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.
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.
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.
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.
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/
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.
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.
See All Answers