Help

I’m sorry if you get tired of ready my crap, I am just wondering . My husband is getting up at night and going to the bathroom, he has been peeing on the floor in front of the toilet. He then will try and clean it up with his bare hands and toilet paper. I tell him to stop that I will clean it up and he won’t stop. He fell last night while trying to clean it up so he sat on the floor naked. I got him in the shower afterwards and then to bed. I am so tired today. Thanks for listening.

[Hidden]

Never ever do l get too tired of reading crap Penny but only because l hope to share some support and understanding. It is so hard to make ourselves understood by family and friends because they have not walked in our shoes. I do believe venting on this site helps... Sending hugs... Granni B

[Caro2132]

Hi Penny, it’s the pits when you can’t sleep at night. We started out like you , with Mike falling on his way to the bathroom. We progressed to peeing in the bottle, but that meant I still had to get up. Then it was diapers, but they got soaked and the bed got soaked even with bed pads. So we finally resorted to convenes about a year ago, and except for a few mishaps when the condom came off, it’s been clear sailing.

Hope you find a solution that suits you both.

Caroline

[Hidden in reply to Caro2132]

Thanks what do you mean by convenes?

[Caro2132 in reply to Hidden]

It’s a condom catheter, your doctor can prescribe them, but I buy them on Amazon. The brand name is Freedom 😄There’s a Utube video that’s shows on to put them on. PM me if you need more info.

[Hidden in reply to Caro2132]

Thanks I’m going to ask about them.

[Hidden in reply to Hidden]

One of the best things about this site is folks sharing products that work for them... sure hope this works for you & hubby. I had never heard of these either. Sending hugs... Granni B

[Tippyleaf]

Dear Penny

Please do not apologise - many have been or are in the same situation - we are all here to lean on.

The lack of downward gaze is the likely cause of the problem, your husband can simply not see what he is doing. . I used to have Inco pads on the floor in front of the toilet. After a “wee accident’. they can just be scooped up, binned and replaced. When you are exhausted I found this was the approach requiring least effort.

Lots of different types of Incontinence pads - I often used children’s night time bed pads from Boots or Inco pads from Amazon.

Many men can use a urine bottle in bed - my husband struggled with this but well worth a try.

Sending you a big hug and lots of love

Tippy

[Hidden in reply to Tippyleaf]

Thank you I’ll try the pads.

[jamesmoffat]

It's not crap it's just Life

[Hidden in reply to jamesmoffat]

Hi James so good to hear from you. I am wondering if you found an adjustable bed you liked... Hubby did not like the one we bought & is sleeping in his recliner for now. Sending hugs... Granni B

[NannaB]

Oh Penny, it could have been me writing that a few years ago, it brought back many memories. I got my darling husband a bottle but one night I woke up with him using it while it was on the floor in the bedroom and he was standing up aiming for the hole in the top. He was a bad aim and most of it went into the drawer of the bedside cabinet. When we discovered convenes things became easier. Here in the U.K. a health professional measured the width required. It’s like an open ended condom with a tube leading to a bag which during the day was strapped to his leg but at night was attached to a stand fixed to the bed. My husband could then urinate lying down reducing falls and wet floors.

Best wishes.

XxxX

[Hidden in reply to NannaB]

Thank you I’m going to ask about that.

[AnneandChris]

Dear Penny

Please do not apologise, we have all been or are there, and are happy to share our experiences.

Chris used a bottle after having several bathroom falls, but then having fallen badly by the bed we started to used Conveens prescribed by the GP. The knack is getting the right length. Chris was tall so he needed the longer length.

It meant that we both got much better quality sleep and they're so easy to use.

So, please try these and keep on keeping on.

Hugs

Anne

[ConcernedEx]

Don’t ever feel that anyone is tired of hearing from you. You have to vent and this site is full of lovely people who understand the frustrations of this disease.

Sometimes there are no other words to reply except - “we understand how you feel” and yes, “it sucks”.

[Gemmadog]

I empathise so much, my husband is doing the exact same thing and no matter how many times I tell him to leave the cleaning up to me he always forgets and tries to do it himself. I now get up and go to the bathroom with him 3 or 4 times a night. Sometimes though I'm so exhausted I don't hear him get up. Reading the replies of others I think it maybe time to ask my husbands continence nurse about convenes.

[doglington]

Your post brought back so many memories for me.

My lovely husband has died now but I remember almost weeping and saying: This is like living in a men's urinal !"

Like others the answer was convemes - still problems but it did help with the exhaustion. Good luck and keep on ranting. Jean x

[Heady]

What's the saying "Love means you never have to say sorry!" (Showing my age). You are part of a huge loving family on here.

Penny, we could all have written this post, in fact I probably wrote the most during that part of Steve's journey. It is the pits, constantly up and down all night, the bathroom floor being regularly washed at silly o'clock. Like everyone else has said, a bottle by the bed, although that needs to be supervised 100%, as per NannaB reply. We did this, then pads, did try the conveen, by in the end Steve had to be catheterised, which did change our lives, I actually got a bit of sleep and no more wet beds.

I hope you are getting enough help, it's not a pretty picture, a carer with no sleep and having to be up 24/7, doing things. You might think you can cope, but your post says otherwise. Your husband will suffer a lot more if you don't get enough rest, than he will in the hands of another. There is no such thing as a good, tired carer, you are either good or tired!

Also, please remember the tip we all give new Mum's, if the baby is asleep, so should you be, the same goes for a carer.

Sending big hug and much love

Lots of love

Anne

[WifeLilyRose]

I'm reading these posts with real interest. My husband [ PSP ] now has a urinal bottle by his side of the bed and all was going well [ he stood himself up, used it OK and then capped it and climbed back into bed ] but he seems to have taken against using it. He can't verbalise why. He now struggles up and goes to the toilet and then returns to bed. I was really tired and having disturbed sleep every night but I'm now so tired by bedtime that often I don't even hear him get up! I dread what the next phase will be and how soon it will come. He sometimes wets himself in the day, even while at home, and the GP agrees that it could be because of the PSP. She is however investigating further with a urine test for other causes.

I SO need this sight! Every day another symptom takes prominence in my mind. It never stops! Tomorrow I'm due to have a first meeting with a Parkinson + nurse [ It's taken over 5 years to get a diagnosis! ] and I'm really not sure what I should be asking her! Any tips, Folks? xx

[Purp23 in reply to WifeLilyRose]

Hope your meeting went well with the Parkinson’s nurse, just reading your post which is now too late to add any suggestions. The Nurses are very good so anything that you need help with they will be able to advise. We had a lot of help through a speech therapist re the swallowing issue, T also has poor speech, good days and bad days, again speech therapist could maybe help with that. We are also the same getting up in the night, some nights it has been as many as 8 times, my hubby has mobility issues so can’t get back into bed without getting stuck so I have to help him manoeuvre back to a safe and comfortable position in the bed. All part of the journey, stay strong. Px

[WifeLilyRose in reply to Purp23]

The meeting went well, thanks, Purp23. My daughter had sent her an email expressing various concerns we have and that started the conversation. I was a bit shocked to hear that she thinks my husband would benefit from having a PEG [ feeding tube ] fitted fairly soon. She's going to talk to our speech therapist after she has assessed my husband's swallowing in a few weeks. Also she talked about involving the local hospice in supporting us as a family, so I think we're further down the road than I thought. My head is reeling with info. now and I really look forward / need to discuss things with my daughter at the weekend. We talked about his " reckless" behaviour which I find most stressful at the moment. I need to think how I handle this. Any tips, friends? And Purp23, do you find that your husband finds lying straight in bed really hard now? My husband has started kneeling on the mattress to climb back in and his legs each night stick straight out the bed, very stiff. I have a job moving them back in under the covers when it's cold in the middle of the night. We have to be strong, don't we? Lily Rose. X

[roseopsp]

In reading replies to Penny, I see "convenes" mentioned for men. Is there a similar product for women???

Oly

[messier in reply to roseopsp]

Sadly no there is nothing quite so simple and easy for women - the only options are pads or catheters. I have on numerous occasions felt incredibly jealous of those who are caring for a male because the urine issues are way simpler to deal with for males! And then I feel bad for being jealous. For mum (CBD) first we had not being able to get to the toilet in time because walking was difficult, and then undressing with one hand was difficult because the other was needed to hold onto something due to zero balance. Then when it got to needing help to the toilet 10times a night and we had to stay over, she moved to a nursing home. Then she got to the stage where the carers wouldn't come fast enough when she called at 30min intervals and they thought she had some psychological problem until I had firm words. So then they resorted to a bed pan at night but they will didn't come fast enough in response to her bell. So I eventually persuaded her to try a catheter. Now she has a catheter with a tap during the day that they have to empty every couple of hours, and a bag at night. But she has to have a pad too in case they don't empty her bladder enough during the day.

[Hidden]

I have no idea how many gallons of bleach I went through the last two years of Larry’s life mopping up pee to keep the house from smelling like a urinal.

I had 6 plastic unrinals hanging on his bed for him to use in the night.

[Nanny857]

Penny never ever feel the need to apologise as many of us have been there or are going through exactly the same scenarios. This forum is the best place to vent feelings, good or bad because you know no one will judge you as we have felt the same and done it ourselves.

My husband refused to wear pads or use a bottle, he insisted getting up to go to the bathroom and yes I was the cleaning the floor with bleach in the wee small hours of the morning and other times. As the PSP progressed and he couldn't walk on his own, I convinced him it was safer to sit down on the toilet to pee. I still had to get up with him but no cleaning up required.

In the latter stages I got him to wear Tena pants for men as these looked just like mens underpants which were great when he couldn't make it to the bathroom on time. Unfortunately our Continence Nurse wasn't forthcoming when I asked for convenes.

Hope you get something sorted so you can both get some sleep. Also take Heady's advice, when your husband is asleep, you try and get some too.

Lots of love, Nanny857xx

[Jkhakh2]

Been there, done that! Think of it as just another step in this journey through the disease we've all got to know, unfortunately. Stay possitive as best you can. Hugs!

[Baytalon]

Penny, this page was my life line. Don't ever feel like you a bother of that people will get tired of you. I used the condom catheter's for a while, but Steve eventually would pull them off. I bought Because disposable underwear which are a bit more "stylish" than Depends type, and he would wear those which combined with a pad kept the bed dry. The getting up at night didn't end until he no longer could.

[Sunsetboulevard]

My husband was doing everything you mention until the day came when he agreed to wearing a convene . We get all the sheaths and bags( day and night ones) from our continence team ... they are excellent .

[redyi]

Hi Penny I have this every day something is wet floor toilet dressing gown or bed. We are waiting for help from the incontinence team. The specialist thinks it is because of relaxed muscles. I go through one toilet roll a day. Hope you get some help we definitely need it. Xx