My mum has been in and out of hospital quite a bit recently. On Friday she was admitted with a chesty cough but she had had a cold and so far (today is Monday) no one has told us whether she has a normal chest infection or aspiration pneumonia. They have been treating her with IV antibiotics and have her on a fluid drip but until this afternoon she has been nil per mouth and nil by PEG (this was fitted a few months ago).
I came from the hospital this afternoon very upset and now I am just angry! She was so thirsty that her mouth is red and inflamed and the skin from her tongue and inside cheeks is peeling off in bloody sheaths. I say bloody because her mouth was so dry it was bleeding. I can't believe that a dog would be treated this way and I feel completely powerless.
I understand that she is nil per mouth because her swallowing has not been assessed and they are erring on the side of caution, but how long must she wait to be assessed! She has a soft, pureed diet at home and thickened fluids and manages fine. Does anyone know of any other reason they may think it a good idea to starve a very skinny woman who is already suffering beyond measure?
At least they are now PEG feeding her but when I was sponging her peeling lips with water, she kept trying to grab the cup off me and drink the water. She was biting down on the sponge. She cannot talk and is completely helpless. I feel that we should have some say on how she is treated in hospital but all we see are nurses who can give us no information.
Does anyone have any advice? Are we able to make them give her sips of thickened fluid? I suppose they think they are doing the best thing to keep her safe but in the face of PSP should this be the goal? Surely her comfort counts for something?!
If only I knew she would be home soon it would be ok but she could be in there for weeks.
Cate
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CateT
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Hi Cate - much to be concerned about! You should be raising holy hell! If it were me - I would be going up the chain. They should be giving her water through the PEG or hydrating her with an IV and she should be fed if she can tolerate it. She should also be getting her mouth swabbed with a little water or be having her mouth swabbed with dry mouth gel - it should have never gotten that bad where she is bleeding. I would try giving her by teaspoon small spoonfuls of seltzer water - you shouldn't need to thicken it due to carbonation and it will help break up any phlegm she has or she should be given teaspoons of thickened water. If she is hydrated by other means - she shouldn't be so thirsty. You definately should have say with how she is treated. You may need to remind them that she is cognitive!!!
Wish I was there to take the fight off your shoulders. I know how difficult it can be. Thank goodness your mom has you as her advocate.
Sorry to hear of your Mum's awful treatment, sadly this is not uncommon in PSP due to lack of knowledge.
Speak to the Nurse in charge/Ward Sister/Doctor/Consultant ..... point out they have a 'Duty of Care' and they are not fulfilling it!
Ask to be referred immediately to the Specialist Palliative Care Team (there is one at every hospital to my knowledge - so ask at reception on the way in and call them yourself too! - It worked for me), they can assess your Mum's needs and hopefully then she will get the appropriate care and you will know the full situation.
Be strong and don't take 'I don't know' for an answer.
Hi Cate, i am not a doctor but it's clearly anacceptable to leave a patient dehydrated and hungry, especially a psp patient who carries so many problems.As dllera mentioned they must give your mum water through the peg and she needs to be fed, she needs to be physically as strong as possible.I hope you 'll be able to get her back home soon, best wishes to you and your mum,John.
Print them out a copy of the PSP info sheet. Also ask for an immediate SALT referral. Ask for an appointment with the Consultant in charge of your mothers care. I work within the health service in NI and this is the only way. Don't ask the ward staff to arrange the appt contact the secretary yourself. Clearly they are failing to meet your mums needs and this needs to be addressed. Keep strong and have a list of the problems written down to take in with you and dont let the Consultant talk you down. Keep strong praying and sending you hugs
I am so sorry to hear about your Mum. We have had almost the same problems at time when my MIL has been in hospital. It beggars belief that so called health professionals can just witness someones discomfort and not find out what they CAN do to help instead of just saying all the things they can't do. So I agree with all the things the previous people have said and will just underline the need to get in there and scream the place down if you need to do so to get your voice heard. We all know that our health service is badly over stretched now so I am afraid he who shouts loudest gets heard. And I am sure you understand that by "shouting" I mean just calmly and persistantly insisting that your Mother is given the care she needs. We went into hospital once to find Mum shivering under just a sheet, wet, thristy, looking up into a bright ceiling light as no one had put her sunglasses on her although they were there for that purpose and the best excuse the nursing staff could come up with was, "Oh, she hadn't said anything or pressed her buzzer" and the buzzer was no where near her and she can't press it anyway. Beyond talking for a few years now. We went mental. We now have a laminated card with basis PSP information that is put onto Mum if she has to go into hospital. Thanksfully she hasn't been into hospital since we made that up but we are hopeful that it may help the next time she is there. Anyway, speak up. Don't take ignorance for an excuse for crap behaviour. Basic compassionate care should be obvious to these people. Good luck and I hope she is home soon.
Thank you all for your comments I am not at this stage yet with my mum and Cate I wish your mum home soon. It is sad to think that you have to get stroppy to get the treatment that your mum should have. I will take on board all that has been said and be prepared. Good Luck to you all. xx
So distressing to read of the lack of treatment your poor mom is having to endure. I endorse all the comments above and you simply MUST speak to someone further up the chain. I sincerely hope your mum is made more comfortable as soon as possible. Sending you hugs and best wishes.........Stay strong! (easier said than done sometimes, I know!!!).
Thank you all so much. I am not sure what I would do without this site to give me strength. PSP is such a lonely disease as no one knows very much about it and very often I doubt my own reactions. I will make sure I get to speak to someone who can change things today.
SO, SO sorry to hear of the on-going problems with your Mum. If she is nil by mouth the very least they should do is give her intravenous fluids (which may help prevent her from getting so thirsty) and proper mouth care with glycerine swabs. Ask to speak to the ward manager and don't be fobbed off with anyone else!! Get them to ring the specialist care adviser at the PSP association if possible, although proper mouth care is basic nursing and not specialised to PSP.
Mum has also been in hospital this week She fell off the commode and badly gashed her head and needed emergency surgery on her right eye. They repaired the eyeball but havn't been able to save her sight
The nurses have all been very kind but they really have no idea about PSP
Oh Kathy, so sorry to hear about your mum. How terrifying for you all. I do hope you get her home soon.
My mum has been having iv fluids but they have not been giving her proper mouth care! This and the fact that she needs to suffer nil by mouth AT ALL are my bug bears. The only (very limited) pleasure she has is eating and drinking and I find it so hard to see her suffer this on top of everything else.
Well the SALT team have now assessed her (my dad had to chase it up and we found out that the referral hadn't even gone through so it was lucky he did chase it up) and have decided that it is too risky for her to have anything by mouth while she is in hospital. Not sure if we should pursue this further...
The good news is that we have now stressed how upset we were by the state of her mouth and they will be swabbing her more often now. Hopefully we will see the consultant tomorrow.
So sorry to hear your Mum is back in hospital again. From our own experience in the same hospital with my partner Derek, we had to ask the ward staff to write (in red) in his notes that we wanted an appointment to speak to the consultant. They are very difficult to tie down and even then, we have been fobbed off with a telephone call from a registrar, they never seem to want to do face to face.
Hi Cate sorry to hear about your mum. My dad was sent into hospital via his doctor to treat his chesty cough but he was diagnosed with pueomia a few weeks back in September. They were treating this prior to fitting in a peg. For the first three days my dad was nil mouth then on the Sunday they had put in a neg through his nose. There were times at the hospital waiting for a X-ray before they could feed my dad. He too had a drip and his mouth was bleedy and dry so we use to get sponge swaps to clean the area out. My dad waiting week on by week on was hoping the Antibotics given by his arm he would get better and get nutrition by the neg feed will give him some weight back on. But the doctors just tryed and tryed giving strong medication because dad was so weak he couldn't fight the puemonia. Dad drifted to a sleep and passed away. It was very hard not knowing in hospital environment if doctors are knowing what they are doing or controlling. It's very hard and sad this illness is so cruel because my dad too couldn't talk.
I wish that I had fed my dad food or water if I had known he was dying. Because my dad would try to spell out bread to eat.
Thanks Jan. I tried in vain to speak to anyone who knew anything today but no luck. The palliative care team are now involved at our request, thanks to the advice from this site. I will try the red pen route to get an appointment with a consultant.
Saran, your story is so sad. I am so sorry to hear about your dad's passing. We all need to be easier on ourselves as it is an impossible task dealing with PSP. We never know what the right thing to do is, just to follow our instincts I guess.
Thanks Jill. I shouldn't think you will have the same problems as you have taken control and set out your wishes for the future. My mum never did this, which makes things more difficult for us as we don't know what to do for the best at times. You seem to be such a strong woman and I really admire you.
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She fell off the commode and badly gashed her head and needed emergency surgery on her right eye. They repaired the eyeball but havn't been able to save her sight 
Deteriorating 
Peg 
PSP has taken my mum away from me.
The PEG was fitted today.
