Mum has psp and has refused a tube to help with feeding. Which I totally respect her for. She obviously has puréed food but every mouth full now makes her cough and she hurts her tummy and also as degrading enough, she wets herself.

Any help? It's so hard seeing her struggle to eat. I just want to make it easier for her. She never stops smiling and has never let this evil beat her. Just some help needed if there is any?

Thank you x

10 Replies

  • My mom wore disposable undergarments, we never got to the point of a catheter. Eating became a problem too, she liked, yogurt, pudding, cottage cheese, oatmeal. I had to feed her slowly but she tolerated foods like that very well. I almost forgot, milkshakes we here absolute favorite. It was trial and error for us.

  • The only advice I can give you is just let her be happy its not going to get any easier for her or you just enjoy the smile on her face , I am in the same place you are even though aunt bev has the PEG tub how in the world could I take all that she loves from her , taste of frosting, egg salad, ect I love watching that smile come across her face when i put something to her lips I hate to say it but its true they are going to leave us if there is not a cure found let them leave happy. So that also happy is what you remember them being not sick and sad with this terrible PSP

    lots of love and hugs Kryste

    PS right now aunt bev is munching on a big chocklate cookie and loveing every minitue of it

  • Just shows .We worry but there is always someone worse off.

    Love to your mum .x kathy. X

  • Her swallow is involuntary so you must watch carefully and not offer another spoonful until the last one has gone down. It used to take us perhaps 2 hours to get through a fairly small meal so we needed to reheat. She needs lots of calories, so butter, cream, ice cream etc. are good to mix in.

    If you are in the UK you should already have plugged into the free incontinence pad service. If not, your doc can sort you out.

    I have heard positive PEG stories. It didn't work out well for mum. It could extend her life and improve her quality of life (yours too) if it went well though...

    So glad she is smiling. I doubt she would be if you weren't in her life.

  • Can u try crem caramel that goes Dow well with my husband and ready brek I do add Manila honey and sieved fruit though anything to make things tastier

  • They are excellent in the home they purée and thicken everything for her. I give her chocolate. But just hate seeing her in distress after every mouthful

  • It takes some time to come to terms with accepting what will be will be . Not what I want it to be . Going through this at the moment . I have read a number of articles which explains end of life and oral feeding , it's too late for peg for us .but it's very hard when we suddenly get some good periods .

    They tell us to make the most of those I know .

  • Swallowing of course is the major issue with PSP. And the choices are either go with a PEG to extend life or don't. Since my wife was so young (48) when she was diagnosed, it was an easy decision for us to go with the PEG and it has definitely already extended her life 18 months and counting. But she's had a couple of aspiration events lately, since you can still aspirate on your own saliva. It's just hard to watch someone wither away when that can't take in enough nourishment. Such a difficult disease and so many difficult decisions to make.

    As for the incontinence, definitely need to have her in Depends (pull-ups) or some form of adult diaper. And catheterizing helps a lot too, as you can totally empty their bladder throughout the day. That way they aren't sitting/laying in a soaking wet diaper. Because you never know when they are going to release. It took me a few times to learn how to safely cath my wife, but eventually it became a piece of cake. At first, I tried teaching her how to self-cath herself, but she just couldn't do it. She would sit there for 20 minutes trying to find the right spot and never could. And unfortunately if it goes in the wrong area, it's contaminated and you need to start all over with a clean, sterile cath. A Foley cath is very convenient for those who don't have someone who is willing to cath her (I cath my wife 5-7 times a day). The Foley is inserted into the urethra and the tube is attached to a leg bag, which is strapped to your leg. And at night, you take the leg bag off and attach a night bag, which holds much more urine. It's a little bit more tricky putting these in, but really the same premise as a straight cath. Once it's inserted, you take a syringe that has about 10 cc of water and it is injected into the Foley, which causes a bubble inside to inflate, which is what keeps it inside your bladder and doesn't fall out. You need to change these at least monthly. I changed my wife's every 10-14 days, since I can do this myself. With the Foley bag, anyone can help the patient empty it into the toilet or some other container. My father would sometimes stay with my wife and he could take her to the toilet, roll up her pants leg, and drain the bag, keeping her privacy and dignity in tact. And if the patient isn't that mobile, you can just use the night bag all the time, as it would probably hold 24 hours worth of urine, especially for someone who isn't taking in much fluid.

    Hope some of this helps. Take care and God Bless!


  • I have considered a catheter although I am not incontinent yet .seems like a good idea and probably less hassle than not getting to the toilet

    In time especially in the nursing home where they have to bring bedpans at night

  • I have no words of my own to comfort you except to say that if I ever get in the need of a tube, I too will refuse. I do not want to prolong my life in what I believe is an unnatural way. When it's time for me to go.....tho slow and difficult as PSP presents ittself, ...then I want to go...With that being said , my husband, who also has PSP, was given a PEG tube in December. I respected his wishes and after many months of choking and losing ALOT of weight, A dr., whom we didn't even know, rushed B into his care and within 15 minutes B was on his way to better health. But again even seeing the positive outcome of the PEG, I would not/ will not consent to one for me . So don't be afraid to respect your mothers wishes. spend these next few times with her (who knows how long more she has) in comfort and joy and respect, and may I add, spiritual growth.

    Steph, it's ok; difficult but ok.


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