My dad is now eating less and choking alot. I posted a few weeks ago about his constant choking and doctors are puzzled as what to do, how to treat it or even to understand if all choking, groaning and moaning are part of this illness. My dad does not want a A stomach tube and so my fear is this is the beginning of the end. Has anyone experience a loved one not taking the option of the stomach tube and how was that journey. ? Its soo hard to come to terms that I may not have my dad for long.
Thank you all for your time,
Jessica
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jessybx19
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So sorry, Jessica, that you and your family are facing this. I don't have any experience (yet) with what happens when a person refuses a PEG, but Sharon637, who lost her father about a month ago, generously wrote a long post about her father's passing. If you read it, it will give you some idea of what you might expect. I wish you peace and comfort as you go through this ordeal. Easterncedar
Hi Jessica we are currently going through a similar thing.Medical professionals have explained that our loved one would not be right for peg feeding as she pulls at all things out canulas cafettas.She has lost 10 kilos in 5 months and it takes an hour to feed her all soft mashed food and we are all thinking how long can she keep going.I feel she is suffering now and quality of life is poor but selfishly we want her to keep going and its so sad to watch her I wish you and your family all our love and pray for you
Hi Jessica - here are a couple of things we did - we used a thickner called "thick-it - this is the best one because is does not change the taste of the food - it will not work in yogurt or applesauce but most other foods. Also try papaya juice right before feeding - the papaya juice helps dry up the secretions - a blend of papaya & pineapple juice will work too - just make sure to thicken it - very small spoonfuls when feeding and allow at least two swallows before putting more food into the mouth. Folks with PSP will start rationing food in their mouths so a couple of swallows are good. We also got to the point of pureeing the food - that will certainly change the taste so lots of seasoning will help. Also - I know this may sound weird but whenever I wiped my dad's mouth with a damp washcloth like it was a napkin - he would swallow - - I don't know if we have been conditioned to do that but it worked. To have a peg or not to have a peg is certainly a personal decision not a medical decision - but a decision that we have to respect. At first my dad did not want one but changed his mind - we used the PEG to supplement his oral feeding and then ended up just using the peg when swallowing food was a very hard challenge. Also - do not feed your dad any grainy type foods like rice - those are really difficult to swallow and can easily go down the wrong pipe. I used to have a document that shared some good ideas - if I can find it - I will post it. Also - we had a mouth suctioner along with a toothbrush with a suctioner on it as well. Let me know if you need information on these and I will look for the information and post it so everyone can take advantage. These will certainly aide in making feeding a little better for the both of you. Oh - one more hint - PSP can actually change food preferences - lots of PSP folks crave sweets so when my dad had the PEG nutrition came through the PEG - sweets went into the mouth. I must say my father ate a whole lot of cheesecake. We thought what the hell - let him have what he wants ; )
Thank you for your response. Thank you for sharing your techniques. We take care of his oral care but I am interested in learning more about the toothbrush with the suction. We also puree his food and we use thick it..... we have talk about the PEG numerous times and he continues to refuse this as an alternative.
It's just a scary and at times seems like a lonely journey. My mom has been superb and is his primary care giver. She keeps me strong.
Thank you once again for taking your time and responding to my post.
Thank you all for your responses and suggestions. It has been a long.... it seems like you are not only fighting this illness but also the medical system....I'm in u.s. and I find myself fighting extra for medication, treatment and so on. this is an entire new experience for me and boy am I learning.
If you don't have Hospice, get it NOW. Hospice is NOT repeat NOT just an end-of-life thing. They can help you NOW. Hospice has supplied me with a Hoyer life, hospital bed, supplies of all kinds, and even medications (Hospice has its own pharmacy). I'm in the USA. Take advantage of Hospice as it's free and just needs approval of your neurologist. I can't tell you how valuable they are. They even supply an emergency drug pack for your fridge in case of emergencies.
Well Jim, Count your blessings that you are not in the UK. I begged and pleaded for hospice care and never got it for my Dad. He died in a hospital ward, moaning with pain with other patients around him telling me to get help for him. It was beyond inhumane and that is our NHS.
So sorry you are having these problems. I would recommend you get in touch with a hospice (Do you have hospices in the US?). Or speak to a specialist in palliative care. Palliative care is not just about caring for some one at the end of their life, it's about helping people who have a life limiting condition to achieve some quality of life.
Kathy, you are so right! Hospice has lots of help for us all. If only people knew it's just not end-of-life that Hospice supports but other patients for which there is not treatment or cure.
Sorry to hear this. My dad was unable to have the peg due he has liquid foods only
Tony
Dear Jessica,
I think that you are entering a really traumatic time with your father now and you and your mother must support each other. I have just been through this with my father who died on 17th Jan this year. It is a total nightmare and there is so very little that one can do. I too found that wiping Dad's chin would evoke the swallowing reflex and was so pleased when it worked as it is such a relief when you feel that they have had something good to eat. I struggled and struggled but my Dad's quality of life was so poor, he could not talk or see, plus everything else, that I too was consumed with trying to come to terms with why on earth was I trying to feed him, with a teaspoon for hours, in order to lengthen his suffering. I loved him so much and miss him so much but in the end he was nothing but skin and bone and died from pneumonia. It was hard to witness, and frankly I do not know whether I will ever get over it. He was a sweet, kind soul and should not have had such a terrible ending. I do not believe in God but if there is a God, then there is something not quite right going on there; that is my feelings on the subject.. Life is hard and the so called medical professionals do not make it any easier either, in my experience. My thoughts are with you, so sorry for you all, I cannot offer any help as I could not help myself even, but maybe it helps to know that someone out there understands your situation and sends you caring thoughts. Be grateful that there is you and your mother together to share the pain, I had no one. I was Dad's only child and my mother died some years ago. Try to help each other to get through it .A lot of love helps.
Hospice has been a lifesaver for us (not literally, of course). They have plenty of experience with PEGs if not with PSP. It must be quite disturbing to watch someone waste away. Do what you can and try not to take on any guilt for the patient's decisions. I will pray for you both (as I do believe in God - even when we have to endure suffering. I wouldn't know how else to get through this life).
My husband made the decision not to have a feeding tube early on in his illness he also requested to spend his last days in a hospice rather than in hospital
Due to his poor swallow CHris developed pneumonia he was,very poorly and was,asked at least twice in my presence if he would like,to have a feeding tube he could not speak but made it very clear that he had not changed his mind.
Chris was transferred to a hospice and did have small amounts of soup but eventually stopped eating. He passed away peacefully after 3weeks, at no time did he appear to be distressed and any pain was,managed very well by the hospice I hope this helps
Jessica, My current wife (24 years) has PSP. My first wife died from CJD (another brain disease). My first wife did not opt for feeding tube. She couldn't eat but Hospice put her on a catheter and IV (fluids only) to keep her hydrated and comfortable. She eventually passed on within a week or two. My current wife (PSP) does not want a feeding tube either but is not end stage yet. For those interested, if you join (log in) to the USA PSP organization (CurePSP.org) site they just had a FANTASTIC seminar on feeding tubes. They covered everything from how they work, the types, and decisions to consider. I recommend this video (on the CurePSP site) to anyone who may have to make that decision. I feel that often it is a selfish decision by family to keep the person going with feeding tube when perhaps a better decision could be made with the patient in mind. IMHO
One more thing. In the professional discussion of feeding tubes on CurePSP they said CAREFUL consideration should be given because you may not be able to get the tube removed later on, EVEN IF YOU WANT TOO. However, the UK might be different.
So sorry your dad is at this stage of the disease. I just went through this with my lover/friend in late January. He had advanced directives against having a feeding tube and was no longer able to eat anything but ice cream right out of the freezer. He could no longer speak either. We did the best we could to keep him comfortable as he slowly declined and then passed away in early February. I have no doubt a feeding tube would have kept him alive longer, but his quality of life would not have been much at all.
I know how hard all of this is for you. It's an incredibly painful process. Hold your dad close for as long as you can and let him know how much you love him!
With tears in my eyes I thank you all for your kind words, expertis and support. I believe this will be one of the hardest experiences I will endure in my life.
It is a big bag of mixed emotions.
I am currently looking in both palliative and hospice care.
I will keep you posted on either out come.
Between both of my parents I'm the only child. I'm the only one aside from my mom who has been involved in this process. I always remind her that his is no one fault and it this what life has given us. we will do all we can to be with him. My mom has provided my dad with amazing care to the point that he has been able to push a bit longer than if he had been in a nursing home. We are at a point where the extra help is needed not only for my mom but for my dad. It sounds like at this point hospice care may be what he needs. He eats as much as he can but has lost tremendous amount of weight since the beginning of this year and is eat longer and less then what we are accustom to see.
I guess I'm scared that the time maybe coming soon and even if we are blessed to have him for several more months or years he will eventually pass and that's is something that is hard to come to terms with. I know we all die. I know this is the expectation as we get older that our parents may died but I feel truely robbed. I never thought that this would be the way it would for him and our family.
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