Where to start??!!

Hi, been reading the posts on here for a while now, thought it was about time I posted. My dad got told 18 months ago he had Parkinson's plus, later changed to PSP, he's 85 and not doing great. Doctors came in last weeks after he fought 2 lots of pneumonia in 3 weeks and told us that there will come a point they won't treat him no more!!! Don't get me wrong I agree with this overall but still hard to take. His swallow has become a big problem and dad doesn't want to be PEG fed. Doctors also informed us that they won't treat him with an IV when he can no longer swallow. They getting all the meds in place at home to treat dad at home, more palliative care for the future. I actually took all that ok, until I had to explain to my dad what was happening! One of the most difficult things ever, he hasn't ever wanted to know what's happening or going to happen next, but the doc told him straight that he is going to die from a chest infection. Crazy as it sounds my biggest problem, other than struggling with seeing my dad so poorly, is not knowing what's happening next and how long we have. He's struggling to drink much and not eating more than 2 spoons of food a day, he has no pain thankfully. Or he's just not telling us. Reading on here really helps, the extra info helps me, I like to know as much as I can. Found doctors, nurses and most other health providers a nightmare, I end up telling them about PSP. I'm sure you'll all know my frustrations.

Dad has always said he will never going into a nursing home, just been myself, my hubby and sister doing it all, got carer helping in the morning and district nurses are now saying they will help more and take a bigger role as things get worse. It's very isolating and worrying that everything is ok and doing things right, but not quite knowing what you'll find the next day.

Anyway sorry for the very long post, take care everybody xx

8 Replies

  • Hi M, I'm sorry but that Doctor sounds a little too blunt to me. I am also sorry you and your family are dealing with this on your own. I am at a hospital with my husband right now waiting for a diagnosis for his chest pain. I have drawn blank stares each and ever time I brought up PSP to any medical personnel here- as usual. At this point all you can really do is make him as comfortable as possible. I am glad he will have his family around him. Kudis for respecting his wishes. It is an incredibly difficult thing to do when the natural reaction is to want to do everything in your power to keep him with you. I wish you all strength in the days ahead. From most of the posts on here it seems that towards the end there is more sleeping and drifting off. Food intake just slows down. My mom passed away (non PSP) and she just lost interest In eating. She did not " starve to death". Read or reread old posts and you will feel more at piece about the days to come. Please take care of yourselves.


  • Thank you, will look through old posts. Will see how the next few days go, dad is confused and fluid intake is low, he's very sleepy too! You never know with him, he just keeps fighting. Xx

  • Thanks for the post Melis1 - my dad fought a near-pneumonia and he has a PEG tube - but he can eat and drink though his drinking just got worse, don't know if his stage changed or it's his infection that affected the swallow - I think your dad made a good decision and to be frank I think the doctor was good in telling the truth, at least to you, maybe it wasn't a good idea to tell your dad... my dad didn't want to know what was happening also...

    Best wishes - please feel free to post here for any questions - one tip, in case the doctors call for throat suctioning for phlegm make sure he is reasonably comfortable with a pipe pushed down his throat - for my dad it's like torture, he cannot tolerate it at all, others can - at his last ER visit, my dad's docs almost insisted but I fought them, he wasn't aspirating, (no water/food in lungs, only phlegm stuck in throat but very uncomfortable also) - I told them to put him on a sedative, nebulize him and put him into recovery position - and to also start the anti-biotic since he had a chest infection - the sedation put him to sleep so he wasn't struggling and the nebulizer and anti-biotic thinned the phlegm/mucus and it came out...

  • Thank you xx

  • Goodness this disease is cruel. My dad is struggling more and more with swallow and eating less and less each day. He had a sudden lease of life a few weeks ago and tried to get out of his chair, luckily missed a fall due to the care of his nursing staff. He then tried to get out of bed. Strange where the strength came from, then he seems to deteriorate!!! It kills me seeing him fade away. We have everything in place to make him comfortable when the time comes , I'm dreading it. Dads consultant was straight with him but in a very compassionate way and it's what dad would want. He refused the peg a few months back and we agree now that he was right to do so. Stay strong and use this site it's so informative. XxX

  • Sounds very much similar to dad, he got out of bed and had a couple of falls, one was ok the other was a bit of a bump. Today his mobility seems even worse, taking 2 of us to help move him, he keeps calling out and groaning in his sleep? Any ideas? Randomly today too he was acting like he was drinking but there was nothing in his hand, but he really believed it? Has anyone else experienced this? Thanks for the reply, it's nice to know your not alone xx

  • Hi melis1, thinking of you its a very difficult time for you when my mum came to the final stage they offerd mum to have a syring drive attached as she put her thumbs up to have it me and my brothers had no say in it , mum was made comfortable in her own home in bed and I stayed by her side for 5 days till mum slipped away in my arms it was a great comfort to of cared for mum in her own home . Its a cruel disease but I know mum would of been so proud of me and my 3 brothers. Thoughts are with you and everyone on this forum xx

  • I'm sure she would of been proud, although it's heartbreaking it sounds as peaceful as it could be. Thinking of you all xx

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