Psp pueomia in last stages

My dad has Psp and has been diagnosed over 4 years ago. He is 70 years old

He is at the last stage of Psp and currently he is in hospital due to pueomia.

My dad has lost considerable amount of weight his doctor sent him into hospital as his chest was building up of flem. He is now in hospital being fed by neg tube.

And our plan was to get him better and get a peg fitted so he can come home.

When my dad was at hospital the first week he was getting better then they found raised blood crp of 178 now when he went in to hospital his blood result showed crp 41 so with him being in hospital he has caught another infection. This is prolonging him having a peg fitted. Just wanted to know at what level of my dad condition they can fit a tube. Doctors keep saying that he not too fit to get one done until his chest becomes better.they can't get the correct medication to clear his pueomia. It's like a vicious circle of him getting better and then feeling unwell again. So I have asked to speak to consultant regarding the peg fitting.

This is a cruel disease. Doctors keep saying that if we do a peg he may not recover. Then they say we can't give too many antibiotic. Also they are opting trying to opt the peg by saying that he may need to have only the neg. neg tube has been terrible because my dad pulled it out on last Monday and dad had to wait alll day for an X-ray they finally got one done to make sure it's in the correct place. Again on wedneday my dad pulled out the neg tube firstly it was not put in down enough so dad was sent back to ward for dr to check on X-ray then tried again so I told dr to stay in X-ray department to see whether it was placed in correct position. Just hoping dad gets better to fit peg then go home

And I understand that he will aspirate salive even with a peg.

Perhaps if my dad had a peg few months ago he would have not lost lots weight.

16 Replies

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  • hi saran

    it si so difficult - i am still in the ealry stages of Psp (I hope) and hav egot everhythign in place for when i cnanot communicate any more

    no peg fr me

    no resusciation

    etc etc

    so i realyh think hyou have to le thte hospital decide when or if he can have a peg fitted

    lol JIll

    hug s and xx

  • Hello Saran,

    You may think what I have to say is cruel, but please bear with me, it is because I care that I am plucking up the courage to write this. I wonder if you have asked your dad what he would prefer to do.

    Like jill, Chris and I drew up his advance directive during the early stages so that even though it was difficult for him to communicate when the time came to make decisions about peg tubes and resuscitation we both knew what he wanted and the doctors all respected his wishes. He was then allowed a dignified and stress free passing at home, which is what I had promised him. Is it time for your dad to be allowed to let go as well?. I really don't mean to be cruel, but there does come a point when however much we love someone we have to face the inevitable and look at whether it is time for us to let our loved one go. It is the hardest decision to make I know. My thoughts are with you. and may you be granted the strength to cope with the final stages.of this most cruel disease. With love and a big hug. Teena2

  • Saran, I think that your fathers wishes should be primary in this situation of the PEG. Also, a PEG can be pulled out just like a NEG. Perhaps pulling the NEG is his way of saying "I want to pass on". I think that although much capability is lost in PSP the brain continues to function at a higher level than one would imagine. In spite of loss of voice, sight, etc. etc. the brain is aware of what is taking place. Pulling out the NEG may be for a message more than discomfort. Something to think about in making your decision. May you be guided in your decision from above.

    Jimandsharynp

  • Dear Saran,

    How very hard this is for you. As a loving daughter, you will do anything to help your Dad. My husband is in the final stages and like Teena2, we long ago discussed the advisability of a PEG and the answer was a resounding NO. You have to let go of any guilt you may about doing what is best for your Dad. The best you can do may be allowing nature take it's course. It may be too late for your Dad to respond the whether or not he wants a PEG, but you can ask yourself--Would Dad would want to continue on like this? This disease is inexorable and in the end there is nothing we can do but be there for the person we love.

    With heartfelt empathy, Mira1

  • Dear Saran....I have to agree with Teena2. My husband Frank also had an Advance Directive in place well before it was needed. I registered it with all the Healthcare professionals so there would be no question when the time came. Frank also left us peacefully at home where he always wanted to be. It's very hard to let a loved one go but it's also hard to watch them suffering. I feel that your father is perhaps trying to tell you something, by pulling out the neg. Have strength. Take care & try to smile. Love Hazel B xx

  • Dear Sarah, I hope things settle down for you. When we took out an advanced directive for our mum in May this year we did it with her and at that time she said no PEG or NG and we kept it at home for 4 months rather than taking it to the care home in case mum changed her mind and because we were sure she might when she began to have trouble with food and drink. However having researched it and discussed it with others we realised that it would be a kinder and quicker end for her if we respected her wishes and now the A.D. sits in pride of place in her room. For mum the falls, mobility and and eyesight were the bigger problems first. The speech has been intermittently affected and the swallowing has only affected drinking so far. With thickeners she has managed but through her own perseverence and changing what she does and with us reminding her to take big swallows. I would rather she went tomorrow without intervention than struggle on for months and months in misery and on a feeding tube to no good end. Eating is mum's only pleasure left in life. When she can't do that I know she won't want to hang around. It's just waiting game and that's the hardest bit. Give your Dad all your love and let him guide you. xx

  • Hi Sarah,

    I read your post whilst going through my e mails and my heart broke for you. My dad had psp too and he passed away in April. So I just wanted you to know there's some one else who know's exactly where you're at and the indescribable feelings that go with it. The eternal brick walls you face on a daily basis are worth fighting. And yes, of course you're going to respect what he wants. He's your dad.

    I hope you have the strength and courage to do what's right, no matter what that may be,

    Sarah

  • Hi Sarah my name is Sandy and I have P.S.P. for about 3 years now I can still do most things by myself For me when the time comes I hope its along one I will not have a peg all I wont is to be comfortable and use some drugs to help me through the day. Have you asked your dad what he wonts take each day as it come you time with him is precious take care

    Sandy.

  • On Sunday late afternoon my dad was still alert but still heavy breathing then he the doctors called my family for a chat and said that my dad was not fit enough for peg feed as lungs are so weak as this could lead to be harmful. They suggested liverpool path way so we all decided but at that moment my dad was still on drip for fluids. I was stared to fill guilty that

    no drips or Antibotuc would be given. When we went back to our dad my dad naturally by gods started to breath slowly. So when we went back to see dad all drips were removed and gave no antibiotics and my dad started to look in peace having no pain in breathing so doctors gave morphine as pain control. So dad is breathing on oxygen but in gods control love dad so much x

  • Hi Saran - my thoughts and prayers are with you Dad and your family.

  • My dad took his last breaths yesterday had all his family near him prayer all the way miss my dad he was a Great Man and so many people will miss him xs

  • Dear Saran,

    I am so sorry that your father has passed on. I pray you and your family will be comforted by knowing that you were with him at the end.

    God bless you

    h

  • I'm Len and I am new to this group. My wife was diagnosed with PSP about 8 years ago at age 78. The progression has been slow but she is at the stage where she is just beginning to have some problems with swallowing. We are also in the position of wanting to travel to our grandson's wedding in February. I don't know how long this stage takes to become a real problem. As of now, she is confined to a wheelchair and has very little voice or vision but this grandson is very dear to her. We haven't discussed the PEG situation yet. I guess what I need to know is what we will be going through in the next few months so we can discuss the situation and plan accordingly. Thanks to all of you for your comments. Saran, you will be in our prayers as we enter the phase that you are currently enduring.

  • hi saran

    i am so sorry you rdad has finaly passed away abut hopefullly freefo pain and now of htis psp

    we all feel for you and know that 1 day our selves or love dones will eb at the same stage

    lol nand hugs

    Jill

  • Sarah I'm so sorry to hear your news and such a blessing you and your family were with him. I hope the love you all have for him and each other carry you through,

    mine and my mums thoughts and prayers are with you,

    with love

    Sarah

  • Thankyou everyone for all your help and support

    Love

    Xs

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