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Since, it appears that the husband is not mentally capable of helping avoid serious harm to his health, I'd get a legal consult. If the person who is legally responsible for him does not intervene, I'd be concerned with legal consequences. Have you inquired what happens if you have to take him to an ER and they see what has happened to him? I'd treat it as an emergency and get a legal consult. I'd be concerned that the primary doctor is not responding.
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pronker Jul 2019
Thanks for your reply. The PCP is, I believe, more concerned with regulating the 18 daily sorts of meds Spouse is on for atrial fib, congestive heart failure, diabetes needing 2 injections daily, and tracking the blood checks to make sure the cancer, which has metastasized to the spine, doesn't start to gallop again after 3x. The incontinence results from the initial 1999 operation, which removed 1/3 of the colon, and deadening of the nerves relating to the rad and chemo treatments that the drs. warned about.
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Well, I must admit this would not fly with me. My step father is in diapers, went to pick him, said, go the bathroom before we leave...No he said, I'll just poop in my diaper..my answer was No, if you don't start using the bathroom when you can and need to, you will be moved from AL to a nursing home. That ended that, he knew that I was serious.
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Unitetogether Jul 2019
Good for you. Sometimes we have to put our foot down since were the "boss" now. I have to worry that when my husband is OUT, he has a accident.. Glad he only wants to go to doctor appointments I guess..
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My head hurts from where I just banged it on the edge of the desk.

"My husband will not allow frequent enough changes of his Depends."
"Here are 400 more Depends."

It's the exquisite, poignantly comic torture of a response that does have an association with, but is in no way a solution to, your problem.
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Ahmijoy Jul 2019
Oh, CM. You are so right and I feel so badly for poor Pronker. She has been posting updates on this for 8 months or so. Her original post was in December of 2018. Hubby has agreed since then to change (maybe) once every three days or so. Which, when I think about it, makes me burn and itch in places in which I sincerely don’t want to be doing so. At his rate, the 400 diapers should last what, three years? Ugh. Pronker has my sympathies.
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Update: VA did not call but they did send about 400 Depends, which is not the brand name but it's the one Spouse has heard of so it's what I call them to him. Next is calling the PCP's nurse again. I'm tracking on the calendar when they're changed.
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Update after 8 months: Spouse has settled into his routine of changing 2-3 times weekly. About 50 percent of the time I remind him and that's unchanged since last month. The PCP hasn't addressed the problem and during the next VA clinic visit tomorrow, I'll send another note to him and grab his nurse. The stank is pretty bad.
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Ahmijoy Jul 2019
Pronker, if after 8 months, your husband is still not bothered by wearing stinking, heavy, squishy, wet incontinence briefs that certainly must make his skin and other parts burn and itch, there really is nothing you can do short of physically restraining him and tearing the briefs off. It doesn’t sound like he can be convinced or reasoned with. Make sure to ask the doctor or the nurse to keep in mind a wound care physician and an infectious diseases specialist because at some point he will develop open sores and infections, if those aren’t already brewing in and on him. You have my sympathy for having to deal with this.
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Update after 7 months: Today I left a note for PCP re the not changing Depends often enough. One was fresh on Saturday morning and Tuesday night stained the pants and kitchen chair, which has a washable pad. Spouse was upset even though "The Depends Smell Bad" phrase was used. It would seem that if a person has junk, allowing the junk to sit in ammonia would be agonizing.
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Ahmijoy Jun 2019
Not only that, but marinating in urine can cause infections. My husband is currently in the hospital with MRSA bacterial blood infection. Not good.

I’m glad you’ve contacted the PCP. This just is not normal.
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I think a male aide would help if that's possible. Sometimes they do better for strangers, dont know why. Good luck!
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pronker May 2019
It may be in future, but it doesn't seem likely now. The VA might provide an aide; at this stage, Spouse medicates, showers, feeds himself, etc., and the big issue of toileting is bothersome yet not insurmountable. I agree with you that after 35 years together, my input is disregarded a great deal. Like everyone, we have lots of baggage as a couple. He was belligerent with a female VA nurse giving advice on the phone the other day and with a female bank officer a month back. I would question that if the male aide were here, he might fight him, or at least his help.

Thanks for replying.
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Update after 6 months: Upon rethinking the phrasing of the request "Please change the Depends", I changed the wording to four simple words: "The Depends smell bad." He had a fresh one Thursday and Saturday it stank from four feet away. I could see the four words percolate as he realized what they meant and after two minutes of silence while I continued washing the dishes, he changed the subject. This morning the bin held the dirty Depends and if this continues, that's great. I'll whittle the time between changes.
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You may want to try plastic garbage bags or tarps on the places that he sits or lays on. That helps considerably with cleaning up issues. As for the depends issue, I am sorry, I just can't help you there. (edit: But from what I have read further down, it sounds like that you are trying is working out pretty good).
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Ahmijoy May 2019
Just want to add, be very careful when using garbage bags on furniture. They are very slippery. They could slide and cause him to fall out of the chair.
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Pronker, to me, something is just not right with someone who refuses to change their undergarment/depends, etc. when necessary. I agree about requesting a mental evaluation to see what's going on. I recall that my LO used to have odd reactions to putting on clean clothes or having her linens changed. She would flat out refuse and cry if I tried to put clean sheets on the bed. Her sheets were so dirty that they had worn thread bare! The dirt was gritty. Yet, she cried when I insisted on clean sheets. Eventually, her dementia was diagnosed.

With some conditions, writing notes for the patient is not helpful. They don't think of reading a note and even if they did, they may not be able to process it. Plus, with cognitive decline, proper judgment and reasoning are declining. He may not be able to really make these decisions for himself. I'd also get a legal consult to find out your rights and responsibilities too.
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pronker May 2019
Great advice, thanks for the legal consult part especially. Spouse is okay with changing linens, and the changing clothes part is improving on my end because I'm more vigilant about grabbing his dirty duds when he removes them. I realize I have to step up my game.

I'm sorry your LO resisted so strongly. That must have been distressing to have seen her cry.

Spouse's proper judgment and reasoning are in decline, especially about paying bills. The VA help office has officers who've been especially effective in advising during these troubling events.
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Hi, My husband let's me change him but I know he hates that I have to do it for him. It has to be done. Tell your husband you don't want to smell it and have the aroma in the house. And, the red soars of course. That's what I hate the most, knowing I will be "changing" my husband for the rest of his life. I cry about it sometimes. He. Needs to do what he HAS to just like you. Good luck, and hang in there.
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pronker May 2019
Hi, thanks for the anecdote and advice. It's the ongoing processes of our bodies and just so unrelenting. I don't blame you for grieving over the necessity of it, because after doing child care for almost 20 years, the difference between changing a 30 pound child and 240 pound adult gets a person down. He's still changing them himself and has improved over the six months since starting to wear Depends 100 percent of the time.

I hope your husband heeds you and appreciates your help. He might not say it but demonstrate it otherwise; when pride gets offended, it's darn hard to get around.
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You don’t say anything about him having dementia, but it sounds like he needs to be evaluated. I can’t imagine wearing a stinking, sopping, heavy, “squishy” thing between my legs for days on end. The itching from the urine against my skin would drive me crazy. Are you firm with him or do you back down when he resists? Unless your boarders are in a completely different area, they have to notice the smell as well. And, it’s unsanitary.

Has his doctor explained to him that he needs to change at least every few hours? If the nurse is a woman, he may just have e decided no mere woman is going to tell him what to do. He knows if he throws a hissy, you’ll leave him be.

If he continues resisting, tell him you’re hiring a male aide built like a linebacker to “help” him change. And I’m only half kidding.
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pronker May 2019
Good response, thanks. My, it's difficult to imagine wearing Depends that long even though "we're an adult once and a child twice," as Gran used to say, isn't it? Last evening, I suggested a change due to odor but no leaking and he agreed, to make the change every other day. The boarders are in bedrooms where they seem content to live peaceably if not working outside the home.

Yes, the nurse is well known to him and the issue of advice coming from a female has been considered; his care team includes several females with the PCP being male. Contacting the PCP is the next step.

"My topics" contain dementia/ALZ, elder law, housing and so forth, but I didn't put them on the profile.
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Six Months Update: Spouse 50 percent of the time goes three days without a change, so I called VA. Nurse suggested putting up a note to remind Spouse to change daily to reinforce my verbal reminders. The bin is dark brown, so I painted in white "daily" on it prior to informing Spouse that Nurse said that UTIs were common if Depends remain unchanged often and also skin damage could occur. Spouse bulled, "Well, I'm not doing that." After six months, the sitch is about 50 percent better than at the beginning, when he'd not change until they leaked down the pantlegs worse than now. The smell remains, but it is lessened.

I observe a pattern: change on Friday, go through to Monday (when the odor gets especially pungent, to my objection but not his), change Monday about half the time with my insistence, the other half he changes without reminder), change Wednesday, and Friday once more. Before usage began, the concern was that he'd refuse to wear Depends at all. Not changing often enough was unforeseen by me.
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Try telling him it could cause a severe infection and his friend there may have to ve amputated. Get a Doc to go along with it.
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pronker Mar 2019
Great idea, ha!
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Update: Since beginning 24/7 wearing of Depends in November, I can see that I need to constantly remind about changing after initially being hopeful he would take over responsibility all the time. The Depends were fresh on Saturday, leaked Monday onto the washable dining room chair seat and when I reminded him about changing, Spouse said, "I just did that." I said, "It's been a few days and they are designed for daily changes, at least." He changed last night before bed.

I'm considering a chart on the disposal bin, or something he can check off when they're changed to give a sort of pat on the back. The alternative is to keep on keeping on reminding, which I am willing to do.
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Update: After 3 months, changing is more often, occasionally with my prompting, but most time not. It's still a challenge for me to grab his stained clothing before he puts it on again. He's had several outings with no leaks or odor, even with people sitting right beside him at movie theaters and so forth, which hasn't been the case for about 1 year.
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It was indeed a push in the right direction! Spouse seems slow on the uptake re changing often enough, yet there's progress in 2 months that is encouraging. He seems okay with the dexterity needed in the changing process, thanks for asking.
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Update after 2 mos. Depends usage: Spouse changes more readily. I believe the phone call from the place of worship's leader tilted the scales; although Spouse did not tell me the reason for the call afterwards, a call is rare from there and I noticed the uptick in cooperation directly afterwards.
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Countrymouse Jan 2019
Now that is what I call God working in mysterious ways! But if he helped perform a wonder, all thanks to that pastor.

Will you now be able to get spouse into a good changing routine, do you think? If you can help him form a habit it might save him slipping back.

Also, I wondered: is it difficult or uncomfortable for him to make the required effort?
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I didn't ask, just like with a 2 year old, but just said, "mom, let's go change". For me it worked to have her sit on the bedside commode. I took the bowl off the bottom and had towels on the floor under it. She would pull down her pants, sit down and I be would be able to we her from under the commode. Then put the new depends on. It was just party of our day...4 times day. It made getting dressed in the morning and into pj at night easier too.
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pronker Dec 2018
Thank you for this tip! It really sounds usable when Spouse comes to the point of commoding; my grandma used a commode. I didn't caregive for her, but the idea you have sure sounds great and I can picture the technique.
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He needs help!! Not only using depends but a lesson in hygiene. Was he like this at all before using the depends?[
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pronker Dec 2018
He seems in general denial of the icontinence symptoms worsening at an accelerated rate over the past 3 months. Generally, he is congenial and where he goes, nobody gets that close to him to be offended by the odor, except in the place of worship. That person relaying the offense from the complainer to me which I passed along to him has said there's an improvement over the past month. He's there about 3x weekly.

The lessons in hygiene seem to penetrate; a lot of the issue is ingrained conservatism about the Depends, but when I told him the VA sent 300, he appeared to feel more at ease that he wouldn't 'run out.' He's been a 1x weekly bath person for about 10 years. He's sedentary and was even before the cancer.

Since posting here, there's improvement in the general state of maybe 5 percent? For instance, I reminded him on Tuesday to change pants and Depends without any obstacle.
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I know that my mother with vascular dementia lost awareness of what was going on down there pretty early on in her illness, she could and did still use the toilet when I took her but didn't seem aware that she had to go or if she had wet her pullup. She also lost control of her bowels pretty early on too - I hope you don't have to face that anytime soon.
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pronker Dec 2018
Thanks for the anecdote re the 'on and off again' nature of the urine problem - his bowel control is more established and he's more upset when an accident like that happens. I notice that when that part occurs, he changes right away. That part does not happen to any great volume when it does, unlike the urine part, which seems to go on forever. I'm thinking that he's experimenting with the entire situation for the first month, what he can do with the Depends and what he can't.

He has hobbies such as Minesweeper on the internet and doing Sudoku in puzzle books and really gets into them; it's likely that, like a 4 year old, the concentration is so absolute that bowel/bladder control falls by the wayside.
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@cwillie - Yes, he goes to the toilet - but our son said he heard him just the other day void into the Depends while they two were talking. He did not even try to make it into the bathroom, which is 10 feet down the hall. It seems he likes the Depends, realizes they're necessary, but doesn't realize his odor or skin danger. Thanks for the tip. Outside help he is iffy about - someone at the place of worship told me to tell him about the problem after a ghastly incident in the sanctuary and he /did/ listen to that; his dentist mentioned it and it didn't make an impression.

@rocketjcat Very good about checking the skin! That's a help; and yes, I've toned down asking questions but sometimes they just pop out. The phrase "It sounds like you x" places a level between a bald question and a more delicate one.

@ahmijoy I suspect dementia and his coverage is VA which is thorough with multiple appointments monthly. I'm trying to think of what an aide would do - he bathes himself; medicates himself; dresses himself but doesn't notice/care about the urine stained pants, etc., so that's an issue. I grab the dirty pants whenever possible and it's a struggle to keep ahead because he wears them for days at a time, though he has plenty of clean ones.

Thanks, everyone for the specialized help! Merry Christmas to you!
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Pronker, you don’t mention it, but does he have dementia as well? Do you help him bathe? If so, simply make the used Depends “disappear”. If he hasn’t been formally diagnosed with dementia, maybe it’s time to see his doctor. There are medications to make this easier. Dirty briefs can cause skin and bladder infections, but you already know that.

Have you tried having an aide come in to help? Sometimes they will listen to an aide before they listen to us.
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I agree with Cwillie...I had to change the way I approached this with Mom. No more “Do you need to go potty?” “Are your panties wet?” The answer is always No, even when I know she’s wet. I don’t know if she just can’t feel the wetness, doesn’t want to be cold when her pants come off, I have no idea. So now it’s not a question. “Let’s sit on the toilet for a few minutes and try”. Or “The girls are here to change your pants and get you cozy warm again”. No questions asked.
How about “The doctor told me I have to check your skin daily now, so we have to do it now in the bathroom. Let’s go.”
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Does he never attempt to use the toilet at all or bathe or change his clothes (all very common problems with dementia)? There comes a time when you don't ask, you tell. Follow him in to the bathroom and hand him a clean pull up. Ditto at night. You might get some good tips by searching the forum for refusing to bathe/shower/change. Bringing in outside help to get him in the shower might be a good first step.
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