I am his medical and durable POA. He is retaining 1500cc of urine in his bladder after voiding, and it will soon cause kidney damage. He is "with it" enough to understand this but he finds the indweling catheter intolerable and threatened to pull it out when he had one placed, and stated "it is better just to die than wear this".
So I went back to the hospital and had the nurse deflate the balloon and remove it properly, and she told me to get medical POA (which I already have). I am wondering about this nurse's comment: even though I can legally enforce that he wear a catheter, he may do some serious physical damage pulling it back out again if he doesn't want to wear it. And guardianship is obviously not an option because he is competent although moderately demented. He is living in a locked memory care unit with a 24/7 charge nurse so catheter maintenance is not at issue here.
More details: This catheter is meant to be worn only one month while the urologist assesses if he is a candidate for surgery (cystometrogram, cystoscopy, kidney imaging) and to prevent kidney damage.
This blockage is caused by prostate enlargement (BPH) which has been medically treated with 5mg finasteride and 2 flomax for 3 months to no avail. He was diagnosed with BPH years ago and was taking 1 flomax daily the whole time. This is probably more detail than anyone wants to read but just in case anyone is thinking there it can be medically treated.
So the family doctor was following the BPH for years. My Dad finally complained of bedwetting (really out of character for him because he is embarrassed by it) so I immediately took him in for a workup and he got referred out to a urologist.
My Dad seemed fine with the suprapubic but was kind of deferring to me. I said with a lower risk of infection and better comfort it seemed like a good choice and my Dad agreed and the surgeon agreed. The surgeon still didn't seem enthusiastic about this choice though, surprisingly. What's bugging me is I'm wondering why. It seemed like the best choice.
Then when I went back to my Dad's assisted living to debrief the charge nurse, the nurse was incredulous and right in front of my Dad said, "Did he agree to that?" I said yes, why not, it has lower risk of infection and is more comfortable. Then the nurse then informed me that my Dad would probably have to move out, because they couldn't handle the care for a suprapubic catheter, only Foleys.
I was so upset. I later got a call from the director of nursing at the ALF and he said he wasn't sure they could handle suprapubic catheters, but that they'd look into it. Later he called again and said that my Dad wouldn't have to move, that they could handle suprapubic fine.
It's like, what is the deal with this suprapubic catheter if there's LESS chance of infection and it's more comfortable? I mean, the TURP didn't work so the only other options seem like self-catheterization 3-4x/day (r/o because of dementia) or possibly permanent kidney damage.
I am thinking now...I should get another opinion. These doctors and nurses are worrying me about something that I thought was a good option.
I think the patient picking up on anxiety is a big factor with catheter care especially. Fortunately I do not have to play this role but my Dad listens to me (for now) anyway, which is huge.
What I try to do is listen to him and make things as easy as possible for him. In this case it was scheduling the surgery as soon as possible, explaining to him whatever needed explaining (over and over), and honoring my Dad's request for male nurses (to the extent that this was feasible).
However, the TURP procedure did not stop the urinary retention because his bladder muscles are too far gone. He's still wearing the Foley catheter, changes to a "night bag" himself at night (with prompting) and a "day bag" every morning (with prompting), and I take him to the doctor to have the whole catheter changed monthly. It's miraculous considering he was refusing the catheter early on.
I think he's going to need the suprapubic catheter eventually, because the Foley is very uncomfortable, and the urologist feels that self catheterization is not an option because of the dementia (I agree).
So that's where we're at. I'm interested if anyone knows of any options we haven't considered. But, I am thankful that his kidney function was spared any further damage. His lab values for BUN, creatinine, and therefore GFR are much better than prior to catheterization.
I also have to make a plug for Kaiser Permanente Southern CA. The whole experience was really good despite the disappointing outcome. I really feel like they did their best by my Dad. Very thorough and professional urology team that saw my Dad through a myriad of appointments and an overnight hospital stay, personable surgeon that got his MD at Columbia University, you really couldn't ask for better.
It was known from the cystometrogram results that my Dad's bladder function was not great prior to surgery but the procedure is minor enough that the surgeon thought it was a good risk to try just so my Dad might have the best quality of life. Not every doctor feels that way when the patient is 85 yo so I'm thankful.
With my Dad, of course since he is so adamantly against the catheter I feel it's not an option right now. But I am going to start discussing some unplreasant things with him like dialysis, funeral arrangments and we will get a will executed and signed. These are necessary conversations anyway but I will tie them into his decision so that he's aware that what he's doing has serious consequences. It's hard for him to get worried about kidney damage since he can't feel it happening until its too late. You can explain that to him but I think the dementia lessens the impact of consequences somehow.
My Dad like I said does have memory problems BUT he is extremely intelligent. He knows more than average. He will remove the bag, cut the catheter, yank on the thing, and complain loudly to the point that he will get transferred to a SFN, even if he can't pull it out.
Just out of curiosity I read up on Guardianship in California and even for a temporary emergency order you have to file a full petition for "Conservatorship of the Person" (aka guardianship in other states) and the conservatee has to attend the court proceedings. Only lasts 30 days with no extension. Yeah, probably not going to be the most expeditious way to get things done.
he definitely would be able to pull out a foley if he puts his mind to it. It might hurt but it still can be done with a good tug. he may even figure out that if he cuts the end off the little side tube he can drain the water out of the balloon then it's easy to get out. Would Dad accept a supra pubic catheter.. A small incision is made just above the pubic bone and a catheter inserted into the bladder where it remains permanently. A supra pubic catheter could be put in without anything else being done. I would not try to enforce any treatment against Dad's will. it really isn't worth it. hope all this works out for you and Dad. Let us know what happens.
Reminders are not an issue as he is in a locked memory care facility with 24/7 nursing staff; the issue is that he absolutely refuses the catheter.
Basically, I am worried because apparently without it the surgeon will not be able to even assess his bladder function and his candidacy for TURP. The surgeon is not going to perform a TURP if his bladder is not functioning well enough on its own. So I am thinking, the surgeon is not going to perform a TURP if my Dad absolutely refuses any catheterization with retention this pronounced.
Clearly, any procedure is risky in a 84-yr old even with local anesthesia, so add to that noncompliance and no assessment of bladder function. I don't think TURP is going to happen.
Nobody wants to wear a catheter all the time, but would he be willing to have one inserted and removed every 6 hours? Could he do this himself with a reminder from the nurse? For example: 6am, noon, 6pm and midnight?