Prayers for dh’s family please

[LifeLovePassion]

I'm sorry. It is very much in a place of it has to get worse before it can get better. 

Well...for that price and all they will quickly realize "some care" is a gross exaggeration and help won't last long. 

[saraha]

Yeah, that would be interesting, but the text came in the group with sil and I and is just a copy. If by some miracle she does find someone, I will try to make sure they know, even if they find out their first day of work and I have to drive over. Nurses aid that works on Thursday just texted me and said she is not going to find anyone for $15. 

[BusyMom5]

Well, good luck with that! 

My DD has actually been staying with an elderly lady a few days and overnight once a week.  The family wants to keep her out of nursing home as long as possible.   Not dementia, broken hips, or the mess-cleaning that you have going on, but its very hard work.  They have 3-4 people working around the clock,  plus 3-4 siblings taking turns.  The family has known us for years,  and messaged her to ask if she was willing to do this.  They were very upfront about all conditions, and are organized with writing reports from caregiver to caregiver,  emergency contacts (its a family farm, too, so right down the road), even while DD is there, family stops in to check on her.  

Its very hard to find someone that is willing to help an elderly person without all the issues you have.  Your family needs skilled nurses, and I doubt any would agree under current circumstances to help once they see exactly what is happening.   I wouldn't let my DD help.  I would allow her to come clean and cook, but no caregiving.  This is an exhausting job, it isn't sit with a little old lady, talk, clean, and cook.  It requires skill, a knowledge of dementia, correct pottying and cleanup, lots of patience, and a willingness to work for SIL and FIL.  

Just keep doing what you are doing.  I'd probably call the nursing homes again to inquire what is involved considering her current situation (broken hip, advanced dementia,  C-Diff).  This way you have the info!  Id also talk to fil lovingly.  He wants to care for her, but he can't.  That has to be hard to accept.  He may be closer than you think, after having to deal with all of this.  I'd gently say that she wouldn't want him to live like this.  Their home is full of happy memories,  let it stay that way.  Don't fill it with these memories.  Hugs!  I will be reading and thinking of your family over the holidays!  If you live anywhere near us, the next week will be brutally cold.  Chopping ice, feeding cows, that will take a lot of time every day. 

[Carol in Cal.]

One question—is she being treated for the (likely) C diff recurrence?

[saraha]

2 minutes ago, Carol in Cal. said:

One question—is she being treated for the (likely) C diff recurrence?

Dh asked sil if she is still on the antibiotic she was on in the hospital, but sil said she doesn’t think so. Dh and I both think that’s probably what it is. I’m trying not to think about Christmas Day.

Edited December 20, 2022 by saraha

[BusyMom5]

This may be silly,  but does your hospital have digital records?  Where you can log-in and see exactly what's going on medically?  Medications prescribed, tests and results,  notes from Drs?  Ours does,  and all siblings have access to the information if they choose to go look.    

[saraha]

11 minutes ago, BusyMom5 said:

This may be silly,  but does your hospital have digital records?  Where you can log-in and see exactly what's going on medically?  Medications prescribed, tests and results,  notes from Drs?  Ours does,  and all siblings have access to the information if they choose to go look.    

Yes but only sil and bil have the code. They didn’t give it to dh, but I don’t think he asked for it either 

[Mrs Tiggywinkle Again]

We can’t even find an agency that will help with my grandmother because she needs incontinence care, and here, at least, that requires a CNA. And the CNAs are all employed by hospitals and skilled nursing, while the private home companies employ home health aides.  
Incontinence care, IMHO, is very difficult to find in the community setting.

I live in a LCOL farming area, and $15 would still be too low. 

[Tiberia]

I’m a professional elder caregiver. I get $18 per hour. I would not take this job because of the c-diff and the frequent diarrhea and the low pay. Cleaning, disinfecting, and laundering frequent blowouts would take up most of my working hours. Elder care to me is light housekeeping, meal preparation, help with daily activities like dressing and toileting, and companionship. Toileting should be mostly independent.
 

I love elderly people and do this job partly as a gift to them and in honor of my parents, who were well-cared for at the ends of their lives. Your situation sounds like something my agency would take on for a while, but we would have trouble staffing because of the diarrhea issues and the fall risk and the heavy care load. It has been hard to find workers, even with the easiest of clients. I hope you find someone, but I would definitely be lining up skilled nursing options. 
 

i think you and your dh have done an admirable job of advocating for common sense solutions.

[mlktwins]

No one is going to stay to deal with that for $15/hour and also to deal with the crazy/controlling SIL. 

The whole family could have some peace about everything if they would just find her a nice place and spend the money. She might thrive a bit in a different situation. 

I don’t particularly care to be spending $218,400 a year just on caregiving, but it is the right thing to do for my dad - and he is a pain in the butt to deal with. 

[Grace Hopper]

23 minutes ago, saraha said:

Yes but only sil and bil have the code. They didn’t give it to dh, but I don’t think he asked for it either 

BIL may be more willing to share it now that things are getting harder. It’s honestly ridiculous that your dh doesn’t have it. 

[Soror]

SIL is a f*in nutso control freak. Reiterating that she's not going to a home? Conveniently leaving out that she needs toileting care. Fast food jobs are paying nearly $15 an hour here why would you deal with control freaks and poop for that pay? And she thinks 15 is the upper end of the pay range. Oh vey. Now she's looking to screw over her friends. Because this care is just so easy but yet she can't lift a finger to do it. Unbelievable.

[Spryte]

I have no words for all this. Just sympathy and hugs.

FWIW, our next door neighbor is a CNA (I think? She was a nurse prior to coming to the US, now a CNA). She works in elder care and helped us find assistance for my (much more active) mom. Mostly, we paid $18 - $22 per hour. They sat with her and visited, microwaved the meals I prepared in advance and ate with her for company. No toileting assistance, but twice a week they assisted with a shower. My mom could do most ADLs, so there wasn’t a ton of work. No laundry, no cleaning messes. One sweet woman just adored my mom, and helped organize her room, and was just so sweet about listening to my mom’s stories. She was actually charging $10 per hour, and we tipped her like crazy, provided meals for her, and gave her several extra weeks pay at Xmas and in summer. We knew that she was a unicorn, and tried hard to make her life easy.

The caregiving companies around here charge a bit more, in the $24 - $30 range, and some require a minimum of hours per week.

Disclosing the C Diff is an ethics issue. I am astounded that SIL thinks it’s ok to not mention that. If someone has an infant at home, or a child/spouse with immune issues — yeh, no. 

As for Christmas — Florastor fits in stockings! (I hope that made you laugh, too!)

[Grace Hopper]

2 minutes ago, Spryte said:

 

Disclosing the C Diff is an ethics issue. I am astounded that SIL thinks it’s ok to not mention that. If someone has an infant at home, or a child/spouse with immune issues — yeh, no. 

 

THANK YOU

I noticed some laughing emoji reactions on my other post but I was totally serious. It’s unethical not to disclose this fact. 

[Grace Hopper]

Are you all planning to spend Christmas Day there?

[saraha]

4 minutes ago, Grace Hopper said:

THANK YOU

I noticed some laughing emoji reactions on my other post but I was totally serious. It’s unethical not to disclose this fact. 

I don’t know that she won’t disclose, she just didn’t in her text to her friends. 

[Innisfree]

I do understand the fear of consigning a loved family member to a nursing home, but SIL needs to understand that keeping her at home doesn’t prevent abuse.

We’ve already said that what’s already been happening is neglect, at a minimum. Given the broken hip, the initial denial that she couldn’t reasonably climb the stairs, and the repeated falls, I actually think the situation is past neglect and into abuse. This happened when *family members who love her* were on duty. People get overwhelmed; it happens. They react based on frustration and ignorance (“she doesn’t look like she’s hurt”) and exhaustion.

Now assume the caregiver isn’t a family member. The frustration and ignorance and exhaustion are still there. Elders are abused by caregivers, both family members and hired caregivers, all.the.time. It happens in the home, as well as in nursing homes. Hiring friends of friends isn’t a reliable safeguard. FIL can’t always be watching.

It might even be more likely to happen when the family is trying to get by with one caregiver, or just a few. It doesn’t matter if they’re making that choice in order to provide more consistent care or in order to minimize costs; people get exhausted. They get fed up and overwhelmed. No one should have to do this job continuously— there should be enough people rotating that everyone gets to sleep a full eight hours and get away from the situation regularly.

Yes, there are bad nursing homes, no question. But there are also reasonably good ones, and some that are excellent. The indignities of extreme old age are terrible. But a rotating staff of professionals, well supervised, in an environment designed for the purpose, can be better in most ways than a haphazard arrangement at home.

 I know I’m preaching to the choir. But if you ever get a chance to put in a word, mention that abuse and neglect happen at home as well as in nursing homes. Keeping her home isn’t the same as keeping her safe.

[saraha]

11 minutes ago, Grace Hopper said:

Are you all planning to spend Christmas Day there?

That is what we always do and as far as yesterday that was still the plan. I don’t know if that has changed. It is stressing me out because before last night and today’s diarrhea explosion I was already thinking of how we would get out of the eating part. Sil and fil are both like we haven’t gotten sick taking care of her so 🤷🏼‍♀️. I know dh is going to feel torn between trying to have a nice Christmas there and me saying we are not eating there. Dh and I have always disagreed over how Christmas Day goes (I think there are like 6 year old threads to prove it) and I’m afraid this year is going to suck even harder. I already have all the fixings for our own Christmas dinner and am hoping that the upcoming storm makes getting together for Christmas impossible. And trying not to think about not. Whenever the thoughts start creeping in I just remind myself that things can change drastically every day.

Thankfully it is looking like Christmas at my moms will probably be canceled or postponed.

Edited December 20, 2022 by saraha

[Harriet Vane]

The c diff blowouts are a REALLY big deal. Her infection is not under control. It’s imperative to figure out if she is taking meds for that. If she is not taking anything and having episodes like this, then this will go downhill fast. As in — sepsis in a day or two. I know because that is what happened to me.

If she is only taking Flagyll, someone needs to tell her doctor exactly what is happening (frequency and volume) and layer on a prescription for Vancomycin or Fidaxomicin.

There are strict and specific protocols for sanitation with c diff. Are they using the correct cleaning solution? Does fil have disposable gloves?

If the couch has been saturated, it needs to leave that house NOW. Same with a mattress. It is not salvageable imo.

They need thick disposable underpads under her in addition to diapers. 

Edited December 20, 2022 by Harriet Vane

[saraha]

4 minutes ago, Harriet Vane said:

The c diff blowouts are a REALLY big deal. Her infection is not under control. It’s imperative to figure out if she is taking meds for that. If she is not taking anything and having episodes like this, then this will go downhill fast. As in — sepsis in a day or two. I know because that is what happened to me.

If she is only taking Flagyll, someone needs to tell her doctor exactly what is happening (frequency and volume) and layer on a prescription for Vancomycin or Fidaxin.

There are strict and specific protocols for sanitation with c diff. Are they using the correct cleaning solution? Does fil have disposable gloves?

If the couch has been saturated, it needs to leave that house NOW. Same with a mattress. It is not salvageable imo.

They need thick disposable underpads under her in addition to diapers. 

Yup to all of this. I don’t know what they did to clean. 

[Scarlett]

2 hours ago, Grace Hopper said:

Please hit reply all and say btw just so you know she has C-diff. 

 

1 hour ago, Grace Hopper said:

THANK YOU

I noticed some laughing emoji reactions on my other post but I was totally serious. It’s unethical not to disclose this fact. 

I just wanted to say that I was one who lol at your first post but not because I don’t think it is a serious matter. I was just picturing SIL’s face when everyone in that group text was told that key piece of info. 

[Grace Hopper]

5 minutes ago, saraha said:

Yup to all of this. I don’t know what they did to clean. 

Yup? Not sure what you’re confirming. I assume the circumstances, but not the knowledge of medications. 
 

I’d also be concerned about dehydration. 

[Grace Hopper]

Just now, Scarlett said:

 

I just wanted to say that I was one who lol at your first post but not because I don’t think it is a serious matter. I was just picturing SIL’s face when everyone in that group text was told that key piece of info. 

Oh yes that would be a look for sure I bet!

[saraha]

6 minutes ago, Grace Hopper said:

Yup? Not sure what you’re confirming. I assume the circumstances, but not the knowledge of medications. 
 

I’d also be concerned about dehydration. 

I meant yup, I agree with everything you are saying. They need to do all these things, but I don’t know how much of it is happening. The Tuesday lady made sure there was gloves there the last time she worked. I guess she worked today. dh has stopped updating me until just now when he came in and said he’s running up for his dads feeding. I asked if sil knows he’s off the rest of the week and he just said yes and left 🙄Everything I know is second hand through dh updating me or me asking him questions. I asked about the antibiotics and he said fil said they took her off when she left the hospital. He doesn’t have access to her medical information.

Edited December 20, 2022 by saraha

[KSera]

2 hours ago, saraha said:

Dh asked sil if she is still on the antibiotic she was on in the hospital, but sil said she doesn’t think so. Dh and I both think that’s probably what it is.

Do you know if she (and FIL) are taking Florastor? They should be taking it, and in sizeable doses. I would work up to that over a few days, though, with 2 capsules 3 times a day the goal. Fil could take less than that, especially since they are expensive.

 

19 minutes ago, Harriet Vane said:

The c diff blowouts are a REALLY big deal. Her infection is not under control. It’s imperative to figure out if she is taking meds for that. If she is not taking anything and having episodes like this, then this will go downhill fast. As in — sepsis in a day or two. I know because that is what happened to me.

If she is only taking Flagyll, someone needs to tell her doctor exactly what is happening (frequency and volume) and layer on a prescription for Vancomycin or Fidaxomicin.

 

Agree very much with this. Flagyl doesn't tend to work very well and Vancomycin tends to work initially and then relapse. My understanding is the Fidamoxicin might be less likely to relapse, but I think the jury might be out? I'm not as familiar with it. In any case, she's clearly undertreated and c diff in an elder can quickly become fatal. We had a family friend die of it (his wife had it first and recovered). And he was an older man in previously decent, active health. Perhaps SIL doesn't understand the seriousness?

[Harriet Vane]

2 minutes ago, KSera said:

Do you know if she (and FIL) are taking Florastor? They should be taking it, and in sizeable doses. I would work up to that over a few days, though, with 2 capsules 3 times a day the goal. Fil could take less than that, especially since they are expensive.

 

Agree very much with this. Flagyl doesn't tend to work very well and Vancomycin tends to work initially and then relapse. My understanding is the Fidamoxicin might be less likely to relapse, but I think the jury might be out? I'm not as familiar with it. In any case, she's clearly undertreated and c diff in an elder can quickly become fatal. We had a family friend die of it (his wife had it first and recovered). And he was an older man in previously decent, active health. Perhaps SIL doesn't understand the seriousness?

C diff tends to recur, which is why a pulsed regimen is so important. 

Stage 1 - 2 weeks on combo Flagyll + Fidaxomixin OR Vancomycin

Stage 2 - If infection appears to be controlled, can drop the Flagyll and go to Fidaxomicin or Vancomycin on a pulsed regimen. Week one daily. Week two go to fewer doses per day. Week three take meds every other day. Week four take meds every two days. And so on. 

Bottom line--C diff has a HIGH rate of recurrence. This med combo pulsed intermittently over a long time is the only known effective cure aside from a fecal transplant (which is not likely to be approved for a dementia patient).

[saraha]

3 minutes ago, KSera said:

Do you know if she (and FIL) are taking Florastor? They should be taking it, and in sizeable doses. I would work up to that over a few days, though, with 2 capsules 3 times a day the goal. Fil could take less than that, especially since they are expensive.

 

Agree very much with this. Flagyl doesn't tend to work very well and Vancomycin tends to work initially and then relapse. My understanding is the Fidamoxicin might be less likely to relapse, but I think the jury might be out? I'm not as familiar with it. In any case, she's clearly undertreated and c diff in an elder can quickly become fatal. We had a family friend die of it (his wife had it first and recovered). And he was an older man in previously decent, active health. Perhaps SIL doesn't understand the seriousness?

I don’t know. I sent an article about floraster to dh. He told me today he was going to suggest it to sil, but then she said she caught fil eating off mil’s plate and told him he’s not supposed to do that and he said why not we’ve been doing it the whole time. So on top of people not really understanding the cdiff, fil was finishing mil’s plates at the hospital so they didn’t really know what she was eating. I am so frustrated and dh is stressed and no one is happy. 
 

I told him I have done all kinds of research if he’s interested in any of it, he just said thanks. I think the fact that sil and fil are not sick just makes me look like an over worrier.

[saraha]

I’m down in my back the last couple of days so all I have to do is sit, read and catastrophize. Plus dh has stopped updating me even though I can hear his phone going off. I hope he takes going over there for feeding as an opportunity to talk to fil and sil if she is still there. 

Edited December 20, 2022 by saraha

[Grace Hopper]

8 minutes ago, saraha said:

I don’t know. I sent an article about floraster to dh. He told me today he was going to suggest it to sil, but then she said she caught fil eating off mil’s plate and told him he’s not supposed to do that and he said why not we’ve been doing it the whole time. So on top of people not really understanding the cdiff, fil was finishing mil’s plates at the hospital so they didn’t really know what she was eating. I am so frustrated and dh is stressed and no one is happy. 
 

I told him I have done all kinds of research if he’s interested in any of it, he just said thanks. I think the fact that sil and fil are not sick just makes me look like an over worrier.

I’m thinking if either of them were having bathroom issues, neither would admit it. 

[KSera]

11 minutes ago, saraha said:

I don’t know. I sent an article about floraster to dh. He told me today he was going to suggest it to sil, but then she said she caught fil eating off mil’s plate and told him he’s not supposed to do that and he said why not we’ve been doing it the whole time. So on top of people not really understanding the cdiff, fil was finishing mil’s plates at the hospital so they didn’t really know what she was eating. I am so frustrated and dh is stressed and no one is happy. 
 

I told him I have done all kinds of research if he’s interested in any of it, he just said thanks. I think the fact that sil and fil are not sick just makes me look like an over worrier.

Honestly, it's not at all surprising that sil and fil aren't sick; more often than not, family members don't get it. That doesn't mean they shouldn't be taking precautions though, and everything changes if one of them needs to take an antibiotic for anything themselves. They are at VERY high risk at that point. Regardless. MIL is sick and that's what they need to be taking care of. MIL should be taking florastor, and at this point that is mainstream enough that I would consider it negligent of a doctor not to instruct a patient with c diff to do so.

10 minutes ago, saraha said:

I’m down in my back the last couple of days so all I have to do is sit, read and catastrophize.

I'm sorry about your back! That's miserable and pain makes everything harder to deal with.

[TexasProud]

Is there any way a social worker could come out to evaluate at the house? That was part of hospice.  That said, she was pretty useless as she thought my mom and stepdad were just fine with their set-up ( which then proceeded to fall apart within 2 days. I knew it would. I was so frustrated.  I wanted her to reinforce the caregivers, but she was like...oh they are fine.

Can your dh call the hospital and explain her relapse?

[saraha]

34 minutes ago, TexasProud said:

Is there any way a social worker could come out to evaluate at the house? That was part of hospice.  That said, she was pretty useless as she thought my mom and stepdad were just fine with their set-up ( which then proceeded to fall apart within 2 days. I knew it would. I was so frustrated.  I wanted her to reinforce the caregivers, but she was like...oh they are fine.

Can your dh call the hospital and explain her relapse?

I don’t know what good calling the hospital will do. He’s been gone a while, I hope that means they are having a conversation.

ETA: unless you meant to know what she should do? I was thinking about it the wrong way, like they could make her do something. But now I get it. I asked dh if they could just take her back to the e r but he said no.

Edited December 20, 2022 by saraha

[KSera]

7 minutes ago, saraha said:

I don’t know what good calling the hospital will do. He’s been gone a while, I hope that means they are having a conversation.

ETA: unless you meant to know what she should do? I was thinking about it the wrong way, like they could make her do something. But now I get it. I asked dh if they could just take her back to the e r but he said no.

Do you know if anyone has communicated the c diff relapse to her doctors? If not, the doctors definitely need to know. It can't be left untreated and it's possibly she could end up hospitalized for it again (perhaps the reason they aren't communicating it? Perhaps they think c diff just means diarrhea and don't realize it's potentially fatal?)

[Grace Hopper]

3 minutes ago, KSera said:

Do you know if anyone has communicated the c diff relapse to her doctors? If not, the doctors definitely need to know. It can't be left untreated and it's possibly she could end up hospitalized for it again (perhaps the reason they aren't communicating it? Perhaps they think c diff just means diarrhea and don't realize it's potentially fatal?)

Just mentioning too that at this stage she should be following up with her regular primary care physician. 

[prairiewindmomma]

SarahA—I don’t know that worrying or trying to fix anything is going to do anything but make you crazy. Things are going to play out as they will—obviously if you or Dh had the power to fix things, you would have. It’s got to be hard to sit there and watch this all play out.

Hugs!

If Dh is on steroids because of his eyes or other issues, I would consider Florastor for him. Otherwise, I would try to work on having a good atmosphere at home. 
 

 

[Catwoman]

I don't know about everyone else, but there's no way my family would be going to anyone's house for Christmas dinner if someone there had C-diff. And the fact that your MIL is having such terrible diarrhea would make me all the more determined to stay home.

[saraha]

50 minutes ago, KSera said:

Do you know if anyone has communicated the c diff relapse to her doctors? If not, the doctors definitely need to know. It can't be left untreated and it's possibly she could end up hospitalized for it again (perhaps the reason they aren't communicating it? Perhaps they think c diff just means diarrhea and don't realize it's potentially fatal?)

Dh said this morning that sil put a call into her primary care doctor, but he hadn’t heard anything else about it

[Faith-manor]

3 minutes ago, Catwoman said:

I don't know about everyone else, but there's no way my family would be going to anyone's house for Christmas dinner if someone there had C-diff. And the fact that your MIL is having such terrible diarrhea would make me all the more determined to stay home.

This. cDiff can kill. It is the kind of communicable disease that should be avoided like plague. OP, do not go over there. Don't let your kids go over there. Frankly, since sil, bil, and fil are crazy, I would encourage dh to NOT go into the house and just speak with his dad from the doorway.  You do not want this to come to your house.

[saraha]

41 minutes ago, prairiewindmomma said:

SarahA—I don’t know that worrying or trying to fix anything is going to do anything but make you crazy. Things are going to play out as they will—obviously if you or Dh had the power to fix things, you would have. It’s got to be hard to sit there and watch this all play out.

Hugs!

If Dh is on steroids because of his eyes or other issues, I would consider Florastor for him. Otherwise, I would try to work on having a good atmosphere at home. 
 

 

I know, I think I’m frustrated, my back hurts, Christmas is a triggering time for me and the uncertainty of whether I’m going to have a fight on my hands about Christmas and the upcoming storm are just pushing me over the edge.

[saraha]

3 minutes ago, Faith-manor said:

This. cDiff can kill. It is the kind of communicable disease that should be avoided like plague. OP, do not go over there. Don't let your kids go over there. Frankly, since sil, bil, and fil are crazy, I would encourage dh to NOT go into the house and just speak with his dad from the doorway.  You do not want this to come to your house.

I asked dh if he could feed and fil stay in the house and he said depends on fil. I guess he is still over there and bil showed up with a steam cleaner for the couch and bed. I am looking more and more like I’m overdramatizing the cdiff thing since no one else has gotten sick. 🙄 when he walked out I said do t touch or sit on anything and he just rolled his eyes. No one around us seems too worried about it, except me. 
This will sound crazy but I’m hoping that sil’s daughter or daughter in law says they won’t bring their kids over because of cdiff and Christmas gets postponed. 

[prairiewindmomma]

On one side of my family, the crazier the events got, the more people rigidly locked into their dysfunctional behaviors. It was a “grit and make it through” dynamic and anyone who pointed out the insanity of it got shoved to the side. This is especially true with events happened around the holidays—it was a “must keep the traditions” going even if it kills us dynamic. 
 

My best advice is to know you aren’t insane. They will try to spin it like you are the unreasonable one. You can’t change their opinions, but you don’t have to join their circus either. 
 

I think that’s why it’s important to keep home life calm for Dh. If this isn’t a dealbreaker between you and Dh, then don’t let it become a wedge, iykwim. Odds are the family will implode entirely when MIL and FIL both die because the siblings don’t seem to like each other much, so hang in there for the long haul.

[KSera]

2 hours ago, Grace Hopper said:

Just mentioning too that at this stage she should be following up with her regular primary care physician. 

Definitely they should. She should probably have a specialist for the c diff though. Typically an infectious disease doctor is who will handle c diff, though sometimes it's a GI doc. I would go for the infectious disease doctor, given a choice.

1 hour ago, Faith-manor said:

This. cDiff can kill. It is the kind of communicable disease that should be avoided like plague. OP, do not go over there. Don't let your kids go over there. Frankly, since sil, bil, and fil are crazy, I would encourage dh to NOT go into the house and just speak with his dad from the doorway.  You do not want this to come to your house.

I do want to reiterate there's a middle ground here. The kids and everyone else are at more risk of catching RSV or flu or covid from a gathering. As I said earlier in the thread, the majority of infants are colonized with c diff, and we don't keep everyone away from ever changing a baby's diaper. People who are susceptible (antibiotics, weakened immune system, etc) need to be exceedingly extra cautious, and I wouldn't have them there. And I'm saying this as someone who has very, very close experience with this disease and wouldn't wish it on anyone. But we didn't keep family members away at all. Most healthy people not on antibiotics aren't going to catch it. I say that just to hopefully calm some of the anxiety about that aspect. What I am worried about is MIL in this scenario. She is at high risk of the c diff being very dangerous. 1 in 11 people over 65 who catch c diff from a healthcare facility will die from the infection within one month. Part of that is because people over 65 who have been in a healthcare facility long enough to catch c diff there are usually very ill and have a compromised system already. The risk is not the same to a member of the community.

 

eta: Let me put the risk in perspective one more way: everyone here is more at risk of getting c diff if they take an antibiotic for a uti or some other infection than they are of getting it because they visited someone who had it.

Edited December 21, 2022 by KSera

[Harriet Vane]

25 minutes ago, KSera said:

Definitely they should. She should probably have a specialist for the c diff though. Typically an infectious disease doctor is who will handle c diff, though sometimes it's a GI doc. I would go for the infectious disease doctor, given a choice.

I do want to reiterate there's a middle ground here. The kids and everyone else are at more risk of catching RSV or flu or covid from a gathering. As I said earlier in the thread, the majority of infants are colonized with c diff, and we don't keep everyone away from ever changing a baby's diaper. People who are susceptible (antibiotics, weakened immune system, etc) need to be exceedingly extra cautious, and I wouldn't have them there. And I'm saying this as someone who has very, very close experience with this disease and wouldn't wish it on anyone. But we didn't keep family members away at all. Most healthy people not on antibiotics aren't going to catch it. I say that just to hopefully calm some of the anxiety about that aspect. What I am worried about is MIL in this scenario. She is at high risk of the c diff being very dangerous. 1 in 11 people over 65 who catch c diff from a healthcare facility will die from the infection within one month. Part of that is because people over 65 who have been in a healthcare facility long enough to catch c diff there are usually very ill and have a compromised system already. The risk is not the same to a member of the community.

 

eta: Let me put the risk in perspective one more way: everyone here is more at risk of getting c diff if they take an antibiotic for a uti or some other infection than they are of getting it because they visited someone who had it.

Yes re her doctors. I had both a GI doc and an infectious disease doc both in the hospital and as my long-term care for a year after I left the hospital.

I disagree on the risk? The nurses in the hospital had war stories about c diff. One emphasized to us how hard she fought for plastic gowns rather than paper because of nurses she knew who got sick. Another nurse in the ICU was really strict with dh about never using the same bathroom as me while the infection was ongoing. A different nurse gave the same emphatic lecture to us/dh when I was discharged. And the whole time I was in the hospital those nurses were really amazing with wiping everything down constantly. So when I left the hospital we relegated the master bath for me alone for months until I stopped taking vancomycin. (I took a med cocktail for roughly six months.)

It’s possible I was just lucky to have attentive nurses during my hospitalization, but I believe all that they told me about the risk and how to handle it.

And honestly the whole experience of getting so dangerously ill so fast and the long years of recovery has left me permanently on high alert. I guess that’s survivor’s bias—I wouldn’t wish that terrible experience on anyone so I lean towards full caution.

That said, I will acknowledge that no one else in my family contracted c diff, so there’s that.

 

ETA—We didn’t keep family away from me once out of the ICU. BUT the big difference between my situation and Saraha’s mil is that we were extremely careful. I don’t think her in-laws are being thorough or careful.

Edited December 21, 2022 by Harriet Vane

[Grace Hopper]

21 minutes ago, KSera said:

Definitely they should. She should probably have a specialist for the c diff though. Typically an infectious disease doctor is who will handle c diff, though sometimes it's a GI doc. I would go for the infectious disease doctor, given a choice.

I do want to reiterate there's a middle ground here. The kids and everyone else are at more risk of catching RSV or flu or covid from a gathering. As I said earlier in the thread, the majority of infants are colonized with c diff, and we don't keep everyone away from ever changing a baby's diaper. People who are susceptible (antibiotics, weakened immune system, etc) need to be exceedingly extra cautious, and I wouldn't have them there. And I'm saying this as someone who has very, very close experience with this disease and wouldn't wish it on anyone. But we didn't keep family members away at all. Most healthy people not on antibiotics aren't going to catch it. I say that just to hopefully calm some of the anxiety about that aspect. What I am worried about is MIL in this scenario. She is at high risk of the c diff being very dangerous. 1 in 11 people over 65 who catch c diff from a healthcare facility will die from the infection within one month. Part of that is because people over 65 who have been in a healthcare facility long enough to catch c diff there are usually very ill and have a compromised system already. The risk is not the same to a member of the community.

 

eta: Let me put the risk in perspective one more way: everyone here is more at risk of getting c diff if they take an antibiotic for a uti or some other infection than they are of getting it because they visited someone who had it.

But it must be disclosed to anyone expected to provide toileting care, family or professional. 

[KSera]

3 minutes ago, Grace Hopper said:

But it must be disclosed to anyone expected to provide toileting care, family or professional. 

Absolutely 100%. 

[Starr]

The Christmas blow out will have new meaning. A few more days of steam cleaning should bother someone. Oh my, I'm so sorry. 

[Faith-manor]

47 minutes ago, KSera said:

Definitely they should. She should probably have a specialist for the c diff though. Typically an infectious disease doctor is who will handle c diff, though sometimes it's a GI doc. I would go for the infectious disease doctor, given a choice.

I do want to reiterate there's a middle ground here. The kids and everyone else are at more risk of catching RSV or flu or covid from a gathering. As I said earlier in the thread, the majority of infants are colonized with c diff, and we don't keep everyone away from ever changing a baby's diaper. People who are susceptible (antibiotics, weakened immune system, etc) need to be exceedingly extra cautious, and I wouldn't have them there. And I'm saying this as someone who has very, very close experience with this disease and wouldn't wish it on anyone. But we didn't keep family members away at all. Most healthy people not on antibiotics aren't going to catch it. I say that just to hopefully calm some of the anxiety about that aspect. What I am worried about is MIL in this scenario. She is at high risk of the c diff being very dangerous. 1 in 11 people over 65 who catch c diff from a healthcare facility will die from the infection within one month. Part of that is because people over 65 who have been in a healthcare facility long enough to catch c diff there are usually very ill and have a compromised system already. The risk is not the same to a member of the community.

 

eta: Let me put the risk in perspective one more way: everyone here is more at risk of getting c diff if they take an antibiotic for a uti or some other infection than they are of getting it because they visited someone who had it.

Our experience was very different. My father's doctors told us we all and to wear scrubs and such around him, then put them immediately in the laundry, and we were all on a med routine. The home health nurse wanted max precautions. Maybe it was because I was so worn down from caring for him, and they thought I would get it or something. But they created an absolutely draconian routine for me and my mother, and were beyond firm that it had to be followed. I have never been more exhausted in all my life. I guess we all have different experiences from which we speak, and doctors have differing opinions about precautions.

[TravelingChris]

I had c. difficile and was told to use s. boulardii,.  Had a second bout that only lasted a day, because that was how long it took for my body to react to the probiotics=they didn't give them to me at the hospital then.  When I was hospitalized for a week with cellulitis of the knee and on very heavy anitbiotics, that time they did give the probiotics at the hospital and told me to continue-which no one ever has to tell me again.  We always have florastor at home and whether it is me (uusualy ) or dh (rarely) who is taking anitbiotics, we take florastor w it.

[mum]

I've been reading this and don't have any advice, but I can share my own experience with FIL last year. I won't go into all the medical details, but my husband's dad passed away last year after a medium length go around with cancer. He wanted no intervention, but hadn't put it in writing. MIL wanted max intervention, which is what happened. It was all quite awful. I had SO many opinions, I am a medical provider after all, plus a compassionate human being who does not like to see others suffer against their verbal wishes (he had dementia in the end too, which is why MIL was allowed to make decisions). 

 I had to keep my mouth shut. My husband did not agree with what his mother was doing regarding his dad's care, and he said ALL that he could say to his mother on many, many occasions. If he had said any more that would have permanently been the end of their relationship. In the first half of the saga I told my husband and my MIL what I thought, and then I said things only to my husband, but he felt pushed by me, and upset about upsetting his mother. And then I had to completely shut up.  What was happening went against everything I believe to be right, and yet it appears that when fatal illness comes into play, it's family members only. We've been married for 30 years, I've known my MIL and FIL since I was 16. And we have always been on excellent terms. Always. But life ending illness just seems to do something even to those long relationships. My FIL finally passed away and we were all greatly relieved. I am glad that I said absolutely nothing to anyone ( except in private to my own mother and sisters who also know my in-laws) about how I thought things should be done. It preserved my relationship with my husband and my MIL. It gave my much food for thought about my own end of life instructions (WRITTEN), and some insight into decisions and elderly parents (by the autumn I was dealing with my own mothers massive heart failure and I realised that what my husband said to me about how HE thought things should be done for my mother was not really so helpful). It was interesting to be the in-law and then blood relative both in the same year.

Anyway, just sharing my own experience...

[KSera]

I just realized I’m not clear if she is still on the antibiotics for the original infection. I assume they stopped them as soon as the c Diff started. Are they being able to keep her sufficiently hydrated? If she’ll drink kefir or miso soup or eat other things with probiotic qualities, every little bit can help reestablish things. But the florastor is key. And if pills are difficult, the capsules can be opened and sprinkled in soft foods like applesauce.

eta: Oh, I keep forgetting to say that the steam cleaning of furniture would be totally insufficient to me. I would consider them a loss at this point and spray all affected surfaces heavily with bleach solution and let dry. But also everything needs covering with plastic and or/chux type pads. I'm all about the washable, but I would use disposable in this instance.

Edited December 21, 2022 by KSera