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    Old 05-31-2011, 03:09 PM   #1
    nonnie122
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    Stroke and Incontinence

    I am really confused, and a bit discouraged with my husband's incontinence...
    He had his stroke on the 19th of July, 2010...at first, obviously, he was incontinent, but then as he became more awake, and alert, he always knew when he had to urinate..of course, in the hospital, and at the care facility that he was at for 5 months, didn't encourage continence..it seemed to be easier on them if they just kept him in diapers...
    I finally got them to, at least, listen to him when he said he had to have a BM...but they, for the most part, ignored his requests for urinating...I figured that this would be taken care of when I got him home..
    From the time he got home, he was telling me that he had to urinate..I will admit, that most of the times were false alarms, but he did real well most of the time..of course, I probably put him on the toilet about 20 times a day, but that was ok with me, as long as he felt the urge, I was going to listen to him...
    At first, he woke me up, at night, about 3 to 4 times, saying that he had to urinate..sometimes it worked, sometimes it didn't..but, again, I was willing to lose sleep, if it meant getting him continent again..
    He has been home for 5 months now, and he seems to be going backwards...now he sleeps through the night, which is good for both of us, but it means that he is waking up very, very wet..that's OK too, as long as he lets me know during the day...well, just lately, he hasn't been telling me, he just wets himself, and he says that he doesn't realize he is doing it...then on other days, he tells me all the time, and is quite successful..
    Will he get back on track again, or will he just get worse and worse?
    I breaks my heart to have him going backwards like this, when I know that he was so much better when he first got home...
    Does anyone have any suggestions for me to help him, or am I just making too big of a deal about this?
    I need some guidance, please...
    Donna

     
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    Old 05-31-2011, 03:34 PM   #2
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    Re: Stroke and Incontinence

    Hello Donna,
    I really am not sure about the uriantion thing.. I do know that weird things happen after a stroke. It really seems to find it self and get better. For instance. I had nose bleed after my stroke and and that i never had a nose bleed. like me. It bled for 2 or 3 days and then stopped. So your hubby's uninatig mabbey just a phase? I don'tknow. All I can say is that after a stroke, much weird things come to happen.
    Do you know that when I sleep on my side. That the other side goes asleep. The one that I am not sleeping on. So it is just bizzare. So I don't have any advice about his urinating problem, but it might go away too. There really is nothing to do but wait and see with you both. You love him I know. And it is a very hard time, but you will get through it. I am sorry, I have no answer except hope for you and your husband. Don't be mad at him. He is just frustated with himself as you are.
    god bless,
    tim

    Last edited by Positive Cynic; 05-31-2011 at 03:49 PM.

     
    Old 05-31-2011, 04:25 PM   #3
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    Re: Stroke and Incontinence

    Oh, I don't get mad at him, as I know he is very frustrated too...
    I thank you for answering my post...it sure feels nice to know that there are other people out there, dealing with strokes, and that we are not alone...
    Thanks again..
    Donna

     
    Old 06-03-2011, 09:17 AM   #4
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    Re: Stroke and Incontinence

    Hi nonnie,
    I'm fairly new to the "stroke world"..my hubby had a stroke in Nov 2010. We are still learning, but I definitely know what you are going through, your frustrations, and all that changes in the blink of an eye.
    As for your hubby's incontinence, I do think it will get better over time. I think he just needs more time to reprogram and maybe strengthen the PB muscles and the muscles that help hold urine in the bladder.
    Have you ever heard of Kegel exercises? If not, maybe you can google Kegel exercises for men and learn how they are done. Quite simple really, and I know that they had my hubby doing them when he was in rehab for incontinence and he continues here at home. I must say he has improved tremendously. Even tho when he has to go, he has to GOOO in most instances, at least he has gotten control back.
    Another thing that might help at night is limiting fluid intake, maybe a cut off as to how late before bed he drinks fluid? Maybe even try Timed voiding to "retrain" the bladder.
    I would give you links to kegels and timed voiding but I found out that links are not allowed on this forum? I'm sure that you can find info on both through google.
    Wishing you and hubby the very best of luck. I do know how it effects him AND you all that he is going through. It's a long hard road but just try to hang in there and take one day at a time. (hugz)

     
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    Old 06-03-2011, 09:26 AM   #5
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    Re: Stroke and Incontinence

    Thanks for your input...I am going to put him on the toilet every two to three hours today, and see if that makes a difference..it just bothers me that when he first got home he would tell me, now he doesn't..just don't understand it, but there is a lot about storkes that I don't understand..it is a mine field that we are going through every day...
    I do limit his liquid, but he goes to bed so early, that I just know that he will be wet in the morning..he goes to bed around 8:00pm every night, and doesn't get up until around 7:00am..so that's a long time to stay dry...anyway,those kegel exercises sound like a good way to go, I'll check that out..
    Thanks again..
    donna
    p.s. have you noticed your husband's eating habits changing?

    Last edited by nonnie122; 06-03-2011 at 09:34 AM. Reason: add something else

     
    Old 06-03-2011, 01:09 PM   #6
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    Re: Stroke and Incontinence

    You're welcome
    No, I haven't really noticed his eating habits change too much. At first when he came home from rehab he didn't seem to eat as much, but now he's back to normal.
    He had dysphasia after the stroke and wasn't able to eat or drink for almost 3 wks, then was allowed thickened liquids and pureed foods. He lost close to 40lbs. He came VERY close to having to have a feeding tube, but thankfully I made them do 1 more swallow test the day the procedure was suppose to be done and he managed to pass the test. phew!
    I think his stomach must have shrunk and that's why he couldn't eat as much at first LOL Cause now he's back to normal and has gained about 20lbs back. HOPEFULLY he won't keep gaining He's at a healthy weight now and I'd like to see him stay that way.
    Why? How has your husband's eating habits changed? Did he have any swallowing issues?

     
    Old 06-03-2011, 02:19 PM   #7
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    Re: Stroke and Incontinence

    Yes, he had a swallowing problem, and was on a feeding tube for about 3 weeks..I hated it...then came the pureed foods, and finally, after about 6 weeks, he was put on solid food..what a relief that was...for him and for me...he lost lots of weight, but he has gained most of it back...they kept telling me that if he kept dropping weight, they were going to put him back on the feeding tube, so I brought him lots and lots of smoothies, and Jamba Juice..that seemed to do the trick
    My husband was a man that LOVED TO EAT...now he doesn't like the things he used to love..tomatoes, eggs, bacon, peanut butter, etc...if he had his choice, all he would be eating would be orange chicken, tater tots & granola cereal I sure could save a lot on my groceries
    Our main problem now is this incontinence thing..I wouldn't be so freaked out about it except that when he first came home he told me all the time when he had to go to the bathroom, but now he seems to be very content just going in his pants, even when he is awake..he says he doesn't realize he is doing it, but right after he goes he sure knows enough to tell me..very frustrating, and I am trying to be mellow about it, but I do lose my patience every once in awhile, and then I feel bad for doing that...
    Sure is nice to be able to get some of this off my chest..I sure don't want to lay all of this on our kids, they are worried enough about both of us
    Thanks for lending your ear...
    Donna

     
    Old 06-03-2011, 04:21 PM   #8
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    Re: Stroke and Incontinence

    I have no idea about the change in appetite, or maybe change of tastebuds? thing. Maybe others here will chime in about it. Just another one of those odd stroke things I guess. It effects different people in different ways.

    I'd say ask the doc about seemingly going backwards with the incontinence if you haven't already, but we have found that more often than not the docs have no answers. I do think that many things seem to go 1 step forward 2 steps back sometimes so just keep plugging along with reminders and the kegels and hopefully things will improve. I know how frustrating it is for you...but at the same time I know it must be even more frustrating for him.

    My hubby has a problem in the other uhhh toilet area? BMs are our main problem/concern right now. It just sort of sneaks out!
    I don't know which is worse..your problem or ours.
    Does your hubby have any problem in that area?

    What really ticks me off is the fact that by the sound of things your husband didn't get proper care as far as the continence issue goes while in the hospital and neither did mine. My husband of course had a catheter for a while right after stroke. Almost 2 wks I think and I was starting to worry. I had heard the longer the catheter was in the harder to get control back? Well finally HE asked to have it removed because he could feel when he had to go. They removed it..then they would get annoyed when he kept ringing for a urinal and half the time he really couldn't go, he just FELT like he had to.(I got the urinal for him myself when I was there which was most of the day every day) Then of course there were accidents to, and they decided to use another kind of catheter, like a condom around the...that went in to a tube and into a bag? The dang thing kept falling off and they blamed him for pulling it off when he WASN'T. GRRR!!! They wanted to recath him and I went through the roof! Just because it would be easier for THEM. And as far as the BMs they never got him on a bedpan or commode. He was constipated for a long while at first and I think that was because he was not eating or drinking, and not mobile.
    Through research after the fact I found out it's important to be put on the commode or at least bedpan asap and regularly so they don't lose it. geeez!

    I get that in our case my hubby was very bad off and had pneumonia and on a respirator and suction going on all the time in the beginning. Yes he was weak. But if they know how important it is to keep the brain stimulated to such things.....again GRRRR!!!!

    Heck they didn't even do any Physical therapy for almost a whole month. Even just doing range of motion with his shoulder, hand and leg would have helped. But they didn't and I didn't know then what I know now..so those areas are slower to come back too. I was always massaging his arm and leg and bending fingers to remind him they were there.. but I didn't know about the range of motion exercises for the shoulder. *sigh I WISH I HAD KNOWN!!! Ticks me off because you would think they would know these things.

    Sorry everyone. Now I am rambling and on a rant. It's just the whole thing makes me sooooo

    Last edited by kel61; 06-03-2011 at 04:24 PM.

     
    Old 06-03-2011, 05:00 PM   #9
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    Re: Stroke and Incontinence

    Wow! You sound as though you had the same problem as we did in the hospital..I was there from 9:00am until 6:00pm...so I saw a lot of what was going on, and your right, they like the catheter because it makes it easier for them! My husband had one in for a short time, but my daughter, thank god, insisted that they remove it...and, as your husband, mine would say he had to go, but then he hated the urinal, so he wouldn't use it anyway...
    After two weeks, he was moved to a skilled care facility..he had pneumonia, and I didn't want him moved, but they said it would be alright, not to worry...well, he was there for about 8 hours, and his fever spiked, and he had to be rushed back to the hospital, where he stayed another week..they kept him a few days longer, due to my persistance and badgering, but they finally sent him to another skilled nursing facility, where he stayed for 5 loooonnnggg months..he hated it, and I hated it...he got therapy there every day, but after awhile, when he didn't progress like they thought he should have, they stopped it...I did a lot of working with him myself, and started to see some improvement, and asked them to check him out..they did, and they put him back on therapy...by the time we were leaving, he was walking, with help, all around the lobby of the facility..I was very encouraged by that..
    After he got home, he had some more therapy, then his foot started getting toned, and turning in, so he had to go through "serial casting", and through all of that time he couldn't walk, so that set him back about 8 weeks..we are now at square one with the walking thing, but he is doing a bit better..
    As for the bowel thing...we are very lucky in that way..he knows when he has to go, and tells me, so that, so far, hasn't been a problem...believe me, I know it could be worse..
    I agree with you, as much as it is frustrating for me, I am sure it is ten fold for my husband...he hates being the way he is, and he hates having me take care of him and have to do all that I do...he is always apologizing, and thanking me..it is very sweet of him, and I appreciate it...
    I am going to talk to his physical medicine doctor about his seemingly backward move with his incontinence, but, like you, I think they are in the dark as much as we are..
    I know that my husband wouldn't be as far along as he is if I hadn't been a thorn in their side all along the way...he would have slipped through the cracks, which I am sure happens to a lot of people, especially when they get to be older...
    Sure is nice to know that I am not alone out here...it's always nice to talk to someone who has been there, and is living this life..our friends are very supportive, but they can't know what we are going through...it takes someone who has walked in our shoes..
    Much appreciate this forum..
    thanks for all of your feedback to me..
    Donna

     
    Old 06-04-2011, 07:36 AM   #10
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    Re: Stroke and Incontinence

    From the patients perspective…no one hates it more than me. Bad enough all the other changes and indignities, but to add to my hub’s workload is awful for me. At the end of my hosp. stay I had a nurse tearfully apologize that I had not received better care in that area. She was very kind and sweet but I was still going home without bladder control. It takes a long time to get it back. Although it is rarely permanent, even a temporary loss can be emotionally devastating
    I am sure he is doing his best. We have good days and bad days too.
    Hoping this all resolves for all of us soon.
    Blessings,
    Nancy

     
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    Old 06-04-2011, 10:12 AM   #11
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    Re: Stroke and Incontinence

    Thank you, Nancy...it is always good to hear it from the patient's perspective..I sometimes get so caught up in how I "feel", that I forget that he is going through this, and is hating every minute of having lost the man he was...I really do try to think before I speak, as I know he is doing his best..
    It is very strange...sometimes he tells me when he has to go, but then he just stops, and goes back to wetting...not sure what to make of it...he is taking Flomax, so maybe that is relaxing him so much, that he loses control...definitely something I am going to take up with the doctor..
    than you for you input!
    donna

     
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    Old 06-07-2011, 08:27 AM   #12
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    Re: Stroke and Incontinence

    Thank you for the hug donna. It is like the light at the end of the tunnel was replaced by a low wattage bulb somtimes.

     
    Old 06-07-2011, 02:48 PM   #13
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    Re: Stroke and Incontinence

    Boy, ain't that the truth!

     
    Old 06-07-2011, 03:12 PM   #14
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    Re: Stroke and Incontinence

    Hello to Nonnie, and welcome to our special family of stroke survivors and their loved ones, the unsung heroes.

    I am a survivor of 4 strokes, 8 years ago, and I can promise you that he is doing his very best. There is so much going on in his brain as it is furiously trying to repair itself, and you never know what aspect of recovery his brain has chosen to work on at what time. While it may seem as though he is going backwards in one area, he is likely making great strides in other areas, often without our knowledge. My recovery was seemed very disconnected from the outside, but within it is a another story.

    It is likely that his brain has other more important to work on now, and the continence will come in it's own time. One day you might be surprised when he is ready to go, and does so on his own again. Until then, I would encourage you to keep him in diapers and take the pressure off him. He will likely do best when he does not feel any pressure to perform. If he could, he surely would.

    I am sure that is not the news you would prefer, but it is my experience that the least pressure on me to recover was the best thing I could ask for. Inside we are almost in a panicked state, not knowing if or when we will ever be able to do the things we could before. It is also very confusing and downright scary. I was most blessed to have my caretaker understand how much I was going through, and how scared I was. I have always thanked him the most for letting me do what I could when I could, and nothing more.

    I am so happy you have found this wonderful place to meet others who are on the same journey you are, and those that have come before you to share all of our experiences. Even after coming here almost everyday for 3 years now, I continue to learn from others and greatly benefit from helping others any way I can. We are all here to help each other, and I hope you feel the support and concern we have for you.

    Love to all,
    Janet

     
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    Old 06-07-2011, 04:31 PM   #15
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    Re: Stroke and Incontinence

    Thank you so much for such an uplifting email....I do forget that he must be going through hell, inside his head...sometimes I get so busy thinking about how MY life has changed, I forget to remember that he is the one that is going through this hell...for the most part, I am very patient with him, but there are those times when I slip and go into the "poor me" mode...I hate it when that happens, and I try to push those thoughts away quickly..
    I have heard that when he wants to sleep, let him sleep, as that is when the brain is trying to heal itself...my husband does sleep a lot, and I guess that's ok...
    It does seem to me that he is going backwards, but maybe his brain is just busy working on something else at that particular time I'll try to remember that, and quit stressing so darn much...my biggest thing is to accept the fact that the husband I knew is a different person now...oh, he is still very loving, and sweet, but just different, but that's ok, as this one is just as much of a keeper as the other one was
    These message boards are a real godsend....it makes me realize that we are not alone in this journey...
    It just seems as though he struggles so much, and it hurts to watch him go through this...I'm not sure he will ever be able to walk again, on his own, and I know that is very frustrating to him..he needs help with everything he does...get in and out of a chair, on and off the toilet, in and out of bed, etc...I am very glad to do this for him, but just wish he could get a bit more independence back..I know it would lift his spirits ten fold! He does have a caregiver who walks him everyday, but that too is a very slow process...
    OK, I'm rambling, so I guess I'd better close this before I really start babbling
    Great hearing from you, and the others...
    Thanks so much for all of the input!! I definitely listen to it, and try to adjust my feelings, and actions..
    Donna

     
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