A real shitty day, literally.: When I got up... - PSP Association

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A real shitty day, literally.

49 Replies

When I got up today I was planning on cleaning Larry’s bathroom. At 6:30 he announced he wanted to get cleaned up. He had been sitting in his chair since 11 last night. (This is his new thing to get up around 11 for the day.)

I figured he had wet his robe and chair and he had. The robe was his other heavy ankle length terry cloth version. His white one I had by the washer for over a week waiting for him to get his blue dirty to wash them together to balance the washer. That was one load.

He also wet his bed last night managing to get the summer comforter went as well. The comforter has to be washed separately to balance the machine. Load number two.

Was going to save the sheets until tomorrow when I would probably have more.

Asked him if he had to pee or sit on the toilet when we walked into the bathroom. His answer, no. Got him washed. Out to stand at the sink while he brushed his teeth. I also wash his butt when he stands there. Today I got a little shit on it while washing it. Thought he should sit on the toilet but he had said he didn’t have to. Figured he would later. After he did his teeth he said he had to sit down. As I went to move him he started to pee. Grabbed a unrinal and put him in it. Then he farted which was also a burst of diarrhea. Onto the towel below him on the floor. He managed to get some on the top of my right shoe and on his left foot. Maneuvered him over to the toilet to sit while I cleaned up that mess.

Got him backup. Over to the sink to wipe and wash him again. Now I had three loads of wash I hadn’t planned on doing to do. It’s only 7:25AM. Sigh.

49 Replies
honjen43 profile image
honjen43

Oh dear! What a shitty day! Hope the sun shines to dry the washing.

Coffee and early wine'o'clock later.

Hope your day gets better - or at least no worse!

Hugs

Jen xxx

in reply tohonjen43

It’s the three loads of wash that is getting to me.

Tillie281 profile image
Tillie281

Yes! Looks very familiar.🤣

Dearest Jeff...

Sometimes it is best for Our Shitty Days to be shared with others...

1. Others can be happy it's not there Shitty Day (even though most have had them).

2. Venting is healthy. (IF WE DON'T VENT OUR HEADS SPIN AROUND & VILE VOMIT ERUPTS).

3. We all know Shitty Days are just a part of life. UGH!

The other day l had cat shit fall on top of my head... never thought that could happen but it did. UGH!

SENDING YOU & LARRY HUGS... Granni B

in reply to

Raining cat shit. Thanks for the laugh.

Mikey12345 profile image
Mikey12345

So sad. This disease takes one's dignity, doesn't it? Also very challenging for us. It's so difficult to stay kind and calm as we see our chores mounting up. I know the frustration.

Hugs,

Liz

in reply toMikey12345

Diazepam and exercise are helping with the staying calm part. Most of the time.

Yvonneandgeorge profile image
Yvonneandgeorge

Oh Jeff sorry you are having such a shitty day, don’t miss any of that. Big hugs Yvonne xxxx

dollydott profile image
dollydott

Thank you for sharing your shitty day with us all Jeff it won't get the washing done but it will have hopefully helped you release the stress.

That's what we are here for.😊

I reckon by now at least one load is washed maybe two so hopefully your day is getting better 🌞🌞🌞

Sending hugs to you and Larry

Lynda 🙂

in reply todollydott

The third load is in. Hopefully that will be that for today.

dollydott profile image
dollydott in reply to

Oh I do hope so Jeff 😊

Brenive profile image
Brenive

I don't know why I'm laughing, when I've still got all this to look forward too. It might be a good idea to get another washing machine, one for you and one for the really dirty things....best of luck, ,Brenda xxx

in reply toBrenive

You have to see the absurdity of it all to survive.

NannaB profile image
NannaB

😢 ❤️ XxxX

Tippyleaf profile image
Tippyleaf

Oh Jeff I feel your pain. Literally a shitty day -ouch.🙁 Hope today will improve -not that it could get much wetter!!!! We used absorbent seat pads on every chair/bed they absorbed up to a litre of fluid in addition to the pads . It helped a little with the washing.

Sending you a big hug and lots of love Tippy

doglington profile image
doglington

Oh I remember it so well. Chris had diarrhoea almost constantly and would hold the quilt and pee in it !

Drove me mad. I don't miss those three loads of washing days !!

Needed the wine !

At least you know we all really understand.

Big hug for you from Jean xx

Javan profile image
Javan

Do not worry all things pass one way or another and come up smelling of roses.

Marie_14 profile image
Marie_14

Jeff

I remember those days! I felt I was running a laundry. Not so bad when the sun is shining but a nightmare when it rains!

Chin up as they say in the UK. Haven't a clue what that means really! Lol

Take care of yourself.

Marie x x

aliciamq profile image
aliciamq

Yep!! As someone down there said - Granni B - Sometimes it's best for our Shitty Days to be shared with others! Poo poop a doop! Thx 🍻To the less shitty days!

journeyofjoy profile image
journeyofjoy

Oh, I'm so sorry. Have had many of these days around here. If anyone had told me a year ago that we would be having these types of adventures, I'd have said "Oh, I could never deal with that!" But, I do deal with it and somehow we keep going. My husband now has an indwelling catheter which is immensely better than urine accidents and all that clean up. He has depends, a waterproof pad on his chair and two on the bed, one on top of the fitted sheet and one under. It saves me a lot of time, energy and stress to use all these things making clean up a lot easier. So much easier to wash a pad than sheets. That being said, he hasn't slept in our bed for a couple of weeks now because he wakes up in the night in pain and has to transfer to the recliner. Now he starts out in the recliner so we can both sleep through the night. Another loss...

Had to laugh,sorry. Been there done that.Hang in,I would like to say things will get better but I know it won't.You are doing the best you can.

Dee

Inparadise profile image
Inparadise

Is diarrhea common with PSP?

Kerry

in reply toInparadise

This was due to stool softeners, laxatives and a high fiber diet we eat. Constipation is the problem with PSP. That can lead to a bowel blockage which could become sepsis. Better diarrhea. I did skip the stool softener and laxative yesterday. May again today then start the whole thing over again.

doglington profile image
doglington in reply toInparadise

It was for Chris. Constipation causes more problems I think. Keep your sense of humour and you will find out your true friends !

X

Jdjdjd profile image
Jdjdjd

I invested in some kylie pads, which are waterproof and washable, they ate quite small and sit on top of the normal sheets, usually quilted, you can get them from continence websites, they are easy to wash and dry quickly, we also got my husband on the nhs some Alex system briefs, they are cotton, and have a pouch in for him to insert the holder, and then you screw a bag on, very effective our continence nurse sen a rep round to explain it all, but the website is informative, I think we were allowed 4 pairs per year, plus all the requisites monthly, much less invasive than a convene, talk to your gp for a referral to the nurses

Good luck with it all

Jdjdjd27

Tillie281 profile image
Tillie281 in reply toJdjdjd

Looks lik you know what you are doing.

Can you give me the website??

Thanks

T

Jdjdjd profile image
Jdjdjd in reply toTillie281

Hi Tillie,

Been here over 11 years, so have had to learn a lot, 😩

If you look at imedicare.co.uk they show the Afex system very clearly, but obviously it is expensive at around £75 per pack, so as they are available to nhs patients, you will need a referral to the continence nurse, who will make up the prescription, my husband had it for around 5 years, but then he started to retract, and it only works when you are properly fitted, you will see what I mean when you see the pictures, they give you an initial sterilising unit, but I used Milton baby fluid , hopefully you will find this helpful, I know it is hard to accept this change, but it is one of the first signs of CBD and PSP, so quite common

Best of luck

Janet

Tillie281 profile image
Tillie281 in reply toJdjdjd

Tillie, my wife, is the one with PSP

So I need info for women.

Rowan8831 profile image
Rowan8831

Oh my goodness. Been there and done that many times. My heart goes out to you both. This stage will pass but it is hell while it is happening. Myhusband spray painted most of house with diarrhoea at one time or another. Had to have it recarpeted and repainted once he was confined to bed! Apparently it is called overflow and typical of the illness. Lots of washing machine cleanser required, convenes are good and plenty of wine and exercise for you. Glad you can retain your sense of humour and thanks for posting XXx

AJK2001 profile image
AJK2001

Oh Jeff, feel for you, I've had days when I've used Mum's washer, our washer and the Laundrette just to try and keep on top of it all. I also have a large bucket kept in our garage for "prewash treatments" the results of which can end up on the garden as a bit of extra fertiliser !!!

One of our more memorable ones was Mum had her hair permed, which involves having various lotions put on & rinsed off. Mum has a lovely lady who comes and does it (she's in her 70s) and I help out, as the only way to rinse the lotions off is for Mum to have a shower as she can't lean back enough. On the last occasion everything had gone smoothly and I was drying Mum off, when she decided she needed the loo, mid manoeuvre the flood gates opened and there was Mum & I paddling in wee. Mum found this very funny, I found it very slippery and got stuck, I could hold Mum up but couldn't move her, luckily the hairdresser heard the commotion and saved the day, helping me get Mum onto the toilet. The hairdresser was fabulous completely unfazed by the whole affair, didn't bat an eyelid and even offered to clear up - she is one of those worth her weight in gold people.

Spiralsparkle profile image
Spiralsparkle

Oh your post did make me laugh. I remember episodes like you describe.

The crazy world of caring and these illnesses. Feels like all or nothing on outputs!

Thanks for sharing and hope it helped relieve some of your stress.

X

lindaD_ profile image
lindaD_

remember it well,wears you down doest it .thenmy daughter would say to me mum he cant help it . looking back he would of hated to be like that bless him xxx

in reply tolindaD_

He does hate it. It’s mortifying for him. Good thing I am almost impervious to it. Some days it wins.

lindaD_ profile image
lindaD_

yes i know,one day i shouted that i cauldnt do it anymore. i regret that so very much. its so lonely without him xx

in reply tolindaD_

I do scream at times. More than I use to. I’ve been to burnt out and back many times in the last few years. This site helps keep me sane.

lindaD_ profile image
lindaD_

yes try if you can to make some good memories .and look after your self xx

Cuttercat profile image
Cuttercat

I so remember. And memories make it even harder. The water bill is much lower now. But I’d give anything for the opposite.

I admire you for what you’re doing bi didn’t manage as well as you do.

Cuttercat

in reply toCuttercat

Lucky for me my old washer died in January of 2016. I bought a new one that said it was high efficiency. I thought it would save electricity. Turns out it saves water. When it was delivered I looked at the control panel and thought what the hell did I buy. I was looking for a top loader with an agitator in the center. Front loaders and my back don’t agree. Turned out this thing wets the load then decides how much water to use rather then just filling. Everything gets really wet but not under water. There is a dial for how dirty the load is which actually works. I tell it the dirt is heavy then it washes longer.

Cuttercat profile image
Cuttercat in reply to

I have one of those too and I don't like it. I always opt for the higher water because the clothes don't come out clean enough. I've checked. Old is better, but so am I, so perhaps not. Ha Ha.

Dogmom3 profile image
Dogmom3

So sorry yep dealing with that part...gotta go poop,hubby says no,few minutes later hey check my depend I think I pooped,no poop wanna sit on the pot for awhile? Hubby nope....later....poop in his pants, this is probably the only part of this disease that irks the shit outta me!💩

in reply toDogmom3

The two of them must be clones.

Marilyn_cbd12 profile image
Marilyn_cbd12

So very sorry for you, and Larry. Cruelest part of all of this is the loss of dignity. With care, concern and prayers for both of you,

Marilyn

Sfen profile image
Sfen in reply toMarilyn_cbd12

Hubby has explosive poop episodes but only when we have eaten out. Other symptoms not too bad. Very slow and balance a problem but still on cane. Housebound now because last poop problem at his loved volunteer job. Never know when it will happen again. So sad.

raincitygirl profile image
raincitygirl

OMG Jeff, I should be crying for you but you make us laugh! We've all had too much sh_t in (and on..!) our lives due to bloody psp/cbd.

Some day, when you don't have to do this anymore (😔) you can say "I do. not. have. to take crap from anyone. ever again"!!

❤️. Anne G

in reply toraincitygirl

I’ve told people my reward for doing this for years is he dies. Not much of a prize. It’s hard to do but when it’s over there’s a big hole in my life. I have been through a major loss of a loved one in the past. I know how it feels. Doing it once was enough. it hurts a lot for a long time.

raincitygirl profile image
raincitygirl in reply to

Yep. If "they" are ever looking for the ultimate character-builder, look no further. You're damned if you hope for life to continue and damned if you hope it doesn't!

Big Hugs ❤️❤️AG

doglington profile image
doglington in reply to

So true .

Who would believe that one can miss shitty days !!!

X

Tttp profile image
Tttp

Sorry for your Shiite day, but unfortunately it will continue, it gets stressful at times not only for us but for them to, something they cannot help, hang in there.

Jdjdjd profile image
Jdjdjd

Sorry my mistake, I do think it’s more of a problem for ladies, good luck with the search, maybe the continence nurse will have some ideas

Janet

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