Hi all. My dad has PSP and has been diagnosed earlier this year, in March. He was misdiagnosed with Parkinson’s for about 5 years prior to March.
He’s in a nursing home, and has only recently been given morphine for the pain. We’ve noticed he’s unresponsive now, and he never was before. We aren’t sure if that’s due to the morphine or progression of PSP. Very sad, as he used to be alert and chatty when he was in the mood. And now he has pain relief, but he’s not chatty anymore or alert so much has anyone else experienced this?
Thanks
Emily
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Emilysmarties34
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Unless his pain is very bad this seems like over kill. I have just started to give Larry two 500mg Acetaminophen(US) Paracetamol(UK) twice a day for his pain. So far that seems to be working for him.
My husband has been on morphine for a while, he can sometimes be chatty and sometimes very quiet, I think his is progression rather than side affects, if I give him extra morphine then usually does not make much difference xx
Welcome to the site. Everyone will be different, there is no black and white guide on what symptoms will manifest or when they will appear. Dad was on some type of mild pain med for a couple years, mainly for muscle pain due to stiffness. He only started taking morphine the last few days he was alive, then he could have as much as he wanted.
I am so sorry for your father and for you. Five years in, it's quite a long time for the PSP symptoms to develop. At this stage, my mum was finding speech much more difficult and didn't really initiate conversation any more, although she could answer questions. But there isn't a single PSP progression "blueprint" that you can compare your dad to and his PSP journey will be uniquely his own.
I know you miss chatting to your dad and feel for you. It's a terribly painful thing to witness your dad losing his ability to speak. But you have made sure he is not in pain.
My mum also had a Parkinson's diagnosis for several years, before PSP. I don't think of it as a "mis-diagnosis", it's just that the early symptoms of PSP and Parkinson's are the same. It's only as the disease progresses and the differentiating symptoms, like problems with vertical eye movement, are apparent that a neurologist would ask for another scan and see how the PSP has impacted the brain. So don't feel bad about that, because I think many PSP suffers are assumed to have Parkinson's initially. Maybe one day there will be a test that can diagnose PSP earlier.
Anyway, I am so sorry to hear about your dad. Take courage, keep talking on this site. Painful days ahead but perhaps it will help to talk to people who understand what you're going through. Sending you solidarity and strength, Amanda.
Dad gets a very small dose of morphine as needed. As needed is hard to tell as he unable to speak and tell anyone he is in pain, have to read his facial expressions and body language to tell if he needs anything. Dad hasn't been able to communicate for at least a year, however he can hear so we talk to him about everything.
It is difficult to determine what is the right thing to do.
So wonderful that you are including your dad in the conversation. And that you are learning to read his body language, which is so important! Having worked as a hospice nurse I understand your concern that too much morphine will affect his level of consciousness. Finding just the right balance between pain control and giving too much can be a fine line and difficult to determine. I pray the staff will be sensitive to all of this and work with you to find that balance.
John too was on morphine and paracetamol as required, he was never very responsive when taking it, one time he had to go in hospital for a bowel scan, we were there for a whole evening and night, and the nurses were giving him heavier amounts and more regular, he was totally incoherent , took three weeks to get him back, I discussed this with the hospice and they gave me 2ml dosage of Oxy instead, he is better on this but again if a bad day and more oxy you can tell the difference of coherence and hallucinations.
Hope this helps, perhaps you can discuss with your doctor the fact your not happy with your dad's situation of medication. Sounds a bit to me the home care is happier to keep him on pain killers than conversing, helps their time. Not PSP progression.
Good luck with finding a comfortable status with your dad, he deserves it.
My dad did not receive morphine until final stage when he was already mostly unresponsive. At that point it was more for the agitation I think. He had been unable to speak for a few months at that point so not sure if he was really in pain. Up until then, acetaminophen helped for pain relief from stiffness. Cherish every split second of responsiveness you have❤️
Hi, interested to hear of an update. My mil has been on morphine for a 2 years now and she's never been the same. Her dose was increased a few months ago and she hallucinating and showing signs of Dilirium. She was managing well on Tremadol, but doctors decided to change to Morphine and now she's showing signs of addiction. Drs are so slow in coming up with a reduction plan. I think morphine has greatly taken my mil away form us, she's a different person....
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