My Dad who I believe is in the end stages of this terrible disease (PSP) has just had x-rays which showed pneumonia (moderate to severe was the diagnosis) in both lungs. The have started him on antibiotics. They are now spoon feeding him pureed food because he chokes even when using a straw. He is also incontinent which is a new symptom. He lost 5 pounds in one week which is unusual since he has gained weight since being in the Nursing Home.
He was diagnosed 3 years ago but we are sure he had the illness for about 3 years before being diagnosed. He can no longer talk, walk, see or do anything for himself. My mom who is 85 finally had to put him in a Nursing Home in April because it was too much for her to handle. His caregivers there our so wonderful to him and its a blessing for use to know he is getting the round the clock care he needs.
Sorry for rambling -- just so many thoughts going through my mind. I have been down 3 times to visit (they live in MA I live in TX) this year and would like to see him one more time before he passes way but I already have a trip planned the 2nd week of November and I'm wondering if that may be too late.
Maybe I just needed to talk about it because my heart is so heavy with sadness and guilt that I can't be there all the time to help out and be with him. Is pneumonia one of the signs that his passing is close?
Thanks for listening.
Hugs
DeeDee
Written by
ddspan
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What I must stress is everyone's experience of PSP is different, and I'm afraid only medical professionals will be able to enlighten you on whether your Dad is close to the end of his suffering. My Dad was choking for a while before he passed away but like I say this could be different to someone else's experience.
No words of comfort will make it any easier for you, I'm sorry, I wish there was something I could say to enlighten you. If you need to talk, I'll always be willing to.
I completely know what you mean!! Always here for you and others. If we help just one person by being free to talk to, I think that's an achievement xxxxx
I'm not sure how helpful I can be - I lost my step-dad 2 weeks ago to PSP aged just 71 yrs. He became dehydrated and had a kidney infection, he was unable to swallow - for me I found it difficult to accept it was the beginning of the end - but it was and I wasn't prepared. He didn't want any artificial feeding so when he was no longer able to swallow this meant he was no longer able to get nutrition ... as horrible as this sounds it turned out to be a blessing.
The important bit is that the final stages seem to come on very quickly and I found it was also very difficult to get anyone to confirm the situation, due to the lack of knowledge of PSP.
I would suggest you bring your trip forward if you are able if you feel that your Dad is in the final stages just because of the unpredictability of this awful disease.
Never feel you are alone, although not everyone's experiences of PSP are the same, as a community we are all here to help and support each other as best we can, no matter how far away we are.
Go with your instinct and don't ever regret or feel sad if things don't go the way you think - PSP has a mind of it's own.
My thoughts and prayers are with you and your family.
So sorry to hear how poorly your Dad is. As the others have said there really is no way of knowing. If this is only the first bout of pneumonia then (providing they've got the right anti-biotics) he may respond well to treatment and "bounce back". If this is the second or third pneumonia then he may not respond quite so well to treatment. Sorry, I know that's not really what you want to hear but it's best to be be prepared.
Whatever happens do not beat yourself up about not being there all the time. I'm sure your Mum and Dad are both greatful for the support you do give and understand that you can't do more. Aphone call can mean just as much as being there "in person"
Take care of yourself.
Love to your Mum and dad and hope the antibiotics kick in soon.
Come back to the site as often as you need as there is always someone who knows what you're going through
Thank you all so very much - your caring means more than you know. Dad is still not responding and is not eating for fear of choking -- he has made it very clear he does not want a feeding tube. I call everyday and talk to my Mom alone and when she is at the nursing home she holds the phone to Dad's ear and I tell him how much I love him. Mom says he always smiles.
I'm so sad for everyone who has the disease or loves someone with the disease, but believe me it is so helpful to know there are others out there who know exactly what you are feeling. Not that I would wish this disease on anyone -- believe me I wish none of us had to be going through this.
This group is full of loving, generous and knowledgeable people who help us share this heavy burden.
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