Mom in late stages of dementia seems to be getting UTIs constantly. Should we continue treating with antibiotics?

Dear stillsaneinSD,

Sorry to hear of your Mother's suffering, and for your emotional anguish dealing with her illness. My husband's 93 year old Mother with dementia lived with us and passed away in 2015.

She had an increase of UTI's during her last year of life, and she was put on antibiotics each time. Her dementia was severe, but when she had a UTI it increased her confusion significantly, so we felt we didn't really have any other choice. The increase of confusion made her more miserable, and us.

As it was, my mother-in-law passed from an abdominal tumor, which also caused sepsis. Dementia was her secondary cause of death.

You'll know what the right choice should be. It is heartwrenching. If I were in your shoes, I would ask her physician to be the one to make the decision. Either way in that she is under hospice care, you already have provided the best care you could have for your Mom.

FYI - my Mother-in-law became quite lucid her last few days of life. That was a wonderful blessing for us. Perhaps if you decide to use the anti-biotics, and if that results in less confusion, she may have an opportunity to have greater lucidity prior to her passing. But again, if you ask her physician to make the decision, it won't be on your shoulders. That may help you during the grieving process. Guilt is always a normal part of grieving, so your Mom's doctor could help relieve some of that for you.

God bless you! Days will become brighter again!

HI still sane

My mom is battling them too with the most recent one landing her in the hospital and now pretty much in bed

I can't imagine having to make a decision to not give her antibiotics unless it would require a permanent move to a nursing home

Within the recent past someone did post a similar question about not treating UTIs - try a word search for treat UTI 
Pamz17 posted about a month ago with many replies 

There was a discussion about the treatment of uti's in very elderly patients in the BMJ a while back; and the salient topic of the debate was not whether it's worth doing because these patients are nearing the end of life anyway, but whether current treatment is effective in treating the uti - and the conclusion was that too often it's completely useless and therefore pointless, merely contributing to antibiotic resistance in bacterial populations without doing anything to improve patients' longevity or quality of life.

So if you start from thinking "if a thing's worth doing, it's worth doing properly" perhaps it might be worth assessing the approach being used here. Her medical team needs to:

identify the pathogen(s)
prescribe a course that will kill it/them properly
and ensure that the remedy will not kill your mother;

and meanwhile her care team needs to:

ensure hydration
observe strict hygiene and infection control both immediately and ongoing.
You could add cranberry juice if she'll drink it or cranberry extract capsules if she can swallow them. Dietitians would probably also recommend pre and/or probiotics to try to salvage healthy gut flora. These ideas won't cure anything but they can't hurt and they might help.

Which is going to be a heck of a game. You must by now be familiar with the heart-sink situation that the antibiotics tend to cause diarrhoea, and in incontinent people that means they're sitting in a diaper chock-full of liquid waste fermenting in a lovely warm moist environment right up against the urethral opening, and guess what happens, and round and round we go. Dealing with this part of the problem means a boot-camp regime of frequent toileting, pad changes and ruthless disinfection. It can be done, but you'll spend a lot of time feeling cruel-to-be-kind.

This rather doom-laden prediction you've been given that she will certainly die from sepsis if the uti remains untreated... many if not most very elderly patients have some level of urinary tract colonisation, and naturally it often goes untreated, and the patient generally dies with it rather than of it. How rampant is your mother's infection?

I feel for you. Rough decision but after two years of h*ll she may want to go "home" too.
Discuss this thoroughly with her health care team but look at her quality of life. Will it in any way be enriched?

If she can't demonstrate any signs of improvement after, say, 48 hours, then maybe hospice.

Such a difficult time. What would your mother want? A good quality of life I am sure. Hospice will make this journey easier.

So sorry for you, God Bless...

I"ve just had mthr graduate from hospice because she seems cured of her cancer. If you have a hospice nurse attending mom, you know she's not expected to recover. The nurse would not have brought it up if she were not in some form suggesting it. (Doctors won't make the choice for you as their oath is to save lives and they would be dropped from their insurance.) I would take the nurse up on non-treatment with antibiotics. She can have tylenol for pain and fever, and morphine for severe pain, and ativan for any anxiety and fear she may face. I have made this choice for mthr regarding pneumonia but have not had to go through it yet. It sounds like your mom is completely ready to go home. I would let her go.

Im going through this right now, thats why Im searching the forum for answers. 93 year old mother has been having reaccuring UTIs for many years but more so since her dementia has progressed to late stages. I talked to her Dr and hospice nurses after the last one a few weeks ago, that took 2 rounds of antibiotics to treat. Do we keep treating or not? Is it a terrible way to go? They all agreed its not horrible and less is more due to her quality of life, and if she gets another one we shouldnt treat. I think she has another one now and I have to make that decision. Im heart sick, but if it were me, I wouldnt want to prolong this.

It doesn't matter the age of the patient - ALWAYS - consider the quality of life for the patient - first - when making health care decision. With dementia - it's only going to get worse as all us know - and this doesn't include all the other health issues that can surface: cancer, heart attack (but doesn't die or there is no DNR in place), pneumonia, etc.

My mother has vascular dementia and is housebound permanently due its complications. Frankly - I'm waiting for something - like a UTI - to afflict her so I can put her on Hospice - load her up on the drugs to keep her comfortable - and let the infection takes its course - eventually ending her miserable life. Death With Dignity is not available in our State, right now. My mother's doctor said sepsis from a UTI is the least painful way to go because the infection does eventually hit the kidneys, so the toxins, the bacteria from the infection, are not being filtered out and building up in the bloodstream which causes the patient to fall asleep and then die. The patient will still experience discomfort during this process - but it's manageable with pain relief.

It's a very, very hard decision to make...do I treat or not treat? Experience your own heart-to-heart and honest talk and ask yourself: Would your loved one want to be in the condition he/she is in?

I firmly believe dementia patients are fully aware of what's going on but they're trapped in their minds and can't communicate clearly with us. About every six months, I observe a slight neurological and behavioral change in my mother. For the last few months, she's been saying - and this a first - she wants to go home and her husband (my father, who is deceased) is coming to pick her up. And a few minutes later, she yells "Not today! He's late...Again!!" I go in the other room and cry a little bit myself because I know she's saying this because this is her way of saying she wants to die and be with my father. Of course I'll miss her. But it's not fair to her to treat whatever health condition may be on the horizon. She has no quality of life.

The crime in America's healthcare system is that Death With Dignity should be available nationwide in consult with patient's family and his/her physicians. When dementia complications progress to the point that the family has no choice but to put their loved in a nursing home, the healthcare industry, particularly the pharmaceutical industry, is the one who is profiting from the suffering of these poor patients. The pharma industry is making bank on all the drugs required to keep the patient stable.

My mother is not yet in the late stages of dementia -- she was very ill for 1-1/2 years but her physical condition is stabilized. She was getting constant UTI's and saw an infectious disease doctor, at one point, while hospitalized. The doctor prescribed an unusual solution, and, while it may not be the best answer for your mother's condition, I am going to mention it. My mom has a standing, weekly, app't with a home-health care nurse who irrigates her bladder. My mother is living in a supportive/assistive living facility, I pick up the solution, and the nurse administers it every week. I realize you are facing a difficult decision, as, whatever you do, at this stage of her life, prolonging it, possibly, not in her best interest, is painful. This is an unusual option, and, while I know, for my own mother, another fall, another attack of sepsis from gall bladder, or, who knows what else, will occur, this is one thing that I don't need to worry about, causing her to go downhill even more quickly. I haven't been faced with this decision yet but if our parents live long enough, and, suffer, long enough, we will all have to face these painful decisions. I am sorry...