Lack of information and a rant!

[elizabeth20]

I'm exhausted. Mum deteriorated over last weekend and I thought UTI. She lives at home with care visits and my support and was able to shuffle around house to the loo and back, eat her lunch, drink a cup of tea. By Monday she couldn't do any of those things and I called the GP who referred her to hospital. After 8 hours in A&E (I'm not complaining just painting the picture) admitted to a ward and seen by ward doctor 2 hours later. Next day discharged with antibiotics discharge notice saying probable UTI. She produced a large enough sample whilst in A&E so I don't understand 'probable'.

She then became severely agitated and hallucinating, couldn't stand or hold a spoon or a cup, carers couldn't cope, I couldn't cope so eventually GP called yesterday who thought she looked poorly and re admitted her to hospital. Not so busy this time. After bloods and another chest X-ray doc said it might just b progression of Alzheimer's (so quickly and such a dramatic change after only a few days??) and back onto the ward. Lovely caring nurses and mum came out of her delirium for a while and I left her settled.

No one told me she'd been moved and when I found her she was worse than on admission. Agitated crying clinging to me, frightened, no hearing aid in. Someone (not a nurse) asked if she'd like a cup of tea while she was thrashing about and sobbing (a great comedy moment if it wasn't so tragic) not getting a response she asked if she would like coffee instead, then said 'sorry I can't understand you' 'what did you say'.......... My mother grasping into thin air pulling at her sheets, writhing about in a pile of cotton blankets, incoherent, clutching my hand and still the questions kept coming....would you like some milk? Come on why are you like this you weren't like this earlier on? I nearly suggested an Alzheimer's awareness course but just said she will have a cup of tea please. 'Do you want milk and sugar?????????' You couldn't write the script.

A young patient opposite said she and her mum had been worried about my mum earlier as she had shuffled her legs over the edge of her bed - just as I found her really.

I gave her some tea she couldn't even see the cup, cuddled her like a baby and after 30 minutes went to ask questions. No-one about, they were all really busy.

I left to visit my daughter who probably needed me more today and I wasn't there for her.

Please, all of the lovely caring brilliant nurses don't take this rant the wrong way, it's the system that's so wrong I only hope that by tomorrow the system may have time to tell me what's happening to my confused, lonely frightened mother.

 

[stanleypj]

This is truly dreadful Elizabeth. You and your mum have every right to demand better treatment than this. One of the problems is that we come to expect shocking service from our NHS but I think you must be a remarkably patient person not to complain about an 8 hour wait in these, or in any circumstances. After that, the 'treatment' your mum got was probably about par for the course.

On a positive note, there are many examples on TP of people who have suffered the same devastating deterioration as your mum and eventually recovered well. I do hope that's the case here.

You do need to complain though, if you have the energy.

 

[Suzanna1969]

Good grief yes Elizabeth you must complain. What happens to the people who don't have family I wonder? It's only by bringing these errors to the attention of the right people that you can stop it happening again.

When my poor Dad was in hospital I was worried about being too vociferous in case they took it out on him once I'd left. It's appalling that even occurred to me isn't it?

The system is badly broken and it's highlighted even more by the really GOOD NHS and care staff who struggle against the odds to provide the care their professional pride and compassion demands.

It's very sad and I don't see how it can be fixed without a really drastic campaign and that will only come about if people like us point out what is going wrong.

 

[Demonica66]

I am a nurse of 30 years. I had no theoretical training in Alzheimer's but I did not need it; I instinctively knew how to care and learned from experience and observing other nurses. I left the NHS last year to work for a community enterprise partnership, because I just could not stand back and watch it being turned into a production line, whereby the patients are seen as an inconvenience. Please write to the Chief Executive; PALS are great, but the big boss needs to tackle this. He ultimately, is responsible. Good luck. D x


Sent from my iPhone using Talking Point

 

[Stresshead]

Hi Elizabeth, I hope your mum is starting to feel better. Your post is practically the same as one I posted about a fortnight ago. My dad went downhill overnight with what they first thought was a chest infection but after a few days and getting worse was admitted to hospital with a suspected UTI. Like you we were in A&E for about 7 or 8 hours with (and I hate to say it) surly rude staff. I know the pressures they are under but like your mum, my dad was delirious and they needed a water sample. He couldn't stand to go to the toilet so they gave him a bottle, positioned it on him and then left immediately. Of course dad didn't know what the bottle was for and pulled it away. I asked for help to position him in the bottle again (as I felt uncomfortable doing this as his daughter) but nobody again. Consequently, I tried, failed and dad absolutley soaked the bed !! Not once but twice and on both occasions I had to ask for clean dry sheets and also help change him and the bed !! The tests showed no water infection and a slight chest infection but nothing drastic and all the doctors could say was that it was the progression of his Alzheimers. Like you I couldn't believe that this was the case and after a week in hospital doing lots of tests they said that the cause of his deterioration was a slight infection. I've seen him with much much worse ones that haven't affected him like this !
You should definitely speak to the PAL's service at the hospital and I wish I had but I was so mithered with everything that I didn't do it. All of the hospitals have just been through Dementia Awareness week but I think sadly there is still a lack of education about it and how it affects the sufferer and the family.
I hope your mum picks up soon. Dad is slowly coming back round to how he was but it has taken 3 weeks. Fingers crossed your mum will do the same.

Take care xx

 

[elizabeth20]

Mum was terrible at lunch time and seemed to have some kind of mini seizure. The nurses were great and were there so quickly to sort her out. The doctor was called and I was asked a few questions about how mum had been then I was asked to leave for a short while. When I spoke to doc again she said she was changing medication slightly and watching her fluid intake closely. I called in later and mum was comfortably sitting up in bed asking me where I had been and how had I got there and yes she would like a chocolate and would I like a cup of tea she hasn't spoken coherently for days! Still don't know if I'll get her home again but a dramatic change today in just a couple of hours. Fingers crossed that tomorrow will b better and thank you to the lovely doctor who spent the time to explain things to me.

What a week! Thanks for your replies and yes I think PALS may b my next step and perhaps the big boss needs to hear from me too. I'm sure he knows but it's such a controversial political hot potato the NHS that it's going to take a forceful determined forward thinking government to change it back into the flagship that it once was and I don't think this lot will have the bottle to do it. We need to look at health care around the globe and devise a better system that benefits staff and patients throughout the NHS so patients like mum particulary who don't have a voice are given time and understanding.

Thanks again for caring thank goodness for TP.