so I get a break.
  8. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Oh, Chocolateear I am so sorry you are having such a hard time and having to battle with unsympathetic doctors as well I'm afraid I have had very similar experiences with GP and Consultants and it does make me mad:mad::mad:
    In my experience OT's have been much more helpful, and knowledgeable about assistance needed. Absolutely agree with others that you should have a Social Services assessment. As I understand it GP's aren't there to arrange social care and yours seems to be very high handed in making the decision that you don't need or qualify for assistance. If people aren't in the same situation as you then often they don't understand what the difficulties are. Do you have Admiral Nurses, Dementia Support workers or a carer's organisation locally? I understand that if there are no Admiral Nurses in your area then you can email them for advice. Starting a bit of a rant myself now. Hope you can get some help/advice very soon.
  9. garnuft

    garnuft Registered User

    Sep 7, 2012
    Phone the Adult Social Care Dept. in your area.
    Explain all of this to them, ask for an assessment, stress that you are feeling stressed.
    Tell them you need some input from an OT but mostly you want a full assessment of your husband and yourself.

    Adaptions to your house can be made but be aware that there will be a financial assessment if you require/expect any financial assistance from your Local Authority or Social Services Dept.

    Social Services are accessible without needing to refer to any doctor, you ring them up and there they are.

    A miracle really, that is too often taken for granted.
  10. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    I gave up a long, long time ago. It's tough work, being abandoned to care for someone alone who is so drastically ill, but I now have nobody I can turn to. I'm desperately sorry you're facing the same wall I did over the years.

    When you only ever get a phone call from the surgery asking if you smoke, so they can "update their records", (one of these calls came a week after my husband returned from hospital after a stroke!) you just know there's no more hope. It's a good thing I learned how to care for most things myself, as I have no family or friends, either.

    It is a rough road, chocolateear, but you will get through it, because like me, you'll be forced to be strong. I wish I could offer better advice.

    Talk about life taking a bite out of us.
  11. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    And that's where the problem lies. Most of us on here are of a similar age, and persuasion, and don't like making a fuss, preferring to battle on. Alas, that is not good for your health or that of your loved one.

    Your GP sounds like (excuse my French) a right *&^*!!!!! How would he feel if his mother/sister/wife was having to cope with what you are! :mad: No, you've got to go straight to the top, and get that assessment done and fast.

    I found that phrases like "Duty of Care" and "I'm not just at the end of my tether, there's no tether left", and "I can't carry on" work well. HTH.
  12. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    Scarlett always gives it as it is and says what needs to be said and done. We are so fortunate that she is available to support us all: not based on reading a book but from years of experience.

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