worried

[twinies]

hi everyone. my dad has been in hospital the last month with infections. He's in the advanced stages of psp. Two days ago we could still walk him to the bathroom in hospital with his arms around our necks. He could also point at things and attempt writing things.Two days on he's bed bound can't do anything can barely stay awake and is going to the toilet in the pads, there's no way we could attempt to move him. My question is this sudden deterioration psp or are the hospital sedating him and not telling us?? Twindles x

[carehope]

Hi T. ! Sorry to hear of your Dad's condition worsening. It often seems that when people who have PSP contract infections, their overall PSP condition worsens. This effect is also evident in the case of many other chronic illnesses. The cause is probably multifold, including the additional stress placed on one's immune system ,other health conditions the person may have, their age, etc... . It would be unlikely that any responsible and competent doctor would be ordering sedatives for patients without a clear necessity. In order to find out what is going on treatment wise and to let the hospital staff know your concerns about changes going on with your Dad, it's necessary to discuss these topics with the appropriate people- drs, nurses, whoever. The best outcomes happen with the involvement of the pt's family or advocates . There is no reason to be ' in the dark ' about this. You want and need to know things, so go find them out. Unfortunately most medical personnel are so busy and spread so thinly that communication with pts and their families is neglected. You however have responsibilities also, right ? Don't feel intimidated . Usually hospital staff step up to the plate when people speak up. After all, you presumably know your father much better than they do !

Good luck and hope that your Dad bounces back from this latest setback.Take care, Elise

[twinies in reply to carehope]

thanks for the advice, much appreciated x

[Heady]

I don't know where you are, but in the UK, doctors can't give anything with out permission, unless the patient is unconscious or have lost capacity. Even then they should consult the family. Well that's my understanding. I suspect, it's PSP progressing. Even though this is an extremely slow disease, things always seem to happen fast. Talk to the doctors or the nurses on duty.

Sending big hug and lots of love

Heady

[twinies in reply to Heady]

I'm in Dublin. I will have a meeting with the doctors. Thanks for the advice x

[abirke]

I agree with Carehope and Heady that Dr's cannot and will not give meds that have not been agreed upon by patient and or those with the medical power of attorney....No dr. wants to lose his licence by giving indiscriminate drugs in non emergency situations....

When we (healthy people)get sick we sleep for a couple of days...It takes a couple more days to bounce back....when those with a progressive disease get sick ....they have so little to fight with that bouncing back is hardly an option....

I remember earlier this summer I was SICK!!! I had very little to take care of my husband with. Strangely enough, I noticed how far he had gone down...I recuperated and he has yet to bounce back....and that was because I was so ill...

At any rate I hope your dad gets well soon and does indeed, bounce back.

AVB

[twinies in reply to abirke]

thank you much appreciated x

[Duffers]

Hi twinges. It probably is the progression of this hellish disease. Just ask to speak to the doctor, voice your concerns and ask if they gave him sedatives. You need to know. But on the other hand being In bed for any of us is weakening, but we can get up to start the body moving again where they can't so that adds on as well. Everything seems to be against our loved ones. We are all definitely squeezed between the rock and the hard place. Damned if we do something for them and Damned if we don't. No winners in this game. Stand your ground and get answers that you're "happy" with 👍

[twinies in reply to Duffers]

thanks so much x

[am2015]

Our Consultant said that if there are any incidents of UTIs or pneumonia etc. then whatever state my mum was in would dramatically fall. They may fix the illness but her general state of health would deteriorate significantly. We try and take all possible precautions but it's not fail safe. My mum had a UTI (not a severe one) and it changed her completely, speech and mobility were badly affected. Hang in there. Xx

[twinies]

thanks, well dad can't talk the last year must now his mouth is just hanging down. I think you're right though i think it's the medicine helping the infection but increasing his condition. x

[Amilazy]

Hi agree with everyone but I would ask the Dr to check the meds with the neurologist and specialist pharmacist to see if any drugs especially hyoscine and drugs used to try and dry saliva and some sedatives and anaesthetics which have side effects by crossing the blood brain barrier which is something that really knocks PSP patients.

Also I have noticed that PSP tends to step deteriorate after a plateau of stability and the step can be huge and one way and often as a consequence of a small change.

Best wishes and hope he recovers some facilities. Tim

[GonnaMissDaddy]

What you described is the MAIN (or even sometimes, only,) symptom my dad gets now that he has PSP, for ANY ailment, even just a few days or longer of constipation and he gets SO weak, and has even hallucinated all because of ANY added ailment. And yes he gets better (not as tired, much more cognitive,) after the added ailment is better.