Managing combativeness for incontinence care

M1

Well, we are now crossing the line into urinary incontinence--just occasionally, but it's starting. It's a battle just to get my partner to shower once a week and change clothes: today, the shower drain overflowed because the pipe was frozen, so we didn't even get a shower, and she was so upset, that it was a huge deal for her to even let me put clean clothes on her without a shower. And that's with me doing it. I have no idea how we'll deal with incontinence briefs except to sedate her into oblivion. Anyone else dealt with this (I'll remind you we're in a MC setting)? I swear again I wish she would die to spare her the increasing indignity. It's going to be ugly I think.

ghphotog

My DW is dbl incontinent and refused to wear depends. Very emotional about it but nothing I can do but tell her let me have a foot and I put them on. She cries because she knows what they are and is embarrassed and ashamed to wear them but we have absolutely no choice. I get her feet through and pull them up as far as I can and tell her to pull them all the way up. Once I get her pants back on she's ok until she has to potty and sees them again. Nothing I can do but console her say they are for both men and women and not for babies. She doesn't like it but goes along with it because she now knows there is nothing she can do about it.

Rae4

M1- my mom is occasionally urinary incontinent so I discreetly replaced all her regular underwear with the pretty disposable pull ups. They are the Always brand. I don’t imagine they are as absorbent as some but for now they are enough. To my surprise and delight she didn’t notice the “underwear” are different. At least she hasn’t commented on them. She is early stage 6.

Good Luck!

Gig Harbor

Can you bring in a box of Kotex pads like she used to wear when she had her period and say you think her period might be starting and she should wear one? Maybe she is back far enough in time that this might seem reasonable to her.

fmb

I had the same thought as Gig Harbor. If the urinary incontinence is not that severe, a long, heavy duty incontinence pad that uses adhesive to stick in the underwear could be sufficient during the day. They somewhat resemble the Kotex pads that we women of a certain age grew up with and may not be as disturbing to your partner. I've had light to moderate urinary incontinence since my mid-40s and have use these products for years. There are also new products on the market that are absorbent incontinence/period washable underwear. I have not tried them, but they might be a way to postpone disposable Depends for a while.

M1

Interesting thought about the periods-but she had a hysterectomy in her early thirties for severe endometriosis, so I doubt if she'd buy it. But even then: the issue is going to be changing them, she's going to fight tooth and nail no matter what the product is. That's the issue. Right now she's only changing her underwear once a week.

wose

@ghphotog and @M1 This is so heartbreaking for you two. I’m so sorry you have to go through this awful and yes undignified illness. I can’t imagine how hard it would be to deal with these so intimate issues. I am in awe of the superior care you give to your wife. You truly need to know how lucky your wife is to have you. I have no advice on your current plight, just be kind to yourselves… you are doing a stellar service. I do notice several pairs of my DH underwear in the laundry, almost daily now. He’s one tough cookie, so I can almost imagine your dilemma.

harshedbuzz

@M1

Ugh. Given what an outlier your wife has been in terms of accepting care, this is going to be challenging. You have my sympathy.

Even if you were to get DW to accept new panties, changing them will still be an issue. To that end, I wonder if she'd mind being wet in regular pants as this progresses. I know I finally toilet trained my toilet-averse son by getting rid of diapers and Pull-ups and let him be cold and wet.

My auntie took to Depends easily (as she did everything) when her sister offered them as new fangled "paper-panties" to save on laundry. Auntie had an ancient septic system so saving on loads as a positive was baked in. Even dad eventually wore his Depends when they became the only thing in his drawers.

I wonder if the disease progression this symptom signals might result in less combativeness in your DW. For dad, mom and me, the middle stages of the disease with dad were way harder than what was to come. Sure, the indignities and losses or late stage were horrific, but dad seemed so much less upset and angry all the time. By that point, he saw the aides as medical professional "helping him" and was mostly very sweet with them.

While there are washable incontinence panties, some of the more normal looking ones are meant only for the slightest leaking. Mom doesn't have dementia but she does have some stress incontinence and COPD-- which is not a great combo. I ordered her Thinx and they just didn't cut it. Their most robust product holds 6Tb of fluid. And you'd still need to manage changes and figure out laundry protocol. And they're $$$-- $24-$30 a pair, so if they were accidentally tossed it could be a problem.

There are more absorbent ones available, but they're quite institutional and bulky. One of the men in our support group's wife had very sensitive skin and needed to use these instead of disposables. It pained him because she was quite thin, and they were quite obvious under her clothes when she worse pants. He saw her almost daily, and he did her laundry because most detergents also bothered her skin, so the underwear didn't sit around long. He placed his wife in the same MCF where dad was and they were great with adapting to a different product/routine.

New Thinx for All Leaks | Thinx

HB

Whyzit2

I’m confused by your comment that you are in MC situation. If so, talk with the aides for recommendations and buy what they suggest and let them deal with it. If I misunderstood what you wrote I apologize.

M1

Whyzit, the problem is that she refuses care from the MC aides. She has been mostly independent up until this point, and hasn't needed much help from them. I have handled weekly showers and clothes changes. Of course i will talk with the MC staff, but I think HB has it right, that I am probably just going to have to let her be cold and wet before she will accept care. I have no clue how we're going to proceed here.

Whyzit2

I’m still puzzled. You are paying a big price for their service. Why not stay away for a period of time and let the aides tough it out with your DW? Why not let them do their job without you constantly catering to her? Sometimes we are so used to being the caregiver that we become codependent. Sorry I’m being blunt here but it may be time to do some self evaluation on your part.

Your DW is safe and well cared for. Is it time from or you to accept that your role in life has changed?

ghphotog

When you say combative does that mean she is punching and kicking or just going into hysterics? There comes a time that you just have to fight through it with a little sternness. You are paying good money for professionals that should know all the tricks to getting it done. If they aren't allowed to to force her then you have to somehow get it done. Soon there will be absolutely no choice but to just put them on. Once she gets dressed she will probably forget about them anyway until the next time.you will soon be out of choices.

M1

We are just starting the process. Yes, given her overall history and how resistant she is to showering and clothes changes, I fully anticipate that she may fight and kick, and I don't want her expelled for combativeness if I can avoid it: I worked hard to get her here in the first place. There's a long backstory there that's not worth revisiting in this context.

I have ongoing, open discussions with the staff about how to handle her. I don't think I am being codependent--they have asked for my help, and I am happy to do it: I don't feel like they are not doing their job, and I don't feel like I should never provide any hands-on help because she's in MC. I am just trying to avoid trouble here. I think HB is probably right, that there is nothing short of letting her be cold and wet that is likely to improve her cooperation. It may require extra sedation for a time, and we will discuss that with the medical team too. I'm just interested to see if others have faced a similar level of problem and how they might have handled it. She is extraordinarily fierce for a female resident.

ImMaggieMae

https://alzconnected.org/discussion/comment/195508#Comment_195508

Does the staff do anything at all to keep her clean between the weekly showers, like sponge baths or at least wet wipe clean-ups? These are professionals who have undoubtedly dealt with this type behavior with other patients. With incontinence UTI’s can be a big problem if the patient isn’t kept clean.

mommyandme (m&m)

My LO started with incontinence pads. They became a problem when she’d get compression sores where the edges of the pad would rub in the same place each time. Granted she sat A LOT. The move to adult pull-ups happened reluctantly and it was difficult to find the right fit for her. I had to rip each one a couple of inches on the sides for her comfort and to keep a good fit on her crotch. She was like “The Princess and the Pea” regarding minimal (imo) discomforts.

Im wondering about sitting in the wet/cold underwear. A toddler begins to realize the cause and effect. I’m not sure a dementia patient can. Isn’t that like having her learn something new. Will she understand why she’s uncomfortable? My LO probably only knew she needed to urinate or had urinated 5% of the time until later in the journey when it was completely gone . Then again, maybe your partner is still cognizant enough. Maybe she’ll accept the toileting/changing if it alleviates her discomfort. It might be a knew predicament each time and maybe she’ll even stop resisting in time.

Im so sorry for this, another struggle.

harshedbuzz

@mommyandme (m&m) said:

Im wondering about sitting in the wet/cold underwear. A toddler begins to realize the cause and effect. I’m not sure a dementia patient can. Isn’t that like having her learn something new. Will she understand why she’s uncomfortable? 

I admit I wondered about that, too, when I was spit-balling ideas. Error-free is generally the best approach in dementia care.

My dad went through a phase where he would spill things on himself. He had a habit reclining on the sofa and attempting to drink Chardonnay or coffee by picking it up off the end table behind his head, tilting the glass and pouring the chilled contents in his face and shirt. He didn't ever learn Newton's Universal Law of Gravitation, but he did allow mom to clean him up and change his clothing even as he blamed her for doing this to him. If it was cold enough, she might even get him into a warm shower.

HB

Joydean

M1, you know your partner better than anyone possible could. There are many good suggestions here, bottom line is you still know her. I wish you the best! I have no suggestion because I haven’t had that experience. My dh fought the use of pulls for a while but when I explained ( several times) that they would help me take care of him better he did finally try them. Yes he hated them! But I could only keep repeating that it would be easier for me! Sadly now (early stage 7) he has no idea what he has on! Prayers for you and your partner!!

Chammer

I compared changing Depends or clothes for stage 6/stage 7 MILwAD (who died in 2016) to putting a cat in the carrier for a trip to the vet. It had to be done, and we both ended up snarling, out of breath, upset, and the occasional minor injury (me). It never got easier despite her being on quetiapine and mirtazapine, prescribed by hospice. I originally joined this forum for her but wasn't able to learn much before she died. I've learned much since i started following for my DH w cognitive changes, but I'm not sure that even w that knowledge in hand, it would have been easier. Like your partner, @M1, she was a saucy and fierce lady w a challenging personality. Praying that you are able to find the right tool(s) to make this easy for you both.

jfkoc

I trust your judgment.

If all is well between your visits and the problem is specifically incontinence, I would really consider titrating some meds.

In any case you are only going to be able to do what she will let you do and all you can to is throw some things on the wall and see what sticks.

Please, it is quite possible nothing sticks. That does not mean failure on your part. The damn disease has been known to win.

You remain in my pocket...

-Judith

M1

Thanks jfkoc. I personally think this is worse than the cat carrier though that is a great analogy. My fears are based in long experience with her, unfortunately. I have a feeling that management is going to require increased sedation and I guess I fear that that-or uti’s-will contribute to her demise sooner than might otherwise be expected. But-we know that’s inevitable anyway. I just know her temperament is going to make it a rough go. It already has, and I see no reason to think that this is going to be any different.

Denise1847

Dear M1,

We are not there yet so I have nothing to contribute. I am so sorry that this horrible disease has to destroy the remaining time you have with your partner. I cannot imagine what you are going through. I will keep you in my prayers.

M1

Have to add: i fear I'm making her sound like a sociopath and nothing could be further from the truth, she is one of the most charismatic people have ever met and the MC staff love her. But she is an unusual person, always has been, never suffered fools gladly, tough as nails, and would chew her own leg off rather than bow down to someone else's conventional way of doing things. And in the context of dementia, these traits are going to be self-sabotaging. To say she has not adjusted easily to memory care is a gross understatement, our progress this year has been so hard won and I fear seeing it all going down the drain now, so to speak. That's where i say I wish death would take her.

housefinch

I have no ideas. Just immense admiration for you, @M1

LaneyG

No M1 you are not making her sound like a sociopath at all. We all get it. I do recommend getting with the staff to come up with a joint strategy. I hope you can find away to get yourself out of this particular problem with the incontinence.

Dh is just starting to have urinary incontinence at night. He can’t seem to get to the bathroom on time and he says it just comes. He is refusing the briefs. Though I noticed in the ER they got them on him. I think I will just have them here when he comes back from hospital. I wondered if any of you had particular success with a particular brand for comfort/look/ effectiveness.

ghphotog

https://alzconnected.org/discussion/comment/195589#Comment_195589

M1, we know she isn't a sociopath. Like my DW this disease amplifies everything but she also is the sweetest and kindest woman I know. We understand what you are saying. Hang in there M1. It'll find a way to work out.

tigersmom

@LaneyG wrote:

Dh is just starting to have urinary incontinence at night. He can’t seem to get to the bathroom on time and he says it just comes. He is refusing the briefs. Though I noticed in the ER they got them on him. I think I will just have them here when he comes back from hospital. I wondered if any of you had particular success with a particular brand for comfort/look/ effectiveness.

Laney, I just took the advice of @Ed1937 and called parentgiving.com to discuss this. They have recommendations for every issue, and are knowledgable about sizes. My first purchase, Depends Real-Fit, was a total bust. Too small. The good thing about this place is they will send you samples from the manufacturer to see what works. I chose a soft, absorbent dark-colored day brief (Black is DH's color) and a few different ones for night. They just arrived and I have not needed to try them yet, but I am ready for when I do. I really recommend that you give them a call.

White Crane

M1, i’m so sorry you’re having to go through this. And I’m also sorry for her. I don’t have any bright ideas or other suggestions to offer. Just keep I’m holding you close in prayer and sending virtual hugs.

Brenda

Beachfan

M1, I am sorry. It seems like when one door opens, another several close. I have nothing to offer by way of suggestions; only deep empathy for you and DW, and deep admiration for your caregiving. My DH could get ornery once in awhile as per “hygiene “. But it was nipped in the bud with a huffy exit and bathroom door slam on my part. He was usually contrite when I returned, minutes later, and asked if he’d like me to help him. But he always looked puzzled as if to say, “What’s your problem?” Stay strong; this too shall pass.

Mimi50

I don't have any suggestions for you. Just sending strength to you and sense of calm to your DW.

Dio

M1, I do agree with the poster who said it's time to let the professionals take over. What you're doing isn't sustainable. I know you're fearful of her being evicted. So was I. My DH was going through similar combativeness whenever dealing with anything hygiene related. So MCF staff timed his mood controlling, or sedating, pill 1/2 hr before changing or bathing. It helped somewhat. But it wasn't until the addition of sprinkles that DH is finally manageable. Right now, with the addition of sprinkles, DH is very manageable and extremely cognizant of his surroundings. MCF is actually seeing the "normal" person. What is your wife's cocktail mix?

Ed1937

M1, Dio said what you're doing is not sustainable. I think she's right, and I know you don't want to jeopardize her welcome there. Maybe it would be good for you to really get staff involved on a solution. Let them know you are concerned about her being kicked out of there, and ask them for input on how to handle it. In other words, let them make the call on how to handle it. Then if it didn't work out, at least they will be the ones who called the shots, so to speak. I think that would make it harder for them to kick her out. Maybe something to consider?

I know how hard it can be when they fight tooth and nail. My wife had been having UTIs, and she just would not voluntarily change her incontinence wear. They had to be changed before bedtime. Two of our kids were here, and I had her on the bed, when I told the kids to each grab an arm and hold her so I could get her pants off. They did, and after her pants were off, it was easy enough for me to tear them at the seams then get new ones on her. She was furious with me, but when we got in bed, she reached over to hold my hand. She always did that no matter how big a battle we had 5 minutes earlier. I really hope you can find something that works.