Another Stage.

[PUTLAND]

Tonight for the first time my husband has wet the bed. As my husband has always been in denial I have found it very hard to discuss different stages with him. I would welcome advise if this is the start of incontinent and should I expect this from now on, or could it be a once off. Its midnight and I have been at the eye consultant today with him, feeling very sorry for myself as I have a dose of the flu and must carry on. Sorry this is so confusing but I feel very upset at the moment, because I know he will get up in the morning as if nothing happened and refuse to discuss the situation. Any advice please.

[Patriciapmr]

Hi,

I'm afraid this is another cruel symptom of PSP, my husband regularly wets the bed these days but is still in denial of having the disease and is always wanting to sue the doctors.

I've resolved the problem by using incontinence pads between the sheet and the mattress, it does mean having to wash his bedding regularly but at the moment I can cope with that and he is not aware that they are there. Unfortunately PSP sufferers seem to develope problems with all toilet concerns, from not getting to the toilet on time, missing the toilet altogether or wetting the bed! I tried using a full mattress protector but he noticed straight away and complained that it made him hot and wanted to know what was offending me!

Sadly they don't realise what's happening, either that or they're embarrassed, it's a case of finding out what works best for both of you. I think ultimately it's a case of referral to an incontinence nurse, but I am reluctant to go there yet for fear of upsetting him!

I hope you manage to work something out that's best for you both....

Love and hugs....Pat xx

[PUTLAND in reply to Patriciapmr]

Thanks Pat for your reply and advice. I will see if in the morning he talks about it but I know this will be a terrible embarrassment to him. I will also go and see an incontinence nurse. I have to face the fact that this is another stage. It is so comforting to be able to share with people that understand. Thank you Pat and Love and hugs to you xxxx

[Hidden]

I agree with all Pat said. My husband started out with the Depends Guards, which really did next to nothing because they don't stay put. He now wears Depends Underwear and they help immensely. Except for the times he refuses to wear them and says he doesn't need them. I bought a raised toilet seat, 6 inches, which really helps with the bowel movement clean up. He still misses with the urine no matter what. I am now great friends with my Swifter Wetjet.

The best advice is to try to keep your sense of humor. Mine seems rather illusive these days but I still try.

And the people on this site are all wonderful. So many of them are further along in this dreadful journey and they are a fount of information and support. Thank you everyone!

[PUTLAND in reply to Hidden]

Yes all the information and advice I am getting is great and the support from people is amazing. What would we do without this site. Talk care xx

[abirke in reply to Hidden]

Kudos to you, Depends and swiffer! I feel like the bathroom is the demon room. But when I think about it it's the one gettin' peed on!

B hasn't become incontinent yet.....but like every stage of PSP it's there to stay.!

AVB

[Hidden in reply to abirke]

Perhaps he will not get that symptom. I hope not for both of you.

[Doglinton]

Hi,

C has started having incontinence problems. Not all the time or every night but one has to be prepared all the time. Also during day.

He wanted to ignore and deny the problem but I'm afraid I got quite stroppy, insisting we have to find a way to manage it together. Its the disease, not him. We work together to tackle it. Its really hard for both of you. Hate it and what it does to my lovely husband.

Love Jean x

[PUTLAND in reply to Doglinton]

I understand it is so hard to face these problems. I know he will want to ignore the situation, but I am going to have to put something in place to tackle this problem. Thank you and take care.

[erin]

Hello, my husband also wet the bed for the first time. He said it was because he was in a deep sleep and dreaming. When I said that this happens with PSP he replied 'not to me'. I am luckier than you, though, in that he does accept he has PSP.

We were due to go to an hotel with his brother and wife, and I just said that I would cancel if he didn't let me protect the bed.

We are in the UK and there is a sheet called a kylie. It is quilted on one side and waterproof underneath. My friend, whose husband is further down the line, recommended hippy chick tencel bedding. It is produced for children, but I have a fitted single sheet and flat sheet and they are lovely, they don't 'crackle ' and I bet he wouldn't realise.

I found that the trouble with male incontinence was that it went up, too, hence the flat sheet above. Also down the side, so I wrap the kylie around and under.

I hope that this helps. Do not be afraid to upset him, as with the hotel discussion, sometimes it just has to be done for your own sanity. X

[PUTLAND in reply to erin]

Thank you for all your advice, I will try for the kylie sheet and look at the produces for children. It is so comforting to be able to log on here with any problem and immediately some kind person is back with advice. Thank you.

[Robbo1 in reply to PUTLAND]

You don't feel kind when being stroppy or firm about continence solutions etc. but it pays off in the end, as often the patient doesn't think of how things affect others until it is explained clearly to them. I have found that this works and makes life easier for both of us.

[PUTLAND in reply to Robbo1]

I wish I could talk to my husband about this problem or any problem he wont listen. He is in total denial. Perhaps he is embarrassed but he wont discuss anything to do with his PSP. Even when we come out of our consultant and I mention something that have came up he just ignores it. I will keep trying, and I think this incontinence will bring things to ahead. Cant keep burying his head in the sand. Thank you

[abirke in reply to erin]

Puiland,

I agree with erin. Patient can not ignore PSP. Go to CUREPSP.org and you can get a kit with questions and answers that will help you talk to your loved one. And like erin you might have to give him ultimatums to ensure safety and comfort. life is sort of coming full circle and mate is becoming child again. We must do what is best for them and that may be telling them the truth of the matter. Pee won't go away nor will PSP!

AVB

[vlh4444]

We have been through this too a little while ago and unfortunately it does get worse. In the end the whole day and night seemed to revolve around getting to the toilet in time and was stopping us from going out where and when we wanted. We managed it for quite a while by always going to the toilet on a fixed schedule every two hours, whether he felt he wanted to go or not. He used to have a 'remind me' setting on his mobile phone which beeped when it was time. This worked well for a while although there were still accidents when he didn't get there in time.

At night we managed for a while by having a bottle beside the bed and he would get up to use it a couple of times in the night. When his mobility got so bad that he found it hard to stand to use it he tried doing it sitting on the edge of the bed but often had disasters by missing the bottle or dropping the bottle! We also got a touch sensitive lamp for beside the bed so he could put the light on easily in the night to find the bottle etc. In the end neither of us was getting much sleep what with all the fumbling around and cleaning up in between and me having to hold the bottle for him.

Eventually though he was having accidents more frequently during the day and sometimes when we had a sitter or other visitor here. Obviously he found that very embarrassing so eventually agreed to try the convene. This has been great and he now uses it every night and in the day if we are going out or visitors are coming. Surprisingly he doesn't mind wearing it and it has actually made him more relaxed and generally easier to deal with. I think in retrospect the toilet ting issues were making him very anxious.

It must be difficult when you have the denial issue to deal with as well but I'm afraid when the accidents become more frequent it will be hard for him to deny. Try to get some help with it as soon as you can.

Sorry this is so long but hope some of it might be helpful!

Vicki xx

[PUTLAND in reply to vlh4444]

Thanks Vicki I will look into the convene. I know if this happens again he is going to find it hard to deny the disease. Although this morning when I brought in his breakfast he passed no remark about last night.

[Robbo1 in reply to PUTLAND]

Using convenes has changed our lives for the better. We are free to go out, have better nights and a calmer routine.

[cabbagecottage]

The convenes are great . and the kyllie sheet. my husband is further down the line and is now wearing night lads . I hated the though of them but they work for him and he has accepted them .

[PUTLAND]

Thank you I will try for the kyllie sheets and the convenes. So comforting to have people to turn to and ask advise. xxxx

[easterncedar]

Oh, I am sorry for you and your husband. It's a hard adjustment, and of course VERY upsetting, but in the end it really is something we almost all have to come to terms with. It could be a once off for now. It took a long time, almost 2 years, from the first incident to the point where it became a chronic problem for us. Looking back, it would have been such a help to just accept it, get the depends and move on. We were, insanely, first sent on a long long round of urologists and medications, sonograms and kegel exercises, even tried bio-feedback, which was interesting, at least. Nothing helped at all of course. I wish I could have some of that time back!

Now he uses both depends and a guard all the time and plastic pants over those at night. (I don't know why they can't make heavier duty pants.) The convene didn't work at all for him, alas. I'd try that, though. When it works, it's great.

I use a thin waterproof sheet under the fitted sheet, and a quilted washable pad over it. I often have to change his pajamas and the top pad in the middle of the night, sometimes twice. Lots of laundry, every day, (vinegar is great to add to the wash) though the bedsheets themselves are generally okay. Someone here recommended a double set-up, layering two fitted sheets and liners, so if the top set is wet in the night you can just strip it off, no need to remake the bed. I think that's genius.

So on we go. It's amazing what you can cope with, once you get past the denial portion of the program. Try not to fret too much. Good luck!

Ec

[PUTLAND in reply to easterncedar]

Thank you so much for your advice. Very good idea to set up a double set-up layering, anything that makes it earlier for us. xxxx

[lsf7 in reply to PUTLAND]

That is a great idea!!!

[easterncedar in reply to lsf7]

I wish I remembered who suggested it, so I could give credit where due. It Is a great idea!

[ij0511]

Its a difficult area and quite taboo I started it urgency urine incontinence about 18 months ago telling no-one (getting progressively worse) Sneaking wet underwear in the washing basket. I am still working and tried pads HATED them Felt everyone could see and smell them Its all a male ego thing I think. Have a superb GP who suggested Convene urisheaths and thigh or leg bag. My biggest step was admitting the issue and plucking up courage to tell someone My wife now knows and understands I am confident again Feel getting back in control Admit I am sill fortunate that the drugs for Parkinsons are helping (Now I have changed to one that suits) . It so hard for the partner I know but there is no absolute answer

[easterncedar in reply to ij0511]

Thanks for the perspective. Glad you have found things that help.

[Duffers]

For me personally the Incontinence is the worst. I buy pants which help but it's the actual toilet issue that gets me. never ending mopping and cleaning. I have a waterproof fitted sheet plus a half waterproof sheet that I made under the ordinary sheet, if that makes sense, it helps a bit, but I have lots to look up, ie convenes, Julie sheets and all the other helpful suggestions. I get annoyed regularly but my husband just does the "PSP"semi hysterical laugh so there's no point really, it just helps me I think. All the best,

[NannaB]

It may sound mean, but when my husband became incontinent at night, I bought single beds. They were close together but at least then I was only washing single bedding. He wore Lille classic form pads as they are very wide front and back and had a Kylie sheet which seems to hold gallons. Things have progressed since then and now, like others on this site, he wears a convene, an amazing invention. He still wants to wear a pad even though it isn't needed. His thumb went up when I asked him if he feels more secure with it but I think it would feel uncomfortable.

I hope you soon feel better. It's not good looking after someone when you feel awful.

Get well soon.

X

[Auddonz]

Hi,

When my husband was diagnosed with PSP I took the precaution of buying depends before he came home from rehab. We made a deal that he only wears them at night. Has been fine with that and usually gets up to go to the bathroom at night even though he has them on. During the day he wears his regular undies with a depend guard pad, I think that is what they are called that just tucks into the front over his penis and scrotum. The deal we made seems to be working well for both of us. Saves changing bedding. Of course just being out of the hospital just under 2 weeks has made him weaker. I m so hoping he gets the strength back that he had before this latest trip to the hospital. He is still very weak. There for 11 days. That's all he say he wants back, what he had before. Don't know how old your hubby is but mine is 78 with other heart issues that do not help. We ll talk about everything, which is a huge help. Hope you can work something out with him. Everything is so stressful.

xoxoxo,

Audrey (aka auddonz)