advise please

[pzagy]

Hi All

We are going through yet another stage, well, not really another stage but the same one with more vengence. My mother in law is now asking to go to the bathroom every hour on the hour when she is up (thankfully she sleeps about 8 hours a night now, thank you Trazadone). It is becoming very hard for her carer, nursing staff and PSW's when she is alone (which is about 2 hours throughout the day)

When she is taken to the bathroom she does nothing 10 out of 15 times a day, I think she is afraid to go in her pullup. She says that when she is on the toilet she can't go but feels the need to.

Anyone else experiencing or has experienced this???

[abirke]

pzagy, my husband was going throught the same thing! up and down for 60 mls at best. He said he couldn't remember how to go.....so I got him to a urologist who said it's true. the brain when with a neurological disorder will not know how to read the signals. He showed me all the areas on the spine are affected when a patient has this or that disorder.....also when lying down there is added pressure on the bladder or urethra that makes them want to go even more , but still cannot .....Now with that being said I also just found out that a minimum of 30 mls an hour is needed to keep the kidneys functioning properly and thus the bladder which can hold a whole lot more...but still needs to be emptied!

to make this long story .......well we got B a catheter . And though it's not as comfortable as not having one it out weighs the discomfort of not having one. I know that she is probably up in years but this may be something you want to discuss with her and her dr.

Goodluck,

AVB

[pzagy in reply to abirke]

Hi abirke

that makes complete sense, when she had a bowel movement the other day she kept wanting to come off the toilet and was really scared....she also told me she will never go in her pull up she has too much pride...thanks for sharing

[easterncedar]

Yes, we have experienced something like this. I think it will pass. Nothing about this situation is permanent. You say it is "becoming hard" for the staff, but the situation is very new all around. Relax, everyone!

[pzagy in reply to easterncedar]

hi easterncedar, I should re-phrase the 'becoming har' for the staff. When she has the urge to go she becomes anxious and cannot speak properly and gets really agitated, the staff cant understand her. Thats is what becomes hard...I get it hat she is agitated and I get why....i hate CBD

[Heady]

I agree with the other posts, start talking about catethers. It does solve these problems.

Lots of love

Heady

[gypsywoman1947]

Interesting post for me to read as I have same with my husband , 12 times a day I've been logging it. Tomorrow the incontinenance nurse is coming , we have asked for catheter, she says no. My daughter is coming tomorrow to sort her out !!! Ha ha. It's wearing me out , he has no mobility and the hoisting etc is just too much to do that many times. I know there is a risk of infection but it seems to me to be more beneficial than having the carer laid up. I have osteoporosis and the heaving about is definitely bringing pain to my legs and back. Tonight we've had bowel accident , this provoked torrents of helpless laughter from my husband, I'm almost over the edge of sanity. I'll post the nurse visit outcome. My daughter is a manager in a care home so I am hoping she can put a good case over .Best wishes xx

[Heady in reply to gypsywoman1947]

I so want to say, give us the time and place and WE will all be there to fight your corner. How dare they say a man that needs hoisting doesnt need a Catether!!! Tell this nurse if she/he won't fit one, then they can come and change the pads, 'cause you are not going to any longer! S had had one since March. They change your life, no longer am I dashing to the toilet, only to be beaten at the last minute and have to change all his clothes and wash the floor. Of course there is the risk of infection, but I can't believe it's worse than wearing a pad, or constantly wetting yourself.

We all live on that lovely edge of insanity, please don't let them tip you over, on something this simple, to make your husbands life a bit better.

Lots of love

Heady

[gypsywoman1947 in reply to Heady]

My thoughts exactly , the hoisting and shoving and pushing is killing me, if I only had to do it twice a day it would be OK .I have logged every toilet visit for over 2 weeks, sometimes there is only 40 mins in between and he always wees. He won't wee in pads and why should he.A convene is used at Nogales , I've also logged urine output in the bag, it varies from 5 mls to 2000 mls. She says use convene in day, we tried , for some reason it won't stay on. She is bringing a scanner to scan his bladder , don't know what that will achieve I'm sure !! Thanks for reply , watch this space. Xx

[Heady in reply to gypsywoman1947]

The scanner is to measure what is left in his bladder, after a wee. I suspect, he will have a fair bit left in there, which could lead to infection and the reason he needs to go, so often. S was just the same, couldn't have a convene and wouldn't use the pad.

Lots of love

Heady

[gypsywoman1947 in reply to Heady]

Well the incontinenance nurse has visited and when presented with the log of loo visits and my daughters input on my health needs , has conceded to a a catheter being used. Oh Hallelujia , I can't wait for the difference I hope it makes to our lives. Thank you all for words of encouragement.x

[pzagy in reply to gypsywoman1947]

every once in a while good news is needed....hurray!!!

[Heady in reply to gypsywoman1947]

I am really pleased for you.

Lots of love

Heady

[pzagy in reply to gypsywoman1947]

hopefully this will pass too...can we all say it together I HATE PSP/CBD!!!!!1

[pzagy in reply to Heady]

I think a catheter is more dignified. Having an adult use a pad is humilitating to say the least.

There are many people living on the edge of insanity, as the saying goes there is a fine line between sanity and insanity and these bloody diseases are pushing everyone to the edge

much love and keep strong

[cabbagecottage in reply to Heady]

Is this the sheath and bags , they are good . I use to use two bags at night . Leave th tap open so that the pee went straight into a bowl which I lay the last bag in . No probs

[pzagy in reply to gypsywoman1947]

it seems one day good 3 bad..I hear you. The other day my mother in law thought she finished her bowel movement, when I helped her up, she finished it on the floor. She was so embarassed.

You are right, having you laid up would not be a good thing, there are catheters that are like condoms, my cousin who is a quadroplegic has been using that for years without infection...look into it

hope today is better

[easterncedar in reply to pzagy]

So familiar! Tonight I was playing poop catcher, as often happens. He starts to go while standing, as I'm preparing to change his clothes. I go for the gloves, tissue, wipes and washcloths, and practice tossing used materials into the pan. He tolerates this pretty well for a proud man, and I'm no longer quite so horrified. The things a person can get used to!

[abirke in reply to gypsywoman1947]

I so agree with Heady, do not let this or any nurse tell you no to a very specific and obvious need.

I*m in your corner,

avb

[pzagy in reply to gypsywoman1947]

Incredible, is the nurse was the one lifting him hourly you better believe he would have a catheter. The nerve of some poeple..Hope your daughter can straighten her out and teach her a thing or two about compassion

[PSPwife]

Did they rule out a UTI?

[pzagy in reply to PSPwife]

yup, they check for them weekly

[Noella21]

Oh yes ! it comes and goes. hugs and strength.

[allotmentartist]

M is the same at the moment only up about three times in the night but constantly going to the toilet through the day , he was like it when first diagnosed a couple of months ago ,he got put on siminet and the symptoms eased for a bit ,but it was short lived they are back he had a bladder scan and was emptying his bladder OK keeping there x

[pzagy in reply to allotmentartist]

Hi allotmentarist

thank goodness she is now sleeping the night, well most of it. The nurses tell me she gets up at 6 she says 4. Her watch is very small and when I ask her she cannot read it. I think its the dark mornings that confuse her I believe she sleeps the full night myself.

I will have the doctor look into siminet

thanks