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Topic I have to vent re: urinary incontinence Go to previous topic Go to next topic Go to higher level

By jaxrock On 2012.05.25 10:56
In spite of my husband wearing the ultimate protective underwear at night, Tranquility overnight pullups, I had to run up to the dry cleaners unexpectedly this morning with our comforter - and wash all our bedding - Not an unusual experience by any means, and I'm used to it on OUR bed - even have a waterproof mattress cover for "accidents"................But, this was from our guest room bed..........for some reason, this really upset me..............He never sleeps in that bed, since it's upstairs......but, for some reason, he did last night................And we're having overnight guests during this weekend!
I think the upsetting thing also is - he doesn't seem to realize the scope of this...even though he's fine mentally......just apathetic...God bless him...I don't want him unduly stressed for any reason, but I am!

OK, I think I'll be ok................

Crying on the way to the dry cleaners didn't help, but, maybe this post will....
Thanks for "listening"............

By mylove On 2012.05.25 11:10
Totally understand. It's a rock and hard place moment... you can't be mad at him, but it doesn't negate your stress!

We hear you... we understand. Hugs to you. Deep breath. Hope the rest of your weekend goes off better than the start, and you, your hubby and your guests have a good time.

By seawench On 2012.05.25 15:57
A couple of years ago my hubby had rectal surgery and once he started going it was a solid ribbon for 36 hrs. Ugh the things we do for our sweeties!. since we had two 18yr old cats and My hubby the bedding rule in our house is now - Everything has to be washable IN my home washer. Finding comforters that were pretty, easily washable, easily dried was a challenge but such a stress reliever that I can turn the bedding around in 1.5 hrs - Reduce your stress makers wherever and however you can.

Hugs
Seawench

P.S. Take a deep breath and enjoy your guests- they will love you anyway they find you.

By parkinit On 2012.05.25 23:25
seawench -

You make a good point. Sometimes our worst enemies are ourselves with our high expectations to maintain a lifestyle of someone who doesn't have a spouse with PD. We need to allow ourselves to relax - such as purchasing bedding that is only washable. I think many of us get into the trap of holding ourselves to a higher standard than we should and not allow ourselves to relax those standards in order to survive in our households.

By jaxrock On 2012.05.26 08:15
Thank you all - for those comforting and smart words....

I still don't understand why I became so upset over that situation......but it really threw me, for some reason..

Yes, washable bedding is one of the answers.....I'm prepared for accidents on our bed, but, had nothing in place on the guest room bed....but I will!

I'll do anything for my husband.........I can't believe the suffering and indignities someone with Parkinsons has to go through............but, sometimes the stress and frustrations take over my good nature, I guess.

Let's all have a great holiday weekend....

Again, thanks!

By seawench On 2012.05.26 10:30
It wasn't the bedding, it was a build up of everything you deal with every day and the grief that you experience continually. this was just the focal point so that you could release it. Release is a good thing and if we don't allow it, it will find a way.

I was in a yoga class and at the end where we are just laying there supposedly peaceful I was sobbing like a baby. the instructor says that happens alot. I was so relaxed that all my control was gone and the emotions found an escape. Fortunately she already knew my story.

seawench

By moonswife On 2012.05.26 12:44
Oh jaxrock, I sympathize.
I too use all wash at home bedding and also buy doubles so I can change without him realizing. He gets upset when he has an accident and if he gets upset his stomach clenches and his pills do not get to go to work as fast....which leads to more problems.

Closet screams are not unusual in this house.

Company should understand what we go thru for the ADL on a regular basis.

By plcpainter On 2012.05.27 17:07
Oh my! Been there! Good suggestions and comments, esp. from seawench re: the accumulative buildup of stress. An in-home caregiver we had started using Overnight Teva pads and putting them inside the Overnight Depends. This really helped! We also use the bed pads both under the sheet and on top of the bottom sheet! Still had accidents but it cut down of the loads of wash considerably. FWIW.

By parkinit On 2012.05.27 20:30
In all this discussion, I have to ask if any of you have tried foley catheters? We stuck with it until we found the right size, because if you don't they will leak, but we have been able to use the paper briefs "just in case" and the overnight, external foley catheter. It has been a lifesaver for us, as he was getting up 4-6 times a night to urinate and had to have help to do this. Now, he just lays in bed and depends on the catheter and bag to catch everything.

By jaxrock On 2012.05.31 08:42
Yes, it certainly was caused by a build-up of stress.....................

I'm trying to not be so hard on myself through all of this...I guess I have quite a way to go before things like this don't bother me so badly.

I appreciate, too, the suggestions made............

By Jane On 2012.06.04 12:48
I just need to vent after a rough weekend. I am involved in giving my niece a wedding shower which is taking up some of my attention. I told my husband who is a PWP that this Saturday and the next weekend I am going to be consumed with the shower. I have encouraged him to get a home health person for the saturday night that I will be staying at the motel where the party is to be held. He says he does not need it. But for the last three evenings he has woken me up in the middle of the night needing my assistance. He hasn't done this for several months. I am trying to tell my self that he cannot control this, it is the Parkinson's. Yet I feel most crazy when it looks like to me that the timing of the symptoms coincides with a possible subconscious message to me to feel guilty for wanting to give my niece a shower. I hate this disease!!

By LOHENGR1N On 2012.06.04 15:13
We all hate this disease right along with you. I'm not going to say you don't need to vent, you do! We all do! (G-d knows I vent often!) I'm just going to give my uninvolved slant on the problem you and your husband are now facing. I know changes are inevitable and the world outside Parkinson's goes on. I also know that we patients can react to changes. I know we patients sometimes don't think we need help doing things. That said when facing a disruption in schedules and routines our Parkinson's can and does act up or present more markedly. This seems natural with the disease. When things like that happen caregivers can think it is subconscious subterfuge. They feel it is an attempt to be made to feel guilty of going. I hate this disease because it wins...it always wins! I hate it because concessions mean it is winning and there is nothing I can do about it. I think your husband might not want to set up help for while you are going to be away because it shows him he's losing. That's a hard thing to face for any of us. I believe he wants you to give your niece a great shower, he wants you to have fun and not worry about him. He really would like to be able to stay home alone and you to come home to him there having functioned well while you were away. However now as time approaches for the event he's nervous he might not be able to do that and Parkinson's is making the most of the opportunity to screw things up. As We both said before WE HATE THIS DISEASE! not only for what it does to the patients but also the caregivers/partners and the interpersonal relationships involved. Take care, best of luck and hang in there

By jaxrock On 2012.06.04 15:57
I was going to say basically what Lohengrin said......

I've noticed when I have something new and different planned for myself, my husband's symptoms of PD flare.......can't do anything for himself, becomes fearful and anxious, regresses to become a "patient" and "victim"....

So far, we've managed it this way............constant reassurance that he's OK...that there's nothing to fear...........that nothing will be changing.....I hold his hands a lot............and hug him...........to be sure he knows that he's "safe" I may have our daughter telephone him while I'm away, or get some movies from the library for him to watch........and I leave large notes to remind him of his pill timing, etc.....I also call him from my cell phone during the hours I may be busy or away from the house - just to say HI

It's so frustrating to see him change so rapidly when pressures come up..but, I really know he's not doing it for any hidden reason. I don't think he actually has the capacity to even think that way at this point....

Please try not to take his reactions personally......It's hard, but very necessary for your own health and happiness....I know......I'm tested quite a bit myself....

By Jane On 2012.06.04 19:09
Thank you so much. Both of your replies have helped me a lot. Now I feel I can go home from work and interact with my husband in a more humane manner.

By seawench On 2012.06.08 09:50
This last wed it all came full circle as we were trying to head out the door to church. I needed to be there at a specific time due to a commitment and as he was all bundled up and ready to get in the car he had a blowout. Yuck!!! We were on time for church but too late for my meeting. I am stressing because starting next week I have a 10 week commitment. I am going to have to find some work arounds. There maybe times where he will just have to stay at home - not my first choice. Sadly I am realizing that next year I may have to take a pass on this project. When I got home that night I got onto my facebook and found this.

"I have decided that it's okay for my life to get messy, as long as I don't live as though life is a mess."- Crystelle Knox

I know that she means some stuff that is going on in her family's life but in many ways I can relate. Life gets messy and we fall apart sometimes but all in all I am trying not to live as if that's all it's about. sure we have to wash linens and sometimes miss meetings but I try to not be rigid in how I feel about it and hold close those precious things like our morning hug after we have dressed him.

I loved her saying and just wanted to share.

By jaxrock On 2012.06.08 14:16
What a great quote...........

I've written it down..........and I'll keep it as a reminder...

Thanks for sharing

By jaxrock On 2012.09.11 09:15
Well, another morning of washing wet sheets, blankets........

I assume this nighttime incontinence will never get any better.......am I right?

It's now happening almost every night............and the products he's wearing don't capture all of the fluids...........

I'm sad................

By seawench On 2012.09.11 17:15
We are actually doing okay at night. He can reach the urinal, and I have perfected the art of handing it to him without completely waking up. But we are having a challenge during the day as he can't walk to and use the bathroom unsupervised due to balance problems and orthostatic hypotension. So he doesn't always call me, or not soon enough ect, ect.... As a result I am changing products, clothing, protective pads on chairs and so on. I did try to encourage him to be more vocal in his needs it's actually a lot less work to walk him to the bathroom than to have to strip and clean him and everything else. If it doesn't improve we will have to go to the condom caths with bags- they are ugly but they work!

We recently traveled to Seattle (in the car) and we used the bag so we could get a good nights sleep and no hassel travel - it was a wise choice. We were rested and we traveled quickly not having to stop for anything more than for lunch and a brief respite at the outlet mall. (Smile)

I'm pushing him to keep being active and to use the tools we have and be grateful for the freeedom the toools give us instead of embarrased by them. At the Port Townsend Wooden Boat Festival, I found a man who was making and selling purses and totes out of old sails. He is going to make us some really cool bibs out of the brightly colored windsurfing sails. My husband is a sailor and he will like these much better than the terry cloth ones I made. If you have to use it make it cool!
Seawench

By parkinit On 2012.09.12 23:44
Seawench -

I like your attitude!

By carman96 On 2012.09.16 12:35
I can sure relate to the wet bedding. I spent yesterday washing all of the bedding on my husbands bed. We sleep in different bedrooms since I can't get any sleep with him in the same bed due to all the thrashing around and getting up he does.
The part that was frustrating was he didn't even tell me that the entire bed was wet until I questioned him about his wet pants! I had already stripped my own bed and was starting to wash my sheets and mattress pad. So it was an all day washing marathon! This doesn't happen very often though so no depends or anything. He does have accidents on the way to the bathroom at times.

By lilflower On 2012.09.23 20:36
Condom caths work good with a leg bag or a bed bag. But accidents still happen so we take care of it and move on.

By parkinit On 2012.09.24 18:32
Yes, you still have accidents with condom caths, but we have a caregiver who came up with a wonderful suggestion.

Do any of you know what draw sheets are? They are simply a sheet folded over several times so you can assist a person by pulling them over closer to the edge of the bed, etc. Here is a link with a picture of a draw sheet: http://www.hadnet.org.uk/multimedia/_shop95/Shop/Continence/Protectors/wash-bed-draw-sheet_default_994_1.jpg

You can use regular sheets folded snugly under the mattress in lieu of purchasing a special sheet. We fold our sheets in half and then fourths and put an under pad (leak proof padding - may be disposable) between the sheet layers. This has saved numerous massive sheet washings and we just have to replace the draw sheet and under pad.

I found this suggestion genius (from our caregiver), yet very simple to implement!

By jaxrock On 2012.11.10 11:46
After months of products failing to keep my husband dry at night, and my having to wash bedding almost every morning, we've discovered something that works!

Abena Abri Flex pull on briefs............perfect! no leaking, he's dry when he awakes in the morning, even tho he has urinary incontinece throughout the night... This company also makes a wonderful booster pad........which can be used with other absorbent underwear that we have in our closet...(for nighttime use)

This underwear contains a full 75 fluid oz............amazing.

I hope this information helps others who may be struggling with this vexing - and frustrating - problem...


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