long time reader of this forum, which has been helpful. i realise PSP is kind of different for everyone thats had it, but was wondering about the final stages. every seems to have so amny different experiences.
my dad has had it for nearly 10 years I'd say. it was a pretty slow onset for him (we have a family friend who also has PSP and he was at the same stage as Dad at 3 years that he was at 7 years).
he now seems to be at the final stages - he can't speak, he can't see, he can't eat at all (he really can't swallow anything), and is very quiet. he has had aspiration pnuemonia 3 or 4 times now (most recently a week ago), and he's now very frail.
more recently, something he has never done, he started talking nonsense - talking about going to work (he hasn't worked in 30 years), saying daft things about me (i haven't lived with them for a while), and generally sounding quite delirious.
my mum is his main carer, and is really struggling.
i'm surprised he's gone this far. Doc seems to think this is prob the end, but he seems quite resiliant, so noone knows how long it could be.
such a shame that he's spent a good third of his retirement in this state, when he was such a sociable funny man.
I don't think i'm after any advice particularly - just wanted to share.
thanks, Jessie
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jessie_walker
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Sounds like the end is getting closer. The one thing you might look at with the daft things being said is a urinary track infection. That can cause delusions from what I’ve read on this site.
I think he is very near the end. However he seems to be a fighter? So he could last a bit longer than most but can't see it being too long.
My husband had the fast version sadly. However he was always fine mentally apart from oddly telling me he was at work one day! He had been retired for years! Just like your Dad? He looked so happy I just went along with it.
The other thing was telling me I was in the room down the hall. When I said that was wrong I was there he said: "no, the other Marie". That came before the day he thought he was in work. I am not sure if he mixed me up with my daughter that day. As he seemed to know me. If he had been thinking of her or perhaps our Granddaughter then there is a kind of sense to it? Apart from that he was fine, and always knew me and where he was. It's so odd this PSP.
I have often wondered if his mind just went back to happy days on those occasions. Goodness knows why I was in another room though! 😂. It seems odd that he was fine the rest of the time? I can't say I blame anyone for going back to happy days when they are suffering from PSP. Oddly the day he said he was at work really comforts me. I asked him if he was happy and he said: " yes". He really looked happy too. When I think of him that's one of my favourite memories.
He wasn't delirious however. Just happy.
How about your Dad, has he been alright mentally until now? I am amazed he has survived three bouts of aspiration pneumonia. That's what my husband died from in the end. He appeared to get better but his swallow went after that. So take care of yourself and your Mum, and be prepared for the worst as he can't last much longer I think.
Tell him you love him. Let your Mum have time with him to do the same. Neither of you will regret it. Your Mum sounds as though she has been a star. If you can help her at this time it will be a great comfort to her.
yes, mentally he's generally been ok, sometimes he gets a little confused but we all have a good laugh at that. this seems different somehow. thanks for the comment btw xx
My son, Jeff, died just barely 55 on May 4, 2017 at home. I kept an erratic diary of his progress from Feb 5, 2015 to his death.
The first signs of PD were March 2014. You can read his story prior to his PSP Diagnosis on my post PARKINSONS TO PSP.
He was DX with PSP on January 2017. At that time he could walk with a cane ( 2-3 blocks), he could talk, he could do his LUMOSITY exercises on the computer, he could NOT read from a book/magazine, he could watch movies and music DVDs on TV, listen to book Cd's on his portable player. The Neuro told him that he had 3-5 years to live (my son asked). He was NOT coughing but having HORRIBLE choking incidents...........once he was having acupuncture and not even eating. His Neuro said it was caused by throat spasms.
End of November, 2016, my son had his first bout of aspiration pneumonia (on Thanksgiving Day, prior to pnuemonia, he did a 3 mile walk with me). Nov 26th Urgent Care said he had a UTI (no lab work done). Nov 29th blood tests done and Pneumonia DX. He was treated at home with antibiotics. He began seeing a pulmonologist, and using a cane. We had a nice Xmas together....opened gifts had a nice dinner, played Scrabble. Jeff began to markedly go down hill....temperatures, constipation, cognitive decline,
Jan 2017,was the PSP DX. Begin to lose urination control (also abundance of urine at night), severe constipation greater, sweats, fevers, etc. CARETAKER THERE 24 HOURS FROM FEB TO DEATH. Admitted to hospital for 2nd bout of aspiration pneumonia and sepsis (7-8 days). At the end a feeding tube was installed and we were told to give NO FLUIDS OR FOOD OR MEDS THRO THE MOUTH.....all thro the tube. HOSPICE BEGAN.
My son suffered a seizure on Tues, April 25th.
He asked me if he was going to continue to to get worst. I affirmatively replied. His last feeding was on April 30 (he asked to NOT be fed), and water was withheld by Hospice on May 3rd. He died May 4, 2018. Per his request he never went into a Care Facility (I sometimes question myself on agreeing to his request). I will say this, my son LOVED his home. It gave him great comfort and satisfaction.
I believe his decline started with his first bout of A. pneumonia, and definitely when he was sent home with a feeding tube.....When my son died, he could NOT see the TV, he was in diapers, he could NOT talk (but used hand language to communicate...at times sophisticated concepts), he could not walk, he had thrush, a bed sore, etc.
He never suffered delusions. Until his death he was completely cognitively aware. A double edged sword.
I lament many things but my greatest was NOT making arrangements for his brain to be donated.
My son's suffering really started with his PSP DX......so you could say that God was kind in that it was 4 complete months to his death.....not years.
Marie_14, I believe, has given you good information.
It's heartbreaking Jessie: You nailed it: on the one hand of course we want our loved ones as long as possible - on the other, how awful that so much of their "golden years" is lost to this awful disease.
I hope you have a lot of chance to give hugs and kisses and words of appreciation to him. If there's one tiny benefit of seeing the end from this far off, it's that we have a chance to say the good stuff and show the love before our loved ones are taken away.
So so feel for you, that was my constant question in my own brain, when is it near the end. Leon suffered this incidious illness P.S.P. for 8 plus years, he like your Dad, could no longer see, talk, eat, etc, he became a bit confused also, but worked out that it was one of the meds he was on. Leon only got Pneumonia once whilst in hospital after having a peg inserted for feeds. Hugs and thoughts are with you Marg H
Thanks everyone. just to update you, last monday he said he wanted to go to bed, and he never got back out of it. hospice nurses started looking after him, and he died on sunday.
he was a tough old dude.
we were there when he passed, and everyone came to visit him over that weekend.
appreciate the support/advice/other stories that everyone posted.
Dear Jessie, I'm so sorry that you've lost your Dad. You must have very mixed feelings after 10 years of the horrible disease! I hope you will soon begin to remember him the way you enjoyed him best - he sounds like he was a great guy
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