Dad in late stage PSP


Sorry for the long message but I would really appreciate some perspective...

My father is in late stage PSP

He was diagnosed with Parkinson's dementia - about 6 months ago he started eating and drinking lesser and lesser

2 months ago, underwent a lumbar puncture, since the doctor assumed he may have NPH (natural pressure hydrocephalus) - later that night he aspirated on some water and was rushed to the hospital - the doctor suggested insertion of PEG tube - we, as a family, were unaware of the issues around this and agreed, hoping that nutrition and water through the PEG tube will help improve his health - later that day, after checking an MRI, he declared him to have PSP

Unfortunately, his condition hasn't improved at all but he has actually crossed a stage - his cognition is very poor and it's almost impossible for him to articulate words and sentences - also he cannot control bladder movements and he suffers from constipation or diarrhea alternatively (except 1 week of normal bowel movements)

He can only shout or grunt loudly to announce he is in pain or in discomfort - earlier I could ask him simple yes or no questions like "are you cold?" - "is it noisy?" - "are you hungry?" - "do you need to go to the toilet?"

I (in my role as primary caregiver) do everything I can do alleviate it - I usually follow the following steps:

1. Check if he is warm or cold by touching his legs and feet

2. Check if there is dry sputum in his mouth - if yes, I try to quickly take it out with a wet finger (quickly, because he bites me otherwise - and then I laugh and say hey you bit me - this is one the few times he actually laughs out loud)

3. Check if his diaper is wet with urine or stool - I clean and change him immediately if it is

4. Check his PEG tube if it's at a bad angle

I am not sure what else to write here - I know this community is very supportive - can someone please suggest what other things to check or be mindful of?

Thanks alot

- Sammy (in Pakistan)

51 Replies

  • Here are links to a Caregiver Magazine and a Caregiver Organization with many articles. You may find some that are helpful here.

  • thank you :) I am reading these..

  • Dear Sammy, You are clearly a good and caring person, and I'm very sorry you and your family are going through this. My dear one is not yet at the stage your father is in, so I don't have anything brilliantly useful to offer. I expect you know to look for pressure spots on his skin so you can prevent sores from forming. I'm sure the information Christine has offered will be good. I'm really only writíng to send you best wishes for you and your family in this difficult time. Take care, Easterncedar (maine, USA)

  • Thank you very much :) We do keep looking for these - he moves his legs quite frequently but I have to turn his side so his back is not affected

  • Dear Sammy, I understand your situation; we were in last year. And I have to admit : it will get worse, where you will be unable to communicate with your father. Mocus production is a typical side affect of peg tube feeding. "final" stage might be strange. I thought last year to be in the 'final' stage, but compared to last year we are 'in' the final stage. Do you have a nurse to pass by 2 or 3 times a day? In the final stage you need support as you will be unable to handle it all by yourself. Reducing peg feeding (to 350 cal/day) reduces mocus production and increases the patient's comfort. Take care !

  • Thank you Paultsio :) - that's a good tip - right now my father cannot do a thumbs-up/thumbs-down gesture - usually hsi cognition is too less for him to understand

    One thing, how do you calculate the cal/day ? did the nutritionist help you or is there another source (maybe online)

  • Dear Sammy,

    We use Fresubin 2Kcal HP (from the German brand Fresenius Kabi). This is 0.5 Ltr. and is based on fish oil (some other brands like Nutrison are based an vegetable oil). We give half of the content, because the more liquids you give, the more mocus will be produced. We add in his peg tube the following : some liquid Q10 (to improve communication adn energy) and Acetylcysteïn (in order to make the mocus more liquid). I can inform you some online brands if you like.

    Try to find a way to communicate : we communicate now by lifting eyebrows. Be careful what you say in front of him : PSP patients hear very well ! If you need more info, I will be glad to help you. Take care.

  • Thank you very much for this :)

    Yes, my dad was always hard of hearing since he was in the Army and his hearing was impaired by tanks firing shells during exercises - but a couple of years ago, it started improving and now it's so sharp that he can hear my mother speaking in the other room

  • Hello Sammy, I'm sorry this awful disease is affecting another family. It sounds as if you are doing everything you can. My husband sounds very similar but he didn't have a PEG fitted when it was suggested last September but does still eat liquidised food quite well. The grunting, groaning, shouting your dad does may not be discomfort. My husband does it a lot but can communicate by putting thumbs up or down for yes and and when I ask him if he is in pain thumbs are always down and when I ask if comfortable they are nearly always up. If not, it is usually because he has been sitting in the same spot for a long time and his bottom has become numb. I stand him, massage him and put him in his wheelchair or to bed, whichever he indicate with the thumb. As well as physical care, he also needs stimulation. I don't know what the situation is like in Pakistan but it helps to go out, see people who will talk to your dad, let him feel and hear different things and see different things if he opens his eyes. Sun glasses are essential though as many are very light sensitive.

    You sound like a very caring person and your dad is fortunate to have someone like you to look after him. I hope you have a lot of support though as you can't do it alone.

    Very best wishes

    Nanna B

  • Thank you very much NannaB - I will take care of the points you mentioned - Recently I noticed that when I help him stand up to move him from his bedroom to the living room, I would rub his back lightly and that seemed to relax him - so I think a light massage would help him

  • hi sammy]i agree with wha nannan jaas said and you caonly do your best 4 you dad which i ma sure you are doing alreadyANDS YOU WILL NEED SOME HELP

    lol jill

    PSP peron in the uk

  • (sorry for the late response, I've been traveling) - thank you very much for your positive attitude Jill - I wish lots of ease and comfort and happiness for you :)

  • I'm sorry but I can't offer any advise as my husband is only in early stages. Your dad is a very fortunate to have such a caring daughter. My best wishes go out to you and your dad.

  • Thank you very much :) best wishes for the future Katiebow - and I'm his son :)

  • Oops, apologies for that.

  • no worries :) it's a compliment if someone thinks I am as compassionate as women are assumed to be

  • So sorry to hear about your father. We are not at this stage yet so I cannot offer anything useful in the way of advice etc. Stay strong, get as much help as you can and my thoughts are with you xx

  • thank you showaddy :)) I really appreciate the concern and affection from everyone on the group

  • Dear Sammy. Sorry to hear about your dad. You are doing all you can, it's a cruel illness. Be aware that he understands what is going on around him, he is just unable to communicate. What NannaB said us very important, let people talk to him, tell him what is happening in their lives. He will not answer or even have his eyes open but he will understand. Tell him what you are doing and that you love him. All the best, Maddy

  • Thank you MaddyS for the advice - I noticed he laughs at certain jokes - he "gets" the humor he used to like, maybe not the complete joke but through the intonation only - I watch an army themed TV drama series with him some days a week (he was in the army) and he gets a lot of the references and laughs - so that's very satisfying

  • Hi Sammi. My hubby died last October. I found that his response to jokes and funny stories was very quick, normal talk usually took some time to get a response of sorts. Take care. Maddy

  • thank you :) - yes, he gets jokes very quickly as well - though he doesn't respond with a "no" if I ask if he wants something and he doesn't - he only forms the words for "yes" when I get it correct (sorry for the late response, I've been traveling)

  • Hi Sammy not much help with PSP other than it progresses in different stages. My wife had a PEG fitted in April, due to rapid weight loss because unable to swallow. Saliva in control for most of day with use of Glycoperonate Bromide, it does not dry up completely but stops it for 18 hrs. I have bought wrap around dark glasses as she finds bright light painful as her blink rate stopped and eyes fixed. Communication is as you say yes/no questions, thumbs up now difficult for M so hold her hands and squeeze for yes.

    Best wishes and look after yourself. Tim

  • Amilasy, How long has your wife been sick. My husband lost 75 pounds in 18 months. He was only diagnosed about that long.

    We are at the thumbs up stage, and puree foods.

    He said he has double vision. He still walks some with a walker and me by his side. How do people know when it is the end stage?

  • Margaret has had PSP symptoms since 2010 but was diagnosed 3 yr ago. Her weight loss was slow until Jan 15, about 10lbs over 2 yr, but between Jan and Mar she lost 35lb, this was caused by choking and lack of swallow reflex. She could not take solid or puréed foods at that stage.

    Since having NGT and the PEG her weight has stabilised, she is happier and only infrequent alarming chokes.

    Her communication has deteriorated slowly but the 6 monthly SALT visitors notice and now classify her as having no speech. She tires and gets confused very quickly so thumbs up only works, unable to thumb down, and from afternoon we only use the squeeze for yes.

    I can still walk her round the house and to the car no more than 10 mts. But getting quite unstable if I do not brace her close to me.

    I do not consider M is in late stage of PSP as she can still mobilise, is, on the whole, continent, remains awake most of day, can still recognise people, smile.

    PSP is a long road and different for everyone. Some decline steadily others like M deteriorate in steps but slipping slowly often deteriorating so slowly that I do not notice but visitors do.

    I do not know what the later stages will be but have started planning for the end: wills, POA, funeral plan, hospice contact, finance.

    Sorry cannot be much help to you mthteach but this site is full of useful contacts.

    Best wishes Tim

  • Thank you Amilazy - my father started losing weight about 6 months ago when he reduced his eating - since the PEG tube was inserted, he started taking feed regularly but was losing weight - we reduced his feed from 6 hrs a day to 5 (some doctors recommended 4, but others said no) but he is still losing weight - I have to get an evaluation again - a difficulty here is that doctors don't visit the patient at home but we have a neighbor who is an MD and visit every weekend

  • I feed Margaret using a syringe 4 times a day, giving her 6x 200ml bottles of Ensure liquid food a day (used to be 5 bottles but she continued to have weight loss). I also have an extra feed (usually before bed) to put in extra fluid and meds every couple of days not food. Each feed is about 600 mls (just over a pint). Doctors and professionals only visit in extreme most times I take M to them.

    Discuss with your MD on weight loss. Do you feed by a PEG pump machine? if so different volumes and issues I do not know about.

    Best wishes Tim

  • (sorry for the late response, I've been traveling) - thanks for the guidance - I will talk to his doctor again - I will check Ensure as well - right now my mom makes his feed herself but the quantity may not be enough - he takes his feed through a syringe too

  • Maybe you could make sure you cleanse the eyes through the day .Are they getting dry /crusty . small Bowl of gentle soap water with a spot of baby oil . Some people use a spot if Bi Carbonate of soda .

    In fact this is what I always do first thing in the morning for . Also nostril and lips .

  • Thank you cabbagecottage :) - he has glaucoma so his eyes have been watery for the past few years - however at night, when he takes his feed and some sedation medicines, his eyes become very red - I can see he blinks lesser - we use something called rose-water to cleanse his eyes twice a day - I have to check with the doctor if this is sufficient or not

  • Sammy sound like your doing a good job a few things I do is I write A-Z big enough for my aunt to see and she will spell out her words so I know what she wants, she also has the peg and we hardly use it she still eats most foods, she has had PSP for about 10 years make up your own sign laugauge for the two of you , like if my aunt wants the ramote to the TV she pushes her fingers as if she is pushing the ramote if you can get him in warm water therpy it is amazing and he will be able to move again my aunt can not walk or anything but in the water she sure can good luck


  • This is good with the sign language. I know some sign language from my grand kids. I am teaching my spouse before his speech is completely gone. We are almost there now.

  • thank you for this :) - I will try water therapy with him - he cannot recognize letters - he can form the words "yes" or "no" with his mouth half the time - but I read somewhere (and it's true for my dad) that dementia parents have a hard time repeating things - so you have to guess the first time

  • So sorry that things are so bad for you both. I am interested that they tried a lumbar puncture with your Dad because I have pursued the NPH theory for some years, except when I finally got to see a Neurosurgeon who would do the operation, only 3 weeks later we finally saw our local neurologist who said in his experience, the lumbar puncture/shunt op always makes things considerably worse with PSP patients !

    It seems that we are thwarted every time we try something new to help our loved ones, perhaps all we can do for them ultimately is give love and our best care !

    Please do remember though that you will need help and some respite as this caring is VERY hard both physically and emotionally.

  • thank you - yes, he had his LP done before he was diagnosed with PSP - but I agree, we did see him actually cross stages after LP - first time without general anesthesia, the second time with.. I wish we had known this before



  • Thank you very much Mr Jones - I read all your comments on the other threads too - I wish you and your loved ones all the best

  • thanks Sammy in Pakistan thanks for your reply matey how is your father now is he getting am little bit worse or no change in him

    anyway I wish you well take care if yourself and your dad mate and welcome to the site I do not think any of us like being on here but its a good job that we have it so we can share different views and conversations and if we get angry now and again its a place were you can let your hair down or have a rant and rave and let your vent up feeling go well Sammy ive said enough for one day mate so take care my friend kind regards to your father and tell him to hang in there matey see yer peter jones queensland Australia psp sufferer

  • (sorry for the late response, I've been traveling) - thank you Peter for your comments - it's a great site for talking and discussing things - I asked my mom to read this post as well and she too really liked the atmosphere of compassion and support here

    My father is a bit stable now but losing weight - his communication is pretty weak so it's hard emotionally when I cannot understand what he is trying to say - he is on a PEG tue so his mouth muscles are getting weaker too

    Best wishes for yourself and your family, Peter!



  • Thank you Peter very much for the good advice :) I will pass your greetings to my mum and dad too - best wishes for you and your family as well :))

  • hi Sammy thanks very much for your mail matey don't forget if you just want a chat or a shoulder to lean on mate if things get a bit rough for you to handle there is nearly always someone around that you can talk with so you are not alone with your problem all the best to you and regards to your mum and dad peter jones queensland Australia psp sufferer

  • Hallo, Sammy,

    There is lots of good advice in the replies to your email. The only advice I would give is to say that groaning and grimacing in PSP does not necessarily mean that your father is in pain. However, if you feel that he might be - and you will be able to interpret his behaviour better than anyone - perhaps you could speak to your father's doctor about some background pain relief medication.

    Also, I think muscular cramps and spasms are common with people who are bed-bound, so massaging feet, legs, hands, arms, head and neck might help. Also, your father might find the contact with you comforting, as his means of communicating with you dwindle.

    You are doing a fine job, I can tell from your email.

    Thinking of you and your father and wishing you strength for the coming days and weeks. Make sure you get rest yourself, Sammy, when you can.

    Keep in touch!


  • thank you very much Amanda :) - if he is very agitated, that's usually a sign he wants to pass stool and wants to go to the bathroom - that's usually almost immediately after he takes his PEG feed, so that's a relief that we know this much

    I cannot massage him for long because he doesn't like it, not more than 30 seconds - but his neck is arching back and I am not sure whether putting pillows beneath his neck to fix the arch is good or will it cause pain (I put some soft cushions underneath his head and keep asking him if it hurts, sometimes I remove the extra ones, sometimes I leave them)

    Thanks for the tip for muscle cramps, will keep it it mind

  • My son-in-law told me something tonight that really hit home.

    Why does God put us through these hard times? When we think things are the worst it can get.

    God is preparing us to let go when our loved ones die. So we will not give up on life itself, and be grateful that our loved ones are gone with no more pain.

    We will as caregivers feel our work is done, we did the best that we could. We feel released from our job as a carer. It helps us deal with death.

  • thank you for that :) I learned this from other hardships I faced earlier and it makes sense to me - and it's that God puts us through hard times to see how patient we are and whether we still have faith that God will give us something better afterwards in reward for our patience, maybe something material, maybe a better understanding of ourselves and a higher level of peace and serenity - I have matured a lot in 2 months I think - it's been unbelievably hard but I hope/wish I can stay strong - all the affection and care from the people on this forum helps a lot, really

  • I am overwhelmed by all the amazing responses I have received - thank you so much everyone, specially peterjones - sir, I wish the best for you as i wish for my dad, thank you for writing

    I am traveling (couldn't be avoided.... will be back in a week, meanwhile my mom and a on-the-job-trained care-caregiver is assisting dad and I am on touch by phone and Skype) and will answer back individually in a day or two - thank you very much again everyone, will follow up ASAP

  • Sammy you are a very good daughter, caring for your father, I also agree with what everyone say on this site, it is a horrible illness, you can only take one day at the time. Really amazed by what you are doing. Yvonne xxx.

  • Thank you Yvonneandgeorge - I really appreciate your kind words (I am his son BTW :)

  • Hugs to you....

  • Thank you Pippin2328 - hugs back :)

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