Help!!


#1

Hi I’m new to this forum and to Parkinson’s. My Dad has recently been diagnosed with Parkinson’s and has been on medication since July. We have not seen much if any improvement and he has suffers my UTI’s and ecol infection. Due to another fall he is back in hospital. He is in a terrible state extremely confused, unable to walk and is suffering from incontinence. He is on a dementia ward, and is being left. We have found him lying in his own urine in a soaked bed on numerous occasions. I have even found a tablet on the floor under his bed. Noone is helping and his confusion and inability to move is such a concern, this is no longer my Dad , I simply do not recognise him any longer. If we are not there noone will feed him and he can’t feed himself. The Parkinson’s nurse has said that he should never have been placed on the medication without first having a Dopemine test. She has said that they will take him off his meds for two days to do the test, but this hasn’t happened due to him now having pneumonia. She has since com back and said she will up his meds to see if he improves, if he doesn’t she will then take him off them for two days to test for Dopemine. Noone seems to know what they are doing and we are being given conflicting information. I feel like they are just leaving him to die. My Dad was fit and healthy until Jan this year and has deteriorated since then. We don’t know which way to turn. I have already been into Pals re his last stay in hospital before his diagnosis when they sent him home staying there was nothing medically wrong with him. We are at our wit’s end but will never give up on him. We just need some advice as to what we can do. We feel failed by the NHS. Please offer advice if you can .


#2

Hi newbie1,

Thanks for posting on the forum. I’m sure the other members will chip in with support and suggestions, but I also wanted to comment myself. I’m really sorry that you and your family have been dealing with such a difficult situation, it sounds like a very upsetting time for all of you.

Have you been in touch with our helpline about what is happening with your dad at the moment? They will be more than happy to advise you, you can call them from Monday-Friday: 9am-7pm, Saturday: 10am-2pm on 0808 800 0303.

I hope this is helpful for you, and our best wishes to you and your family.
Min
Moderation Team.


#3

Don’t stop making a noise!!!
For your dad’s sake.
Hubby


#4

My heart goes out to you…it sounds like you are having an awful time which would be bad enough with your dad being ill but then to be on the receiving end of such poor treatment makes it so much worse. Seeing someone you love so much and know so well being in such a state and being so changed is incredibly distressing and represents a huge loss in many different ways.
My husband has recently been in hospital and needed an operation following which he had post operative delirium, which at his age (in his 70s )is not uncommon… It is also worth knowing that UTIs can and often do cause confusion, as does being in unfamiliar surroundings, and as do various Parkinson.s medications. It seems to be a juggling act between mental confusion and physical mobility…in that one has to trade mental clarity for physical ability. In your shoes I would want to knowi exactly what medication your dad is on and why, whether there is an alternative with less side effects or whether the dosage needs adjusting.
Our experience of medical staff dealing with the Parkinson’s has been very poor which does not breed confidence, but they are not all like that by any means. The Parkinsons UK helpline would be my first port of call now. You are not alone .
Warm regards, Pippa


#5

Thank you for your kind words . We were hoping for his Parkinson’s meds to be increase as this was the Parkinson’s nurse did agree. However, my Dad has since been suffering from constant hiccups to which thet have now said the meds are causing this, therefore they won’t increase his dosage. He has been on the meds since May without hiccups. Words fail me they truly do. In the plus side after much arguing and complaining he has tonight been moved to an intensive physio ward. I can only hope and pray that this much need physical stimulation may help. I will intend give the Parkinson’s helpline a call for advice .

Thank you again


#6

Hello
I just wanted to say, I have been in a simillar situation as you so completely understand how you feel and how awful it is for your dad and your family.

I echo everything that Pippa has said in terms of how the strange environment/ UTI/ hospital delirium can have such an impact on someone who has Parkinsons. If you type in ‘hospital delirium’ into this forum, you will see lots of similar posts. Here is a link to something I posted myself when my mum was in hospital after a fall. My mum has been in hospital several times now as a result of a fall and each time, my mum has been in such a bad way (mentally and physically), that we were at our wits end.

I have also been concerned about getting the medication on time/ mum being fed properly etc. I just kept asking to speak to the ward manager and voiced my concerns. It was simple things like telling them because my mum had a broken arm, she needed to have a sticker above her bed to say ‘help with feeding’, otherwise- she wouldn’t be able to feed herself when the hospital food came around.

All I can say is, even though we felt things would NEVER improve for my mum, once she was out of hospital and being cared for by my dad and an additional carer that I found online to help support my dad a few hours a week, there has been a return to some sort of normality so please hang in there, keep pushing for what you feel is right with the hospital staff. Hopefully, things will improve for your Dad.