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LO is almost 82. Vascular dementia (big stroke damage 6-7 years ago) with Alzheimer's. He managed to live alone for some time, albeit not the safest way he could have as he really can't recognize he has any changes. He is now in memory care, required. We specifically went over his medical wishes as soon as early dementia was suspect, at the social workers prompting. What he wanted was very different than what we would do for ourselves, but he wanted pretty aggressive medical care and interventions etc. It was consistent for him, as before he had any symptoms of dementia he had prostate cancer and he very much took his Dr. recommendations to heart. He had been a very heavy drinker and stopped that, he also improved his diet. His take was the Dr. said he had to do this to live a long life. Once his symptoms were obvious and he was diagnosed he reverted to little or no food self-control and that led to SOOO many hospital stays as the bad food triggers infections, we know this for sure by the pattern. This was not what he wanted when previously at all, I personally have my directions let me live my way and low medical intervention so at times we feel like "it's his life, let him." But then we also promised to follow HIS wishes to keep him safe and healthy/live long etc. I know I want my wishes followed. Now he has frequent UTI's/lymphedema/vein issues and really only wants to drink coffee or sugary drinks, no water. He admits he pours his water down his drain when they bring it. The only time he will drink it is if they require it before his coffee. His MC says they cannot limit his decaf and he is going out with his brother to a cafe weekly and it may be exasperating it, brother has in the past encouraged poor diet as food brings joy. I'm very conflicted because this is his favorite activity to look forward to each week, but it was not medically advised as in his best interests to stay healthy to be making poor dietary choices. Does anyone have experience with decaff coffee and UTI's? Is this safe to make that his primary drink, or should it be limited? Can the MC override his PCP? Or should we just leave it and let him have it, as it makes him short term happy, even if it sends him back to the hospital again? HE HATES the hospital. It always means big setbacks in his cognition; he usually ends up on video and with his arm loosely tied to avoid ripping out the IV on the other side. It's very sad we feel like we are dammed if do and dammed if we don't because people in the MC (as well as family that are not the medical proxy) are not listening at this point to his directive intent. This may just be a vent, but we don't know what to do any kind suggestions or input would be appreciated. Should we ignore his Proxy and just leave MC to allow it? The upside there is it makes him happy, even if it is not good. We just feel guilty either way, it's exhausting trying to do the right thing.

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He always did what he wanted.
You always ALLOWED him to do what he wanted.
I suggest he should be able to do as he wants now as well.
I am 81. I am darned well going to have coffee if I want it. Is it an irritant to my aging bladder? Of course it is. But I will decide daily for myself what coffee and how much I will drink.
Goes for the apple juice full of sugar as well.
And if I wanted a coke or a vodka (which I don't want) I would have that as well.

Micromanaging an elder at the END OF LIFE is not really very productive. I would ask you to give this up and get more on with your own lives and choices.
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cwillie Mar 16, 2024
Lots of fluids in BEER too!
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I don't think the coffee is causing UTI's.

Most likely, being partially dehydrated all the time is a more likely culprit.

I don't think taking away a drink he will drink is acting in his best interest, especially since he is having recurring UTIs most likely from dehydration.

Decaffeinated coffee is not dangerous and actually has some health benefits, as does regular coffee, without the side effects that caffeine can cause.

Why are you so worried about the coffee if he hasn't seen a urologist?

Here's my take on letting him do whatever he wants now as opposed to what he wanted before he was out of his mind. He could not have foreseen that he would not be able to choose what he wants to drink because of his unreasonable request. I, also, doubt that he could imagine what being in the throes of dementia would be like.

Knowing that he wanted full code when he knew what was what is not the same as making these types of choices for him at this point of his life. If you try to keep him alive indefinitely what quality of life would he truly have? Would you feel better because you denied him something that gives him some comfort now but taking it away makes his quality of life nil?

I recommend not being tedious about what was vs what is.

Let him have whatever gives him something beneficial now because he is dying and there is not out for that fact.

Just my opinion.

Edit: deciding to utilize every medical intervention possible after a lifetime of bad choices doesn't negate the effects of those choices. I would not forget the effects of heavy drinking and poor food that have caught up to him now. You are honoring his wishes to the best of your ability. You have NO control over how long his life will be, coffee or not.
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MickiLyn Mar 18, 2024
He's actually in quite good in general, dietary issues like his legs and diabetes, sundowning, and wax in his ears that needs regularly removed aside, and no one has ever suggested to us he is end of life. If we thought he was he'd be all for have at it! I'm sure we will end up there, just not there yet. He has a great activity director and his primary care person and him have gotten very close. We already overrode CPR because it would break his ribs and we don't think he would heal. Living with UTI or swollen legs can't be a good quality of life either. I'm not sure there is a perfect solution I am just looking for ideas and how to make is as happy as we can without the misery of painful UTI's or the hospital/rehab cycle.
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This may be part of his problem, voiding his bladder completely. He needs to drink water to keep him flushed out. My Mom was on cranberry tablets and a probiotic and had no UTIs the last year she lived. D-Mannose has been recommended by a member who has taken it for years. No sugary juices, even cranberry. The tend to feed infections like yeast.

Once UTIs are a regular thing, they are hard to get rid of. Once one is detected a culture should be done to see what type of bacteria is present so the correct antibiotic isvused.
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MickiLyn Mar 18, 2024
He might not void all the way and the UTI's are very frequent. We just hope to find solutions that can both make hi happy and also avoid the hospital which is just awful for him.
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TLDR/ does decaf contribute to UTIs?

I found this "There is little to no evidence to suggest that decaffeinated coffee causes increased urination or that it has any impact on urological function"

https://saiu.ca/coffee-and-your-bladder/
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Once he is clear of a UTI infection start him on the supplement d-mannose. Unless he is diabetic, there is no downside to taking this as it is a simple sugar but definitely cuts down on the number of UTIs (it did for my MIL and I don't really have faith in supplements).

Or you can ask his urologist about Flomax, a common prescription med that does the same (it "relaxes" the bladder). If he had prostate cancer in the past, is it possible it may have returned and this is what's causing his problems, not food? This seems more likely.

Tell the staff to dilute his decaf coffee so that more of it is actual water. If he likes sugary stuff have them give him diluted cranberry juice cocktail. Family can bring him watermelon, grapes, cucumbers, jello, etc. -- foods with higher water content.

Are his medical wishes written down in a legalized document? If not... then you aren't legally bound to follow it. He could never have imagined how following his "good health care" wishes would actually play out. As he progresses in his ALZ, he may not cooperate with anything. At this point you're off the hook even if there is a written healthcare directive. One can only do so much.
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MickiLyn Mar 18, 2024
He is unfortunately diabetic. I have not heard of that med but if it's not good for diabetics that may be why. I think diluting might be a help, and that seems like a good idea we had not thought of. The problem is he waits until no one is looking and dumps his water, and he has admitted as much. We do bring watermelon and he loves it for sure, but we don't see him as often as we like because his choice was to stay in his hometown 4 hours away. I think I will try to find ways to get him that more often though. Ultimately, because there was conflicting advice and opinion here, we consulted a Urologist. The takeaway is decaf is not ideal but ok in moderation and along with water. The getting him to drink water is going to be the problem, and doing what we can to not further exasperate his bladder and track system.
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I was told the trick was to make the urine more acidic.

So, I gave my Mom a Vitamin C pill a day and it seemed to keep the UTIs away. This was in addition to all the fruits that I could give her. She refused cranberry juice. She liked only certain orange juices and detested grapefruit juice. I didn't try mango juice.

The only issue was that if I accidentally forgot more than 2 days in a row, the UTI was back.

Talk to the nurses and see what they suggest to do to get off the cycle of UTIs.

Every time my Mom got a UTI, I could tell as her dementia was worse than "normal".

...and at least at my Mom's MC, they wouldn't give even a vitamin without prior doctor's consent....so that is why I gave it to her when I visited. Eventually, the pill was too large for her to swallow.
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It has been explained to me that the elderly have skin that is so thin and compromised that it is quite easy for infections to set in, no matter how hard we try to fend them off. Also, keeping one's self clean on a daily basis, loss of bladder control, and lack of any physical pain (younger people will feel burning, itching, etc.) or discomfort with a UTI can also make a UTI dangerous. In fact, the only symptom of a UTI my 95-year-old mother has is mental confusion, which can lead to falls, inappropriate behavior, etc. She is now on a regular testing regimen at the AL, which has caught these infections before they manifested in a mental way. She, too, hates to drink water or really anything, but she will drink tea. She used to drink coffee, but one of the aides (in all her wisdom and expertise) told her that coffee was bad for UTIs, but the doctor says, that coffee is okay in moderation (my mother does everything in moderation all of her life), but my mother would rather listen to the aide than the doctor. We, the loving family, can only manage so much. Sometimes, we just have to say to ourselves, "We have done all we can. We can only do so much to make them comfortable, safe, and happy to a certain extent. The rest is up to our parents." They are who they are now, and the remaining time they have on earth is not up to us, no matter how hard we try to extend it. If what makes them happy may (MAY!) take a few days off of that, should we try to intervene? We keep those days that they are happy and healthy in our hearts, and know we are doing the best we can for ourselves and for them, and just enjoy the times we have left.
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Check his alzheimers meds. C Memantine is linked to bladder disfunction and can promote chronic UTIs as a side effect.
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asfastas1can Mar 21, 2024
Thank you for the info on Memantine. My mom has been on that for two years, and has a history of UTI's. She has already had three this year (one a month). I know her family doctor and her neurologist are aware of her multiple UTIs before she went on the medication, but I was not aware this drug could exacerbate the problem. I do not know if the drug even helps her, so now I am going to discuss this with her doctors to see if she should continue taking it. We really have to be experts in everything anymore, right?
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We had a woman where I worked w/ chronic UTI's and she took the AZO cranberry supplements which helped her. Not sure they would help everyone, but it might be worth a try.
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They cranberry tablets
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