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Prayers for dh’s family please


saraha
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7 minutes ago, Rosie_0801 said:

Sure. But Saraha's mil already has dementia and has already broken her hip, so I would argue she's past the stage she could benefit.

Right, I was thinking that maybe they wanted to slow the progression of the dementia, which has been shown to happen when dementia patients get hearing aids.

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Re hearing aids--

We felt the same way, hoping that wearing them would give MIL back to us for at least a little while. However, MIL had a terribly difficult time with them. We did put them in and require her to wear them for a while, but there came a point when she simply would not. It's worth a try, but be aware that, as Rosie says, it might not work out.

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4 hours ago, saraha said:

Sil and I haven’t spoken to each other since as we haven’t been in. The same room but once and she was on the phone. She did make a comment to dh that she thought I would be there (hospital) more 🙄 but I just saw fil at the house when I came to clean out fridge and leave him some dinner. He thanked me for it, that’s a first. He had been home to load cows to process then was going back to the hospital so didn’t want to talk long.

I guess 2 visits, taking the kids up (before she tested positive for c diff) and decorating her room within an inch of its life (so much garland 😆),  cooking and cleaning at the house and making sure that dh is available to go to hospital whenever he wants by doing all the things at home and on our place isn’t enough. 
She annoys me to no end.

Some people only think about what they see, what is right in front of them. They cannot fathom that things can happen without their knowledge so those things never happened. Sounds like your sil is one of those people. Annoying as all get out…

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We’ll I just give up. This morning mil must be feeling better, she is insisting she did not fall and break a hip, they just brought her there because they didn’t know what else to do with her and she wants out now. She pulled out all of her Ivs etc and is saying they are just putting her away to forget about her. She won’t let fil even let go of her hand today and she is mad at sil and blames her for being in the hospital. Sil said she still has some stitches so didn’t point out her wound to prove she broke her hip. Fil has decided he is not giving her anymore special gummies (he never liked the idea in the first place) so she is just staying agitated. Dh said fil just keeps saying don’t worry, we’ll get you out of here as soon as we can. And the more agitated she is the more agitated he is. I have a feeling if she is resistant to anyone but him being around her, he’ll just go along with that and there will be no outside help. I filled my friend in on her progress and told her about the c diff and she was like hmmm, I have a lot going on at my house, I may not want to deal with that and mil has never liked (for reasons we don’t know) her anyway so if she’s going to be back to her trying to escape all the time self friend is thinking she might not resume helping.

I just feel so helpless. I want to fix it, for her, for dh and for fil but I can see which way the wind is blowing today, and so can dh. I guess sil has lifted the freeze out on sharing information with him, she has been texting her brothers non stop for two days and insinuating they need to help more. Both of them have full time day jobs and families with kids at home. Sil has a full time work from home job plus does childcare part time for her grandkids. She has definitely spent the most time in the hospital with them.

I am trying so hard to bite my tongue and just make sympathetic noises to dh and continue to help him be available to visit as much as possible. 
 

Hugs to everyone out there dealing with stubborn elders/family

 

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8 minutes ago, saraha said:

I am trying so hard to bite my tongue and just make sympathetic noises to dh and continue to help him be available to visit as much as possible. 

I'm sorry. Grief and no agency to make things better is an awful combination. I thought the care givers were likely to quit over the C-diff. 

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As a follow up to today, back when she was going through her mean phase, we didn’t bring the kids around to visit. She would say things to them about wanting them to leave, she only wanted to be with fil and would follow sil, me and the worker who is my friend around praying loudly that we would leave. It really upset fil that the kids wouldn’t come around and he would say things about them not being there and they should just ignore her. Sil would try to guilt me into taking them over. But several of my kids were there when she had that freak out that landed her in the emergency room then a psychiatric facility and they are gun shy when she starts acting like that. When she gets like that, she only wants fil around and won’t let him leave her sight to even go to the bathroom, and is just mean to anyone that bus not him.

For those of you who still had kids at home when your dementia family member got mean, how did you handle visits? 

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1 hour ago, saraha said:

As a follow up to today, back when she was going through her mean phase, we didn’t bring the kids around to visit. She would say things to them about wanting them to leave, she only wanted to be with fil and would follow sil, me and the worker who is my friend around praying loudly that we would leave. It really upset fil that the kids wouldn’t come around and he would say things about them not being there and they should just ignore her. Sil would try to guilt me into taking them over. But several of my kids were there when she had that freak out that landed her in the emergency room then a psychiatric facility and they are gun shy when she starts acting like that. When she gets like that, she only wants fil around and won’t let him leave her sight to even go to the bathroom, and is just mean to anyone that bus not him.

For those of you who still had kids at home when your dementia family member got mean, how did you handle visits? 

edited

Accept ways the kids can interact with zero exposure to guilt shaming or interactions that would cause them to have memories of their grandparents in a negative, non-empathetic way. 
 

Freshening up the house and fridge was great and a blessing to both givers and receivers. Children responding to a command performance visit, imo totally unnecessary.
 

Edited by Grace Hopper
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48 minutes ago, saraha said:

 

For those of you who still had kids at home when your dementia family member got mean, how did you handle visits? 

I stopped bringing them in visits. It was serving no one. It’s understandable that FIL misses them. Maybe you can bring them to do something outside with FIL while you sit with MIL but that’s as far as I would push it. Figuring out how to get the kids over seems pretty low priority right now. I wouldn’t worry about that until there’s some stability in her care plans. 
 

PS. After any of you visit, wash your hands with soap and hot water as you leave the room. Hand sanitizers do not kill cdiff. 

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Mine aren't over much with my dad anymore, but for different reasons. He enjoys their company, but they spend their time telling him not to grab the caregivers private parts and hears him talk dirty to the caregivers. So...I'm just done with that to be honest. Prior to the pandemic, we were with him at least once a week and they got hair cuts together, we went to lunch, etc. Then we locked down pretty tight during Covid (my dad's place was our biggest risk). So...we facetimed him and they played chess with him on-line 6 days a week. Once he fell and 24/7 care came in, we backed of of their visits and now, given the circumstances, I'm not making them deal with my dad how he is now. Maybe, if it is a situation where hospice comes in, I will bring them back over. But...they are both heading off to college next year.

For my in-laws, they were good until they weren't. My boys were each woken up a couple of times to go over and help DH get one or the other off the floor. Then they declined very quickly (chair/bed ridden) and FIL was very delusional. They weren't the grandparents they grew up with for 16 years. So...I left it to them if they wanted to go visit before they passed away or to keep their memory of how they were. That once they saw it, they could not take it back. The image would be there.

They both chose not to go back over. I did, but wish I hadn't. Seeing FIL go through is last 5 days was super dad. It was not peaceful, but at least we got hospice in so he did have some comfort meds for a bit.

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1 hour ago, saraha said:

 

For those of you who still had kids at home when your dementia family member got mean, how did you handle visits? 

MIL didn’t get mean often, but she did hallucinate frequently that there were children in the house, misbehaving. By then our youngest were college age and they chose to visit once and it was so difficult when she was hallucinating.  
Our niece didn’t bring her kids to see MIL. She just didn’t. It was the best choice for them. 
 

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MIL was never mean or inappropriate with my kids, bless her. She was high maintenance when my kids were in their teen years, but she directed most of her paranoia towards FIL. Once it was clear that MIL was dealing with dementia, I never left my kids alone with her. There were literal years that others were saying she was fine, and I just quietly/secretly never allowed her to drive my kids anywhere or to be alone with them.

My youngest was in college when FIL was going downhill. He was on campus when FIL was at his worst. Mostly ds was not asked to babysit FIL, but there were a few times in the early months that FIL was with us that we did ask ds for help for a short time (like half an hour). The one exception was when we had to get FIL to Chicago (six hours away) and there were no options. FIL was still pleasant and mostly obeyed what was asked of him, and he was sooooo happy to be going out with his awesome grandson. The original plan had been to only stop once at dd's apartment (on the way) for a bathroom break. Dd was there to help. Then after that ds went through a drive-thru for lunch, but FIL refused to eat in the car. Ds handled it great--they ate at a picnic table outside and then continued on. It was one last, blessed day together. FIL's anger/paranoia stage started months later. We did not tell our kids how intense it was until we had agreed together with SIL that FIL would transfer to the facility. 

 

You are right to protect your kids. You are all pitching in--it's just that more help is needed and SIL is not being realistic about it. 

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Dh texted and said fil asked if dd18 would want to sit with mil when she gets out of the hospital. Dh was torn but I said he can throw me under the bus, hard no. Nephew might be emotionally mature enough to take care of his grandmother that way but dd18 is not, plus c diff

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For one relative, once the anger phase was over, we would bring the kids in with sweets for everyone. Sugar lights up the pleasure centers for everyone, even people with dementia. We would have an icecream sundae or some chocolate (stuff that melts well in the mouth and will not cause choking), take pics, and bustle the kids out of there. I would stay for a longer visit while the kids did electronics in the car. Once the kids were no longer in the room, she wouldn’t remember they had been there. At that point, spouse would “go out to check on the cows” (note: everyone was in town at this point but this was an acceptable excuse to her) and go talk to the kids privately while I kept company with her until he came back. I always brought something highly engaging to entertain and distract her and I’d reassure her he’d be right back. All in all, visits were less than 30 min. Quick in, quick out, trying to keep it pleasant.

If any nastiness happened when we arrived or she was unsettled, we left. The priority is always the kids. 
 

Fwiw, I wouldn’t be around either of them with c diff happening. My dd picked it up in a hospital once and my dad has had a few rounds of it. It is so much worse than MRSA to deal with. The spores can last for a long, long time. Honestly, even if you’ve just been visiting, I would consider taking Florastor for a bit just to boost your gut health. Reoccurrence is really common so I wouldn’t assume her abx now are going to fully clear it.

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12 minutes ago, saraha said:

Dh texted and said fil asked if dd18 would want to sit with mil when she gets out of the hospital. Dh was torn but I said he can throw me under the bus, hard no. Nephew might be emotionally mature enough to take care of his grandmother that way but dd18 is not, plus c diff

Good job!

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I'm glad you said no. 

And I agree with with Prairiwindmomma about c diff caution. Do not for one second think this will go away quickly. Even "mild" cases tend to go on for some time. If they do only Flagyll (as many do) then it's likely to be months of waves of this. If folks are not EXTREMELY meticulous in sanitizing, it's easily spread. The nurses in the hospital that I was at had horror stories of nurses and family members who got it from caretaking. 

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Honestly, at this point, your husband’s sister and FIL just want to have things their way.  I think the kindest thing to do is to say what you’re willing to do, especially stuff like bringing food, and hold firm on it.  And it should be pretty minimal.  She can rail and fuss, but she needs to feel the full consequences of her decision.  And the c diff is a nightmare.  No way would I let one of your kids be involved.  She needs full time care, and the more the burden falls on her, the more likely she is to agree with it.  

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24 minutes ago, saraha said:

Dh texted and said fil asked if dd18 would want to sit with mil when she gets out of the hospital. Dh was torn but I said he can throw me under the bus, hard no. Nephew might be emotionally mature enough to take care of his grandmother that way but dd18 is not, plus c diff

You did the right thing. 
 

If there’s any chance someone (like a desperate SIL) would attempt to contact your dd directly, I’d give dd a heads up that she needs to let those calls go straight to voice mail. Tell her about the C-diff. 

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Dh says the only people hazmatting up are the people who actually take her to the bathroom, everyone else, nurses, np, dr all come and go like usual and there is no protocol for family or visitors!  I haven’t been to the hospital since the c diff positive, he says there’s a big sign in the door but only the people who actually help her toilet suit up. He said he just comes in and stands and doesn’t touch anything. I seriously think they all feel like, we’ll if it’s so contagious why haven’t I got sick. Even sil’s dil, the sonogram tech is like yeah, we’re not coming to visit… but sil’s right, she not fil are sick soooo

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3 minutes ago, saraha said:

Dh says the only people hazmatting up are the people who actually take her to the bathroom, everyone else, nurses, np, dr all come and go like usual and there is no protocol for family or visitors!  I haven’t been to the hospital since the c diff positive, he says there’s a big sign in the door but only the people who actually help her toilet suit up. He said he just comes in and stands and doesn’t touch anything. I seriously think they all feel like, we’ll if it’s so contagious why haven’t I got sick. Even sil’s dil, the sonogram tech is like yeah, we’re not coming to visit… but sil’s right, she not fil are sick soooo

sooo.....if you didn't know they were fools before, you sure do now. 😂

If your husband has to visit, have him scrub with soap and dump his clothes straight into the washer when he comes home. I'd even consider taking Dawn soap to the bottom of his shoes. 

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10 minutes ago, saraha said:

Dh says the only people hazmatting up are the people who actually take her to the bathroom, everyone else, nurses, np, dr all come and go like usual and there is no protocol for family or visitors!  I haven’t been to the hospital since the c diff positive, he says there’s a big sign in the door but only the people who actually help her toilet suit up. He said he just comes in and stands and doesn’t touch anything. I seriously think they all feel like, we’ll if it’s so contagious why haven’t I got sick. Even sil’s dil, the sonogram tech is like yeah, we’re not coming to visit… but sil’s right, she not fil are sick soooo

Ugh.

So it's transmissible through surface fomites. It's not airborne. That means it's contact-precautions. So the suiting up is based on the need to prevent any splashing onto your own clothes when you clean someone up. 

The standard of care for c diff is full, plastic gown, NOT paper, with gloves, and the room has to be sanitized and sheets changed on a super-stiff schedule. 

When I was in the ICU, everyone was fully suited like this. 

When I transferred to a non-ICU floor, nurses were required to be in the full gear but visitors were not. The idea was that the nurses were hands-on with the clean-up and personal care, but most visitors sitting in a chair would be fine. This looked effective to me for exactly ONE reason--the nurses were extremely meticulous with cleaning the room and with sheet changes. This is more information than I would normally give on a public forum, but for the sake of helping you understand, what this meant is that every.single.time. a nurse helped me, they would follow up by wiping everything down right then and there. This was in addition to a regular, official cleaning person who would come in to mop the floor and wipe everything down daily anyway.

Everyone who left my room was encouraged to wash their hands at the sink. 

Edited to add: As I think back, I realize there were gowns and gloves available to anyone right at the door to my room. I just don't recall dh or my kids wearing them after I was out of the ICU.  

 

Edited by Harriet Vane
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This is all really hard but the c diff and dementia are quite the game changer.  I would let everyone know exactly what you and your children are able to do and not. That you will not be available to do respite care if a caregiver quits, care needs increase and she has to wait for a bed opening or anything. Text or email so everyone has is writing where you stand. She isn't making good decisions and isn't going to be more or less happy with you either way. I wouldn't be involved with taking her home and setting her up. Maybe sil needs to take a break from work and care for her the way she wants things done if she wants her home.

I have seen people with c-diff cared for at home but without a spouse in the middle of things and 24 hour personal care and housekeeping. They were extremely well paid so most of them did not quit.

And the visiting, you have to clean surfaces yourselves or trust that someone has. Will she use the same bathroom as others? Will they be able to wash hands and clean properly? Sort out how you and your dh  can visit without contracting the c diff yourselves.

I have a younger friend who had  this and they used a separate bathroom and were scrupulous at cleaning. It took forever to go away.

So many hugs going your way.

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@Harriet Vane thanks for the explainer, that helps me be less freaked out somewhat. The nurses must be doing a good job cleaning as no one else has gotten sick. Still I’m glad dh just goes and stands and doesn’t touch anything. He’s going over after work so will catch me up on her afternoon later. When I talked to him today he was just kind of done with the lot of them. He also said if she is so coherent to know that fil leaves her and gets angry about it, there’s no way he’ll let her go anywhere. As it is he only leaves at night after she has fallen asleep and is back at like 7am.

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21 minutes ago, Starr said:

This is all really hard but the c diff and dementia are quite the game changer.  I would let everyone know exactly what you and your children are able to do and not. That you will not be available to do respite care if a caregiver quits, care needs increase and she has to wait for a bed opening or anything. Text or email so everyone has is writing where you stand. She isn't making good decisions and isn't going to be more or less happy with you either way. I wouldn't be involved with taking her home and setting her up. Maybe sil needs to take a break from work and care for her the way she wants things done if she wants her home.

I have seen people with c-diff cared for at home but without a spouse in the middle of things and 24 hour personal care and housekeeping. They were extremely well paid so most of them did not quit.

And the visiting, you have to clean surfaces yourselves or trust that someone has. Will she use the same bathroom as others? Will they be able to wash hands and clean properly? Sort out how you and your dh  can visit without contracting the c diff yourselves.

I have a younger friend who had  this and they used a separate bathroom and were scrupulous at cleaning. It took forever to go away.

So many hugs going your way.

Being at home worries me. She has had so many accidents at home and instances where she makes a mess in the bathroom, which is wallpapered and the main bathroom in the house. It will have to be her main bathroom if they move their bedroom downstairs and I guess everyone else will have to use the upstairs bathroom. If they go back to normal, nephew will have the major chunk of babysitting, but as far as I know he doesn’t help her in the bathroom. Then three different ladies for mornings only, only one is a nurse’s aid. Nephew doesn’t sit with mil when fil finishes his chores for the day, then it’s him all afternoon, evening, overnight unless someone stops by. I bring meals with leftovers several times a week. I do not trust fil to sanitize the bathroom. So if we visit, we won’t stay long enough to use bathroom. I got a group text today talking about how Christmas is going to be like normal, so 30-32 people there. I just dont know if the c-diff will be gone by then? Last year at New Years every single family got covid, every last one, except ours because we didn’t go to the New Years party, if that tells you anything. 
 

The nurses aid’s son bowls on the same league as my ds, so I am hoping to talk to her tomorrow.

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C Diff doesn’t clear quickly, it will still be around for Christmas. It often takes a long, long taper off of the abx to fully clear. I had recurring C Diff for years. Years of misery. Those spores have staying power. 

Good call on DD. Just no. There’s a reason paid caregivers quit when C Diff comes into play. 

Please consider starting DH, at least, on Florastor. Ideally, start your whole family, but I know it’s pricey. Costco has a good price, BTW.  

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She’ll probably have c-diff for the rest of her life, and even if she gets a random clear test it will come back. You’ll know when she has it because the smell is… one of the worst smells In medicine. 

I think the type of PPE used for it changed in the pandemic because of shortages. Not just in PPE, but it takes several minutes to get all that crap on, and another 5 to get it off and wash properly. If you’re in and out of that room 18 times a day it eats a lot of time. 
 

Note: I stopped working in hospitals after the 2009 swine flu pandemic and quit all nursing more than 10 years ago, so I’m going by friends complaining about it, not personal recent knowledge.

Edited by Katy
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I concur with the others. It will not be gone at Christmas. I doubt your FIL will sanitize effectively. The only chance is if they do the pulsed medicine combo I described AND meticulous sanitizing with the correct cleaning agent. 

 

 

Edited to add--even then, there's only two weeks until Christmas. That's only time enough for the first prescription. If they do Flagyll only it'll be quite some time of ups and downs. If they do the med combo, she will still need at least a month of pulsed meds after. I have heard of people like Spryte who struggle with it for years. I myself took a full six months on the med combo before I was clear, and after that I continued on Florastor for years.

Edited by Harriet Vane
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I agree with everyone it will not be gone that quickly, though if you are lucky enough to have a doctor who would prescribe a transplant protocol, it actually could be. I don’t know how that would go with someone with dementia though.

I do want to encourage you that it really shouldn’t be something that everyone else is going to catch from her. If anyone takes any antibiotics or otherwise has a compromised immune system, they should stay far, far away, but typically a healthy system not taking any kind of antibiotic will be able to keep C diff from taking over. In your MIL’s situation, your FIL would certainly be at risk. He should be dosing himself generously with Florastor, and I would have everyone doing it just as a precaution, but I really wouldn’t expect a healthy young visitor who doesn’t go into the bathroom to be likely to contract it. The majority of infants are harmlessly colonized with c diff, and parents don’t don hazmat suits to change diapers (though many moms have gotten c Diff after going on antibiotics for a uti or mastitis while caring for their baby). Her bathroom needs to be cleaned with bleach and like someone else mentioned, hand sanitizer won’t help at all to kill it. Soap and water.

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FIL had cdiff in October and I still wear gloves when I go to his apartment (and I wear my hospital shoes), if that tells you anything. He never made it home (stroke, he's in a SNF now). We're moving his stuff out right now. This is after I already went through the whole place with bleach. 

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So Thursday lady who is a nurses aid said she should be over c diff by the time they discharge her and definitely should be fine for Christmas but she’d keep an eye on it. She plans to continue one morning a week with mil. I asked dh to ask the nurse about it this morning and she said it would take 3-8 days to clear it up. 

 

Edited by saraha
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35 minutes ago, saraha said:

I asked dh to ask the nurse about it this morning and she said it would take 3-8 days to clear it up.

They may be able to get her to produce a negative test before discharge, but the chances that it will be permanently gone at that point and not return aren’t great, unfortunately. I do hope it will be the case for her, though. 

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51 minutes ago, saraha said:

So Thursday lady who is a nurses aid said she should be over c diff by the time they discharge her and definitely should be fine for Christmas but she’d keep an eye on it. She plans to continue one morning a week with mil. I asked dh to ask the nurse about it this morning and she said it would take 3-8 days to clear it up. 

 

I sincerely hope this is the case. All I can say is that is not how it went down for me, but I would absolutely rejoice if your beloved MIL has an easier time.

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5 minutes ago, Harriet Vane said:

I sincerely hope this is the case. All I can say is that is not how it went down for me, but I would absolutely rejoice if your beloved MIL has an easier time.

Exactly what I was thinking. I was younger when I got it and cognitively aware and was able to sanitize the heck out of everything and I still had relapses. Even if she gives a negative test in the hospital with all the people there cleaning up after her, as soon as she goes home she has a high chance of relapse. And I somehow don’t think that they will clean as thoroughly there since her main caregivers don’t help with toileting. 

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Yeah, I was super surprised when nurses aid lady was all no big deal about it after hearing you guys’ stories. She was like, you can spray bleach cleaner on that wallpaper if she gets crazy with it and make sure whoever uses gloves and washes hands but she acted like it was no big deal. Dh went to get college kid 2 hours away today so haven’t heard any updates today.

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Got my third group text in the past two weeks, same as the other two, can’t be there tomorrow, who will go give dad a break at lunchtime? Knowing it would have to be me or bil’s wife. No one responded and dh didn’t ask me to do I am not volunteering. 😈

Poor dh though, he has a habit of seeing the world as he thinks it should be instead of how it is and is sometimes really caught off guard when reality doesn’t line up. Today he had his knickers in a twist because no one went to visit his parents today. I asked what do you mean? You said bil went this morning. He said no I mean other than us, no one went to see them. The weekends are supposed to be when you go visit people in the hospital. (Keep in mind he has never visited anyone in the hospital but me and now his mom) I gently asked, Like who besides us should visit? (Mil only has one living sibling and a handful of nieces and nephews, but none of them close. She has a sil she and fil would visit often, but she never leaves her house. They have no friends and don’t talk to anyone except people from their church, at church only. Fil has two brothers in the area, one has dementia) He stood and really thought about it for a minute and said people from their church! I said well, everyone has probably heard from sil that she has cdiff and it is two weekends before Christmas. People probably don’t want to risk getting sick or have holiday plans. He didn’t like it, but had to realize I was right. Everyday it’s something new

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I mean, she thinks they can all handle it, and I’m afraid she is expecting me to contribute, so if they can all handle it, then handle it. He doesn’t think they need help, so do it on your own. I’m just aggravated. I know I come across as my way or the highway, but I don’t really feel like enabling them. I absolutely could change my lunch plans with my friend tomorrow but since dh didn’t ask me to and he has to work, I guess fil will just have to take his own break at lunch. She will be fine for an hour or two. I feel like an impetuous child but blah, I’m just over it

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I actually think it is wise not to step in too much.  It’s the only thing that will make folks see that they need more help than the family can possibly provide on their own.  I’m not saying to do it strategically, but more that in cases like this since you already have plans (and staying home to take a breather counts as ‘plans’ BTW), you don’t necessarily need to change them and probably shouldn’t every time.

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11 minutes ago, saraha said:

I mean, she thinks they can all handle it, and I’m afraid she is expecting me to contribute, so if they can all handle it, then handle it. He doesn’t think they need help, so do it on your own. I’m just aggravated. I know I come across as my way or the highway, but I don’t really feel like enabling them. I absolutely could change my lunch plans with my friend tomorrow but since dh didn’t ask me to and he has to work, I guess fil will just have to take his own break at lunch. She will be fine for an hour or two. I feel like an impetuous child but blah, I’m just over it

You are definitely not an impetuous child. You and DH told them many months ago that going it alone is not sustainable. They need to just keep running right into the consequences of their own decisions and actions. 🤷🏻‍♀️
 

You are 100% in the right on not enabling them. And especially when the only communication with you is when they want you to do something for them. You're a lot nicer about it than I would be. 👿

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