For those who care for someone with Parkinson's disease
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I'm going to be blunt, here, sorry, but I don't know any other way to say it. We've hit another bump in the PD road-accidents. My husband had an accident the other day and I thought he had, from the way he was acting and the smell, but I wasn't sure so I didn't push it (he can be pretty gassy, so it's hard to tell, plus, I don't want to make things harder than they already are). He went into the bathroom and I assumed he took care of things. He did, all right, but not in the way one would expect. He took off his underwear, rolled it up in a ball of crap and cotton, and shoved it in the bottom of the bathroom trashcan with everything else on top. When I went to empty the trash cans today, I nearly gagged when the wadded up pile came spilling out. I was/am pretty angry. I know that accidents come to many with PD. I can handle it, I think, but am not sure I can handle finding wads of shitty clothing stuffed and hidden away. Now I am wondering if there are more hidden in our house, and it's filthy and unhygienic and a horrible example for our kids. What if one of our kids had emptied that trash can? OMgosh I can't even imagine that one. It's not the accident, but the way he handled it. Since he never has emptied a trash can in our entire married life, he has to know someone would find it when they went to empty the trash-and yet he said nothing to me about it so that I could help or at least not be horrified. And to think that that sodden mess was sitting in our house, buried under papers, attracting bugs and vermin, ugh. I think the time has come for some assistance in the bathroom department. How did you all approach your loved one about wearing some kind of diaper or pad or something so that (1) you don't have to panic and stress if matters come on suddenly and you can't make it to the bathroom and (2) if there is an accident, it's not a horrible mess and you don't throw away the soiled clothing? I can't really see having this conversation with my husband at all. He will deny there is a problem (it was just once, not gonna happen again), deny that he threw his crappy underwear away (although no one else wears that size underwear) , and deny that it was as bad as it was. Thoughts? |
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So sorry. It does happen. One time my husband tried to flush a very soiled depends. I had to put on gloves to fish it out and the padding was in pieces so yuck! I have had a hard time convincing my husband to wear depends. Finally he wears them at night. But he will take them off and can't figure out how to put one back on. This is so hard because they will resist wearing them. If you can't convince him to wear depends, my only suggestion would be to follow him into the bathroom and make sure the mess is cleaned up. Sorry I'm not more help. |
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Patience is the key. Pre Parkinson's, my husband was meticulous about grooming and hygiene. I used that, something he was proud of, and convinced him to wear the briefs (I buy them on line). I also reminded him that wearing the briefs was something he could do for me. Forget flowers - I wanted a clean living room. It takes time, but your husband will get there. |
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Wow, lurking, That seems so difficult. Here's something I'm imagining as an approach: The next time this occurs (maybe it won't) get yourself calm and matter of fact. He needs teaching. Tell him there is something you need to show him. Then, bring him into the bathroom and say something like this. "I figure this is here because you didn't know what else to do with it. Here are gloves, a plastic bag, a twist tie. I'll show you what to do. EVERY time this happens treat it as something he didn't know how to do. I know he can be difficult. But for your self respect you need a way to not just take this on. PD sucks, PD sucks, PD sucks. |
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This disease is SO miserable, people have no idea... I think what I would do is stock the bathroom in an obvious way with a container with plastic bags and/or whatever else is necessary for cleanup, so that he can quietly just do what he needs to do, which is easier if the cleanup supplies are at the ready. If you can convince him to wear Depends underwear or something like that, some kind of diaper, you may even put a diaper genie in the bathroom...I'm sure we're on the way to that in our house too, and that's what I was thinking for us... |
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| Yep, we have all been there. When my husband had his knee replaced it was extra difficult because he is so tall (6'5") and to lift him onto bedpan near impossible. Of course they want patient to walk as soon as possible, but with the PD, and wearing off Rx challenges reared their ugly heads. That is when I decided to address the disposable underwear issue before it was needed for incontinence. I bought six styles and told him we were conducting a trial. He found he was most comfortable in the boxer style and liked the idea it ripped easily up both sides to remove. We still use these on trips, as bathrooms are just not there when you have the urgency to go. Good luck and hang in. |
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I thought of all this this morning when my husband woke me saying "not an emergency, but the trashcan in the bathroom has the wrong size bag, but I took care of it." I didn't immediately jump out of bed and praise him for managing this by himself, so he felt really discounted and unappreciated. He said "you don't even care that I spent all this time cleaning up someone else's feces." Wow. That took the cake. I reminded him that in fact this was his pile of depends pads and used wipes etc in the plastic bag. He still was indignant that I wasn't deeply impressed that he handled it. I ended up telling him. "No. It is yours. I wipe your bottom several times a day when you defecate and don't make a big deal of it. Our housekeeper and the cleaning crew empty that trash can for you several times a week. It's just poop. " I didn't yell, but boy was I irritated. It blew over, but, my goodness, that was a bit much. VV |
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| This is such a depressing subject. My hubby has had PD for 8 years, he's 74. Just in the last year he has not been able to urinate on his own without making a mess. So I help him using a urinal, I have to pull down his pants, hold the urinal then give him a wipe, pull up his pants. I also have to wipe his butt when needed. This has not been an issue except that he has to get help in and out of bed 3 or 4 times a night to pee. This last week he has had a lot of trouble walking with a lot of freezing and once in the bathroom sometimes I just can't even get the urinal in the right position so he can pee in it. Besides everything else this is making me crazy and I feel so guilty for getting upset. He has suggested he wear depends on the few times he wet the bed and when I bought them he didn't mind wearing them the first time. He said he preferred not to wear them everyday. I'm trying to let him make the decision to wear them everyday. PD is not only horrible for the person but it tests us 24/7 as we all know. Somedays I would like to run away for a few days but there is no one who would take care of him like I do and he deserves to be cared for gently and lovingly. I pray everyday for more patience and compassion. |
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A hint about urinals. I have never been able to work with the medical urinals -- so we use big red paint cups from home depot. http://www.homedepot.com/p/HANDy-Paint-Pail-HANDy-16-oz-Red-Plastic-Paint-Cup-with-Magnet-1500-CT/202245288 They are $3 each, have a stable bottom and avery easy to use handle. They don't have a lid but are easy to empty and to clean and rinse out well. I keep one in each bathroom and one by the bedside. |
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| I've also not liked using the urinals and have tried various options. When we go out I've been at a loss as what to use then I started using 16 oz water bottles cutting off the top 3 inches, very carefully so no sharp edges. One will fit nicely in my purse should we need to use it and I just toss it away in the garbage can. I'll look into the paint cups they look like they would work well at home. |
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Our attempts to use the medical bedside commode were an epic failure. I even took the bucket out so he could try to use just that, what a disaster, pee all over the floor. Our laminate floors are buckling from the pee in places, even though I get it off as soon as I see it. To save our mattress, I bought a waterproof liner, then put a waterproof pad over that, followed by two bed pads underneath where his rump is on the bed, and then the sheet. I do more laundry for my husband than all of our kids combined. I like the idea of the Home Depot paint can, that is so creative! Maybe that will help us with this issue as well. |
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| Thank you so much for the red cup solution. Off to Home Depot I go. By the way, my laundry sounds like your loads. My cheap solution is doggie training pads. Under the bottom fitted sheet, over the mattress protector and under the butt area. Found it a lot quicker to send him to my I comfort XLTwin while I whisk off the bottom sheet and pads. Reload the doggy pads and fitted sheet and roll him back to his own bed. One thing about the XL twin fitted sheets....you must buy in July and August because that is what college dorm beds use and they are easy to find then. The also fit most hospital beds. |
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| thanks for tip about XL twin sheets, moonswife. good to know there is a better time of year to look for them. I mail-ordered ours from WalMart. Royale Home 300 count all-cotton sateen fit our hospital bed mattresses well. the price last Nov. was $20/set, in Dec. was $26/set. |
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Moonswife, in a post you said about disposable underwear, "I bought six styles and told him we were conducting a trial. He found he was most comfortable in the boxer style and liked the idea it ripped easily up both sides to remove." Did you have to buy six full packages? What is the name of the boxer style that rips up both sides? I've bought 4 different types and only one is good but it doesn't rip off, I have to cut it on the sides. It gets expensive when they don't work and are not going to be used. |
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| When we changed the type of brief, I donated the unused boxes (and the partial box) to a veteran's shelter. Many organizations use these items. |