Can you be kicked out of MC for not complying with continence care?

Anonymousjpl123

I was not imagining the aids at my mom’s place were asking about taking her home. We had a follow up care meeting and the directors basically told me if my mom can’t become more compliant re: incontinence (mostly urinary) they may not be able to keep her. First off the big problem is their rugs. She needs her carpets changed or deep cleaned and I really pushed that issue because they are holding the smell.

They pushed back and said if she doesn’t wear the incontinence briefs it is not a long term solution. I agree, but honestly isn’t this something they should have expertise in?

I cannot imagine with what I pay them this shouldn’t be their problem. One minute they say they are not able to deal with her “behavioral issues” around incontinence (she has a lot of accidents) and when I ask what to do they say “well she can’t help it, it’s part of the disease.” Meeting today was a shock: they are an MC facility and can’t deal with urinary incontinence??

Now they said they are doing some type of assessment process and will let me know if they are able to “understand the issue” and work with her better. But it was pretty clear they want her to leave and they flat out said it may come to that but they don’t want to “put the cart before the horse.”

My mom is difficult and I feel like they just don’t want to deal with her. What are my rights?

I know I’m always on here with these problems but any advice is always so helpful.

M1

You maybe forced to make a tough choice. She may have to be medicated into compliance if you want her to stay, sadly.

Why would any facility have carpet? All the floors should be easily cleanable. But I'm sure they wouldn't appreciate your bringing that up.

H1235

Carpet in MC??? I’m thinking if they can’t handle it maybe it’s just not a good place for her. You asked about your rights. I would be worried about how she is treated if you force them to keep her. It doesn’t sound like the way her incontinence has been handle is working. It’s not sanitary and I can see their hesitation in replacing the carpets. I can’t see why they would wait til they are ready to kick her out before looking for a solution. It seems she must start wearing depends no matter what happens! Are there depends that a PWD can’t get off? It seems like I remember something about that. If she is going to react badly to that then maybe a higher dose of medication is in order as M1 suggested. Good luck

harshedbuzz

@Anonymousjpl123

When I read your other post, the first thing that came to mind was why the aides were pushing for her to leave. Now you know why.

You do have rights around this, but it might be better to find a better facility. It sounds like the place where she is now might be one of those corporate places that prioritize decor over staff training and retention. That said, incontinence protocol is going to be non-negotiable at any facility which means her wearing a Depends-like product and cooperating with changing/keeping them on. If this isn't happening, medication may be needed to dial back her behavior. One-piece clothing can be used to prevent her undressing and taking them off.

Dad's MCF had carpet which always seemed odd to me. They explained it as a safety issue for the residents who are prone to falls. It did get deep cleaned on a schedule and as needed. If was in the form of carpet tiles that were sometimes replaced. FTR, it didn't seem to hold odors.

HB

psg712

Good grief. Incontinence is part of the dementia experience. MC should adapt to the needs of the resident, not the opposite. That said, I agree that they can't just have people sitting on the furniture in wet pants or going wherever they stand. But there will always be incidents not in anyone's control. It's just disturbing to hear they are taking such a hard line with your mom 🙄.

Anonymousjpl123

Thank you all so much for your replies! I really needed perspective.

@harshedbuzz I think it’s exactly what you describe: corporate, not prepared or interested in those needing a higher level of care. seems like they just don’t want to deal with it.

Also, the fact that they DON’t have special carpeting - but just standard - speaks volumes.

I get why incontinence is very serious, but they haven’t even suggested medication changes, different approaches, specific clothing, etc. We’ll see what happens at the follow up meeting on Tuesday.

Regardless they are clearly sick of dealing with her which makes me incredibly sad.

I’m in the process of figuring out alternatives if needed.

Can skilled nursing work? What is the difference from memory care? I want more for her.

harshedbuzz

@Anonymousjpl123

When I was touring ahead of placing dad, I visited a couple of places that seemed to cherry pick their residents to favor the pleasantly befuddled. On a gut level, they felt much more appealing. A lot of thought went into the decor choices rather than dementia-informed design. They didn't seem to have anyone in the later stages of the disease— certainly no one who looked like my dad who refused to wear anything but dorm pants and tees that were always twisted and bunched up within 30 minutes of straightening them out, no one pacing, no one who's hair was mussed from napping, no one sitting silently in a Broda chair seemingly asleep.

If you can, I'd try to check out other facilities. Maybe tour both MCF and SNF. Dad managed to stay in MC until the end. My aunt who progressed more slowly spent her last couple years in a SNF to get more hands-on attention vs prompting for things like tooth brushing and hand-feeding. She had funds to afford a private room even in the SNF but the cost was a lot higher than the MC. Unless it's a unit dedicated to those with dementia, the staff may not be as well trained and experienced around PWD and they won't typically have much in the way of activity programming. My aunt was able to spend part of her day with the MC folks because she liked the crafts and trips out.

Has medication been considered? It made a huge difference for dad. I am a firm believer in behavior is communication. She's not giving them a hard time, she's having a hard time.

HB

M1

Unfortunately incontinence care is not a skilled need. I agree with harshedbuzz that adaptive clothing that will keep her from removing the briefs will likely be necessary—look at buckandbuck.com. But as I said before, medication changes are probably also looming. The more sedated, the more compliant—but also the higher fall risk.

Anonymousjpl123

I suspect my mom’s place is a lot like you describe - beautiful decor, not as much focus on actual dementia care.

What makes it hard for me to imagine her leaving is exactly what you said - many residents, though advanced, have had long careers they still take pride in (I guess mostly via their shadowboxes, and occasional snippets). I realize its such a misguided way of thinking about this.

Got a list of facilities recommended by a knowledgeable colleague I trust, so will start calling. Also called ombudsman in case they can join me Tuesday.

Tonight I got here and she was wearing the “depends,” they’ve been checking on her every hour, and today they professionally cleaned her carpet. It is utterly confusing; I guess they are covering themselves or genuinely making an effort.

Re: meds, seroquel has worked literal wonders on her sundowning, anxiety, and agitation. Her mood is quite good, which is also what makes this so frustrating. She is progressing so fast anyway (to my mind) that this all may be moot. Maybe she will become compliant. But I can 💯 say she doesn’t understand what’s going on.

Again, you all are amazing. I’ll let you know what happens Tuesday.

Emily 123

What's her care plan say about hygiene and incontinence, JPL? Just curious what they have, and if it meets her needs?

Anonymousjpl123

@Victoriaredux it is a unique place! Sigh. Very nice set up but yes the carpeting is a head-scratcher.

Emily they changed her care plan to include 2 hour toileting (in addition to help getting dressed, bathing, etc) but I’m not sure what that entails. It seems like the aids basically come in and ask her if she needs to go to the bathroom. I plan to ask more Tuesday about it. The care level is professional but very very basic, like I’m not sure what they do beyond asking if she has to go and if she’s wearing the depends.

M1

this is like a toddler, you don’t ask her, you take her, help her pull her pants down and sit on the toilet. That’s what two hour toileting involves. Again like a toddler, you avoid any question that offers an opportunity to say no. You don’t ask, “do you need to go to the bathroom?” You say, “it’s time to go to the bathroom” and go.

Anonymousjpl123

@M1 totally. It’s really disheartening. Also my rage has bubbled up because I came in today and her room smells like urine. I think maybe they cleaned the carpet to prove they can’t manage her. I hate the idea of moving her. She’s comfortable here. But they are not able to meet her needs.

Emily 123

Same with my mom at her initial 'dementia focused' AL that has a MC attached. As the DON of another facility remarked, 'putting a keypad on the entry and slapping the founder's mother's name on the MC doesn't mean there's good care'. They weren't willing to adjust her care plan, & did a lot of gatekeeping of the NP who had oversight so that I had trouble being able to discuss my mom's meds, but they were more than happy to take our money. The good thing is that you might be able to use their inability to manage the incontinence to end the lease without having to pay for 30 days if you find a place you like better.

M1

Let me add: don't worry too much about disruption to her by moving her. My partner forgot all about her previous facility in minutes. The hassle is on your part, but if they do a better job you'll wish you'd done it sooner.

Anonymousjpl123

just a quick follow-up: I received a call today from my mom’s place. As expected, incontinence an issue. She takes the underwear off and hides the wet clothes. Thankfully her room is small and they found her hiding places. Today, after a long talk, they suggestes we try the onesies. We looked and brands and i will order some.

Here is the difference. MC director: “Please know there is nothing for you or your mom to worry or feel bad about. We are very used to this, it’s very common with dementia. I just wanted to work with you so we find clothes that work for her, and ease her into it.”

It is a night and day experience.

psg712

Wow. So glad the director in her new place is so supportive! It makes such a difference for the PWD and the family.

Anonymousjpl123

Yes! It is truly awful having to watch my mom’s decline and the onesies seem horrible to me, on some level. Even the ones that look like clothes.

But having staff who “get it” and are confident caregivers makes such a world of difference.

mrsabaldwin

It’s mind blowing isn’t it? That a skilled nursing facility specifically memory care is not capable of handling behavioral issues or incontinence? Unfortunately you are not the only person to have experienced this. It happens quite often. I hope you find the perfect place!

Anonymousjpl123

Well her new place has been really good so far. It has been two months and she has really settled in.

Last week we started the jumpsuits. They look really nice. Yesterday my mom got very upset because they took her clothes 😢. I get why they have to, but it is hard. On the other hand, she is clean and dry and her room doesnt have the odor. I am going to try to find other jumpsuit styles so she has some diversity, but this is very hard. She had her own preferences with clothing. I hope she is better today. Overall she likes where she is. Just not the jumpsuits. Also wish everyone would not call them onesies. This whole thing is very painful.

Victoriaredux

I'd call them "racing suits " or "scuba suits."

https://www.pinterest.com/pin/raquel-welch--326862885463181276/

Anonymousjpl123

🤣🤣🤣🤣🤣🤣❤️❤️❤️❤️❤️

They are actually quite nice looking and comfortable! She doesnt seem to even mind them except for a) she had nothing to do with having them, and b) she cant take off the incontinence briefs.
Here is what I got her, in 3 colors, and its good:

Thinking of trying this:

Anonymousjpl123

Thank you. I felt good seeing her in the first one. Just don’t know how to explain to her why she is having her wardrobe changed. MC staff said “Anony loved this and thought you might like it” which is how they got it on her.