Log in
PSP Association
5,800 members7,901 posts

End of my tether

Apologies in advance, I am about to have a rant and let off steam.

P has had a bad fortnight (worse even than usual) constipation with no bowel movement for 9 days. Cue GP, continence nurse, district nurses emergency doctors etc etc. They expect me to give suppositories, even though I`ve never done it before - surprise, surprise ! GP is very casual ("he`ll go soon enough") while I have to deal with an even more confused P than usual, and that is bad enough. All the medicine did work eventually but only after the `urgent ` prescription given on Monday was finally delivered to us on Thursday morning, by which time I`d had my daughter-in-law buy the equivalent over the counter for £12.

Last night we were up by 12.30 a.m for P to pee - and he did , all over the bedroom carpet, me, himself etc. Up another 3 times until 6 a.m when he had another loose bowel movement.

Tonight I expected him to watch the Champions League Final on TV but no, he kept wanting to pee, so 4 times in 30 minutes I got him up out of his chair and stood with the bottle waiting ... and waiting.. and waiting.

Due to all this he has not been to his daycare all week and it has been very tough for us both.

I feel something has to give soon and tonight I think it will be me !

Apologies again everyone but I know you will all understand.

14 Replies

Yes we do understand and know how we felt when the same things happened to us, those who have already gone through it that is. You've reminded me of the many times a night I tried to hold C upright while he tried to pee! How I took the carpet up in the bedroom and replaced with a rug on floorboards because it was constantly getting wet and the endless sleepless nights.

The peeing and waiting and peeing and waiting was caused by an enlarged prostate, nothing to do with PSP and C is now on medication to help. My brother who doesn't have PSP had the same problems and is on the same medication.

C also wears a convene and bag now so no more getting up in the night for that reason although other medical problems still cause sleepless nights.

Some time ago someone on this site recommended telling the GP about the peeing problem. I did and eventually after tests the prostate problems were diagnosed.

I hope you have a better day tomorrow but we know these bleak days happen but hopefully we will cope.

Best wishes

Nanna B


Oh dear my heart feels for you, I hope all goes well, sometimes doctor are to matter of fact, when you don't get your sleep, you feel like you are walking on air, this horrible PSP I the most horrible illness.

George sometimes during the day does not pass urine that much but at night he is up about 5-6 times a night.

Hopefully P will be ok and will be able to go to his daycare centre next week to give you a break. Sending a big hug Yvonne xxxxxxx


Thanks Yvonne, I really need that hug tonight !



So sorry you've been having such a tough time. I hope the b & b settle down soon (bladder and bowels). It's sad how much time we all seem to devote to those two isn't it! V


Never thought I`d be posting online about such subjects !! Thanks for taking the time to reply, it helps.


oh if he wasn't crashing through the toilet , he was peeing all around it! It smelled like an elementary school boys bathroom at the end of the day! I would scrub every day twice a day boxes of baking soda and other deodorants nothing really helped,,,,I think its under the linoleum.....yuck. And like someone said their mate, B would urinate maybe twice in the day and 6 times at night. Now with this new drug that helps his bladder he can urinate completely and we are down to 2 maybe there a night....but we are not standing there for 20 minutes for half a pee. The drug he takes now is Tamsulosin .4 mg. B seems to respond to it....But please know that you are not alone.....Vent as much as you want ....remember life is full of s-h-i-t...sometimes....



I know what you mean, even sitting P down on the toilet, he still manages to pee under the seat and all over the floor, his clothes, shoes - the lot. My bathroom has never been cleaned so often !

Thanks for taking the trouble and time to reply.


No trouble....I'm just waiting for the next incident with baking soda and paper towels....hahahah


Oh dear we all seem to be having a shit time at the moment (excuse the pun) i thought i was the only one to be worried about constipation but it seems as if it is a common worry.

we had a week of dry days and soaking nights but usual bowels Brian was given a muscle relaxant and hey presto wet day and night but no bowel movement so now he is bunged up. I have worried myself sick with it all.

i wonder what the next thing will be. Janexx


It seems that solving one problem causes or exacerbates another. We can't seem to win either way, can we ? Thanks for the reply.


i take solefenacin at night and it does mean that i get thro the night with 1 oe 2 visits to the bathroom ( for a wee_) if i am relaxed (but more fi i am somewhere strange and then at about 6./ 7 am i start needing the bathroom for a shit: these are bones of contention with my partner as the smell is terrible and i have almost lost all of my sense of smell and taste anyway so it doesn't bother me so much and apart fm the smells i make around the apartment at least they are contained in the bathroom at the moment - i dread it when i do become incontinent and the latest change has been rapid for me so when that happens i guess i shall have to think bout moving into a home

lol JILL


NOT A V PLEAsant subject to BE WRITING ABOUT b4 eating!


Oh bless you Jill, you are so candid about what must be a difficult topic to discuss. I occasionally use a catheter with my mum before bed and this empties the bladder so she's less restless at night. The Bowels are an ongoing issue though and trying to get the balance of movicol correct is always interesting! Mum also has dulcolax tablets at night and occasionally I assist with suppositories. I'm impressed with your typing Jill, is your eyesight not affected too badly? Mum cannot look down or focus on the screen and unfortunately has lost the use of her right hand (no one seems to know if it's PSP or not that caused it though)

Big hugs to you Jill, your strength is awe inspiring xx


Thanks for this posting I thought it was only Margaret who went hourly every night for pee and had constipation. Had same expectations a couple of months ago from GP and DN for me to insert suppositories and then clear up the mess. Now at least with the PEG I can ensure super size laxative doses when bowels start to clog so can reduce discomfort and confusion for Margaret, dietician and DN initially not happy as it means often over their suggested 500 ml fluid limit but as Margaret seems ok with larger liquid in take they have let me continue. The problem with the bigger liquid intake is more trips to loo but easier to cope with than constipation but very exhausting overnight. Thanks for sharing the problem it is something I find very difficult to discuss with the nurses ( must be a man thing).


It's amazing the topics we have come to discuss, isn't ? things we would never have talked about become the norm. My inhibitions about 'men things' have long gone and I talk to quite young women (well they are young to me) about my husband's problems.

I would never have thought I could do most of the things I have to do these days, but then I'm sure we are all the same on this site.

It is good to know that we all share similar problems.


You may also like...