Background - Dad isn't doing good at all - he keeps sleeping ALL THE TIME, screams when made to sit on his wheel chair complaining of pain everywhere, no medicines for his high BP control, being fed orally and can manage mashed food intake in small quantities, frequent bowel movement.
Apologize for my ignorance, but i have to ask this and here. How does aspiration pneumonia manifest? Is it easy to recognize? Dad coughs when thin liquids are fed and many times while eating his mashed food. These days he coughs even while not eating. No temperature and other symptoms i see, but he has crossed the stage where he can report differences. His chest is clear based on the nurse's check, what more should i look for? General doctors that can visit home hardly know about PSP, so medical check in the place I live in, has to be done by the specialists in hospitals only. We cannot do more hospital visits unless for emergencies.
Another question - I hear frequently here about unexplained death in sleep of PSP sufferers. I understand about reasons like cardiac arrest and no-food conditions. What other causes are possible?
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I'm so sorry for the suffering you and your father are going through. For what it is worth, here is what I know: Having the nurse listen for congestion in the lungs is really how you check for pneumonia, although it can be missed. Since PSP can interfere with temperature control, the usual symptom of fever may not appear. Coughing is common with PSP of course, both with eating and without, although coughing tends to be constant with pneumonia. Do you have hospice service? It sounds as if your father's pain management could be improved. Over here, morphine is a standard part of the hospice kit.
People do die of heart failure, apnea, blot clots and aneurysm with PSP pretty much as they would without, with the added stressors of inactivity, poor circulation and inadequate intake of food and water. My guy's blood pressure was up and down all the time, and I stopped worrying about that.
Have you looked into inpatient hospice facilities? If keeping your father comfortable at home is becoming impossible, perhaps that is an option?
You sound pretty stressed. I hope you are taking care of yourself in this, as much as is possible. I know how hard it is. Love and peace, ec
Inpatient hospice - no. I do not even know what their responsibilities are and we do not have one here. There are old age cares but they do not provide nursing facilities.
I will check with doc about pain management and specifically on morphine. But he doesn't complain a lot about pain unless he is made to sit. And it appears that his back area hurts. The worst thing about PSP is the inability of the sufferer to pinpoint what is happening to them.
Thank you for all the other details, EC. When someone here indicates passing away peacefully in sleep, i often wonder what must have caused it. This explains.
Someone here indicated there are patients who go on in this near-to-24-hours-of-sleep pattern for many years. Its all so scary. our family hates to see him suffer like this.
I do get physical help, so no i am not really physically stressed out. Its the unknowns in the medical aspects that sometimes is concerning.
So tough this disease. My dad is coming out of hospital today and he seems more stressed and restless in hospital. Every situation is different with PSP but for now we just want him home.
And, although it was a barrier to cross for me in his care, I found that acetaminophen suppositories worked very well for his pain, when the liquid was too difficult for him to swallow.
I spoke hastily. Sorry. On reflection, the suppositories were in the hospice package along with a number of different prescription medications, and I assumed these were also. I actually don't know!
Aspiration pneumonia only happens on the right lung. That is because of the way we are made, so that anything going 'down the wrong way' alwsys down into the right side only.
Suggest you get a thickener to help liquids go down more slowly and controlled. Jelly and yoghurt and icecream or custard may help. Madhed potato does not always slide down easily.
There is a suction machine that can be used to refuce secretion. I found nursing staff were reluctsnt to use it but it did help to relieve things when my love retained fluid in his throat and could not seem to swallow at all. It may be the nurses are concerned that use of suction may cause damage or bleeding in the throat.
There may be drugs to help to reduce saliva if that is part of the problem but that may only be a short term solution.
There are many ways a person can pass away. If the body is completely exhausted, they may go quietly in their sleep for no reason other thsn the heart has stopped. Hospice nurses are most caring at this time.
Dont worry about the removal of blood pressure meds at this time. I understand how you must feel as my love had his removed too. At thectime, doctors found his BP was fluctuating and it was more dsngerous to give meds than to not give them.
This is a very difficult time for you. I asked all the same questions and really wanted to know if my fears were correct. Your thoughts may be correct. Give your dad hugs and TLC for as long as you can.
Many thanks Jen. there are couple of symptoms that hasn't happened with dad (at least not yet and i am not looking fwd to it) - his vision appears to be unaffected and he is not appearing to be salivating so much. but he does cough quite a bit. Hard to spot aspiration pneumonia without making guesses right? We do use thickeners in the liquids quite a bit, but cant imagine not giving him water now and then. this is a very warm and humid place. and thats where the problem is.
I dispute the right lung only aspiration pneumonia. My partner was in hospital twice with aspiration pneumonia in the left lung. He died with it in the left lung,. He was on a liquidised diet, and thickened drinks, because of swallowing difficulties. We were also told by speech and language experts, not to give him jelly and ice cream because they turn to liquid in the mouth, and are therefore difficult for the patient to control
That's interesting. I note that pneumonia can also occur from an infection. I believe that can spread to both lungs. However it happens it can be most distressing and sometimes is slow to improve, especially if the body is weak.
Firstly, are you using thickener for liquids. If not I advise you get some straight away. Start with the minimum and then increase of the coughing persists. My mum drinks from a straw, so we can control the amount of liquid that goes down (simply take the straw away).
Mum has just today been fitted with an NG tube while we await the fitting of a Peg. She is extremely weak and is simply not able to eat or drink anymore. The decline is shocking. From eating and drinking on Sunday to a Peg next week. You should however also check for signs of infection, has something changed or is this just the next stage of PSP.
I know how this feels and it is heartbreaking to watch, try and be strong that's all we can do. All the best with your Dad.
Thanks for your kind words, eventhough it has been really traumatic with the Ng tube it has helped a great deal. Mum can still eat and drink orally if she is responsive, but when she is tired we have a back up.
We don't give mum plain water because it doesn't taste very nice at all with the thickener, we add squash to it to make the drink taste a little better (the more varieties the better).
With my husband he vomited and it went into his lung. However it can be saliva that goes into the lung. Someone said it is always the right lung and that is correct. Maybe your Dad should just be allowed to sleep? He is a very sick man.
Not sure it's good for him to be in a chair or wheelchair either. He may well be beyond it now?
He does need morphine by the sound of things and if you can get the Hospice involved in his care that would be really good for him.
It's not good where he is at and needs help from them.
Oh yes Marie. sometimes it makes me think if we are pushing him too much by trying to make him sit /take him out for a wheel chair ride. His head goes backward and he doesn't seem to enjoy even a bit.
You can get attachment that fits on the wheelchair handles to give head support. We use this for mum and also roll a small blanket to give added support because mum's neck is also arched back.
My dad suffers from AP & what they call silent aspiration, he doesn't know when it's happening, neither do I, he coughs because of COPD also, so very hard to tell difference and doesn't always hv a temp. He has very poor swallow, on thickened liquids and softer food. I think that's the worst, not knowing the answers, having to take every darn day at a time, everyone is different but I find everyones Q&A's on here so helpful.
Everytime you write about your dad, feels like you are talking about mine. They appear to be at almost the same stage at this point. Good luck to you as well. thank you.
I have to tell you I had pneumonia a couple of years ago I landed in the hospital for eight days. Did your Dad have chest x-rays taken of his chest that's the only way you will know if he has pneumonia. If he hasn't had an X-ray you might want to get one. I am letting you know this because I had gone to the doctor five days before I went to the hospital by ambulance and that doctor listened to my lungs and didn't hear any thing. I since have been you might say pushy about getting the right treatment so that I don't want to go to the hospital.
I had a cold about 3 weeks ago and the doctor put me on prednisone 10 mg tables you take the medicine for 10 days. I am just saying this because maybe your dad wouldn't be allergic to this medicine.
I am just letting you know because I hate to hear that your dad is not feeling well and your not seeming to get answers from who your going to. Well it is late and I need to try to sleep. Good luck to you and your Dad. I hope he feels better.
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