Bathroom problems


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Bathroom problems

Postby noreensfl » Sat Apr 23, 2005 6:35 am

My husband was diagnosed in December 2003 but in retrospect, we think he has had PSP for about 4 years. He is still ambulatory but VERY slow. Lately he is really slowing down more and more. I have been showering, dressing, shaving him, etc for about the last month or so. I prepare his food and cut his meat but he is still able to feed himself most of the time although it is a very untidy event!! He is pretty lucid most of the time but gets confused when he is tired and especially at night. His downward gaze is gone and the problems with footing, sitting in chairs, etc are increasing.

My biggest problem at this time is unrinating (related to the lack of downward sight). He uses a urinal all the time because he cannot see the toilet and was constantly urinating on the floor in front of the toilet (he says he can't go sitting down!!). He hasn't been having a problem using the urinals until recently. Now he keeps asking me "how do I use this??" and I have begun to just go with him and hold the urinal for him.

At night if he doesn't wake me or I don't hear him (which happens if I've been up 5 or 6 times previously that night!!) he gets confused and either tries to urinate in the sink (getting urine all down the front and into the underneath cupboard) or attempts to use the urinal and it goes all over the floor.

I bought "Depends" but since he is ambulatory he still gets out of bed when he has to go and he will not urinate into them (I can't say that I could either). I bought a condom catheter and tried that the other night. But being the first time for me, I did get some of his pubic hair caught in the adhesive and it HURT him a lot. He told me to take it off and I then proceeded to KILL him doing that which pulled on the caught hairs even more!! He will NOT let me try that again.

Does anyone have suggestions for me. I woke up at 6AM today (after being up with him at LEAST 6 prior times last night) and he was in bed awake waiting to tell me he had made a "BIG mess". He felt so badly and I felt so badly for him.....urine was ALL over the bathroom floor. He had put a two towels down and was waiting for me to wake up and tell me. Now that the daily load of towels in in the washer, I had to write to all of you (this is my FIRST time) for some guidance. I hope someone can give me a few suggestions.

He is such a sweetheart [:I]and any suggestions that could help us would be soooo appreciated.

Noreen
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Postby Beth » Sat Apr 23, 2005 5:33 pm

Noreen,

I feel so badly that you don't have a reply yet, for it's a problem for you which needs attention. Unfortunately, I'm not the one to help because it was my mother I cared for and our situation was so different. I do want you to know that I'm thinking of you, and hope someone who has experience will answer and give you help.

I'm so sorry you have to face this horrible disease, but happy you felt comfortable enough to ask for help. Take care!

Beth
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Postby momppsp » Sat Apr 23, 2005 5:43 pm

Noreen: I know when my Dad took a turn for the worst, he didn't want any of us help him. We only had daughters and mom was and is in a nursing home so he felt embarrased.He eventually got used of the depends and he liked them because it wore him out just going to the bathroom. I'm sorry I don't have any answers for you but I'm sure someone will write you with suggestions. Sometimes the weekend of the forum is a little slower than during the week.
Hang in there and remember to take care of yourself!
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Postby wally » Sat Apr 23, 2005 10:07 pm

Hi Noreen! Have you tried using the commode next to the bed? I'm not sure that will even work at this time for you. It sounds like he needs the help to position himself. Do you have someone that can help you so you can get rest? I have not had this kind of experience with urinating but I thought maybe the commode could help. Anything is worth a try. It seems that is how it is with PSP - Trial & Error.
My prayers are with you, Lori :)
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Postby Jrusty » Sat Apr 23, 2005 10:35 pm

My Dear Noreen,

Deja vous! I have been in your shoes and it is a real problem. Russ started the incontinence early on before we had our first diagnoses of PD+ with dementia in 2001. He couldn't hit the commode, and he wouldn't tell me. He denied doing it like a bad little boy. I felt so sorry for him. We got a higher toilet, with the longer oval opening hoping he would sit down to urinate, but men don't do that. He is now in a hospital bed and wears depends and uses a BSC. I finally had to insist on the disposable underware, because I couldn't change him, he just wasn't able to balance even when holding on to the U-Step waler and I couldn't get him up off of the floor any more when he fell.

He now uses a BSC for BM's but he becomes so stiff and weak in the PM that I don't dare try to move him from wheelchair to commode until my son-in-law come to help. If he happens to urinate while on the BSC it often goes on the floor. They don't make a BSC that will work for male plumbing, at least I haven't found one yet.

I wish I had some more positive help for you. The biggest relief for us was when I got him into throw-away underware. I never call them Depends or diapers. I asked him to do it for me. It's still a problem but not nearly as bad, he sleeps through the night, or at least does not ask to get up.
The disposables are like the diapers for young children, they seem to remain dry against the skin. I get his a Walmart, cost about $30 - $40 a month.

My love to you and a big hug.
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Postby aboc1960 » Sun Apr 24, 2005 1:17 pm

Noreen,

With my father we used a catheter called the "Daisy" - it adheres just to the tip of the penis and is supposed to be more comfortable than a condom catheter.

Alice
daughter of Hal Brown 1934 - 2004
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Postby noreensfl » Sun Apr 24, 2005 3:35 pm

Thanks to all who responded to my plea for help!! The BSC would NOT work, Lori, due to the fact that Bill says he can't urinate while sitting down and also there is no male urine shield on it.

This afternoon I went and bought some Walmart brand "Depends" that are more like underwear. The first ones that I bought had sticky strips on the sides like a diaper and may be good when he is bed-bound but not now. I will ask him to wear them <b>for me</b> as you suggested Jane and see what happens. (by the way Jane, it seems like a lot of retired RNs have a loved one with PSP!!)

As far as the "daisy catheter", Alice, where do you find those?? If they are more comfortable maybe that would work.

I think my main problem is his getting up EVERY TWO HOURS at night because he feels like he has to urinate. Last night he went to bed at 8:30PM and was up at 10:30PM, 12:30, 2:30, 4:30, (and 4:35 just after getting settled in bed) and 6:30AM. Each time he urinates a small to moderate amount but not enough to wake a "normal" person.

We have an MD appointment Friday with our new neurologist who is closer to home (Ocala, Florida) and I will ask him to prescribe something stronger than the 150mg of Trazadone that our neurologist at Mayo Clinic in Jacvksonville suggested for sleep. The trazadone seemed to work for a while but even increasing it from 50mg to 100mg and now to 150mg, it is doing NOTHING!!

In the meantime, I think I'll try leaving the urinal next to our bed and then when he wakes me, I can hold it for him right there and save myself from helping him shuffle SLOWLY back and forth to the bathroom during the night. As long as I hold it for him we shouldn't have any spilling accidents on our bedroom carpet!!

Again thanks for all the comforting and helpful responses. It REALLY HELPS to know I am NOT alone with this horrible disease.

Noreen
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Postby Jrusty » Sun Apr 24, 2005 9:14 pm

Hi Noreen,

To protect the wood floors, I put down a piece of left over kitchen flooring. You might be able to find some kind of protection for your carpet that wouldn't trip him up. I used the pull up underware with Russ and they worked very well while he was ambulatory, but now the diaper-like ones are best.

Being a retired RN, When I think about using a catheter, all that comes to my mind are the many, many Texas catheters I placed and replaced when I worked nights. I am sure they have improved and that daisy sounds interesting, but Russ has enough dementia that he would remove it. [xx(]
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Postby noreensfl » Mon Apr 25, 2005 6:42 am

Last night was terrible!! The longest we slept was 2 1/2 hours between 1 AM & 3:30!! Other than that he was up every hour or so.

He asked me to put the waterproof pants on him before he went to bed (I had bought the pull-up type yesterday) but he pulled them down the FIRST time he got up last night and insisted on using the urinal. So I removed them because it's easier for me to just get up and hold the urinal for him and NOT have to pull any pants down.

I did try using the urinal next to our bed rather than walking him to the BR every time and that did save me time. But I did get VERY cross with him during the night and of course feel very bad about that this morning.

I plan to call our new neurologist today and see if he will prescribe Ambien or something. Bill asked me if <b>I</b> wanted to take his pills so <b>I could sleep better</b>!! God love him!! I told him that if <b>HE</b> slept better, <b>I</b> would sleep better!!!!!

Oh well....tonight has to be better!!
[:p]
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Postby NancyL » Mon Apr 25, 2005 9:49 am

Hi Noreen,
My mother also had a horrible time sleeping and it seemed none
of the medicine prescribed helped,until the doctor prescribed
klonopin. This at least seemed to relax her so she could get some
rest.You may want to ask your doctor if they think it may help.

I wish you a good nights sleep or someone to help you at night
so you can get some rest.This disease will surely drain the caregiver
as well as the patient.

Nancy L.
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Postby noreensfl » Mon Apr 25, 2005 11:40 am

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by NancyL</i>

Hi Noreen,
My mother also had a horrible time sleeping and it seemed none
of the medicine prescribed helped,until the doctor prescribed
klonopin. This at least seemed to relax her so she could get some
rest.You may want to ask your doctor if they think it may help.

I wish you a good nights sleep or someone to help you at night
so you can get some rest.This disease will surely drain the caregiver
as well as the patient.

Nancy L.
<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">

Thanks for the advice, Nancy. I called and got a 3:15PM appointment with our neurologist today. I will ask him about this med and let you know.
Noreen
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Postby Lorainemarie » Mon Apr 25, 2005 3:12 pm

My mother was getting my father up repeatedly during the night to go to the bathroom. She was going to the bathroom very frequently during the day as well. She felt that she needed to urinate even when she had just been to the bathroom 15 minutes earlier. The doctor prescribed a drug that made her go to the bathroom less frequently. I know the name of the drug was on the braintalk forum but that forum is down right now. Perhaps you could ask your doctor. My mother is in a nursing home now and lots of the residents are on this drug; they seem to call it an "incontinence drug". This wouldn't solve the problem of using a urinal but it may help you get some sleep.
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Postby Lorainemarie » Mon Apr 25, 2005 3:19 pm

I forgot to say welcome to this forum!

As I mentioned in my previous message, my mother has PSP so I don't have any experience with men with PSP using the bathroom. I have an off-the-wall question. Do you have a shower stall in your bathroom? Can you just teach him open the shower door and urinate into the shower at night? Then maybe you could run the shower on hot for a few minutes each morning to rinse any residue down the drain? It isn't optimal but it would be much easier than cleaning the vanity and bathroom floor in the middle of the night.
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Postby tam » Mon Apr 25, 2005 3:24 pm

Don't know if this might be an option,but oh well.Our hospice gave us sheets,.....for lack of a better description I called them "diaper sheets".They were appox. 3'x 2'.We would lay them under Dad in bed and they would soak up anything that came their way.As a matter of fact,after Dad passed we had a surplus and my cat was having urinary tract problems at the time.So I used to put them on the floor in the spot where she was going.They are great.
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Postby noreensfl » Mon Apr 25, 2005 8:00 pm

Thanks for the suggestions but our neurologist did order Ambien and another drug (Cardura)that is supposed to quiet down Bill's bladder. I just gave them to him and put him in bed....we'll see how it goes.

The bad news is that I could tell today that this neurologist has NO IDEA about PSP and was NOT pleased when I doubted some of his ideas 1- that Bill has a urinary tract infection and that is why he is urinating frequently at night and 2- that maybe his problem is NPH (normal pressure hydrochephalus) which the doctor at Mayo definitely ruled out.

After giving me the two new prescriptions today he told us to make a return appointment for a YEAR FROM NOW !!! I guess that shows how much he wants to help us out!!
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Postby Jrusty » Mon Apr 25, 2005 10:03 pm

Oh Noreen, Your notes are deja vous. Russ and I went through the same problems. The doctors gave us meds but none of them worked and most of them made him drowsy during the day, which of course kept him awake at night. We tried all the urinary meds, Detrol etc. and many of the sedatives. Finally our neuro put him on clonazapam(Klonopin) and amitriptyline (Elavil) these are golden oldies, but they have given Russ quiet nights for about 8 months. The new meds seem to be just too much for his system.

Hope this is a better night![^]
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Postby willru602 » Mon Apr 25, 2005 10:25 pm

Noreen, we use Freedom condom catheters at night on my husband and I hope we never are caught without them. He used to get up and down all during the night and many times falling. At first it was difficult getting used to the cath but now it's a part of our bedtime ritual..putting it on. Hospice furnishes them now but before that we bought them at a local pharmacy which is also a home health care store.

Lack of sleep doesn't make me a very good caregiver next day...so I know what you are going through...hope the meds work and you can get some rest.

Ru cg to husband/Will/65yrs./10yrs.symp./6yrs.dx.
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Postby Pauline in Maine » Wed Apr 27, 2005 11:37 pm

This sounds all too familiar! My husband used to wake and need to urinate nearly every hour from midnight on. That's one story. The other part of the story is that my mother was calling for the same thing at the half hour just opposite my husband! I ended up sleeping in the recliner in the livingroom which would place me halfway between their rooms. Not much sleep was to be had after midnight. [|)] That was then, THIS is now.....

Starting the last of February this year, he changed and only urinates once in 24 hours. More than half the time he never wakes until he feels wet. Needless to say there is no Depends or other diaper which will hold the 20 to 27 ounces of urine he puts out. He got checked out with a urologist while we were in Florida and he has an enlarged prostate! The doctor said it is called "retentive incontinence".

In November my husband will be put on some type of medication to reduce the prostate size. Then his urinary habits will change again and I don't know if I am ready for that. I also use the absorbent bed pads which have a typically light blue waterproof backing. They are great! They can be washed in hot water, soap, and bleach or even autoclaved! Never put fabric softener on them though because that makes them water resistent [V] which is not a good idea.

Pauline
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Postby noreensfl » Thu Apr 28, 2005 5:16 am

Thanks for all the support.

Pauline, Bill has a SLIGHTLY enlarged prostate but I don't think that is causing this night-time wakening. I think I am going to call our MD from Mayo Clinic today and see if he has any suggestions. I'll keep you posted.

Jane, I will ask him about clonazapam(Klonopin) and amitriptyline (Elavil)

Noreen
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Re: Bathroom problems

Postby Jvcephas » Sun Apr 27, 2014 9:23 pm

Hi,
I just found these postings from 2005. My husband got a mixed diagnosis in January 2014 of either CBD or PSP. He has the urinary issues similar to Noreen's description of her husband. He wears depends but does not want to wet them so he pulls his penis out of the leg hole and dribbles on the floor on the way to the bathroom. I cannot get him to understand that it is more work to clean the floor than change depends. Has anyone found a solution to this problem.

JoAnn
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Re: Bathroom problems

Postby boxcar9 » Thu May 15, 2014 3:57 pm

My mom has PSP or CBD or some other equally evil disease.

My best advice is to try to occupy his hands with something else on the way to the bathroom.

I also have a problem with mom wanting to grab & touch things at inappropriate times. I occupy her hands with either a small beanie baby cat or a tissue or paper towel or plastic cup or whatever is available (safety first). Sometimes she even wears gloves at night.

As far as depends go, they have poor performance for anything, or at least for my mom. I purchased a product that comes from denmark called Abena online. They actually list the quantity of fluid their products will hold and there's even a youtube video where it shows how it works & keeps the patient dry after wetting.

(She can still leak out of the Abena, but I think it is a fitting issue; which I try to "rig" it with tape etc, to make it fit her better. She has a pancake flat butt and a large misshaped abdomen due to several major surgeries.)

Try to think outside the box, because verbal instructions are lost on PSP ears. I've had to learn to be a master of distraction and/or a magician. About the time you get something figured out, it will change.

As far as night time wakening: Mom was seen at Mayo Clinic by Dr. Boeve. She also saw a sleep doctor there and he was extremely alarmed at her using Klonopin for sleep & immediately discontinued it. They told us we could use up to 12mg of melatonin safely (we use nature made). Mom now uses trazodone at night for sleep 50mg and 3-6mg of melatonin.

Good luck
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Re: Bathroom problems

Postby Jvcephas » Fri Jan 23, 2015 9:59 pm

Thanks Boxcar,

I lost connection to PSP for a while. Just getting back. My husband's issues are still going on. We see a neurologist who is a movement specialist next week so hopefully he may have some suggestions. My husband has now started taking his penis out of his pants before he tries to get up off the couch or bed. He ends up wetting the bed or couch. Or when he has to have a bowel movement, he will pull his pants down around his knees and then try to walk to the bathroom. With his balance issues this always ends in fall and feces on the carpet. I ask him why he does it and the tells me that he tought he could make it to he bathroom. I respond that that has never worked so why keep tryinging and he has no response. It seems that he can only do or think about one thing at at a time. He does not want to soil his depends so he lowers them. But cannot think ahead about the possible mess this will cause.

Sometimes at the end of the day when that happens, I lose it and turn into the evil witch. I have no family in the area. I think his kids are just grateful that I am here and they don't have to step in. I can deal with all the other symptoms of his disease but the urinary and bowel issues are difficult. It always seems to happen just after I have worked hard to cleaning. My husband is a former athlete and valedictorian and I know it is hard for him not to be in control of his body and his intellect.
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Re: Bathroom problems

Postby Robin » Fri Jan 23, 2015 11:22 pm

This sounds VERY challenging. Unfortunately the cognitive dysfunction (dementia?) that many of our loved one's experience can cause caregivers lots of problems. You might consider joining an Alzheimer's support group, if there's one in your area, or a general dementia caregiver support group.

I know of one caregiver in our support group who draws the line at urinary and bowel incontinence. She says when she starts having to deal with Depends, her spouse will be placed in a care facility. I certainly understand that breaking point.

Good luck,
Robin
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