Hi everyone - my dad passed away on Tuesday around 4 PM Pakistan time
The burial happened at 8:30 PM (as Muslims, we try and bury within a day)
It's been a bit hard for me to post earlier since I know there are many patients going through the disease and their caregivers are taking care of them while having their hearts broken every hour, every day... I am so sorry....
What happened towards the end... essentially he had a sore throat which turned into a chest infection - 10 days of anti biotics later, he managed to be OK for 2 days and then another bout of urinary infection, which led to urine blockage and requirement for an internal catheter - then 2 days of hospitalization with high sodium levels, which led to unconsciousness - the doctors wanted to reduce the sodium level using water through PEG tube and checking via 12 hourly blood tests - his oxygen need increased tremendously, he had been on oxygen cylinders the past 2 days before hospitalization, running at low volume (1-2 liters) but in the hospital, upto 10 liters of oxygen were required - the doctors kept pricking him to check for sodium levels but after the 3rd prick I said enough..... he is completely emaciated, his PSP level is almost at the end, he can't even pick up his arms and legs at all and his hands and feet had become swollen (the docs said it could be kidney or heart or liver failure or dehydration or pretty much "anything"), his mouth has dry mucus stuck to the cheeks and throat, which I can't clean for fear of injuring him (I tried twice and it caused tiny cuts, which developed into sores because PSP patients sleep with their mouths open and there is no saliva to heal it)... his palliative care doc and neurologist wanted to continue the treatment but his medical specialist doctor agreed that's he's suffered enough... we were discharged with instructions on feeding, water and some anti-biotics via PEG tube (I said no more cannulas or pricks at all) - I arranged 3 medium sized cylinders and a 10 liter capacity AirSep oxygen concentrator at home
My dad hated hospitals and he completely unconscious most of the time there - but he realized he was home when I finally brought him back - we could see his eyes moving left and right in recognition - he realized he was home and his wife and us kids and his grandkids were there too - he even managed to purse his lips and put a light peck on his youngest grandkid, named after his father... he went to sleep and didn't regain consciousness the next day - at 7 AM next day, my sister work me up and said that dad is sweating.. his face and hands and feet were getting cold.. I had read before this indicated the heart was slowing down and the end was near - but we know there are always lots of false alarms so I wasn't sure - the pulse oxymeter showed his pulse was dropping - it had been around 110 for the past 1 month and now it was down to 70 and dropping some 10 points every 1 hour.. around 12 noon, it had reached 50 and it seemed like his heart was shutting down... his breathing became more prolonged... but he didn't seem to be in distress... my doctor aunt said the oxygen was prolonging his end - another doctor who came to visit said to remove the oxygen and see if there is any difference - we removed it for 2 minutes and there wasn't any so we put it back.. (at this time it was the nasal prong, which causes less distress to dementia patients than the mask) - at 4 PM he took his last breath, with all the family surrounding him - I managed to hold him and say prayers into his ear as per our tradition towards the end...
Afterwards, with help from my brother-in-law, we washed him and wrapped him in a white shroud for burial - he was buried 5 hrs later, around 9 PM
I will still stay on the forum and help/comment wherever possible - in many cases, I have received better information and better compassion from the people on this forum that in real life - I will always cherish that and try and help others still - thank you easterncedar, katiebow, abirke, ketchupman, jillannf6 and everyone else...
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sammy90210
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Dear Sammy, Maybe it's my mood maybe it's just the beautiful and completeness of thought that you shared with us, but instead of crying, I rejoiced that your father was with his family; in his home and even gave a kiss to his young grandson. While reading, all I could do was imagine/hope this same lovely scenario for my husband.....
Thank you for sharing all of your dads needs and issues with us. We were there as your dad progressed and though it didn't seem long, I am sure for you, it was an eternity.
You have been a good steward to your father. Be happy that he is at rest. Hug your family, and hug yourself for doing such a good job with your dad. And though now comes the grief take some time to recenter and rejuvenate.
With much sympathy,
AVB
These words are with all respect of your spiritual beliefs:
I will love you oh Lord, my God ,my strength, in whom I will trust; ........ . .....I will call upon the Lord who is worthy to be praised; . So shall I (and my daddy) be saved from my enemies (PSP) . Psalm 18:1-3 .
As for me, I will call upon God. And the Lord shall save me. . Psalm 55:16
jhi Sammy I am very sorry to hear of the loss of your father mate but I'm sure he will find peace now and no more suffering you can be assured that you done a good job with being a carer to him so do not weep for him just be happy that he is in a better place now as he would be for you
if & when my time comes I would hope to go the same way as your dad
with dignity and my family atound me take care Sammy peter jones queensland Australia psp person
thank you very much abirke - we as Muslims believe that the Zabur( Psalms), Injeel (New Testament) and Torah (Old Testament) are also books revealed by God - these words are very comforting for me - something else that comforted me were the words of the Prophet Muhammad, which say:
"When God has previously decreed for a servant a rank which he has not attained by his action, He afflicts him in his body, or his property or his children.
"He then enables him to endure that. So that He may bring him to the rank previously decreed from him by God."
And we all know that there are times when we are clutching at straws and looking for anything to help the patient relax - sometimes I would play the Quran to my dad ( youtube.com/watch?v=z-W_Nfy... ) - maybe it was the rhythmic incantation but it would be sometimes relax him and even put him to sleep
So beautiful and gives meaning to why....I read the Bible to B it has helped us alot. He is very knowledgeable in it and I have to stop and ask him , HUH? and he strains to answer me....it keeps PSP at bay just for a few minutes a day as our focus turns to something higher.
To me it sounds like you managed wonderfully at the end - what better death could your father have wished for? At home, with his family, his grandchildren, apparently not in any pain or distress and with you right next to him until the very end.
It seems wrong to say "congratulations" - what I mean is that you looked after your father with exemplary care and compassion during his illness and helped him to die in the best possible way. You could not have been kinder or have done any more.
So very sorry for the loss of your dad. Thank you so much for sharing his finals days and hours. My wife has been at these stages a couple of times, but fortunately has bounced back. Although sometimes I wonder if she has suffered enough and best if she lets go and I encourage her. But when you love someone so much, it's so hard. Love is wonderful and beautiful, but it sure can be painful.
inna lillahi wa inna ilayhi rajioon (From Allah we came and to him do we return).My sincere condolences on the passing of your father. It must have been very difficult to write about the final moments. Rest assured that your father is at peace now , this is the only consolation that we can take away from death. May you and your family have the strength to get through this difficult time.
May it be easy for all of our loved ones that are still fighting this horrible illness. We remain united regardless of religion, colour or creed.
I am not sure that I know you, but I know PSP and I am sorry it was a part of your lives; I am sorry it claimed your dad's life. It is now time to regain your own may you have strength to continue forward and take joy in the memories past and make joy in the future memories/
My condolences. Humbled to hear of another Pakistani family on this forum. Lost my father about 6 months ago to this terrible disease-you are right, this forum helped me in so many ways and the people here are so wonderful and compassionate. My heart goes out to you. My your Dad rest in peace. My father was with us at home as well when he passed, although it happened unexpectedly despite the fact that he was getting from bad to worse. He was buried the next day in keeping with our traditions as well. Be strong, you were there for him, and he is now in a better place.
thank you imli - the nursing care here is terrible, I had no choice but to help my mom in his care - when I was in hospital I wouldn't let the staff get near him - he is at peace now and in hindsight I think he was unconscious most of his sickness the last 3 weeks or so...
Thank you everyone for your kind words - AmandaF, I agree with you, it does feel satisfying to be able to care for a loved one personally in this condition.
I was not with my dad from Feb 2013 to July 2015 - he was deteriorating but my mom and some help was available - however, when he became bed bound around July, I decided to quit my job and return to Pakistan - I was fortunate enough (for the first time in my 15+ years of working life) not to work, so I took the opportunity to be a full time nurse for my dad - initially it was very difficult emotionally but I realized I was making a fundamental difference to his quality of care so that was satisfying as well - as PSP caregivers know there were many false alarms, but as the disease progresses your fear of losing your loved one is also complemented by the idea that they will be released from their suffering so it's a perpetual dilemma.
In hindsight, it was less than a year but it seemed like I was living an eternity of heartbreak in every moment - I hope/wish he is in a happy place now
Dear Sammy, thank you for sharing as frankly and generously as you have. You did an incredible feat taking care of your father so well. He must have been a wonderful man to inspire such devotion. I hope you and your family find comfort in your grief knowing you were able to bring him home, and that he is at peace. Please take care of yourself now, and rest. Easterncedar
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Kathy almost passed away
My rock... my hero... my dad
