Last stage?

Hi. Mums had PSP for about 6 years or maybe more.

We all moved in together so I could help dad care for her last year.

She was, as expected gradually deteriorating at a slow steady pace, but then last week she began to almost withdraw, not even trying to speak (her speech was really bad, but she could still say "yes"). She also stopped reaching for the commode, and just began to wet herself without even trying to alert me that she needed the commode.

Since then she has been completely non verbal - not even making one noise, has been wearing pads 24/7 

The doctor says she has crackles on her chest and has given one a day antibiotic liquid which she's been on for 3 days now, but would a chest infection explain the non verbal bit??.

She also used to feed herself up to a week ago, but now just looks at the plate of food and has to be fed.

It's like she suddenly forgot how to do everything.

Could she have had a stroke?

the hospice have been out and said she looks quite poorly, but just to monitor her.

Also, her chin is on her chest, and it's really hard to get liquids down.

Her head wasn't like that before, she always laid it back in the reclining chair but now it's bent forward.

I wonder if this is the beginning of the end.

Sorry for the long post 

Lindsey Xxx

10 Replies

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  • That's not a long post, no need to apologise.  My husband has had all those symptoms  for well over a year, they are just part of PSP.  He hasn't so far, however, had a chest infection which can pull folk down and if the antibiotics don't work, can bring the end nearer. C has a PEG so now he has stopped eating much, I feed through there.  I've been feeding him liquidised food since 2014. If there isn't an alternative way to feed once those living with PSP lose interest in food, that will obviously hasten the end.

    What I am really saying is, who knows when the end will be. Several times I have thought C was in what some call the end stage. If he is, the end stage is a very long one.

    PSP seems to plateau and then dive.  I just get used to doing things for C when he will suddenly dive and we have to get used to something new.  It sounds as if your mum has dived, possibly due to the infection. I hope she is as comfortable as possible for however long she has left with you.

    X

  • a lovely  reply beg

    lol jill

    xxxx

  • Sounds like the PSP is just progressing more and the chest infection won't help her appetite either. It is so hard to tell with PSP. My mum isn't quite as far on as yours but I agree that the disease appears to plateau and the nose dive. In our case when my mum fell and broke her wrist, she seemed to get much worse. Perhaps it is time for a PEG to feed your mum. Pneumonia is one of the ways that can carry them off. It is just so hard toknowwhen and exactly how x

  • I have to say that if Brian gets any sort of infection or is constipated it always makes his symptoms worse. Last infection he had i thought this is it but once the antibiotics kicked in there was an improvement not 100% back to normal but at least 90% back. Janexx  

  • When you are sick, do you want to talk, or eat ?  I don't.  However you and I don't have PSP and for us it'll most likely get better.  For your Mum and others, most likely it will slip deeper into the crevices of PSP. Remember it is progressive and anything that may push that progression harder (illness) than the norm of the disease, will be shocking.....

    I am sorry you must be a part of this slip.  and when our loved ones were diagnosed; wasn't that the beginning of the end?...Or is it an opportunity to see what we already know, that this world is only for a moment.....

    Doesn't help much... just some words. Please remember that you are not alone in that rollercoaster ride that is PSP.

    AVB

  • Hi, like Nanna B's husband my mother has had similar symptoms for a couple of years and like many my mother plateaus then dips and so on.  A couple of times she has rallied after a dip and I have also wondered if she has had an infection or mini stroke, in particular she withdrew a year or so ago, a bit like your mother and stopped talking and she was not really eating.  We all thought she had given up but after a couple of weeks she started talking again.  I think roller coarse is a very apt description and you just don't know with PSP.  I Hope this is just a blip.  Take care.   Coyle51

  • Can you get a nebuliser? Add a lil baking soda to the water and it will help clear/clean the lungs out. 

  • I would say it is important to make sure she has liquid. I give my mom her liquids by spoon.  If she doesnt get enough to drink, she wont eat or talk or smile.

  • My wife is in those final times too. May be days, weeks, or months. God only knows.  Very little speaking. Anything by mouth will cause her to choke (thank heavens for the PEG).  Never smiles. Holds her head down to her chest when I don't have her laying back some.  

    I HATE PSP!!! 

    I want my wife back and our old life back.  My heart aches for everyone on this site.  

    God ... please send a cure to this dreadful disease.  

    Ketchupman 

  • K, your post broke my heart. You are echoing what we are all feeling. There is really nothing I can say to make any of it any better. I am sorry for you, me, all of us.

    Stay strong,

    JGC

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