Follow
Share

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.'

Find Care & Housing
Update after 11.5 months: Yesterday VA sent 200 more Depends.
Helpful Answer (0)
Reply to pronker
Report

First, here's a hug. There is a catheter-like collecting tube that just fits over the tip of the penis like a little condom hat. (It does not penetrate the penis.) There are urine bags to collect the urine from the condom/cap tube. A collecting bag straps to the leg so the bag would need emptied a couple of times a day (500 ml) but he wouldn't be wet, it wouldn't show, and he could wear undershorts instead of a diaper. My husband is going on two years with a regular catheter because he has prostrate trouble so the little cap can't work for him. Perhaps if the husband tries the "cap" and is given a choice, and has to pay for them, he might just prefer to change his pants because he doesn't know just how lucky he is! A nurse changes my husband's Foley Bag (cath tube and bag) every six weeks, so you don't need a huge supply of bags, just the condom catheters. (They empty from a tube on the bottom.)
Amazon carries the kits, which run about $30/month, less than I spend on quality diapers.
Helpful Answer (1)
Reply to MrsHoover
Report
pronker Oct 16, 2019
Thanks for the helpful information, Mrs. Hoover. Today was a VA visit with the PCP and for the first time, Spouse spoke with a psychiatrist whom the PCP referred who, I hope, will shed some insight on why the issue remains after nearly 1 year.

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.
(0)
Report
Update after 11 months: Spouse's routine remains unchanged varying from 3-4x weekly switching out the Depends and last night the pants and dining room chair seat pad again got soaked. Today was a VA clinic visit, so I left a note not for the PCP but for his nurse, who called me in for a consult about 5 minutes after I left the note at the front desk. I discussed the problem with her and she said that she would put in for a psychiatrist visit via the PCP.
Helpful Answer (1)
Reply to pronker
Report

Update after 10 months: Spouse varies between changing Depends 3x or even 2x weekly with changing 4x weekly. He seems on occasion to realize he needs to move swiftly to the toilet and that means the Depends have a chance to do what they're engineered for, catching leaks but not a full flood. Now and then, the BM urge overwhelms and the Depends really get a workout and if the Depends are already at nearly full capacity with urine, then the extra mess gets onto the pants, floor, socks, etc. That does not happen often.

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.
Helpful Answer (0)
Reply to pronker
Report

Update with a positive step: Spouse was having pants trouble, in that he couldn't, on numerous occasions, : 1. undo the belt and zipper, 2. slide pants down, 3. position over the toilet quickly enough to avoid bowel accidents on the toilet seat and in pants, etc., due to arthritis and cancer metastasizing to the spine. Yesterday, he acknowledged the problem and bought stretchy suspenders, which allow swift sliding off the shoulders and quicker positioning. This adds a step in caregiving due to my fastening the suspenders for him in mornings; we shall see if he can learn how and where the fasteners need to go.

His culture doesn't include anything like lavalavas, although that is an interesting concept.
Helpful Answer (0)
Reply to pronker
Report
Sweetstuff Aug 25, 2019
That’s great Pronker. Any positive step is just great. I’m happy for both of you. Maybe the commmunication will improve even more and more positives will follow. Best of luck.
(2)
Report
See 1 more reply
Hi Pronker, I have a suggestion. Nothing to loose I guess. Instead of asking him to change or telling him he is odorous, how about something like this...... “What pants would you like to wear today?” and hold up two pairs to select from. Or “would you prefer to change into these clothes before or after breakfast?” This method worked with my Mom and her meds. When I presented it as “would you like to take your pills now or after coffee” it gave her some control back. In a world where they are losing so much control, maybe this will help. Nothing to loose. Good luck.
Helpful Answer (4)
Reply to Sweetstuff
Report
pronker Aug 20, 2019
I'm glad the tactic worked with your mom, and now and again, giving choice to Spouse works.
(0)
Report
Hi Pronker. What is your husband doing regarding bowel movements? Is he pulling down wet depends to go and then pulling them back up? My thought is if he is pulling them down for a bm maybe you should try the depends with tabs instead so he could not simply pull up again. I’m sorry, this is terrible. Try leaving a change of pants in bathroom at all times as well. Maybe it just takes too much effort or energy that he doesn’t have? What if you pre lined his pants with a new depends? Or placed a pad inside depends? Maybe he would be willing to pull out the wet pad? Sorry if these things have already been tried. I didn’t read all responses. Good luck.
Helpful Answer (1)
Reply to Sweetstuff
Report
pronker Aug 19, 2019
A 1999 operation removed 1/3 of the colon so BMs are loose, although he does take meds for that. Occasionally he "wet farts" so there's that, but it's not an everyday thing. He changes when one is especially bad. At 77 years old come Wednesday, all things considered, he's doing not too shabby. It's been difficult to deal with his condition for 20 years now for both me and him.

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.
(0)
Report
You’re welcome. I hope you can find professional help for your hubby before it’s too late and he has to be hospitalized with an infection. Please continue posting and updating us on his progress and what’s being done.
Helpful Answer (1)
Reply to Ahmijoy
Report

@Ahmijoy, Thanks for your reply.
Helpful Answer (1)
Reply to pronker
Report

Nine months update: The Depends were changed Sunday and today, Wednesday, leaked all over the front of the pants when Spouse came to dinner. I reeled and gasped and he asked what the matter was; the matter was that the stench made me choke and the pants soaked in a 2 foot square area just got to me. I said "the pants are soaked" and he said "oh, it's not so bad." I pushed by saying "the doctor says they need changing at least once daily" and he said "I can't help it, all of a sudden it's just whoosh." I said that I think you'd rather hear this from me than from anybody else that the smell is sickening, he said okay you've made your point and changed the subject.

It was as bad as it gets. He ate dinner like that and I had to move from the table after a few bites, whereupon I finished my dinner elsewhere. The chair pad is now in the dryer to be ready for breakfast. A VA appointment is tomorrow so I shall leave another note for the doctor. I am wondering if the nurse gives the notes to him, because she is the one who sent the 400 Depends plus liners.

Right now it seems hopeless. I think that since the Depends get changed on Friday before the weekend, Spouse knows the fellow worshippers would complain to me again if the stank got bad, as they did before. He's geared to being fairly decent for the weekend and lets the weekdays slide, uncaring if he's wet or smelly in my presence. It's pretty discouraging.

EAD: Correction, the washer just broke down and did not drain, so the pad hangs on the line outside to dry overnight. It seems to be the timer, which whirs at varying speeds without pumping so it's looking like a new washer, urgh. If it's the pump, that's even worse than the timer, but either one is a killer. :(
Helpful Answer (0)
Reply to pronker
Report
Ahmijoy Aug 15, 2019
Pronker, I no longer know what to say or how to advise to “fix” this. I think the solution is beyond us here on this forum. Your husband needs an evaluation to see where he’s at cognitively. He has mental issues. A professional of some sort, perhaps a therapist or even psychiatrist needs to get to the bottom of what’s going on with him and why he’s doing this. This is not all physical with him. It’s mental.

You need to find someway to speak with the doctor in person. Notes to the nurse obviously are not working. You will need to be very proactive with the medical staff who takes care of him. You cannot deal with him; you will need to deal with them. Do not accept any brush offs or “I’ll have the doctor call you.” This behavior will continue until and unless you get him professional help.
(2)
Report
Update: Today is Saturday and the bin held two Depends from Thursday to now. Let's hope the upswing continues.
Helpful Answer (1)
Reply to pronker
Report

Update: Spouse state of stained pants was worse than ever before. The Depends were changed Sunday and last night, Tuesday evening, at dinnertime the pants showed stains past the knees and all over the seat. I stated: "The Depends smell bad and the pants are soaked. I can smell the odor from 10 feet away. I believe you would rather have this come from me than a friend (at the place of worship.)"

He stated: "I know." He was calm, and other times he's become agitated at this subject.

The pants and Depends got changed last night. It's concerning that he knew the problem and didn't fix it, but thought it was okay to be around others like that. Originally, it seemed that since the body fluid is body temp, the leakage wasn't noticed.
Helpful Answer (0)
Reply to pronker
Report
Unitetogether Jul 29, 2019
Sounds like you have the same problem like me with my husband...
(1)
Report
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.
Helpful Answer (1)
Reply to Sunnygirl1
Report
pronker Jul 23, 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.
(0)
Report
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.
Helpful Answer (4)
Reply to DollyMe
Report
Unitetogether Jul 22, 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..
(2)
Report
See 1 more reply
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.
Helpful Answer (2)
Reply to Countrymouse
Report
Ahmijoy Jul 22, 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.
(2)
Report
See 1 more reply
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.
Helpful Answer (3)
Reply to pronker
Report

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.
Helpful Answer (0)
Reply to pronker
Report
Ahmijoy Jul 11, 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.
(3)
Report
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.
Helpful Answer (0)
Reply to pronker
Report
Ahmijoy Jun 20, 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.
(2)
Report
I think a male aide would help if that's possible. Sometimes they do better for strangers, dont know why. Good luck!
Helpful Answer (1)
Reply to Stephanie4181
Report
pronker May 27, 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.
(0)
Report
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.
Helpful Answer (1)
Reply to pronker
Report

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).
Helpful Answer (2)
Reply to Anonymous1256
Report
Ahmijoy May 10, 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.
(2)
Report
See 1 more reply
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.
Helpful Answer (1)
Reply to Sunnygirl1
Report
pronker May 11, 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.
(0)
Report
See 1 more reply
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.
Helpful Answer (1)
Reply to Unitetogether
Report
pronker May 6, 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.
(0)
Report
See 1 more reply
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.
Helpful Answer (2)
Reply to Ahmijoy
Report
pronker May 5, 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.
(1)
Report
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.
Helpful Answer (0)
Reply to pronker
Report

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.
Helpful Answer (5)
Reply to OldSailor
Report
pronker Mar 2, 2019
Great idea, ha!
(0)
Report
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.
Helpful Answer (2)
Reply to pronker
Report

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.
Helpful Answer (3)
Reply to pronker
Report

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.
Helpful Answer (0)
Reply to pronker
Report

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.
Helpful Answer (6)
Reply to pronker
Report
Countrymouse Jan 5, 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?
(1)
Report

Ask a Question

Subscribe to
Our Newsletter