So here is were we are at now. Following a bout of Pneumonia after he aspirated. Dad should have had his op to insert a PEG on Wednesday, after initial investigation with a camera down the throat (which agitated Dad greatly even under sedation) doctors could not go ahead, as they said his stomach was to high (my mums words). We then waited a day for them to put a feeding tube up his nose and into his stomach (he had this prior to the op) and are now waiting for them to scan to see if it is in the right place before connecting it up. Dad is very weak. We are told Dad can only be fed this way for 4 weeks maximum. Now another meeting is to take place next Tuesday (5th July) to decide whether to attempt the operation again. Dad cannot talk or walk. He can just about reach his arm around us for a cuddle and gives us the occasional beautiful smile. He is unable to relay any wishes to us. Mum and I are now thinking that the operation will not go ahead and wondering if we should just take him back home (rather than the nursing home he has been in since March) where he will surrounded by familiar things and the people he loves. Apparently we would be able to feed him by mouth just small amounts but if he gets Pneumonia again it will just be palliative care that is offered. What choice do we have??? I feel like we are playing God making these decisions. Who has the right to decide what counts as quality when it is someone else's life?
Choices?: So here is were we are at now... - PSP Association
Choices?
This is going to be a hard decision to make, I am praying for you all, such a horrible disease. Yes when it is a loved ones life and you love them so much, it is so difficult. Sending you all big hug and hope you all feel happy with what you decided to do. Feeling sad for you all xxxxx Yvonne xxxxx
Thank you x
Really sorry to hear your dilemma. One we all dread, but know it's coming our way. I think, it's a case of doing exactly what our loved ones want, or if they haven't the capacity to answer, then it's that person in the mirror, that needs to give you the answer. Because that's the one who will beat you up, if you get it wrong!!!
Lots of love
Heady
Hi I would as you say just take him home and be with him for the time he has left x
Such a hard decision....I am sorry you have to make it. did your dad talk about the Peg maybe he did not want it in the first place....not a bad choice.....and quality of life....I hate that phrase....When I was teaching Sp. Ed, several of my students were deemed "quality of Life" meaning there was nothing anyone could do but make sure they don't get bedsores ....but now , with my husband quality of life means I read to him, he listens to books clicks the tv channel 19 times an hour and that i try to prevent him from falling or figure out a way to get him back up.
For your dad, who you know still has life in him when he smiles or hugs you, quality of life may just mean that he gets those opportunities all the time as he sits in his comfy chair or his comfy bed at home.....if 4 weeks is all he has....or 4 minutes let them be full of love and joy .... We all have to come to terms with death....but death and PSP does not have to make our life miserable and confusing...fighting the good fight and not letting sadness overtake what little time he has left will be your victory....and your daddy's. It's ok to let him go, when it's time. I don't have anything more than "philosophical" words....maybe it's just jibberish...but you are not alone and the decision you make will be the right one .
AVB
Unfortunately everything has happened so fast, last October on his 75th birthday Dad could still talk although a little unintelligible and was just beginning to accept that he needed a stick. I don't think he and mum ever discussed it as the diagnosis of PSP was only made after this in the November. Mum has intimated that she asked him then if they should die together ( this doesn't bear thinking about) and Dad said NO. They have been together nearly 60 years. They never envisaged this and are old fashioned in not wanting to know what was to come. I feel in my heart that we just need to take him home. We are blessed in a way that we get to tell him every day that we love him. Dad has had a wonderful life and we all have to go sometime. I don't suppose any of us are ever ready! either for our loved ones to leave us or to depart ourselves. Thank you for your kind words xxx
"Playing God" is what I was afraid of - but unfortunately, almost everyone is put into that situation - maybe it's best to go with the flow - sorry for the harsh words, but we all have to die at some time, one way or the other - if the quality of life is already non-existent (other than just lifting an arm and smiling), maybe it's best to let him enjoy the food he can already eat and drink whatever he can - not being able to do either can severely bring down the already minimal quality-of-life and it can be heartbreaking for the caregivers who have to administer the fluid down a tube into the tummy (I understand it's the patient's life that matters more than our distress but for me, in my dad's case, it was just traumatically hard)
A PEG tube doesn't prevent aspiration, no matter how upright the patient is, how much care you take, it can still happen (happened to my dad 3 times in less then 6 months) - PEG feeds can cause nausea and you may need to give extra meds just to keep the feed in the tummy - PEG is good if the patient can walk and talk and read the newspaper or watch TV and generally is participating in life - otherwise, we are just prolonging the suffering, in my opinion
Sorry if I sound harsh, there is no kind way to describe these options
So true Sammy....If and when it is my time to go......no PEG for me please....
Hi DottieDora, I'm so sorry you are in this situation and I can't advise you of a right way to do things but I will pray that somehow you will know what the right decision will be for you all. Thinking and praying for you. Nanny857 xx
I would take him home and spend lots of time with him. Comfort feed what he wants to eat. At this stage healthy diet goes out the window.
Brian is eating little and often....... so what if it is chocolate trifle at 6am and icecream at midnight his five a day is now things that slide down easy without choking him not a piece of fruit or veg to be seen near his plate. The only good thing he eats is weetabix ( the golden syrup one) and by the time I've put cream brown sugar and some pro cal shot on it not so sure about the healthy bit.
As others have said the peg doesn't stop people asperating it just lessons the chance of it happening. Janexx
Hi Dottie take him home and where he probably wants to be in his home with the ones who really love him. Blessing to you and your father. Nettie
Thank you all for your support and lovely comments x
So sorry about your dad, DottieDora . My man had aspiration pneumonia too. I agonized about having to make decisions by myself. In the end, it was the doctor who made these decisions. I had no choice to accept her decision!. She gave antibiotics and meds to reduce the secretions and make him comfy initially. They used suction but were reluctant to do it more than once.
Coughing made him very weak and it was important to keep him comfy, not coughing. She comforted me and said she could reduce his discomfort.
I know you want to take him home! However, he may be too weak to make that journey! You need a caring doctor - and there will be one beneath the one you are dealing with - you need to have a frank discussion on what care he can give to give him a good end of life, be it with throat tube, or PEG, or without either. Your gut feeling of timeframe may be better than his! Listen to what it says and live to the full what time you have together, be it in hospital or at home.
Remember that the last few days will need constant watch and medication so you will need access to a nurse/doctor with you. On call can sometimes be agonizingly too far away.
It was the fact I did not have to make that final decision but had to accept that of the doctor. I was not allowed to and had to bow to someone else. I realized the stress had been not in accepting that decision, but that it was ME who might have to make it!
Having let that stress go, I was able to continue to fight for his comfort and call staff if I felt he was distressed. They listened to me every time and were a great help.
I hope this is in some way a help. I hope you find a caring doctor, possibly Hospice specialist, and that you get him home if possible. Those last few days are precious. We could not get them at home but a private room was important! My thoughts are with you both. Jen
Thank you Jenny, as you say; the decision may not even ours to make. The Doctor has said that if the peg is not fitted and we take Dad home that we will get as much help and support as we require. I fear that as you say he may become too weak for either option. I feel more settled today after reading all the lovely messages. I left him earlier this evening peacefully dozing. I kissed him and whispered sweet dreams. I told him to dream about all the good times. Xxx
Stay with him as much as you can. You will know how things are progressing as well but maybe sooner than professionals!
Just be prepared that when his time comes, your dad may decide to slip away in a moment when you are not there! My man did! And I had spent 3 nights with him. It was his way of trying to spare me! It apparently happens often!
So spend as much quality time as you can with him! Everything else will wait!
Hi Dottie, it is a very very sad situation and I feel for you, my mum is still able to speak and she constantly tells me she wants to die, she tells me she has had enough and asks me to let her die. PSP is so horrible for the victim and the carers, we can't play god but only hope he will take our loved ones quickly and gently, thinking of your dad and family
Oh how awful for you. I never thought what it would be like that way around. Your poor mum and poor you, so helpless to do anything. Is your mum in pain or just frustrated at the illness? Thank you for thinking about us when you have your own anguish xxx
Hi Dottie, no mum is not in any pain just generally tired all the time, however today my kids made a home video for her and she got up to watch it. It was the best thing that has happened in ages
Oh that's lovely. The simple pleasures are the best xx
Sending you much love. Your Dad knows you love him dearly. Such tough emotional decisions but all I can say is go with your gut instinct and medical advice. There maybe no right of wrong as everyone is individual. Thinking of you all. Xxx
Such a painful time for you all.
I agree with others that, at this point I would go for him being peaceful, comfortable and feeling loved. There is a time to let go. But if you don't feel this then you must follow your instinct.
Thinking of you all,
Love Jean x
So sorry for you, please take him home. Thinking of you and your mum Madfy xx
Forgot to mention, there should be a palliative nurse to give you advice. X
You can put a PEG in with light sedation from the outside-we did-2 years ago this October and still working-went to watch soccer today with grandkids, walked along the path next to the water (after I got my coffee) and sat in the sun for 2 hours-had 3 feeds in total while we were out-take a bag with 3 syringes, 3 feeds and a bottle of water to flush and tape to secure the tail of the PEG. My husband can't walk or talk but enjoyed the whole day-then home and tried to cough for 3 hours-THAT was the heartbreaking part-suction machine in overdrive-GOOD LUCK
Thank you. This site is wonderful. Such a fountain of knowledge. It's just such a shame that any of us should need it. Glad your still having some lovely days. Every hour is precious x
I'm so sorry to hear of your predicament. I was exactly where you are less than a year ago. My sweet husband was still able to make words and be understood a bit. He asked if the PEG or feeding tube would cure him. Dr.s said no. He declined against either. We knew, sort of what was coming for two years so we talked a lot about what we were looking at. I miss him so much everyday. He passed September 30, 2015. I have bad days and not so bad days and am so grateful that he is at peace.
Such a hard decision - I feel for you. My dad has a peg and now things are deteriorating more rapidly I sometimes feel that the peg is just prolonging his agony really. If he were that poorly normally he would probably not be eating, but the peg keeps him alive. Dad cannot talk or walk either and it's so hard because you have no idea of his wishes or thoughts.
Thank you. It's a horrible illness. Good to know we are not alone but sad that others are also suffering xx
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