This seems an effective place to gain information and support. My spouse is 76, a 3x cancer survivor (cecal to prostate metastasizing into spine) that began in 1999. Sticking to one issue at a time, here goes: one month ago he agreed to wear Depends 100 percent of the time, a very necessary step, and a big one for all of us. That went smoothly.
The next issue regards Depends, in that he refuses to change them often enough. Outside of the odor, there is naturally the damage done to the skin. For instance, he put on a fresh pair Dec. 13 and today, the 16th, still has them on. They leak by this stage, onto his pants and the couch and the bed.
I've asked him tonight if he needs help changing and like a 2 year old, the answer is 'no.'
The change of pants in the bathroom shared with tenants could be arranged and it's a good idea, thanks. I think the "too much effort" applies ATM, coupled with the now rock-solid routine of changing only 3x weekly, occasionally 4. The "too much effort" is mental effort as I see it, because of the agitation when I've explained about the dr.s statement of the necessity of changing (at the very least) 1x daily. He's got a good deal of strength left to him. Thanks for replying and best of luck to you, too.
His culture doesn't include anything like lavalavas, although that is an interesting concept.
The suspenders work better than the belt did.
I spoke with VA Prosthetics Nurse Wednesday directly rather than leaving the sixth note for the PCP to call or schedule an appointment; although the call was about getting grab bars for the bathrooms, she listened and noted that the concern about proper toileting was valid and that the PCP would get the note via his records. It helps that Nurse spent some time with Spouse about a mobility problem last month.
Amazon carries the kits, which run about $30/month, less than I spend on quality diapers.
Best of luck on your husband's catheter; from a hospitalization some years ago, Spouse fought when a catheter was inserted and cut the slit a little, so if there's an option of a catheter not needing insertion, I'm sure he'd be all for it.
The VA provides 100 percent med coverage, and also all Depends (not their name but since Spouse recognizes what they are by that name that's what I call them to him) and about 400 arrived some time ago. The issue is that Spouse won't change them often enough, when I only foresaw that it would be a struggle to get him to wear them. /That/ part went well, at least.
The ultimatum is that the teacher, who also leads the congregation, says he is not to attend the class or the service in a foul state, but that if he can be clean he can attend both. If he only has the energy to clean up for one thing weekly, then attending the services get priority. I do hope that the teacher, who relays information through the lady, does not instigate a blowup with Spouse because Spouse adores attending. The recent hiatus of the 3rd weekly activity there upset him a little.
Spouse got defensive when I told him about the call and it so happened that he had just changed into clean pants and Depends that very morning. The phone call did make a difference and we'll see if it's long lasting. The wool pants to the suit are no longer repairable because they've been washed so many times that they are disintegrating. My sewing repairs do not take into the material. Today is the task of finding a pair of pants that match the jacket well enough to make a presentable suit.
The beige color seat shows stains readily, but the issue arises now: I believe Spouse is not either making it to the bathroom in time, or thinks the Depends will absorb /every little bit of fluid/, so that he doesn't think it imperative to walk as fast as he can to the toilet, shuck down the suspendered pants, and go. Therefore the Depends flood after even one day, because they were fresh this morning and just now at dinner they leaked over the seat cover.
If he's thinking that the situation has improved since he now changes them every other day and they'll handle the extra load, it's a mistake.
Another thing that may be occurring is that the water pills are affecting him more, although to my knowledge the dr. hasn't changed his medications in any way.
One more issue may be that Spouse isn't wearing the Depends correctly. The blue line goes in back, but perhaps he's not seeing it clearly enough or another reason prevents the thing from positioning in the right area. It's discouraging to make the new cover and have this issue still ongoing.
Spouse changed 011020 and now, 011220, has not changed even though I reminded him last night. This morning at breakfast I told him that they stink overwhelmingly and to please change. We shall see if he complies. Rather than an outright 'no' his response was silence, so there's that.
The Chux work well to protect the dining room chair and now the driver's seat in the car needs treatment. I drove Spouse to the 011020 VA appointment, a 34 mile round trip, and my clothing was affected because he had driven the car last. I'm open to suggestions as to protecting the car seat.
Their side is that the $50 chairs continuing to be ruined (because they will not clean them but declare them soiled and "dishonoring the house of prayer" and thus require replacement) is unfair to them because Office Lady says "he's had plenty of chances to change since November 2019 at her first phone call and people don't want to come anymore because of him".
His side is that he wishes to attend any activity, loves the place despite all because he's attended 20 years, and resents being singled out in spite of his unsocial odor and occasional behavior (he can get aggressive with his walker involving anybody in his way when he needs to get someplace, such as the bathroom or simply moving through the crowd. He never hits anybody but looks very intense and that can intimidate.)
My side is that I want him to go there as much as he can.
The setting is a private home that is regularly crowded with wall to wall people on the main worship day, a line for getting food from the buffet tables on this day's free lunch, and hours long religious services and classes that he loves. I've been to them numerous times throughout twenty years and find the place claustrophobic, although others find them "family like" and "bustling in a good way." I can see both points of view. There are many children around for him to tell stories to and he enjoys singing. He can be charming and offers interesting stories.
Best case scenario is that Worship Leader allows him to enter for the class tonight and accepts his cushion for both class and Main Worship Day. Acceptable case scenario is that he is rejected for Thursdays and allowed to come on Main Worship Day. Less acceptable case scenario is that Worship Leader insists that he curtail his stays on Main Worship Day to perhaps 2 hours. Absolute worst case is that they call the cops on him because he was asked not to come, with the corollary of his arrest.
You poor lady! I feel bad for forcing my immaculately clean hubby into the shower after he'd been in bed for 2 days with a cold. Told him he and his room smelled like a dead raccoon. Yes, I was kidding, but I have super sensitive nose and I find, in small places, the smell of 'old' urine just gags me to no end. Hubby has just been coughing, he in no way was 'stinky'.
My mother has an internal catheter and it works just 'OK'. She relies on it too much and doesn't change it often enough, resulting in the same exact thing you have going on. Her apartment just stinks sooooo bad. She just puts up another 'room deodorizer' spray thing which just adds to the layers of smells. She has gotten to the point that she wears a depends plus a couple of pads so she doesn't have to actually 'go to the bathroom' but once a day. And now she's gotten to where if she 'poops' her pants, she just lives with it. Luckily she eats next to nothing, so when she does have bowel incontinence, it could be worse. She's totally nose-blind and once I've taken her somewhere in my car, I have to clean the seat with the carpet cleaner. Her recliner (luckily the only chair she has to sit in) has been saturated so many times with 'overflow'---so your story kind of resonated with me. When she has accidents, she just mops up best she can and adds another layer of blankets to the recliner. Won't let us clean it b/c then she has nowhere to sit. :(
She lives with YB and he said yesterday that she is down to one shower every 2 weeks. So she's only emptying and using a clean cath bag every 2 weeks. Hence, the incredible odor. He was frustrated, as you are...and finally said he told he wouldn't take her anywhere in his new car unless she was clean from the skin out. New depends everyday. Empty the cath bag before it explodes. She got pretty mad, but he's her only chauffeur, so she has to bathe more frequently, if she wants to go anywhere.
Problem with those depends, just like diapers for babies, they DON'T FEEL WET. I did cloth diapers for my kiddoes and all 5 of them were 100% potty trained by 24 months--the feel of a heavy wet cloth diaper was awful. My gkids will wear a disposable for hours and as it sags to the ground and you wrestle it off of them you can feel that the things hold like 6 cups of fluid! & They're not uncomfortable!
It sounds like this place of worship is being very unkind about the chairs. No DOUBT they can be cleaned, and if there are children in this congregation, I cannot fathom that THEY haven't wet or soiled a chair in the act of just being a kid. I'd offer to pay for them to be cleaned, but not replaced. What kind of 'religion' is this? Not very, uh, loving, from my POV. Yes, your hubby needs to be clean and not stink up a whole room, but sounds like the leaders could be a little more forgiving. Judgy people can dishonor a place of worship too. Just doesn't smell.
Sadly, until your HUBBY cares, you are fighting one uphill battle. But, hey, you have the VA sending you depends right and left, that's good, right? You can't usually get them to do anything.
I truly do feel for you. It's a real problem and one that you'd think wouldn't have to get so bad before a person felt uncomfortable and wanted to be cleaned.
The congregation just reached its limit about the situation, and we shall see if the $500 comment is just a threat or if it results in a bill. As for kids, they are so numerous that they use other rooms in the home (which was built as a private home in the suburbs but the congregation bought as a place of worship and also where travelers may stay while Worship Leader lives across the street). The issue is that Spouse sits in the sanctuary, which is a holy place and not to be defiled. The kids undoubtedly have messed on a chair or on the floor in other rooms throughout the years and no issue was made of this, AFAIK.
Yes, the VA supplied about 800 Depends and PCP's nurse is very helpful and understanding about ordering and listening to my problems. Spouse is stoutly in denial that the problem is that bad, still, and I don't know how he manages to sit for long spells at a time in a soggy Depends. I remind him every day to change and have asked if I can help with the answer of 'no.'
Spouse's behavior has changed re the Depends changing, so let's hope there's no backsliding. As of today, the situation improved to the point of Office Lady texting me that "it's better" and so things appear to have died down. I'm hoping their comment of "we'll charge $500 for the chairs" is simply a comment and doesn't result in a bill. It's been good to see that Spouse is actually valued at the place despite the troubles.
I do believe that the sense of needing to go to the bathroom as quickly as possible no matter what activity he's involved in he's put aside, either through overconfidence in Depends holding a full stream or deadening of the sensory nerves, which is something his doctors warned of after his 3rd bout of chemo/rad.
Just curious if he drives himself to the services? Could you attend the services with him to possibly intervene and help him to the the restroom there?
Im sure you’ve tried many tactics...but one old saying from my Gran comes to mind: “Cleanliness is next to Godliness.”
I can understand you’re in tough spot. You’re up against a man who is considerably larger than you, who by your own words can be intimidating. You can’t hold him down and change him. Perhaps you even fear him. You try to excuse, convince and cajole, but he can’t understand that he’s offensive, and won’t comply with you. As cwillie has said what you put up with, other people shouldn’t have to. If he won’t do it just out of love/respect for you, then maybe the stakes aren’t high enough for him. I would not let him attend any more church services, or go anywhere other than a doctors office. Tell him “Cleanliness is next to Godliness” and they will not let you in unless you’re clean. So he pouts, or is in a funk. Whatever. Until he has a psych evaluation, it’s really not fair to him to knowingly put him in humiliating situations.
Thers an elderly lady that volunteers at the same nonprofit I do. She has a terrible odor, and I’ve seen the top of depends peeking out at her waistband. Most of the younger volunteers don’t know what the smell is, but I sure do. They just know it’s bad and avoid her and won’t work with her. I dread showing up on a day she’s there and I can’t sit in any chairs she’s used. These “kids” aren’t as benevolent as your “church people”. Is that how you want people to feel about him? Dreading he’ll be there? Raise the stakes. If he won’t do it for you, maybe he will for God.
Im sorry if I’m coming across as harsh. I am very sensitive to odors and your situation would absolutely kill me, so it make my head reel. You sound like a loving & caring wife and I am so sorry he’s putting you through this.
As of today, the situation improved to the point of Office Lady texting me that "it's better" and so things appear to have died down. I'm hoping their comment of "we'll charge $500 for the chairs" is simply a comment and doesn't result in a bill. It's been good to see that Spouse is actually valued at the place despite the troubles.
Thursday night Spouse was extra careful to change Depends directly prior to the class and nothing was said to him there, so the best case scenario came to pass. On the day I told him of the phone call, I plucked the soiled Chux he'd sat on earlier and held it under his nose to say "this is what you smell like, do you smell that?" and he said no.
Pronker, your husband deserves compassion and empathy, that is a given. And so do you because you are the spouse left to deal with all of this. At the end if the day, your husband doesn’t have the right to go in to a private home or a business and repeatedly cause property damage at someone else’s expense. These meetings he attends are in a private home not a church. If this was a 1 time thing, I think we would all agree that these things happen and the church should replace the chair and call it a day. But this has happened 10 times in 6 months. Are you going to pay the $500 to replace the chairs?
I may have given the wrong impression about the private home, because it was built in a suburban development as one, but the congregation bought the home and it's used as a place of worship and also for when travelers of the same denomination need a place to stay. Worship Leader lives just across the street with his family.
It's a good thing for human beings to make accommodations for other human beings in need or with disabilities. Within reason. It is not a good thing to make accommodations for people who are capable of cleanliness but who choose to keep themselves unclean and demand that others accept it. That is unreasonable, in my opinion.
So sorry that you are going through this Pronker. If it were me, I would explain all of this to my DH and then put my foot down and refuse to take him out unless he abides by the rules society demands. Wishing you good luck moving forward.
I am gobsmacked that a female would call you and no one would talk directly to him. Maybe, just maybe an elder could have a heart to heart about the importance of setting a good example for the youngsters and get through to him that it really is difficult to be around him.
My dad wouldn't brush his teeth and it was putrid. You couldn't even be in a car with the windows rolled up. No one would tell him, but they would move away and make short work of talking to him. He thought I was lying about it. Once he finally caved to my constant pressure to brush and get his teeth dealt with he actually saw how much more willing people were to have conversations with him, it was impacting his social life terribly. He finally realized that he was lonely and it was all about something that he had control over.
I would call that woman and tell her to get some elders on board to help him understand that his choices are negatively impacting everyone around him. Make them be the bad guys if they are going to boot him over this.
I would saturate the car seat with white vinegar and let it dry. That will kill the enzymes that cause the odor and disinfect the fabric. I would get a washable chux and keep that on the seat and cover that with a disposable. Keeping a box of them in car. The VA will provide those with the disposable underwear, just ask the nurse.
I hope you find something that gets him to take better care of himself. You are a trooper! HUGS!!
At the conclusion of Sunday dinner, he rose swiftly from the table to use the bathroom; the Chux on the dining chairseat showed and absorbed the Depends overflow. This gave insight to the sequence of flow happening quickly, being noticed and acted upon, but too late to stop accidents. Between the diuretics and the diarrhea, he doesn't have an easy life.
Last night at dinner, Spouse stank after not changing since Thursday a.m. I lit incense in order to be able to dine with him and related the text. "Don't these people have anything better to do?" was his angry response. He remembered about the incident, claimed there was no mess on either the chair seat or his special cushion (there was urine on the pants but not #2), and it's up in the air if Office Lady just smelled him (his wet farts or simply urine in the Depends, which is bad enough in itself). The weekend is upon us again and we shall see what transpires.
This is the plateau. VA delivered 5 more boxes of Depends yesterday, which makes about 1,000 in the garage.
Helpful advice from this site is greatly appreciated, thanks to all who replied. :) A happy holiday weekend to those in the US.
The regimen of changing of Depends remains the same because Spouse doesn't change them often enough and I resort to candles, opening windows and spraying oil of eucalyptus on myself to sniff when dining with him.
On Sunday, the 26th of April, the occasional problem of overwhelming the Depends occurred again. Spouse lay down after a meal and could not make it into the bathroom in time without soiling the pants. It seems he sleeps so heavily that he doesn't notice everything is starting and then he cannot move fast enough to avoid a mess.
What made this worse is that Youngest was visiting so pleasantly and then had to witness this. Spouse became agitated and shouted at the poor young man who held it together very well. He offered to help me and eventually all was cleared up. Before Youngest left for home, Spouse was speaking normally and they had a pleasant chat.
Something different since stay in place began is that Spouse changes Depends when I ask him to, although not the pants. The pants still stink, but not as much as they do with the Depends inside them.