Another stage for us in PSP

we are approaching a step I wasn't sure if I would be able to handle. It's all about his bathroom dutys, i know it must be harder on him then me.it just becoming another new normal daily routine. Friging PSP.

I can do this, I can do this.

Dee

[abirke]

YOU CAN DO THIS....and you will get through it....You love him and, well, theres really nothing else you can do....you could get help. And I encourage you to do just that. Soemeone to at least show you the art of bathroom/hygiene ....ask his Dr what help is available....wouldn't it be nice to know how to drive the car before they gave you the keys and said, "GO"? same like taking care of specifics like bathroom needs! I don't know how many times I cleaned pee off the floor....smelled like an early elementary bathroom at the end of the day.....or an old bar...I like the first analogy better...

But I forged through...B used the pot for bowels , but getting him on and off it was a chore!

You CAN do this Dee ,

with rubber gloves, a mop, some clorox and confidence.....and a little help from a pro, you can do this....may I add the word "convene". We never used one so others will be better help there

Do Well

AVB

[johns65 in reply to abirke]

I have had a little experience with the conveen condom catheter. It's great if my husband would not tinker and pull it off in the middle of the night. Nice to have on him when we go to the doctor too. I had to show the nursing home aides how to put it on him when he was a resident last month. Now we are in the next phase -his difficulty in swallowing, so no water - no pee. (there's not much urine to deal with). Joyce

[doglington]

I know !!!

I amazed myself with how we cope when it becomes inevitable - even my best friend came to do this [ prepared with her rubber gloves !!! ]

I think the really worst for me was when I had to learn to deal with his dentures ! We had to have a trip to the dentist for instruction - - -

love, Jean xx

[Flemingc in reply to doglington]

Jean, we're living each other's lives! The dentures have been harder for me than the bathroom duties. I'm sure my Mike would say just the reverse.

[Jafarrar in reply to doglington]

Love it, I felt the same way

[Zeberdee]

You can do this and you are right it is worse for him but without you he is totally lost. Again friging PSP. Feel like saying something a lot worse.....but I won't. Jx

[Satt2015]

Yes you can Dee! Somehow it becomes the new norm and we just all have to get on with it, no other choice! Thinking of you x

[Althea-c]

Dear Dee, yes you can, yes you can.

Give yourself a medal 🏅 for love and a cup 🏆 for patience.

Althea

[Brenive]

You can do it ,, I hope I will be able to cope when the time comes, ..xxx.Brenda.

[LuisRodicioRodicio]

We have adapted the bathroom to the needs of the PSP patient. I can send pictures of the bathroom but I do not know how.

[Hidden]

It's like having a kid. A big one.

[Heady]

Yes you can do this. There is no other choice. Well Done!

Lots of love

Anne

[easterncedar]

The things we do for love. You will cope, and amaze yourself. I would go back in a second to be doing it again, even that. Love to you, Dee, and courage! Ec

[Althea-c in reply to easterncedar]

Bless you 💛🙏

[Yvonneandgeorge]

Dee you can do this, because you are doing it for someone you love, actually the dentures are worsefor me also, so happy george has his own teeth. Xxxxx big hug coming your way xxxx

[Julieandrog]

Hi

Yep you have to woman up!!!🤐

I find lavender oil a godsend.

Julie x

[aliciamq in reply to Julieandrog]

💐😆😆😆🌹

[Katiebow]

Amazing how deep you can dig and that things you thought you would never be able to do become the norm. Bathroom dealings no longer bother me too much even when not wearing gloves! My worst fear is things happening if you happen to be out of your home and the embarrassment that may cause. I think this may be why Ben is reluctant to go out but not 100% sure. I always think that I'm sure Ben would do the same for me.

Much love

Kate xxx

[gypsywoman1947]

You'll get there Dee, I find it the worst chore out but I've coped somehow. I hoist onto commode and push commode over the toilet pan with bowl removed. I leave bowl until last minute as we have many accidents !!!! Then I push back to the hoist , lift up , clean up, and lower back into chair.

Bigger problem is he asks for loo every half hour , it's an obsession, even if he has had a bowel movement .....in which case I refuse to take him , he was same with a pee until a catheter was fitted.... the obsession drives us all crazy.!!

You're not alone ... we've all had to find bathroom strength , you'll find it too. Best wishes xxxxGW

[VronB]

Yes you can! I was. I was convinced I couldn't but we adapt. Xx

[Ratcliffe]

Bathroom duty was the one thing that scared me the most with David, and the first couple of times I was quite freaked, but you do get used to it. I had a little space next to the toilet, so I got one of those small three tier trolleys on wheels, and put everything I might need on there - nappy sacks to put the pads in (Aldi ones are the best by a mile!), latex gloves, baby wipes, air freshener etc etc. That way, once I had David on the loo, I could reach around from anywhere and pull it to where I needed it. I recommend that concept if you have room.

The one thing I never got my head round, was when David missed the loo, or didn't get there, and I had to do clean up on the hardfloor, or bathroom floor. I always went off the deep end with him then, I just couldn't not. It was always 20 seconds of rant followed by pulling the shoulders back and then off to get the disinfectant and mop bucket! He knew I would do it, I knew too, we laughed about it afterwards sometimes. It just seemed to be the only way I could cope with that situation.

Social services had kind of banned us using the loo and we were in the process of getting a different transit chair that could lean back, as he was flooping over to his side all the time, this would have had a commode bowl and he could have gone back to using the commode downstairs, like he did whilst we were waiting for the wetroom to be fitted, but it didn't arrive in time.

You WILL cope, it is hard at first, but like everything else with this disease, we make the best we can of it. Keep up the great work you are doing!

[doglington in reply to Ratcliffe]

Agree with that. Chris suffers with diarrhea a lot. I often had to shower him down. Yes, I lost my temper a lot. I'm human and never applied for this job !! I apologised after and always said I'm shouting at PSP - not him.

But we manage. - -

[easterncedar in reply to doglington]

Oh yes, Jean. Thanks for that; as I say below. It is a comfort to know I wasn't the only one...

[easterncedar in reply to Ratcliffe]

Oh, it does make me feel less bad about myself to know other folks lost it, too. Just like you, I would have a rant and then get on with it. What else can you do? I got better later on, when I stopped being surprised by the regular disasters, but it was awful when my guy would freeze halfway to the toilet and then let fly, while I was holding him up with failing arms and balance of my own, and begging him to just sit! I hated to find myself begging while he seemed to ignore me. Not his fault! Or when I had almost got him cleaned and dressed and then had to start all over again. Dear man, he never complained of my behavior - well, maybe once or twice!

I also had a little light set of plastic drawers in each bathroom for supplies. The moistened wipes and the gloves the VA hospice gave me were the most valuable things I had on hand, although I also went through miles of paper towels and oceans of cleansers.

And I would do it all again.

Love, Sarah

[doglington in reply to easterncedar]

Exact description of me and Chris !!!

xxxx

[Ratcliffe in reply to easterncedar]

Oh the constant games of up, down.... up... almost down, almost there, oh up again! when he was trying to sit on the loo. The legs just wouldnt quite bend...

[doglington in reply to Ratcliffe]

Pushing them to bend and he was just rigid !!!

[Jafarrar]

You can do this I didn't think I could but now it is like normal day to day stuff. Your right it is all about the bathroom.