Are they actually helping him?

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My dad began suffering from paranoid delusions around 4 months ago, he had a known benign cyst between his skull and brain and they operated two months ago to remove, what turned out to be a pretty large cyst, although they believed the two problems were unrelated.  Since the surgery he has been a bit confused, muddling some words up etc.  The doctors said this would be due to the fluid and gas build up in the space where the cycst was removed.

Two weeks ago he was very muddled and confused, didn't know who my mum was and such like, the doctor had just put him on a new tablet for his delusions.  After two days of him not getting better we called the psychiatrist again and were advised to take him to A&E, he felt this was a medical issue not a psychiatric issue.

He walked into A&E confused (kept thinking he was going to work) but otherwise a healthy man, since then he has deteriorated significantly and three days ago when they needed to give him a second lumbar puncture in two weeks (they 'lost' the results to the first one) they had to sedate him as he was getting aggitated, they have sedated him every day since claiming he is being agressive but he isn't an agressive man.  We have expressed our concerns more than once about the state of deterioration and the medication he is on as this began as soon as he started this new tablet.

The psychiatric consultant told me when I expressed these concerns that he had taken him of the tablet but then I found out yesterday they have actually doubled his dose.

He is a complete zombie right now, that is the only way I can describe him.

The hospital are not listening to us nor are they telling us anything.  How long do I keep watching him deteriorate?!

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  • Posted

    I'm so sorry to hear about this. A friend of mine went through something not totally dissimilar just this last summer. Her circumstances were different from your father's but the story of over-medication was the same. She has mild vascular dementia complicated by a pre-existing psychiatric condition, which flared up in the spring. Due to a prescribing error, she was put on eight times the recommended starter dose of a powerful anti-psychotic drug, which knocked her flat to the point where she was covered in bedsores after three days. Withdrawal of the drug then produced rebound psychosis when they tailed it off a few weeks later - a known side-effect of this particular drug. As a result of the rebound psychosis, she became extremely aggressive, was kicked out of her retirement home at less than 24 hours' notice for stabbing another resident, and ended up on a God-awful geriatric ward, where she too was sedated to a zombie-like state, where she couldn't even swallow her own saliva and developed pneumonia. Ironically, the confusion brought on by this heavy-handed sedation made her even more aggressive and the nurses couldn't get near her.

    I managed to get her out of the place alive (they'd put her on the Liverpool Care Pathway) and into somewhere where she's now recovering - as far as she ever will - on minimal doses of anti-psychotic drugs. By sheer serendipity, I happen to be a former nurse, specialised in neuro too, so I knew what I was looking for and what I was talking about, but it wasn't easy. I can only guess at how hard a situation like yours must be for someone without medical knowledge.

    Do you mind if I ask a few questions? How old is your Dad - i.e. is he of an age where dementia of some kind might be playing a role? Where was the cyst? If it was in the frontal or temporal lobes (forehead or sides of head over the ears) it could very well be the cause of this change of personality. And which side of the head? (Could make a difference.) That being said, a very large growth anywhere in the brain can cause similar effects. And what kind of ward is he on? Neuro, I sincerely hope. And what's his consultant's speciality? Again, neuro, I hope. I'm finding it very hard to believe that the cyst has nothing to do with this.

    As for what you do - well, you have to stand your ground. Day after day after day. And it's exhausting. During the two months all this was going on, I lost weight, lost hair when my under-active thyroid condition worsened, and almost got ill myself. I'm 70, btw - not much younger than my poor friend. Be polite - especially to the nursing staff, as very little of this is likely to be their fault - but make it quite clear you're not going to be fobbed off with lies. And ask for a second opinion, especially if he's not on a neuro unit. His doctors can't legally refuse you that, whatever they tell you.

    On a simpler level - is he getting enough to drink? For some mysterious reason, modern-day nurses are very reluctant to offer adequate hydration to their patients. Dehydration wouldn't be responsible for all his symptoms, but could be a major contributor to his confusion.

    There should be some kind of mediation service in the hospital if you're in the UK. I'm assuming you are, as the story of the lost results has NHS written all over it. I'm not, btw, though all my nursing experience was in the NHS. I'm of British origin but live in a continental European country where medical services are better in general... albeit not on this occasion! I'm not sure of the current situation in the UK, but I know there's a medical ombudsman now, which would be a logical next step after going through the hospital's complaints procedure. I've just looked it up and found the site, but I won't post a link here as the moderator will block this post for several days. But it's easy to find via Google.

    Hang in there - hard as it will seem at times. Make them see you're someone to be reckoned with. Your Dad is lucky to have you.


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    • Posted

      Thanks for your reply. I have just left the hospital afrer visiting tonight and was able to have a proper ralk woth the nursing staff (who have been brilliant) and his psychiatric consultant.

      He is on a neuro ward in an NHS hospital and has a neuro and a psychiatric consultant working together.

      Dad is 57 years old, the cyst was in the temperal lobe just above his left eye but i was also spread down his nasal cavity, the surgeon described it as 'spectacular'.

      i feel alot better having been able to finally have a proper discussion with his doctor.

      without medical knowledge we were left very frustrated as we didnt know what was going on, tonight has alleviated some of those fears.

      Thank you for your response.

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    • Posted

      I'm glad to hear you've managed to open up a proper dialogue at least with his psychiatrist. I sounds as if he's in the right place too. Just keep up the polite pressure, to let them know you're not going to be left out of the picture.

      All the best.

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  • Posted

    I really do feel so sorry for you and the situation you are in with your dad. I went through a similar thing with my own mum. She had a fall and I took her to A&E. She'd never had any urinary problems ever, but they insisted in fitting her with a catheter. Was told as soon as she got on the ward they'd remove it. I'd given A&E her repeat prescription, she was diabetic and registered deaf and blind. When she was on the ward I asked them to remove the catheter which they said they would. I left her at 3am and said I'd be back at 9am. I was horrified to see the name above her bed was for the person before, her catheter hadn't been removed. Went and found a nurse to check she'd had her insulin only to be told they didn't know she was diabetic or what drugs she was on. They'd lost her repeat script.. She ended up with the catheter for 18 months till she died. I complained verbally and in writing, to no avail. A friend suggested I contact PALS based at the hospital. They were excellent and investigated  the care mum received and are a great way of dealing with patients, medical staff and all relatives' concerns. If you get nowhere with medical staff I would recommend contacting PALS. Never fails to amaze me the amount of 'things' hospitals manage to lose. Hope you manage to sort something out. I do sympathise as its like fighting a losing battle.
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