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My dad currently lives in a large retirement community that has IL, AL, and MC. We chose this place specifically because they told us he would be able to move through the different levels of care as needed. He absolutely needs to move into the assisted living apartments, but they have come back and said that they will not accept him because he has a suprapubic catheter. Please note that he has the tubing changed at his doctor's office once a month and we have caregivers that manage his catheter bag and suprapubic catheter site care under the supervision of a D.PA. I have a call set up next week with regional nursing director. Unfortunately, my contact at the facility did not give me much hope. Is this common for an assisted living facility to not take a person due to catheters, specifically a suprapubic catheter? Does anybody know what recourse I have? Again, I live in Georgia. I know laws are different in different states. He does have a very good elder care attorney, but I really would prefer not to have to go that route. I'm not trying to be combative with the facility, they've been great, but I don't want to move him away from what he knows. He's 86 and in pretty good health otherwise. He just needs additional attention due to strength and balance issues from a stroke couple years ago.

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"What is a suprapubic catheter?

A suprapubic catheter is a hollow flexible tube that is used to drain urine from the bladder. It is inserted into the bladder through a cut in the tummy, a few inches below the navel (tummy button).

Why would someone need a suprapubic catheter? Anyone who cannot empty their bladder may need a catheter. A suprapubic catheter may be chosen because it is more comfortable and less likely to give you an infection than indwelling urethral catheters."

Source: https://www.bladderandbowel.org/surgical-treatment/suprapubic-catheter

If his catheter requires regular cleaning and maintenance, then this is like medical care, which is most likely above what the aids in AL are qualified to do.

I don't have experience with this type of catheter but is it possible to hire a private qualified aid to provide the care it would require if he was able to reside in AL and the facility is not responsible for this part of his care?
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I would approach the facility with options that takes the responsibility off of them. There must be a reason they won’t do this.
My reservation about the above is that you will need to maintain this thru your dads life…
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Bosschick Jan 2023
Thanks. Yes, this is a life-long thing. The stroke he had 1.5 years ago knocked out the communication he had between his brain and bladder.
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I can only guess that his facility is perhaps thinking that once he's in assisted living that they might have to be responsible for the care of his supra pubic catheter, and you'd be surprised just how many health professionals don't have a clue how to do that.
It's shocking actually. I learned that first hand when my late husband got his supra pubic catheter in Sept. 2018. The home health agency we had at the time said that they didn't think they had any nurses on staff that knew how to care for one or change it out.
Thankfully I had his urologist do the first several changes and then my husband ended up in the hospital with aspiration pneumonia and almost died. They did have an urologist change it while he was in ICU, and when he eventually came home under hospice care, the hospice agency had only ONE nurse that was comfortable changing it out and she was a LPN.
Now keep in mind that this hospice agency is the largest in the city I live which has a population of over 250,000 people, so it's not like I live in a rural area. And for them to only have one nurse who knew what she was doing was beyond ridiculous. Yet they wanted that nurse to train ME on how to change it! How ridiculous is that? I told them that she should instead train her co-workers on how to.
Anyway....I digress. Long story short I would just make sure that the facility knows in no uncertain terms that they would not be responsible for having to change out his supra pubic catheter.
Good luck with that.
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Bosschick Jan 2023
Agreed. I will continue to beat the drum that we will be the ones managing all aspects of his catheter care, not their staff.
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Assisted Living is a private business basically, that can make its own rules. In the case of this gentleman is that the ONLY problem he is facing, because if you can guarantee that the staff is not in fact required to care in any way for his supra-pubic catheter, then it would be unusual for them to object and I think were he SELF CARING as this catheter is involved he would be accepted in ALF. The same may be true with colostomies and etc. Any medical personnel care needs that go above the levels of care for any facility (and they dictate what constitutes their levels of care) would preclude a patient from coming into the ALF.
Have you consider Board and Care or other placement. It sounds as though Dad may require other placement. I wish you luck when you go through next steps.
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Bosschick Jan 2023
Thanks. I will be talking with them about their rules for LOC, as well as with our attorney to determine if it is even worth some negotiation/consideration for a waiver of liability for the catheter since we are agreeing to manage all catheter care required.
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You have no recourse at all if the AL won't accept dad for having this catheter in place. They get to make their own rules based on their own criteria and there aren't laws that govern such criteria. When my dad lived in AL and wound up with a catheter, the staff was not allowed to touch it at ALL. Making my life a huge pain bc I had to take him back and forth to the ER for all of the issues, changes, new catheters, UTIs ALL of it. This lasted for 5 months, so it was temporary, thankfully. And the AL wouldn't have accepted him had he gone in there with a catheter...it came after a hospitalization and they couldn't kick him out as a result.

That said, some ALFs have higher care level licensing that permit them to do catheter care. Some ALFs allow for Medicare to send Home Health in to help the resident with catheter care. Some ALFs will accept the catheterized resident with the understanding that he is to do ALL his own catheter care independently. It sounds like dad's place is one that allows for none of the above and has no higher care license either. You may have to look around for an ALF that will accommodate his needs.

I'm sorry you're dealing with such a thing and I hope you find a good resolution.

Best of luck.
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Bosschick Jan 2023
Thank you. Agreed. The fact that they know they won't have to touch anything and they are still pushing back, screams "we don't want the liability."
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I’m guessing this is a CCRC & views itself as somewhat as an especially nice somewhat exclusive place? & I’ll also guess that a couple of the residents have complained about his having a catheter; that this is a community for active healthy seniors not a man with a pee bag type of complaints. If this at all is the case - imo - your dad is toast on staying there.

So if a CCRC your dad did a buy-in & likely a significant amount of $? Only IL, AL, MC, right? No skilled nursing care level of care at all in this large community? Like no sister facility that their community members transitions to for SNF aka NH care & part of the buy-in? If all of these are correct, imo, they / the administration have quietly made a decision that they want him gone. He’s competent and cognitive so he doesn’t meet the criteria for being placed in MC sector, so that’s out as an option for him; and due to his medical needs not able to be in AL so that’s not an option for him either. So LSS so cannot continue to live there at all.

Should he not take the hint and move, please realize They can & will find a legit way to have him exit his IL apt if he does not leave on his own. Please realize this. So imo you need to come up with a new place for dad to live at that can provide his SPC care within his own self directed care plan (as your described in your post).
AND
It’s great you have an attorney as the attorney is going to need to do sternly written letters to get all the $ back and then some. Hopefully this attorney is used to dealing with litigation.

Please realize that if a facility of any type - IL, AL, NH, MC, whatever- want to have a resident gone what they often will do - and it is a totally legit CYA move - is for them to call EMS to say that it appears that a resident seems to have had (“presents” in medical speak) a TIA aka a transient ischemic attack and that they need to be taken to the ER/ ED of a local hospital to be evaluated. And then once they are the hospital and ready to go back, the facility will tell the hospital they (the facility) will not take them back because they cannot provide the level of care needed &/or no longer have a bed available, yada yada. The hospital discharge planner now has to find placement & asap. The elder stays as at the hospital not exactly as a patient but more under observation so may have insurance issues. Planner will first & foremost lean on family to come & get the elder, whether or not it’s feasible for family to care for them. So be aware of this.
Fwiw TIAs are real subjective in how they look, so someone who looks confused or sleepy or slow to do stuff could be TIA signs, so off they go in EMS van to the hospital ER/ED.

what I’d suggest he/you look for is a facility that is an AL that will allow dad to have as outpatient care for his SPC and that has a SNF / NH as a sister facility for him to transition to when he gets to that eventuality. That your dad has the ability to private pay is fortunate as it will make all this way way easier to do. And that attorney needs every penny back and then some for your dad plus all his fees and any costs for your as dad POA to travel in to do anything to deal with this. Good luck and let us know what happens.
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Bosschick Jan 2023
Thank you for your feedback. Unfortunately, this is exactly what I thought might realistically be the case as well. I think they feel he should be NH and this is their polite way of telling me that. I will pursue a discussion with their regional director of nursing but, you are correct, I may have stirred a hornet's nest with this request and need to be very careful. I did not think about a hospital trip and refusal of return at d/c so, thank you for that reminder.
He has had the suprapubic for over a year now so, deciding to kick him out of IL at this point could be a problem for them legally. What I do know is that we can't keep doing what we are doing in IL. They are already aware that he will continue to have his caregiver and access to a supervising D.NP so, the fact that they are saying "no" really should tell me all I need to know. Crud.
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Thanks for sharing this information with everyone! I probably should have done a bit of that in my post :)
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Igloo was great at discribing this. CNAs are not trained in this kind of care. Some RNs either. I worked with an RN who refused to catherize a client. You would have the same problem if Dad had a feeding tube or a trach. ALs are not equipped to do this kind of caring. Not all Nurses can do this kind of caring.
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Bosschick Jan 2023
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My husband has a PEG tube and I was told he could never go to AL or MC (that only provides AL) even though it is only used for medicines now. I use Agency caregivers, but they are not allowed to handle it however I can train any "unskilled" person to take care of it in my home. If we ever have to consider a facility it will have to be skilled nursing care. It is amazing what family caregivers are expected to do then be told it is considered skilled nursing care when family can no longer handle it. Unfortunately, we fall through the cracks of many benefits because while he "requires" skilled nursing care, he doesn't "require" skilled nursing care! You may find yourself in similar situations.
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