Hi all, I'm new here so apologies if this post gets too long. Here goes, my dad has psp and his swallowing difficulties have started. Was admitted to hospital a month ago and got IV antibiotics for a chest infection. Remained weak and confused and we were told he was suffering from delerium due to the infection.
As he was not conscious enough he was nil by mouth at start of admission and on IV fluids. However the medical staff obviously had the intention of providing nutritional support as an NG tube was fitted on day 3 of his admission. Unfortunately dad pulled it out and on day 5 another one was placed. However then the medical staff decided to remove it as they thought there was still a risk of aspiration with the NG tube. Dad ended up nil by mouth and just on IV fluids for 16 days before on my insistence another NG tube was placed and eventually he got some nutrition.
Unfortunately dad pulled it out as well and drs won't place another one which I understand. But then they did start feeding him although it has to be custard like foods and no normal liquids. Hospital has had him on 6-8 spoonfuls and no more as they say he can't manage more. However if I give him a dessert or pudding and he wants more, then he does manage it. If he is too sleepy at breakfast time then he misses breakfast. Today I went at lunchtime and he managed 3/4 of a whole pot of fruit puree as he didn't get breakfast.
While the infection no doubt took a lot out of him I think the low amounts of food haven't helped either. I keep getting told he can't manage more. But I know if he is sleepy then nursing staff aren't going to try a little later so meals are getting missed.
This is his first admission to hospital and at home he has rarely even had a cold. The chest infection must have obviously coincided with his swallowing difficulties starting.
My main issue is that the consultant has decided to discharge him as a palliative care patient which I didn't fully understand until today when they told me that he will go home for end of life care and not be discharged on any of his previous medication. When I asked for advice from speech therapy on what foods he can have at home and a thickening agent for liquids, since I've learned on the forum that you can have thickener for tea, coffee and squash type drinks. But I got told he's not to get fluids at home, he is just to be made comfortable. So basically they are sending him home to die in a few days.
Mum and I know he has deteriorated but we know him better than the consultant and I know he will have an end stage but I'm not convinced that it's definitely right now. I don't understand why we aren't even being give the option to give thickened fluids and instead being told nope, he's not to be on fluids at home. Once I realised this I said I'm not taking him home yet, not specifically to be almost starved and to die. So the consultant is going to speak to me again tomorrow, although I don't want to speak to the her. Any advice please? Like I said I DO know there is no cure for PSP and that dad will have an end stage but I don't think this is it. He does respond, and when asked if he's hungry and thirsty he says yes. Only we would need advice from speech therapy on the level of thickening required for fluids at home as I understand there are different levels depending on the patient's difficulty. We are based in central Scotland. Again apologies for the length of this post.
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Oh dear I am so sorry, when George was end of life they said no fluids, it is so hard, you feel guilty, but the doctor that came in said if we gave him fluids, he could aspirate and it would be worse/painful for him. I can still remember George laying in his bed I felt so bad, I use to wet his lips. So so sad brings so many things back to me. I pray for you all. Yvonne xxx.
Do you know why your dad pulled the tubes out? If he is able to communicate in any way, thumbs up and down, hand squeezes etc perhaps you could find out what he wants to happen next. Has he had enough? My husband had and didn’t want to receive food or water through his PEG any more and kept pulling at it when I was feeding him until I realised why he was doing it and asked him. If your dad hasn’t had enough and indicates he still wants food and drink I don’t think the doctor can tell you not to give it but see what the consultant says tomorrow. They will be concerned about choking and aspirational pneumonia. If his swallowing is difficult and slow enough for him to fall asleep before taking much in, he will not be getting enough to keep his body healthy and his skin and organs will deteriorate. My husband was at this stage when he indicated he wanted the PEG fitted. His body improved enough for us to go out on outings several times a week for another 10 months until he finally decided to give up. His final 11 days without food or liquid were calm and peaceful. He was able to communicate with thumbs up/down until 2 days before he died. He indicated he was not in pain and was not on medication for anything. Thinking of someone starving to death sounds awful but if it is that person’s decision and they are ready to go, it isn’t. That’s why I think if your dad can communicate at all, see what he wants. If he isn’t ready yet, the drink consistency should be what he can swallow without choking. When I first thickened my husband’s drink it was like a thick drinking chocolate but in the end, before the PEG it was the consistency of yoghurt or pouring custard.
If your dad has been in hospital for a month and he is free from infections, he would probably rather be at home whatever happens next. Ask him.
My thoughts and prayers are with all of you and I pray that whatever time your dad has left, it will be peaceful and pain free.
Thanks so much for the quick replies. Yes he can communicate a little in the way that mum and I are used to him communicating with us. PSP is such a rare disease that the drs have very little experience of it compared to Parkinson's Disease which my dad was misdiagnosed with like many PSP patients. So the drs and staff probably think he has very limited mental capacity. He is on pureed food right now and I managed to get him through 3/4 of a pot whereas hospital has him on 6-8 spoonsful and they haven't even tried to increase it. If he's asleep then he just misses a meal till next mealtime which wouldn't be happening at home. The NG tube being placed really upset him but it was only put in as he was too sleepy/confused with the delerium from the infection. So at that time it was the only way to feed him. But now he is eating and they have said soft diet. A couple weeks ago I was told they were going to try water with a thickener but it wasn't done. Having previously worked in hospital, though it was years ago, I know that you're entitled to see a dietitian. But speech therapy need to advise us on level of thickness for liquids BEFORE dietitian can start prescribing a thickener.
All his other observations have been fine, blood pressure, heart rate and breathing. It's like we are just being TOLD take him home, that they are just not going to bother assessing him for fluids and basically give him a few days to die off. Am not looking forward to speaking to the consultant tomorrow. He hasn't stopped eating yet and I know there will come a time that he will refuse all food and drinks. That's when I'm more likely to be convinced that he is getting to the final stages. And I have asked him and he wants to come home and he does but now will be just staying in bed. But we are just not being given the option to give him fluids at home as they haven't given us any guidance. Surely this can't be right. People are kept on life support machines and respirators and here we are being told no fluids for someone who hasn't started refusing food yet and can still swallow although it is poorer.
But they aren't even giving us advice on thickening his liquids so how on earth would we get a PEG tube fitted further down the line if it got to that stage. We are already facing a battle just for fluids which I don't think is correct JUST BECAUSE he has a degenerative disease.
Have questions ready when you see the consultant. Ask them why you are not to give him liquids. If you haven’t had the PEG explained and your dad wants one (not everyone does and it has to be his decision) it sounds as if now would be the correct time as all fluids can be given through it and liquid feed with high nutrition but he will still be able to eat puréed food. The first time I gave my husband thickener, I bought it from the chemist and followed instructions on the tin. I asked our GP to send a speech therapist to our house which he did and from then on we got it on prescription, but not before I was on the second tin.
Best wishes today with the consultant. Please keep us posted.
Thanks again for your reply. On Friday the consultant said he is weak and from now on we are just going to make him comfortable. Obviously the delerium took alot out of him but so did the lack of nutrition. They said no fluids as he will aspirate, but that's normal watery liquid. They assessed his swallowing and then it's on his chart for the type of food BUT on the fluids part of the chart where different levels of thickness are listed it's empty cos they are just not assessing that and refuse to cos she says he won't get better. Obviously I know PSP is incurable. But that doesn't mean withholding fluids! Dad's communication is very poor so he might not understand and I don't think they will accept a yes response from him for a peg tube. This consultant is set on no more treatment for him but I know dad better. I have POA for him.
At the moment if the consultant refuses to change his type of discharge from a palliative care one to a normal one, then once he's home I will try some smoothies. Have read that you can use Xanthan gum as a thickener even with clear fluids. If he is managing at home then I will call the community rehabilitation team who are brilliant. They have a speech therapist and dietitian as well as other healthcare professionals. Then get them to prescribe a thickener. After that get the GP to restart his meds. Not fussed about his diabetic control but one month of not getting his thyroxine tablets will obviously contribute to his tiredness. Mainly concerned about all his blood pressure medication. Not had it either and they want to send him home with zero medication as PSP has no cure.
Thanks for replying, I've been awake majority of the night thinking they have made the decision to send dad home to die. Well they won't put it in again as the procedure of putting the tube through the nose really upset him and at that point he was getting no nutrition at all so feeding tube was only option. Now he is eating but very little as is weak. But he is swallowing soft foods and pureed food. But they are not even giving us the option of hydration. Have said he is not to get fluids at home. But it's normal fluids he can't manage. And they are not even trying to prescribe him a thickening agent for us to give him at home. So he won't last long at all and it will be the lack of hydration that will end his life and not the PSP.
I really do feel for you, what an awful situation. Is the consultant you are seeing a neurologist or not? If not is it worth talking to your Dad's neurologist to get him on side and ask him to talk to the consultant with you present? Sounds like your Dad has a lot of other problems beyond PSP and you need a frank & open conversation from the consultant as to why he has come to such an opinion. Remember if you are feeding your Dad soft foods, they likely contain a high amount of water, so he will be getting some hydration through them.
You can ask the hospital for a 'best interest meeting' At this all involved in his care including yourselves, and hospital chaplain decide what is best for your Dad. I would ask for this as at the moment it appears all involved are not getting a say including his own wishes.
When my wife was in a similar situation in 2016. If feed had been stopped then she would have died then. Just discussed this with hospice nurse who is currently sitting with my wife and she agrees you are being treated unfairly.
Thanks kenh1, yes dad does have other medical conditions but they are not presenting a problem. Blood pressure has been fine, heart rate and breathing have been fine. Even though he hasn't had his medicines for 4 weeks. His body isn't shutting down. I just got a call from the PSP association and they say normally if someone is on a pureed diet, then along with that fluids are normally thickened. It's not being given to us as an option. The lady from the PSP association is going to contact dad's Parkinson's Nurse. I'm not sure if the consultant is a neurologist. Not everyone in dad's ward has Parkinson's so the consultant could be an elderly care Dr.
Is your wife's treatment in the UK? It's not always clear what the procedures are when someone is speaking about their own experience as they could be from the US and speaking of their experience from there. So what happened in 2016? How did you proceed? I hope she is as good as she can be right now XX. I know he won't last long if he comes home and is not given fluids XX
We are in the U.K. What happened was that prior to the meeting a junior doctor fitted an NG tube with a nose holster so it couldn't be pulled out. We went into hospital the next morning and she was sat up in bed with a big smile upon her face and looking a picture of Health. The feed gives all the necessary vitamins and has slowed down the deterioration of her health. I love caring for her it was a promise I made when I married her and I am happy she is still with us today. I was discussing your problem with the hospice nurse this morning and she was disgusted with the way you are being treated. We have been under palliative care since 2013 (we have an allocated nurse) at no time have they suggested hastening her death. When you consider it is three years since we were where you are now I have no regrets about the decision which was made then.
Ironically I have just had a meeting with the hospice, they have had to discharge my wife, she is living too long to justify end of life care. Hallelujah!
That is brilliant kenh1 that she is discharged from hospice and thanks for discussing this with the hospice nurse! It's a nightmare condition and compared to the usual age of diagnosis for Parkinson's/PSP dad was diagnosed below the usual age, he was only 58.
I agree with kenh1. You need a multidisciplinary meeting so you can have your say. There are drinks like Fortisip which are high protein thickened drinks that you can buy. My husbands medicines have been changed to liquid format where possible and other tablets are crushed as required. I agree that without his thyroxine he is going to get more and more tired so you must have a chance to ask why these decisions are being made with a Speech and Language therapist present so that expanations as to why this decision is being made. Good luck and big hug. AliBee
Thank you AliBee1, I totally agree. I used to be a pharmacist but not working now as help mum care for dad and my sister was a dietitian. So I know that there are other team members that can be involved. Speech and Language had been to see him after the last NG tube and thankfully then he was started on the soft diet. They were supposed to try him with water with a thickener but it never happened. I just keep being told by consultant that he is too weak and that's why it's not been done. When I asked one of the nurses looking after dad why he hadn't been tried on fluids with thickener by speech therapy she said she didn't know why it wasn't done.
Good luck. I hope that you will get a meeting with other disciplines as required so that the consultant does not have her own way without full explanation. Good luck. Thinking of you. Do keep us all updated as to how you are getting on.
Is it worth asking the consultant to obtain a second opinion from someone who's also a consultant and has perhaps had more experience with this condition?
I'd also be asking for your Dad's care plan and charts to demonstrate he was offered suitable food throughout the day when he was alert; and to record how much he actually took on each occasion. Ask the ward manager to get your Dad's key worker nurse to go through these records with you each day (so that you can check what's really happening).
Good luck. The medical and nursing staff may be right in what they say - but you'll struggle to come to terms with your future loss if you feel your Dad has been short-changed. For that reason, you must do everything you can now to ensure your Dad's properly looked after.
A meeting with all concerned staff is needed as others have said. Since he is still making an effort to eat I personally don't think he's ready to let go yet. Water can be thickened to a jell-o like consistency. Depending on his wishes a PEG could be put in also unless the hospital considers him to weak for the procedure.
Thanks, I agree. When he was too sleepy for breakfast yesterday, then it was just missed. When I got there at lunchtime there was a pot of fruit puree. So I fed him that and not just 6-8 spoonfuls as that is ALL the nursing staff give because that's what they have been told so they don't give more. He was obviously hungry and I gave him three quarters of the pot. Just been looking at the hospital's website and his consultant is an elderly care Dr. So I don't think this Dr is a neurologist.
Good Morning NCIS fan (l too am a fan)
First... l want to say my heart goes out to you, mom & dad. Second... Apologies are never needed here.
Third... Following your gut instincts is important, but listening to the professionals will help you and mom make decisions which will help your dad.
l had a dear friend, who worked for Hospice, explain to me in simple terms the stages mom would go through at the end of her life. She helped me help mom.
I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
The information I send you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have to face this unknown disease practically alone, exception made of PSP chats.
Thanks to everyone for their swift replies. It's been a long day. To Luis I'd like to say that I haven't finished reading your full message. But i can tell you already that dad needs help with absolutely everything so majority of the things we could have done years ago just don't apply now. He was diagnosed with Parkinson's in 2006 and only in 2016 (will need to double check) I think it was, that his regular consultant at Parkinson's outpatient clinic said that I think your dad has PSP. Obviously he has never improved as it doesn't respond to drugs.
Ok so the full update today was that PSP association who hold contact information for a lot of the Parkinson's Nurse specialists rang me this morning as I have only just joined the site. Told them what was happening and they emailed my father's Nurse Specialist. She must have been in clinic so we're waiting.
So I called her up to ask if she got email and she had just finished reading it. Told her everything I told you guys and she said she's going to call the ward where dad is. DIFFERENT hospital to hers but same city obviously.
Instead of waiting for her to call I drove down to speak face to face as it's local. She said to go to the hospital and ask to speak to speech and language therapy asking why I'm not getting thickened for liquids when dad IS on soft diet. Consultant spoke to me and was okay!! Said main reasons again were dad's swallowing is VERY poor, in her assessment he is starting end of life stage. But you all know I disagree. Speech therapist came asap, tried thickened water. But dad was too unresponsive to show him a swallow. But I was to ask to still get couple of tubs of thickener to take home on discharge. Which they said are ok with as I will have more time at home. Main reasons for dad getting such low amounts of nutrition have been he's very sleepy, 16 days of IV fluids only, and being nil by mouth have contributed as had delerium. But I still think NG tube should have been retried sooner after dad pulling one out then staff removing the successful one on Day 5 of admission and having given no nutrition through it.
Consultant now says are waiting to hear back from Palliative Care team and get dad seen by the Parkinson's Nurse so that we can all come to an agreed discharge plan that everyone is happy with. My main concern right now is adequate nutrition and hydration for when we're at home.
If he gets stronger at home then I will speak to GP about restarting some of his medicines in the appropriate dosage forms, liquids if needed or crushed. Mostly concerned about the blood pressure ones and thyroxine. But definitely not worried about diabetes ones as he has lost weight and previous dosage would be too much for him anyway with his current weight. 4 weeks of no blood pressure drugs haven't affected his BP as it's been normal.
Will probably invest in a health professional recommended blood pressure monitor so I can let GP know if BP starts to get higher and consistently remains high in future as won't start any drugs unnecessarily.
Stayed till dinner time at 5pm and omg he had the most to eat today than past month. Over 3/4 of his soup and after a short break a few spoons of pudding. Proof that he CAN manage more when he's a bit more alert and hungry and made sure nurse knew just how much he ate today. Hopefully will slowly slowly start to see little improvements.
Will go back mid morning to give him breakfast as he might be asleep again so no point me turning up at 8am. Thank you all so so much for all your help. Will keep you posted. One big problem resolved today but another one starting!
EXTREMELY problematic siblings (that's putting it mildly) causing problems and seeing dad's hospital admission as an excuse to show up after harassing mum and me for years and also having never tried to help or look after elderly parents. Do not want to come face to face with them when I'm trying to feed dad!
I’m so sorry to hear of your battle with hospital staff and doctors.
I think everyone has covered all the bases here. So o wish you all the best
Mx
Hi NCIS fan,
I forgot to mention my Hospice friend menioned it would be helpful to keep a journal of my questions for the doctors & write down changes mom was experiencing... & date the entries because sometimes when we are stressed & exhausted our days start running together.
Problem family members seem to pop up at the worst of times. You are in my prayers as you work through these difficult issues.
Thanks for your message and kind words. It always bugs me when mum & I are told to do right thing but psycho SIBLINGS, get away with so much.
Yes I am thanks. Mostly now my questions are about discharging him. My dad's tablets were all stopped. And nothing will restart. So worried about future issues cos normal medical needs no longer being treated. But I definitely mean future. But at same time I know that the conditions aren't as important right now, nutrition and hydration is. But am determined to get the levothyroxine prescribed again as the tablets are tiny and therefore compatible with his modified diet. Which reminds me of another question to add to my list which in my phone. Exactly what are his current levels of thyroxin or how low are they as hasn't had them since Xmas day. Admission was Xmas Eve.
Am finding the modified diet quite easy to deal with right now. And when alert will eat. So the still has a swallowing reflex. definitely wasn't end of life stage as Consultant and junior doctors had written him up as! Is loving the puree fruit pouches for babies! Getting tangy tasting ones as have read that sour/tangy things are good for some levels of dysphagia.
One thing I have not brought up yet at all though is that dad is currently bed bound due to this admission and infection. And drs say that is how he will be from now on. But I think once has gotten some more nutrition into him he could go back SLOWLY to pre admission mobility which was a level requiring alot of assistance. Hard work for carers still. But definitely better than lying in adult nappies all the time and the effects on skin. Not to mention risk of pressure sores cos will be staying in bed. But they will think I'm crazy if I bring future physiotherapy and mobilisation into the conversation now. Plan to target that in a few weeks but meanwhile will try to get him to do some light exercise while in bed. Moving arms and legs etc. But yeah got stuff written down want him home.
Dear NCIS fan, sounds like you have a plan and l hope it works. I am so glad you are writing questions down. That really did help me stay organized when mom was in the nursing home. Sending more hugs. . . Grannin B
Not been on here for a while, been busy full time with caring for dad since he got home from hospital. He passed away on March 18th (2019) just over 2 & half weeks ago. I didn't expect it. He was home from the hospital for almost exactly 6 weeks. In that time he was the only priority.
Carers were in 4times daily, district nurses were brilliant, coming in weekly & also available to contact out of hours. In the time dad was home, the biggest fear was aspiration, so he was fed very carefully. I had our GP out for every little concern. Any time I heard a gurgle in his throat I was fearful of aspiration even from saliva. Dad had his chest checked at least 3 times, and TWICE on the day he passed away.
There was no aspiration and no sign of infection as temperature was normal. In the end I'm now convinced it was his time to go, & his body began to shut down. He went into hospital approx 9am and passed away at 2.40pm. The last time the out of hours GP saw him was nearer to 4am at which point she ordered an ambulance. Again at this time all his observations were normal- BP, pulse, Oxygen saturation, temperature.
A urine infection was caught early on March 6 (bugged our GP to come out) and dad started Flucloxacillin that day for a 10 day course.
Still can't believe he is gone. Communication that day with the drs was poor I felt as I was told that dad was end of life. But as I had been told that before way back in early January, my first thoughts were, "here we go again, & that everything was going to be a battle just to get dad treatment"
In this case it was treatment for what I thought was vomiting which was getting worse. So I insisted again that I knew there was no treatment for PSP, so could they deal with this constant bringing up of "vomit" and get it under control so we could take dad home again. It was a traumatic Sunday, and Monday.
Needless to say I didn't pay any attention to the death certificate. Which is why I'm infuriated now that the disease or condition directly leading to death is listed as Sepsis preceded by pneumonia! Yes dad had pneumonia back in late December through to early/mid January! Dad was made comfortable in hospital, & given morphine, I was unaware of any tests being carried out between 9am until death at 2.40pm, and lab tests don't come back that quickly. So where did Sepsis come into the situation! I think this information on the death certificate is highly inaccurate and doesn't help in collating statistics for death caused by PSP. What does everyone think? As I feel I'm going to have a battle on my hands! I can't remember if anybody spoke to me & went through the death certificate with me when I was given it. Nevertheless I was in no fit state to scrutinize it at the time. It was only a few days later that it began to play on my mind much more. A local PSP meeting has advised me that I should telephone the PSP helpline first to see what they say/advise. Thanks all.
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