Hi all my husband dx in 2018 currently in hospital having had aspiration pneumonia, urine infection, bowl infection, COVID and a further chest infection. He is constantly choking on water so has IV fluids. He has been eating last four days.
He is bed bound has a catheter lots of choking.
Consultant suggests a peg.
Pros and cons to consider.
Any views would be appreciated.
Thankyou
Here is a copy and paste to a reply I have written in the past...
If you have a search on this forum you will find many discussions on feeding tubes, my wife has one and doesn't regret it.
To keep it short, if you believe quality of life is still there and hopefully you have a few years left to enjoy it (PSP is unpredictable!) then yes go for it
On saying that it is worth reading this story for reasons not to do it
google.com/amp/s/www.dailym...
On a side note a RIG feeding tube is less invasive to fit than a PEG and although needs changing more regularly it can be done at home.
Feel free to message me if I can be of any help
Thankyou heartbreaking to read xxWe have a lot to consider xx
hello Northstar1. I am so sorry your husband is having so much going wrong at the same time and is in hospital. You must be exhausted watching him struggle. Have you ever had the conversation with him about PEG feeding? Or his wishes about advanced care planning? It’s such a personal choice but if you say yes it may possibly lead to you having a few months longer together. My husband made his wishes clear last year when first diagnosed that he didn’t want to have a PEG fitted so I don’t have to make that very hard decision I know there are lots of discussions on this site on this subject so may be worth scrolling through those answers.
My husband never wanted to know what the diagnosis of CBD meant short or long term.So no discussions at all, it's made things very difficult.
What ever we do is in his best interests xxx
My husband was constantly warded for aspiration and losing too much weight .
The PEG suggested by our gastroenterologist was a game changer. He is now with heathy weight and has the reserves to ‘fight’ the disease. He still has daily therapies - of which when undernourished - was unable to muster the strength. It became a vicious cycle of getting more and more de-conditioned with each hospital admission
Upkeep is simple - every 6months a change that can be done at doctors clinic and we monthly self change the liquid in the PEG.
We use nutritional milk prescribed by the dietitian but we add food to it as well. The dietitian was key to ascertain he was getting enough calories and liquid
It’s recommended for the elderly or unwell not to give more than 250-300ml max including the flushing water.
We have had success adding eggs, cod etc, there are many recipes out there. We have tried a few brands of blenders but generally the most effective recommended is Vitamix which we use.
Most importantly no more aspiration issues - he is nil by mouth.
Hope the above helps
Take care
My husband was referred by his GP to the gastroenterologist for a peg feed. Nothing happened despite frequent phone calls. On the day before he died, in hospital, I was told by the medícal registrar that a neurologist, not known to us, had said that it wasn’t worth doing.
Of course I complained vehemently and ended with the Health Service Ombudsman. Their conclusion was that communication had been poor but expert advice was that it had been the correct decision.
We were completely excluded from any decision making so I hope that you will be included.
Sorry you’re going through this. My husband recently passed away. He had to have a peg fitted in April due to aspiration pneumonia. The peg was good as it meant we could have him home and we adapted really well. Sadly Karol couldn’t fight the pneumonia. 💔💔💜
Thanks for posting this - very timely. My husband has CBD and is currently in hospital with silent aspiration pneumonia. His neurologist has repeatedly warned him of the risk of pneumonia and has been encouraging him to have a PEG fitted for some time but my husband has resisted it so far. He may now have to accept it as the only option going forward. The posts on here are very helpful
Hi it's so difficult th only pleasure he has food xx
We have decided against it. My wife's quality of life is so poor, especially since dementia started overnight 3 months ago, that we are nit trying to prolong life. A heartbreaking decision.
I am so sorry for you both xx it is a heartbreaking decision xx
So sorry this has happened to you both please know that you can talk to people on here luckily I didn’t have to make that decision hugs to you
I was in almost an identical situation with my dad - and he got a PEG tube but I feel it was a bad decision since I feel like it prolonged his suffering
When the patient is late stage - my dad couldn't watch TV, read his newspaper, communicate properly, eat proper meals, walk or sit up by himself - adding a PEG tube will make it worse - it was almost impossible to manage his diet even though I was with him 24/7 along with my mom and I left my job to keep him comfortable - with the PEG, the patient is advised against eating or drinking so their eyes and nose and ears and throat dry up - a patient may get cuts inside their cheeks due to the severe dryness - if the patient can't swallow at all, then you can't even apply a wet tissue there
Adding a PEG won't improve cognition or anything brain related
I'm sorry for this but if the patient has reached the stage where they are not participating in life in general and now can't even eat or drink, I think it's the body saying it's time to stop
Other people may have different opinions so please do think this through - can you manage 24/7 care? That's at least 4 shifts of 6 hours each since it's backbreaking managing a patient, feeding through the tube, making sure they stay upright afterwards, making sure they don't pull the tube out, keeping the tube clean, changing their briefs 3/4 times a day (or managing constipation) since the PEG feed can never be as good as natural food
Again other people may have positive experiences but I believe it's for early stage patients who lost their swallowing before other muscular skills
Best wishes, it's a difficult decision to take
I agree with you on the subject. I definitely think that if the disease is in the early stages, the PEG tube might be a good option to add to the quality of life. But if the disease is in the late stages, then it probably will only prolong the patient's suffering. In my father's case, we have decided against the PEG tube when that time comes, which I suspect is coming soon. But is a personal decision if the patient has given some input about their wishes. Best wishes and stay strong.
We have no direct experience - this quote is from James Rowe's article on PSP diagnosis and management: "PEG reduces but does not entirely prevent aspiration. Exhaustingly long mealtimes, weight loss, reduced resilience to infection and pressure sores, and frightening episodes of choking may all be ameliorated by PEG feeding. A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition. In our clinic, about half of patients accept the offer of PEG."
I appreciate how difficult the situation and the decision must be. I would suggest you ask the doctors what impact the proposed PEG is likely to have on your husbands quality of life. Whatever you decide, it will be for the best
🌻🫂
hello Northstar1, my husband was also diagnosed in 2018. He had a peg fitted last October as his choking was getting really bad and the hospital were very conscious that as he was still strong enough to withstand the Op we should really think about getting it fitted. I put a post up here and got a lot of replies with pros and cons to the peg which was incredibly helpful to make the decision. So we are 7 months on, he is still eating real food but his swallow is very poor now and there have been a few times over the last few days where I have had to remove food from his mouth as he can’t swallow it. So we are now using the tube more and more, for hydration, crushing his tablets up and also the shakes to ensure that he is getting calories and nutrients, you do get used to the routine of the flushing of the tube, cleaning it and advancing it once a week. Definitely don’t regret getting it in and it takes the stress of tablet giving and hydration so he doesn’t get constipated. This disease will ultimately win but as long as I can keep him comfortable using the tube then I will do it. Hope your husband improves. Sending strength to you.
Do you think that your husband would be happy with a PEG?My husband decided to have one. It extended his life by approximately, 9 months.
In the end, liquid going into the PEG tube was causing a lung problem.so fluid and food was stopped to.prevent him from choking.
It is a very difficult decision for you. If it improves his quality of life then maybe it would be beneficial, if not , then why prolong his difficult situation?
My prayers and very best wishes for you and for your husband. Robbo
Thankyou the Consultant has told me gastro don't advise it as the patient can still aspirate. So that's that xx
It is very hard for you at this time, but at least you have a clear view as to what to do. . Take care. Rx
I'm sorry. That must still be a heartbreaking situation, though the decision no longer rests on you. Take care, our thoughts are with you. 🫂💜
Thankyou for all your replies xxx
My husband has PSP and is now in an excellent care home where I am very much involved in every aspect of his care, including giving him food and liquids on a daily basis. His mobility is poor and he cannot read or communicate very well. Due to his severe weight loss there are discussions about whether he should have a PEG feed. He struggles to eat and drink because of the choking and it makes him very distressed. In fact it is distressing and stressful for us all, because it seems to be an endless task to make sure he is getting enough nutrition and liquids. I don't know if he will agree to it at this point to have a PEG feed but we will discuss all the positives with him and see what he says. I hope he does, because then at least he can have a more relaxed time and not the constant 'nagging' to eat or drink.
I hope this is sorted for you all. It's very stressful for everyone xx
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