My first post here. I have been reading many of your posts during the past weeks and am impressed with the care you all are giving your loved ones. It's also fascinating to me to see the amount of support the British receive when caring for their loved ones at home. Here in the US, we are pretty much on our own, unless we can afford private caregivers or the patient qualifies for hospice care.
My husband was diagnosed approximately 2 1/2 years ago. He was a busy OB-GYN when he started having difficulty with word finding and balance. Now, he cannot walk, use his hands or articulate his thoughts/needs. Fortunately, he is able to eat and drink without difficulty.
Do any of your loved ones have difficulty starting the flow of urine? Recently, my husband will feel the urge to urinate, but when I get him up on the "sit to stand lift" (he doesn't like to urinate sitting down) he cannot go. I t seems that his brain is unable to get the sphincter to relax. Usually, after several attempts he is able to relax and the flow starts. Incontinence at night seems to be a more frequent occurrence as well.
If anyone has any suggestions on how to deal with this problem, I would appreciate it.
Thank you.
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Sorry. We fought that for a while. I tried everything. It's common. Trying a catheter, with much awfulness resulting, finally broke my guy of his habit of urinating, or trying to, and now he wears layered depends and we manage. He seems now unable even to know when he is urinating. Wish I had better advice. The urologist wanted to install a supra public catheter, but as fiddling with the regular kind got us to the ER, I can't see that working. You might have better luck if your husband is able to comprehend and cooperate. Best wishes to you. Ec
Thank you, EC ,for your response. We just started using the depends two nights ago, just in case of an accident. Will look into these external catheters.
Convene is the main brand. I also tried Afex, which is a rigid cup held in place with special briefs, also with a leg bag. That works fine during the day, but is no good at night, as my guy isn't aware enough to keep it in place.
Welcome sorry to hear your delema. Not much help as I cared for my wife. But plenty of posts on this issue from EC, Heady, AVB, Namnab etc, it seems all solutions have problems but find the one that suits him and you. Try and find some thick pull up pads and double them at night worked with my wife but then anatomy different.
My husband struggles constantly with this. The bladder goes into spasm. We have been given meds for this but they're not that good. I use a plastic urine bottle and just stand with him fir as long as it takes. If he doesn't per for 18 hours he mat need a catheter but please ask them to drain and remove the catheter because keeping it in causes mire problems. I also use a convene for G at night. It's an external catheter. Good luck
Thank you. So far, he has not gone too long without being able to urinate but I can see that becoming a problem. I appreciate your help and good luck to you and your husband.
Hi I think you will find that it is one of the curses of psp. The incontinence at night comes under the term. Night voidence I found that the relaxation of sleep allowed the bladder to empty.
Because one of the symptoms of psp is the muscles tense up most have the trouble of relaxing enough to pee when they feel the need to go. Jane xx
Yes, I'm afraid it is one of the many curses. It seems his brain cannot get the body to do any of those most basic functions. Thank you, Jane, for your response.
Hi there.welcome. my husband wears a convene, an external catheter, which i change daily. It is a godsend. He also wears tena pull up pants with a liner as he is also unable to control bowel movement. Both help so much. There is still washing to do but not nearly as much. Have you a bladder and bowel clinic near you. I do hope you get something sorted soon. All the best to you both and god bless. Marie
Isn't it amazing what we get used to and so happy when we find just alittle bit of ease ....most people would still collapse in self pity (not that we don't but...) but here we take joy or pride in finding a small solution...
Thank you, Marie. I am definitely going to check out the convene that you all talk about. Is that the brand name of an external catheter, or is that the term you use in England for a any external catheter?
God bless you, Marie. So kind of you to respond to my question.
Its my pleasure if anything i have said offers some help or information to ease the already hard burden that you are carrying. The company i get things from, via our GP, are called coloplast. The convene is like a condom attached to a bag, with an internal slightly sticky soft elasticised band to wrap around penis first. Then the convene rolls up over it and sticks, thus helping it to stay on. I do hope you or one of your family can find this info if your GP doesnt have it. Good luck with that. All the best and mind yourself in 2017. Marie
Thank you, Duffers, I didn't have much luck getting an external catheter to stay on awhile back, but am going to try again. It would be a good solution if I could figure out how to make it stay on. I think with a little experimentation I could do it.
Hello and welcome to this site, you will find it both informative and supportive. My husband also wears a convene a night which allows a nights sleep, he doesn't want to wear them in the day except when we go out. In the day he frequently feels the urge to pee but can take ages for the glow to start and stop. He is able to control his bowels at the moment although I can see that it is becoming more of a problem. Kate
Just take a plastic bottle to bed every night. its what i do and there is no more trouble I also use it during the daytime as it is easier for me to pee into than the toilet bowl. it also stops unwanted splashes.
My husband was a Urologist, diagnosed about the same time as yours. While we certainly don't have the home care that they they have in the U.K., with Medicare we have had an amazing amount of PT and OT which has kept him mobile and helped with speech and swallowing. He is still fairly independent in the home. He uses a bottle (or two) at night. They are in a bucket so won't fall over. He has not had the urination problems you mention., but I saw an ad for a new kind of convene that looked amazing. A tube that attaches to the penis without sticky tape and leads to a bottle beside the bed. Is anyone out there using that?
Thank you, Fioni. I appreciate your help. We did the PT and OT as well, but unfortunately, my husband is declining rapidly, and any benefits from therapy were short-lived.
If you would be willing to send me the link to this ad for the external catheter, I would appreciate so much.
I hope your husband is able to remain independent for many years.
My husband was doing the same thing as yours....he actually told me he forgot how to go...and like you already know the brain cannot let the sphincter relax and well nothing left for us but a tube...When he was in the urologist for the first time, they asked him to go .....he could not...they catheterized him using a straight tube....he let loose of I don't know how many ounces but it did not take long for the dr to make his decision! I give him 8 cups of water a day plus 1/2 c of pure cranberry juice....for us it works!
As you are new to us , let me welcome you , with sadness, to this site......PSP does not discriminate though men seem to get it more than women,,,,Whether you have your PhD or you are the blessed garbage man ....theres another who does not discriminate God. I will leave you with a few verses that get me through the rough times and I hope they give you a bit of support....remember to as Him your needs....I have asked many a time for a miracle....but the miracle comes with my emotional growth and the tenacity to keep on going knowing my husband is not by my side but in the wheelchair infront of me....so pray for the miracle of continued strength and peace and comfort.....
AVB
Thou will keep Him in perfect peace, whose mind is stayed on Thee: because he trusteth in Thee. Isaiah 26:3
Be careful for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth understanding, shall keep your hearts and minds through Christ Jesus. Phillipians4:6,7
Thank you, AVB, for your words of encouragement. Philippians 4:6-7 is one of my most comforting verses.
You are so right, God does not discriminate. There is so much suffering in the world. We are certainly not immune to it, and shouldn't expect to be. I also think of Paul Farmer's words, (Founder of Partners In Health), "all suffering is not equal." Unlike many in this world, I am able to keep my husband relatively comfortable as he progresses through this journey.
If you are in England, ask your GP to request that the incontinence team get in touch with you. We had help and advice from them. My husband uses a convene, which if applied correctly, will last 24 hours , all you have to do is empty the bag when required, and replace the convene when necessary. It is, I think, more comfortable than a catheter. We have used them for about three years, we had a couple of mishaps at first, mainly due to my incompetent fitting. I am hoping that we continue in this way, as we have been able to go out and about without searching for WC's and night time has been calm and dry. Good luck! X
For those frequent visits to the toilet where he is unable to start, I learned from the spouse of a paraplegic that tapping the bladder/lower abdomen can sometimes help him start. It often works. Patience helps. tapping firmly but not pounding. Silly as it sounds, running the tap might help too especially if he is sleepy or up from bed.
Like many others here, my husband has problems with incontinence. I straight cathed him before he had a laser procedure that helped with his enlarged prostate. No longer using a catheter to empty his bladder now. External Catheters never stayed on (he pulled them off). I won't go the Foley route due to UTIs. At this time he takes oxybutinin, finasteride and tamsulosin for his prostate/bladder issues. He seldom (very rarely) urinates during the night now but does prior to waking in the morning and sometimes I'm lucky enough to "catch" with the hand held urinal.
The urologist also suggested that sitting is a better position to empty the bladder. (certainly less clean up too!!).
At this point, he wears depends 24/7. For those of you who have side sleepers, an extra long women's incontinence pad attached to the inside of the depends catches where there is no padding along the hip (who designs these things??!!) and he also uses a monstrously huge Tena product inside the depends at night for those early morning empties. I think they must hold a gallon!
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