It is difficult to know for sure with this terrible illness, but I would say that my husband is entering the latter stages of PSP. He has no mobility, very little understanding and unable to absorb new information, little communication and he constantly coughs and chokes when taking food or liquids, and also with saliva. Because of this he is losing weight very fast and has no muscle strength or energy to sit up for very long.
A PEG feed is being discussed, but I fear it could be too late to make a difference and unkind to extend is suffering any further. It will be my decision because I have LPA for him and there are no other family members who can share the burden of this decision. I swing from thinking it is a good idea because it will make him more comfortable, less stressed by drinking or eating, and may give him some peace. I then feel it would be unkind to extend his suffering and would he really want to carry on in the appalling state he is currently in.
If anyone else has been in this difficult decision, I would appreciate hearing your thoughts.
Thank you
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JAK63
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Hi sorry that you are having to make this difficult decision. 2 weeks ago mum was in hospital with a UTI and her swallow suddenly deteriorated. I'm lucky that my sister and I both have LPA and both said that PEG feeding wasn't in mum's best interests as she is very frail, bed bound ,disorientated and has had PSP for more than a decade. The consultant agreed with us and mum has now been in a hospice for a week for end of life care. We are at peace with our decision as we did not want to prolong her suffering and the hospice is ensuring she is comfortable. Hope this helps although I realize that the decision not to PEG feed isn't for everyone.take care x
Thank you for taking the time to reply, Joluu and for your honesty. I think my mind is becoming clearer on this issue. There is always the desire to hold on to the ones we love for as long as we can, but sometimes this is not in their best interests and we need to be strong enough to let them go with peace and dignity. I wish your Mum a peaceful end to this most appalling illness and the very best at this difficult time to you and your family. x
I'm so sorry that you have joined those of us who have had to face decisions affecting our loved ones.
My husband was adamant he didn't want a PEG, but was persuaded by a SALT to have one. Fortunately we were able to discuss this with our family and oldest friend. The concensus was against having one and he agreed.
My husband felt that he didn't really want to prolong the inevitable, although loved and cherished, he was at peace with his terminal diagnosis.
It really is down to the quality of life. When we had to make this decision he still had mental capacity. He had known from day 1 the ultimate outcome and whilst he 'thought he'd never end up like this' he didn't rail against his condition. But he was always the calm, logical man I fell in love with.
hi, sorry you are faced with this decision. My mom had a kidney failure about 18 mths ago and we realized to keep her going, a PEG was the only way to go. It was my dad's call, he went with the PEG...i think he figured she would last 6 months at the most. He would say he has not regretted this decision. My brother and I feel differently. Mom has been entirely unable to communicate in any way whatsoever for about 2 years now. Bed/wheelchair bound since the PEG. Good luck.
I decided against the PEG for my Dad, l had a sister and carer l could discuss this with.
Ultimately it was a decision based on knowing that if my Dad had been in a position to choose he would not have wanted it and also l couldn’t see the disease getting easier and having the PEG was not going to stop its progression.
It was a big decision but l believe it was the right one for him.
He passed away last year and it felt like he’d reached the end of his fight.
My husband died 4 weeks ago. In March his jaw had locked and the only way I could feed him was by using liquid Ensures and pouring it into him using a sippy cup. He had stated he didn’t want a PEG when diagnosed and I never once felt he should have one despite knowing the end was approaching. His quality of life was awful, unable to speak, walk, care for himself in any way, had a catheter, failing eyesight and stiff all over. He lost so much weight too before he died. Even now I would not have wanted him to have a PEG fitted as every extra day living for him was sad and cruel.
I thank everyone for their comments which are on the whole very similar to my own. I think I know which way my decision will go, and, although I faulter during low points, I must keep his welfare, desires and dignity in my mind. We have struggled through the last few years and I know the next few months are going to be tough, but I will be at his side whatever.
Hi JAK63, my mother sounds similar to your husbands current state. I am the only one also to make the decisions, although still able to eat, but can have a sip of tea then cough it out with such force. So I fear this decision will be mine also soon. I for one will refuse PEG as she does not want to suffer further and it is not living, just surviving.
You are in my thoughts and I hope whatever decision you make will be what is right for your husband and yourself.
So sorry to read what you are going through. This is a awful disease. My dad was referred by salt team to discuss a peg tube but due to the battles I've had with his gp and members of his care team, I think we now may be beyond that. He has the most awful cough that is causing him agony as it's so harsh. He coughs after most food and water. His speech is going and it's taking 45 mins plus to feed him on soft and liquid foods.
Realistically even if they did offer him a tube now, I don't think my dad would do well during or after the operation ( it was a bigger op then we first realized) Speaking to a doctor friend of mine, nutrients can be given through iv tubes if needed so that may be something to discuss. I've found half the problem dealing with SALT and others is they just don't get CBD and psp.
At the end of the day you know what's best for your person and their wishes. Never feel bad for trying to make a decision in their best interest. You're already doing everything you can for them xxx
Thank you CJ for your thoughtful response. Everyone seems to be involved with a medical opinion; SALT, GP (who has never actually met my husband), dieticians and the care home nurses. We are due to see a consultant in a week or so but I fear this is all happening too late for him. He is frail, desperately underweight and he aspirates constantly when he tries to swallow anything. It is so distressing. I personally think it is too much for him to cope with now. Even a hospital visit is going to be a trauma for him. He's an old soldier and I know he would want to now just let nature takes its cause and bring an end to this suffering. I thank you though and wish you and your Dad all the very best. X
Do you have hospice care involved? I have for dad and I have found them to be some of the best people to get things actioned and for advice. It would be worth while so you have someone who can help guide and reassure you. plus, as things do take their course, they can help you and your husband through that to make sure he is as comfortable as possible. The operation for peg or the tube would mean a 2 or 3 day stay in hospital. This is definitely something to take into consideration as could be more upsetting for your husband. It's why I believe for my dad it's a bad idea.
My husband is physically at about the same stage of CBD but mentally he still has enough capacity to express his wishes. When CBD was first diagnosed in December 2022 we discussed making an advance decision/living will and he did so, deciding at that time that if it came to it he would not want to be tube fed.
He was admitted to hospital with silent aspiration pneumonia in May 2024. The diagnosis by SALT was that he was made completely nil by mouth immediately, and was offered a PEG. We discussed it at length and he decided that life was still worth living for him and so the PEG was fitted.
Since then the PEG has been virtually trouble free and he has thrived. He looks well and has maintained a good weight. He desperately misses the taste of food and drink, especially coffee, but understands that the risk if he were to eat or drink is too great.
As suggested by the SALT team, I use a Biozoon machine which gives him some flavour (usually strong black coffee for him) and he gets some pleasure from that.
He still aspirates on saliva and coughs all the time.
I think the main thing for us is that he is still able, and wants , to enjoy aspects of life such as socialising; listening to music; seeing the family etc - if and when that changes then I'm not sure what will happen but for now it's working out OK .
I have LPA but I was so pleased that he was able to decide for himself as I think it would be the most difficult decision in the world to make on behalf a loved one. I don't know what I would have decided had it been up to me and I wish you well in making this decision
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