My wife has PSP and constantly needs the toilet. No problem managing daytime but getting up two - three times every night is becoming a real struggle. If commode not immediately available she get angry and aggressive. She wears'pads'. There is no underlying urinary infection. I would be very grateful indeed for any help/advice with this problem.
Yours,
In need of sleep.
Sorry, no real ideas to give, other than do what I did - Sleep at any opportunity.
The other thing I tried was rather mean but I was at wits end and extremely sleep deprived. I left him at the hospital OT and told them to sort it out as I was going home to sleep. Was running on 3 hours a day for months. I was not a pretty sight. Alied medical people sprung into action. Tests were performed. And John was given lessons on being able to sit up on his bed and swing his legs over (with the aid of an electric bed and overhead pull bar) to pee in a bottle. OT visited home. A psycologist was even employed look for options to distract the mind.
Now when John goes to bed, he doesn't drink for about an hour before bed except for medication, then still gets up about 40 min later to go to the bathroom, and then again 3 hrs later at 11pm and again about 3 - 4 am and then 7 am
Regards,
Alana - Western Australia
I'm sorry that I can't recommend the no fail solution to the problem that your wife and you are dealing with, but I'm pretty sure that I read something that someone had submitted here quite a few months back where the use of a med. ( I think that it was a muscle relaxant in that case ), was very helpful with their issue of feeling the need to void constantly. I believe that a knowledgeable MD/neurologist might be able to be of great help with a problem such as this. It also would seem as if a qualified professional should be consulted to address your wife's abusive behavior . There may be interventions both medical and behavioral to deal with the problems you described. I would be very hopeful. There are so many people who suffer with bladder issues of all kinds , let alone every other type of affliction . As the seemingly main caregiver for your wife at this point , you need interventions that work and you need to be able to take care of your own health and well being . Wishing you the best of luck with everything and in getting the help that you're entitled to receive. Take care, Elise ( NY)
Hi Sayer,
Mum was having a similar problem to your wife and was prescribed a drug called Vesicare which reduced the "irritability" of the bladder. She was also advised to cut out caffeinated drinks as caffeine increases the bladder's sensitivity. This combination seemed to help a bit. Ask your GP for a referral to a urologist.
The other thing to consider (possibly as a last resort) is whether your wife would agree to go for respite so that you can catch up on some sleep.
Hope this helps
love
Kathy
My husband has gotten up as many as five times in a night - always with help from me as he is on that continuous feeding pump. I talked with him over and over and threatened to "get a string and tie it around his penis." Well, it helped when I turned the temperature down to 65 degrees - he doesn't want to come out from under the covers! He is also in briefs and on a waterproof pad. If he doesn't wake up, then neither do I.
The other thing I have in the wings is a box of condum catheters. My hospice nurse friend was the one to suggest that. This wouldn't work for a female of course. Those medication suggestions some others suggested sounded like a good bet.
Good luck!
Caroline
sayer but just think of the problems you would have ff she did''nt use the toilet mate no, i know being a carer is not much fun mate but neither is having psp im afraid to say but there we are both stuck with it \\ the person with it and the carer i am sorry to say we will all have to do the best we can in the situation we find ourselves in \\ and wait until your wife goes to sleep and then sneak a little for yourself or get someone in to keep an eye on her while you can get some kip sorry its not very useful advice buit the best i can think of at the moment peter jones queensland australia psp sufferer and night owl
The problem is that when we lay down and our legs are level with our heart the fluids in our bodies returns to the organs and can then be passed as urine. Also if you are less mobile you tend to retain fluids. so it's a catch 22 situation but on the good side at least if you are passing water in the night you shouldn't be so prone to water infections. Mum had lots of urine infections but that was mainly due to the fact that she could hang on for absolutely hours without going and in the end it was her downfall. There are lady convenes available but it depends on the person's willingness to try them. I always had mum's commode ready next to the bed and had a bar on the wall to help her to stand.However she would try to do it on her own and ended up on the floor trapped next to the bedside cupboard twice.Luckily both times were first thing in the morning when there was someone around.Have you considered getting someone in to stay with your wife in the night once or twice a week to give you a break? If you are in UK Crossroads do this service.Mum used it for Dad as he was a perpetual toilet user night and day but having had 3 strokes it was hard work getting him there and back. Obviously this would work better if you were able to sleep in an other room.
Good luck,
i have to get up a minimum of 3 times a night but ny huband makes sure that my comode is right next to the bed - and yes it is niot much fun being woken up for your wife to go to the loo but it is better than having the bed wet !!
Hubby (and I) used to get up 2-4 times a night. When the neurologist prescribed 10mg Amitriptyline for dribbling, the nightly waking stopped. I do not know whether this is a coincidence, or whether the medication, which is supposed to 'dry' you up, did the job. Maybe a chat with the neurologist will help. Good luck.
Hello, My beautiful Mum has PSP, and many other health worries... I do not mean to embarrass anyone but I recently contacted two companies because their adverts on the television I found hurtful to people who would be watching and needed their product ... They did listen and say that they would see if they could use my suggestion... Now come my thoughts...
When babies are growing a lot of adults are inclined to say to the child, Look now your a big girl / boy and so you don't need nappies / diapers anymore... They all to often forget that NONE of us know when our need for this type of product will be needed in our life again...
For my mum I found she was to shy to ask or discuss her worry and when I found out, Yes she had an appointment to visit an expert in this department.. Their answer was to put a catheter in for mum's comfort...
This was in fact of no comfort it just added to mum's embarrassment . Plus gave her infection after infection... I should add that ALL this time mum had not even been diagnosed with PSP.
Well after many months with this catheter in and also having to go to a nursing care facility ( yes please note that I did NOT say home, Because there is NO PLACE LIKE HOME ) my mum was very upset re her appearance and so I searched and found Tena products. The one I chose for mum was the Tena Ladies Pants... Well as it say's. Pant's... Yes I explained to my mum how great they are and that I had tried them and I told her that when I felt the need to use the toilet either way I knew that Tena would not let me down, and they did not. I know this because I used a pair of the pants myself so that I would know how I would feel, that would help me understand how my mum would feel. The only difference is that while I do not have a personal need for these,,, My mum does. However she could talk very well when she started to use these... It was lovely to hear mum say, That her new pant's were lovely,,,that her bedding did not get marked,,, Most of all Mum said. And nobody knows I'm wearing them and I don't have to keep checking to see if my clothes are dry or marked ... Yes as time moves along there is a need for,,, as I would call them. ( easy accessible pants ) and I think that at all times it not always what you say to the person of any age that needs the use of these products. Sometimes it's just as important to try and not say words that will hurt and therefore damage the person's confidence , personality and self worth. I could go on but would not like to upset anyone. We , meaning mum, myself and my daughter are on this Psp journey 8 years and some more... I find you can live with Psp . You just have to adjust life style along the way... What I find that I cannot accept is people who are qualified in the medical /Carer field and yet NOT listening , plus not understanding that my mum knows what is going on and what they are talking about, As if she was not in the room... Simple things like making sure her head is in line with what would bring her joy to look at . xxx valeriewilson78@yahoo.co.uk
Hi Ivan, Your welcome. Remember when your lovely wife has a nap , Then you take a nap too. xxx
HI I HAV E EBEN ON MEDICATIOIN WHICH CUT SDOWN HT ENIGHTTIME VISITS OT THE BAHTROOM FORM EVERY HORU TO 2'3 TIMS A JNGIHT
VESICARE AND IT IS BETTER THAN HTE OLDER FASHIONED MED
LOL jiLL
:=)
Jillannf6
Many thanks for taking the time replying to my query. I will follow it up with my GP.
Ivan
My mom 72 diagnosed in Jan this year...has exactly same thing. She now has a catheter in and although uncomfortable at times...it beats getting up 7 to 8 times a night. She can also rest a bit better and is safer than the trip to the toilet. No infection. It's the option our urologist gave us for now. Next step is a suprapubic catheter which she refuses for now.
Not sure if this helps.
Hang in there
Sleepless. Xxx
Caring for a PSP patient.
Special chairs for PSP sufferers
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