What to feel?

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I am angry and upset....
Some background... Mom is 94. Even 2 years ago, she was a young 92. She is getting weaker, but she is not bedridden. She has declined over the past 8 months, probably due to small vessel ischemic disease and low blood pressure (that was not treated until 2 months ago when her HCTZ was stopped). So, the damage is done. She is receiving palliative care from an in-home hospice program. (She is not yet on her death bed.) Hospice has her terminal condition as "aphasia". As far as they are concerned, that comes under an umbrella of dementia, Alzheimer's, and other cognitive issues. I am not looking for a cure or treatment, but really wanted a more specific diagnosis. It appears to me that she might have vascular dementia (from the SVD) without major memory issues. That may give us a better picture of what we are dealing with and what we can expect, and if there was a genetic component to consider (i.e., dementia). Hospice coordinates with Mom's GP. So, I called him and explained that I was not looking for a treatment, and wanted to see what stage we were in the disease progression. Basically, what he said was he was a generalist and he could not help with specific diagnoses. He then said that at her age, he would not even treat a UTI. He would just let her go. That was really hard to hear and I am trying to deal with the emotions..

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Surprise, I take Azo OTC for UTIs and it makes urine orange. Interesting!
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Whether or not to treat with antibiotics for a UTI, there's an awesome drug that I've taken that is a contact anesthetic - super great for treating a UTI with the exception it stains the urine red. This is a miracle drug in my book. I don't know its name, and it is not normally prescribed because the red makes people think they are bleeding out.
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jeannegibbs, I think I would be/will be more accepting if Mom was not still walking around, still eating (a lot), still at least trying to communicate, even laughing at times. I hope she doesn't have another UTI, but will have to deal with that when it happens. i know where the doctor stands if he decides to not even order a culture.
countrymouse, thank you. It would be good to find a doctor who will treat a patient for an infection, no matter what the chronological age.
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I give your mother's GP "nul points" for communication. Well - maybe a grudging 1 or 2 out of ten: he was, I assume, trying to send some kind of message of accepting the inevitable.

But the malaise of a u.t.i. is not inevitable. Should your mother develop one, it should be identified and treated with antibiotics. It's not like it's a nice way to go or anything.

What the GP may have had in mind is the much greyer area of low grade grumbling u.t.i.s that are present in huge numbers of very elderly people, especially women. There are many, many learned papers debating which it's worth treating and which it is futile to treat, and the debate has been trundling along undecided for years. There is quite a lot of evidence that most of the antibiotics ladled down women for this purpose were/are a waste of time, money and efficacy.

But you don't care about epidemiology, you care about your mother. And if she is manifestly ill, you insist she is treated: palliative care does not exclude antibiotics for an acute infection. You are entitled to argue.

Meanwhile... Know any friendly geriatricians? Or, come to that, PCPs/GPs with a special interest in older people's health? It's not too late to vote with your feet.
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Many doctors are notoriously bad at dealing with end-of-life situations. It doesn't mean they are incompetent doctors, it means they are bad at dealing with end-of-life situations. Your mother does not have a UTI, right? So this is hypothetical. Cross that bridge if you come to it. It was the doctor's way of telling you how serious he considers her condition. Would I give him gold stars for how he handled that? Nope. That doesn't mean he is wrong and she isn't near the end of her life.

Aphasia is associated with damage to the brain, often from a stroke or blow to the head or a tumor. Perhaps that is why for some purposes it is grouped in with dementia -- they are both about damage to the brain.

It is extremely difficult, sometimes impossible, to accurately diagnose dementia or other brain damage in a living patient. If Mom went through a lot more testing now you'd have a "possible" or "probable" diagnosis. If an autopsy is performed you'd have an exact and accurate diagnosis. The medical professionals think Mom is near the end of her life, and they don't see a benefit to a more exact (but still not accurate) diagnosis. It won't change her treatment. If you want an exact diagnosis for the sake of evaluating health risks to the rest of the family, you can order an autopsy when the time comes.

For a good discussion on the inadequacies of the medical profession in dealing with end of life, read "Being Mortal" by Atul Gawande.

What should you feel? Oh my goodness! There is no "should" here. Anger, outrage, disbelief, and fear would probably be my feelings. And then maybe eventually acceptance. Or maybe not.

I'm so very sorry that you and your sibs are dealing with this now.
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To top it all off... The Maryland Orders for Life-Sustaining Treatment (MOLST) that my siblings and I agreed on for Mom's treatment says that, while we don't want CPR performed, we want antibiotics administered for symptomatic treatment and comfort. The doctor filled out the form based on our wishes and signed it. Now he is going against what we decided as a family, and said we should just let her die.
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Cwillie. Thank you so much for sharing. You know exactly how I feel.
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BarbBrooklyn, I am upset because of what the doctor said about not treating a UTI (if she had one), and just to let her go -- just because she is chronologically 94. A UTI that leads to a kidney infection can be very painful, but it is something that can be treated. Isn't that part of keeping her comfortable?? She has not been diagnosed with anything but aphasia.
Joann29, if a family member has dementia, others in the family are at risk. I just read two very good books on the subject. I don't like diagnoses that make no logical sense (ie., aphasia from a "possible" stroke). But, that is what it is, and there is nothing I can do about it. I can't take Mom to a neurologist because they would require an MRI, which they would not order. That would come from the GP. I am not sure Mom would go for that anyway. But, I can live with that. It was the part about not treating something that is treatable just because of her age.
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I don't have anything constructive or comforting to add to the discussion but I find I keep coming back to this thread because the questions your post brings up infuriates me. My mom was a lot like yours, she also declined suddenly in her early 90's and the only diagnosis I've got is what I've come up with myself by reading online, I'm pretty certain that the combination of TIAs, decades of heart problems and finally months of frighteningly low blood pressure due to incompetent health care providers failing to adjust her medication all point to Vascular Dementia. When the professionals who hold your mother's life in their hands show ignorance by listing aphasia as a terminal condition, and her doctor shows a lack of compassion for both you and her by making that ridiculous statement implying she is too old and worn out to even consider treating a simple UTI it just makes my blood boil. In my opinion you have every reason to feel as you do, the ones you are looking to for compassionate guidance have betrayed you by treating you like a statistic instead of a person.
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What to feel?
Feel as you do, angry and upset. Use that anger to find out the best treatment for your Mom. You do not have to accept this doctor's take on it.  She is not bedridden.  She is not on her deathbed.
Try a urinary tract specialist.  Urologist.
Maybe then, you will feel reassured overall, that you did the best you could for your Mom.
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