If anyone is able to answer this I'd be grateful - my sister has just called me from where dad is in respite. She's just arrived and found him with the nurses, he's on the toilet with the nebuliser on, and they think he's having a panic attack. His breathing has been awful for the last week, he had an infection (UIT) that wasn't picked up (despite me pestering them to check) until two days ago and is now on antibiotics. He chokes when he eats (a new thing since his breathing worsened) and his pulse and breathing are constantly very fast. Surely, he needs to go to hospital for assessment? I feel the nurses are a bit too laid back and not familiar enough with PSP (the neuro nurse has had to call them to remind them how to check for infection). Am I over reacting? Feeling panicky, I'm not there, just getting my sister's messages. Is there anything that could be done in hospital that can't be done by nurses?
Breathing problems: If anyone is able to... - PSP Association
Breathing problems
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Not that I am panicking but it all sounds like when I had Pneumonia I had the breathing problems granted I had asthma but I had gone to the doctors office 5days earlier and I asked him if it sounded like any thing was in my lungs he said no well 5 days later the school nurse was calling 911and I was rushed to the ER they took an X-ray an guess what I had pneumonia I was in the hospital for eight days I Was homefor seven weeks. And I was also aspirating I think that's what you call it when you gag when you eat. They even took X-rays for that when you eat.
Let me tell you I say about 6 months later I was sick again I went back to my doctor and I demanded that something be done I was put on steroid pills for 10 days and the doctor wanted to see me in 10 days this time I caught i and had the room doctor and she said if you see a doctor that isn't listening to you ask for someone else. They say when you've and ammonia once your susceptible to get it again.
Be the voice for your dad get an chest X-ray
Good luck
Thank you. My sister has said they're waiting for a doctor, who could take up to four hours to arrive, so she's calling an ambulance herself now. My dad says he's in pain and he NEVER complains, and his stomach is distended as well. Thanks for giving me the confidence to insist on action - better safe than sorry!
My Barry was in nursing home for 5 days to no avail ... they don't know enough about PSP. He improved after a week at home 💛
A good job we called an ambulance!! Dad was going in to kidney failure, had an infection and was absolutely chock full of poo. He was in agony. They catheterised him and filled three bags pretty much straight away. Nurses were horrified. I'm now gathering all the evidence to confront the care home, who were under specific instructions from his GP to closely monitor fluids in/out and watch his kidneys. I'm gutted. We put him in there trusting that they'd look after him. £2000 for two weeks of total stress and torment. Who called it respite?!!!
Keep an eye no keep two eyes on him and go to see him when they say visiting hours are closed he's your Dad you can see him any time. Check out other places.
Good luck also take care of your self.
My husband has been like this for over a week now and the doctor has just put him on antibiotics. Hopefully he will improve but he is constantly coughing and has shortness of breath and breathing really heavily. If he doesn't improve I will take him back to check to see if he has an infection. Keep pestering to get answers
After the experience we've just had, I'd say make loud noises if you're in any doubt whatsoever. I was hesitant about calling ambulance as I thought the nurses in the home should know best, but I'm so glad we did. My dad's pulse and rapid breathing were the only visible signs of this awful infection and the sheer amount of pain he was in, he had no other way to express it, it's killing me to think about it
I've just got back from the hospital and apparently dad could have died by being left any longer. He has 'sepsis' on his notes and the doctor said it was lucky he came in when he did. The care home were still insisting they wait four hours for the doctor and really didn't want us to call an ambulance, despite it being completely clear my dad was in agony. How the heck can this happen?!