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My dad has dementia and a catheter due to advanced prostrate cancer. He is 90. He and my mom, 88, were to move into independent living this week. I came to visit 2 weeks ago to prepare for the move and my dad had to be taken to ER because his catheter was clogged and neither one of them didn’t know he hadn’t passed urine for 24 hours. He had a bad UTI which led to 10 days in hospital. This made his dementia much worse and they had to restrain him, I spent the night, drugs to sedate. Well time to leave and we find out he can’t go to assisted living or memory care in the same facility as my mom because of the catheter. We moved him to self pay skilled nursing at the same facility.


We moved my mom in yesterday and she can go see him very easily. It breaks my heart because she wants to walk him here to stay with her. He is the healthiest person in skilled nursing. He walks around packs his bag to leave, and just doesn’t understand why he is there with all the “old people”. The dementia has progressed quickly but physically he is good. We can’t afford the high rate of daily care there. We are in the state of South Carolina. The urologist said something of an operation that we may elect to remove the catheter and maybe he could move to memory care.


I guess my question is if my sister and I were here, do you think it would be worse to show my dad the apartment and let him visit with my mom and then take him back or does that make it worse. We have a care team meeting in a week so I guess I will let it be until then.


I have loved the caring responses from this group and I am fortunate that my parents planned and knew they were coming here. We only wish they had done it sooner. My sister and family are all on board so I am blessed.

You watch out for any facilities that may ignore the law.
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Update, I have talked with dad’s urologist and on Monday I am taking him in and they are going to removed the catheter for. Few hours to see if he can urinate. If so we will try that and maybe get him in MC. He is leary of surgery because he is 90. I don’t think he is improving with the dementia since the uti is gone. Mom took him his cell phone and he called me 3 times yesterday. Last time he said he was at the library and needed a ride home. I told him I wasn’t in town and he said ok I’ll just walk home! I did call to check he hadn’t escaped and I can take the calls if it makes him calmer.
i love this forum and the joke thread started my day with. Smile.😊
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Although not familiar with catheters, I do know that most AL and AL/MC facilities are not staffed by nurses (yes, there are nurses, but not for each patient, just for overseeing medication and/or medical issues.) This being a regulation in many states, the likelihood of finding one that can accommodate dad is slim. One MC place we looked into had said this would be her "home" to the end, so assumption is they would have been able to take care of issues like this.

His blockage and stay at the hospital has likely contributed to making the dementia worse, at least for a while. Some people return to the level they were at prior to this, but not all. As for the surgical intervention, you also have to consider that ANY surgery can lead to more potential memory losses. Again, sometimes people can recover some of that, but it can take months and sometimes is never recovered. I would most certainly give him some time (may take months) to see if he "recovers" any from that incident and then carefully weigh any information from the surgeon AND how surgery/anesthesia might impact him again. It doesn't sound like having the surgery would remove the catheter completely, so if he would still have to remain in a NH, I would NOT do this, unless it can improve his well-being.

Nursing homes generally have way more skilled nurses, as the residents would be those who required skilled nursing. Although it would be great if mom and dad could reside together, at the least they are in the same facility and mom can visit when she wants.

While it is sad to see dad packing his things and wanting to "go home", this is so common among people with dementia. Mom did that often when she moved in. About the best you can hope for is finding various fibs when mom or you have to leave him behind, such as Oh I have a doctor/dentist/other appointment, I'll be back later to help you move and hopefully he forgets. Mom will need to learn how to "fib" effectively as well (bathroom trips might work.) Hopefully she is still of sound mind and can learn how to redirect and refocus him onto other topics. Moving them both might also be counter-productive (moving can impact dementia patients) and "home" may not be where mom currently lives either! So all this might just require all of you to adjust to the new "norm."
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Mnielsen1357 Apr 11, 2019
We are working on “the art of the little white lie” which my mom finds difficult. I do believe it is what it is and she will continue to visit him. They were scheduled to move into IL apartment the week he got the uti. His dementia was not so bad and they were managing the catheter until then. What a dramatic difference 10 days in the hospital.
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I'm confused as to why the NH, apparently the only legal option for him, is costing out of pocket and so much more than the original AL plan. I understand that mom is in the AL apartment and the cost for 2 in one apartment may be less than the cost of each person in a different quarters but I keep going back to the reason for him being where he is is medical necessity not comfort or even choice. The other issue I'm confused about is if he had a catheter prior to plans being made for the 2 of them to move into the facility mom is now in and they were ok with taking him while selling the place why suddenly is the catheter a legal barrier? I understand that during that process he had issues with the catheter that became big issues needing hospitalization etc but he didn't get a new Foley did he? He had one right along? Wasn't this facility chosen with the idea that if one of them (your dad had dementia & PC to start with) needed MC they could still be in the same facility? How does this place not have an option for other medical needs or at least have made it clear, especially given his medical issues, that if or when the time came that the cancer caused him to need NH level care he would have to go to another facility and they couldn't stay on the same campus? I would be furious with this facility, unless I'm misunderstanding something.

All of that said I know I haven't really offered ideas for actually rectifying the current situation. I don't have an answer and to a large degree it's probably going to take a combo of things but just a few ideas; maybe consult both this and other facilities coordinators, social workers or whoever is in charge of arrangements (just remember they are working for a particular facility) as well as hospital discharge coordinators, doctors involved with either parents care (sometimes those offices have a nurse or someone on staff that coordinates care and knows all about this stuff). Might dad qualify for Hospice that could come in to care for the Foley and other skilled care while in living in the AL with Mom or is his dementia too bad now? If his dementia is the issue do the doctors think the increased issues are a result of the infection and he might still get back to or closer to where he was cognitively prior to the infection, enabling him to at least qualify cognitively for AL? Then of course there is the possibility of another place that might have better options for both Mom and Dad either together or at least on the same campus no matter what the heath issues require. Good luck I really am hoping you will be able to find a situation that allows your mom and dad to stay together, it sounds like that is what will make them both most happy.
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I don't really have an answer but we did have a similar situation. My mom couldn't go from the hospital back to her assisted living because of a catheter - even though they advertised that hospice care could be given there. She ended up going to a hospice facility and kept saying she wanted to go home. She died in the hospice facility.
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Can't a nurse be paid to make regular visits to manage the catheter? That would be a whole lot cheaper than placement in a SNF.
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katiekat2009 Apr 8, 2019
We weren't allowed to do that with our mom even tho we asked.
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I don’t understand the type of catheter. Most that I’m familiar with can be removed in the same way that they can be changed.

Once removed, he could simply wear adult diapers and live with your mom.

That reg against catheters sounds like it was written by a Nursing Home Lobby! How ridiculous to make people spend that much money every month for unnecessary nursing care!
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Mnielsen1357 Apr 9, 2019
He can’t wear the diapers because prostate cancer prevent him from urinating without the catheter. We have thought of that too. Most days he doesn’t even know he has the catheter. The nurses have a chart and empty it or check it every 3 hours. At least they are doing their job.
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Have you looked at other AL facilities with Memory Care? I’m not sure SC laws for ALs, but I know here in OH different communities have different levels of care. Usually an AL/MC can have catheter if their nurses are trained and either they have home health there or have a third party home health care company coming in. You might just check out the other facilities in the area and find a fit where they can both be together! Also in regards to cost for AL/MC facilities - if they have long care term insurance or if either is a veteran you can see about those helping with the costs! Also yes most AL/MC facilities either have their own hospice or work with third party hospice - which can help with level of care also. I think if the Admission person at that facility didn’t try to find the best solution for you or refer you to a place that could accommodate what your parents needed - I would def be looking for another place- even just call them, most are very friendly and will advise you what is best for your parents and help you maximize their funds for longest term possible, if they’re a good facility!!!
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Mnielsen1357 Apr 8, 2019
Thanks for the reply. It is a South Carolina reg. So he will have to be in Skilled health anywhere in the state. Yesterday the church people checked him out for an event at the facility and brought him back and that was fine. I will be back next week and will be able to do that but it is sad to see him pack his bags to leave every day. He just doesn’t understand why he is there or remember the catheter. I feel memory care would be better. We have our meeting on the 17th so I will wait.
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I don’t really have an answer but I am curious to know what kind of an operation you are speaking of to remove a Foley catheter. My mom has had an in dwelling catheter since 2011 that is changed monthly by simply deflating the saline water filled balloon and replacing the catheter. Even with a supera pubic catheter placed in the bladder and not through the urethra it is an easy deflation to remove. I have never heard of an operation to remove a urinary catheter.
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Mnielsen1357 Apr 8, 2019
I am waiting to get a call from urologist to really answer that question. It seems his prostrate is so big and hard that the urine can’t pass and this is kinda like a rotorouter to let the urine pass. I hate to even say that as I am not clear either. He does have prostrate cancer and it has spread to hip and pelvic bones but you wouldn’t know by looking at him. He can walk laps around some of the nurses.
Thanks for your reply
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I would try to locate a place that would take him with the catheter. If not, that might be your state rule. The cost for both of them to be there cost alot. What about hired care givers and family help with rotating shifts. I know you don't want him to have repeated uti's and the catheter prevents that. Letting them know you may move both of them, could change their mind. They usually don't want the lost in revenue. At the care conference they will take all suggestions. Start looking. Having one person at home and the other at a facility is difficult also.
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No. No it would not make him worse. I'd say learn more about what kinds of side effects his surgery might have then take it from there. Good luck!
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RacklaMSW Apr 8, 2019
Surgery is just to remove the catheter!
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I would talk to Medicaid. Dad may never leave the skilled nursing so this will be a big drain on finances that effect Mom. Mom would be considered a Community spouse. Their finances will be looked at and split. With my GFs parents, They had SS and a pension/s. They had 60k in the bank. The 60k was split, 30k ea. Dad was in LTC so his half had to be spent down. Not sure how the SS and pension was split but Mrs. R had her home and car and didn't seem to have problems with money. Still did what she always had.

Maybe a lawyer versed in Medicaid. Medicaid allows for this in the 5 year look back.

Mrs R passed before Mr R. She had never changed her will which read "whats mine is yours" so the 30k she never spent went to Mr Rs care. GF always wondered if her Mom would have been able to change her will leaving the 30k to her children.
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RacklaMSW Apr 8, 2019
True..they can split finances..if that is an issue.
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I'd avoid changing anything. Your father's had a lot to cope with over the last couple of weeks and it really would be best to let him settle down properly.

You can add "for now" to that in your mother's hearing so that she doesn't feel she's being forced to imprison him forever. It's not a lie, and you never know.

What do you all think about the urologist's suggestion? Did s/he go on to explain how your father's continence care might be handled without the catheter, in view of his dementia?

Another advantage of leaving things alone is that it gives your mother a chance to adjust to a new routine where she sees your father every day - all day if she likes - but she also gets properly taken care of herself and doesn't have the stress of being his primary caregiver. Persuade her to give it a while and see, I should.
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When my dad had a urinary catheter last summer - 1st time in his life at almost 90 yrs old, it became infected and he developed MRSA - became severely septic and he then died since infection went to his heart. When he was in the hospital(prior to infection), the dr mentioned the OPERATION....I was excited about it because I didn't want dad to be with a permanent catheter due to infection risk, etc.....can you look into the surgery?
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RacklaMSW Apr 8, 2019
He has a catheter..surgery is for removal..but it is not that extensive
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That darn Foley issue will be a problem in just about every state. It means nursing home due to nursing scope of practice and licensing. The problem is infection control. Unless dad can do self care or someone is with him 24 hours, he might go home.
The elephant in the room is advanced prostate cancer. Yes you can chase this with surgery but problems will return. Have you requested information about hospice? He might qualify for hospice in facility which will releive some financial burdon.If he returns home, he will still need 24 hour care. My brother went home with a Foley but as his cancer progressed, he became resistant to doing self treat, which caused a triple resistant infection and he went downhill within 3 weeks.

His comment about old people is common. My mom is 97 and she still says the same thing since she is in a walker and not a wheelchair.
It is best that your mom visits him and discourage the opposite. His predicament is his own due to the cancer. There is never enough time to give as caregivers. Good luck with the care plan meeting
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Does this facility accept Medicaid? If you can't afford it and the answer is no then you are going to have to look for something else, in the meantime just have your mom visit with him where he is.
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RacklaMSW Apr 8, 2019
She said they are self paying at the snf; therefore it must be private pay and does not accept medicaid, usually.
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I know this is breaking your heart. Maybe look at it this way. You’re on a diet. Someone puts a big, juicy burger with all the fixings in front of you. You reach for it and then they snatch it away. This is pretty much what taking your Dad to the apartment would be like. He won’t understand and it will increase your stress and upset.

Its difficult, but try to keep him where he is. When you have your care meetjng, share your concerns about the catheter then.
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