Cause of death???

My dad had suffered from the effects of psp for about 4 years. And passed away this January. His death was unexpected, even though he was miserable and wanted to die, because up until a week before his death he was having no trouble with swallowing, would cough up phlem, but his lungs were always clear. I am still troubled by why he died so suddenly. Have other people experienced this with their loved ones?

26 Replies

  • hi, I am sorry if it sounds insensitive but your dad was lucky he did not suffer the horrible way most patients do - you will notice most caregivers say "finally his/her suffering is over" or "he/she is at peace" - you never got to a point where you were praying for death as a means to end the horrible suffering

    your dad lived well and died in peace :) he was fortunate and you are a great person to still worry like this but I would recommend that you feel happy that he is at peace

  • Thank you. Even for him with hardly being able to stand and take a few steps and not feed himself he had had enough. I am glad he was spared the loss of speech and swallowing. Thank you for your kind reply.

  • Hi although I agree with sammy90210 he had a lucky escape, I was wondering if no one told you the cause of death ie: heart failure etc . I would want to know too xxx

  • Well the death certificate had prostate cancer as the main and psp as a secondary cause, but his cancer markers were down from the last checkup. When he was telling the Paliative caredoctor he wished he could have assisted suicide he told him he probably wouldn't even qualify because he thought he was more than 6 months from death. I just always thought that you would have to aspirate to die from psp. It is just a mystery to me. Can you will yourself to die? Or maybe his body just gave out on all fronts??

  • Hi,

    Yes, I too would want to know - particularly if it was unexpected.

  • I agree with Sammy 90210. But it would be interesting to know why he died so suddenly without the normal complications. Maybe his heart just had enough. What was listed on the death certificate? PSP is not normally​ the cause of death because there are usually complications. It's usually listed as secondary. I requested that at be listed on my dad's. Just to help ensure statics of this horrible disease.

  • It could have been his heart slowly giving out. He had two heart operations before. I was assuming it had to be a massive heart attack. But maybe not. I always thought a heart attack was the best option for him as apposed to prostate cancer or psp pneumonia.

  • That's probably got something to do with it. Just find comfort in knowing that he didn't suffer with some of the other problems people face. My dad only lived 8 months after his diagnosis. He had some issues but not as horrible as some things people talk about. I'm thankful for that. He was 80 and wheelchair bound. He hated every bit of it and was becoming more bitter every day. Prayers for you. Even though he's gone you can find comfort here still. Stay in touch. Others need your comfort and advise as well.

  • Thank you. You are very kind. I can relate to what you said about your dad hating every minute. I think once he realized there was no chance of getting back to his life or some form of it he became angry and sad and finally just resolved with dying. One of the last things he uttered in a semi coma was to just let me go.

  • My husband has psp and has been going through the same thing coughing and brings up phlegm also. Lungs are clear too. My preys to you and your family.


  • fohtergilla, I had he same experience with my husband. He suffered from the effects of PSP, sending him back to rehab would have been a waste of time since any of the good one had no beds available. I sincerely regret not sending him back to the hospital since he was starting to have trouble swallowing. They said I could not take care of him anymore. There option was hospice and I believe they were the cause of him passing so suddenly.

    Auddonz (akaAudrey)

  • Audrey. I had the same feeling about my dad in hospice. He went there (because he was in palliative care) and the visiting nurse thought they could help him with the leg pains he had been having for years. He was supposed to just be there for pain management. The pain was so severe they gave him morphine which knocked him out for two days. He came to had bouts of severe agitation and within two days he was actively dying luckily he came home where he wanted to be. He went to hospice dec 9th., stayed 8 days or so, came home as was talking just a little. Then we knew he was dying and he passed Jan 1. Just shows after all the patients, this was a hospice director with 35 years of experience no one can predict anyone's death. The mind shift was really hard to make but I think it is what he really wanted if things were no going to get better. He might have felt a little differently but he always prided himself on having a quick wit and being able to make a joke and that was taken from him. His thought process slowed and perceptions were lost.

  • I do believe people can will themselves to die, as sad as that sounds xxxxxx

  • fothergilla, My love passed away January 21 after being in hospice for a little over a week. I swear they kept on changing his meds daily. He was not in pain but kept on falling at home and I could not pick him up. He learned in therapy how to get up himself but was at the point that he was so rigid he couldn't do it anymore. I was his care giver for 2 years and the whole thing came on so suddenly. His death certificate read PSO which I had to look up. Secondly they wrote heart. He also had a very bad heart, many issues. His blood pressure was fine. I feel that they treated him like a I don't know what, changing his meds so often. The day he died they had him so doped up he didn't even know I was there, which kills me. He wouldn't squeeze my hand, he always did. I sat next to him holding his hand and squeezing it tight, cryng my eyes out. No response at all. He did not want to die. He always asked me if Parkinsons would kill him soon and I always told him no. His heart issues were kept very much under control. I cry myself to sleep every night, I miss him so.

  • Auddonz. From what I've heard from all medical people that deal with dying is that he could tell you were there. I don't think we can understand how weak someone is when they are dying. It is very possible that he just didn't have the strength to squeeze your hand. I still wonder if the use of morphine pushed my dad to die. So I can relate to how you feel about hospice. Please take care of yourself and get help if you feel the grief is unbearable.

  • fothergilla, I wonder the same thing with the constant changes of meds and the morphine. I still have not unpacked and have the numbers of the people that deal with grief to contact. I know I need help. I have to get the strength to unpack and get everything organized in my life. Thank you for caring.

    Audrey (aka auddonz)

  • Hi there, without sounding callous it does sound as tho your father had an 'early escape' from psp. My mum was diagnosed 5years ago and cannot walk, talk, move etc. She's on puréed foods and coughing on thickened liquids. I wonder how much longer she has to suffer this tormented life then I feel unkind thinking these thoughts.

    One question..........did your father have a post mortem? I know that's an upsetting question and I'm so sorry to ask but it's interesting as to how they explained his cause of death.

    Sending much love and big hugs your way xxxxxx

  • He did not. I was wanting to get a brain autopsy to see if it definately was psp but it wasn't arranged in time partly because I thought he had time and we were always putting out other fires dealing with his care. Maybe someone could give some instruction on how to arrange that. I was really at a loss at the time of his death and just let it go because here was so much else to deal with.

  • I am sorry that I didn't have an autopsy done.

  • I agree with all you have said regarding the suffering. I think to watch someone you love suffer can be unbearable. How long has your mom had symptoms of PSP? I have wondered why most people dies within 6to 8 years.

  • Sorry, fothergilla, it must have been a shock for you. My father also died suddenly, but what directly caused it we don't know. That day he worked and had lunch with a client and was fetching wine from the basement when he dropped. He was 86, so no one officially cared to inquire as to cause.

    PSP doesn't prevent a person from having other things, like heart attacks and strokes. If your father had cancer and a history of heart problems, that might explain it.

    I have been told that 'failure to thrive' is a cause of death with PSP. I guess it need not be by pneumonia or a fall.

    Hugs and sympathy, peace, ec

  • Thank you for replying

  • Hi I am someone that has MS, in reading the last days with your love ones. It does scare me. Not knowing what's down this path I am going can I ask you what MS medication he was on because my doctor says I have been on Tecfidera for years and I should be getting off of it the two medications he is suggesting are tysabri and Ocrevus part of me wants to know my future with this monster of a disease and part of me does not. I know my husband would be not happy that I am doing this but I have to make this decision and would like to know about these medicine. It is that tysabri does have the risk of getting PML.

    If no one answers me I will under stand.

    I am so sorry for your loss I for one am very happy that you stuck by your parents through there ordeals to the end of there times I did it with my mom she past away 25 years ago from cancer. I want to say Thank You.

  • Hello. Sorry for your ms diagnosis. My dad was taking baclofen for muscle cramps and trazedon to sleep. But he did have progressive Supra nuclear palsy and not ms. Good luck to you.

  • Thank you for replying to my message

  • Sorry I can't help with any information about your medication, and sorry too about your diagnosis. MS is a really hard one. What is PML? I do send my best wishes to you. Love and peace, ec

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