Follow
Share

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..

This question has been closed for answers. Ask a New Question.
Surprise, I take Azo OTC for UTIs and it makes urine orange. Interesting!
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (1)
Report

Cwillie. Thank you so much for sharing. You know exactly how I feel.
Helpful Answer (1)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (4)
Report

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.
Helpful Answer (1)
Report

My mom had some kind of dementia that I never got formally diagnosed. There was nothing to do with her as far as treatment goes, she was always pleasant and had mainly memory issues and general cognitive decline. So I don't know that getting a diagnosis will give you the information you want. It sounds like you want to know how long your mom has. No one can tell you that, even with a specific diagnosis.

Even in the last week of my mom's life, she was up and down. One day she seemed fine and the next day she'd be semi-comatose. It was crazymaking for me, trying to figure out where she was in her progression. I brought in hospice when she seemed to be really failing. I also stopped her meds. The hospice people couldn't tell me where she was in her progression to passing until her last day, when the nurse predicted she'd pass. She passed on the day the nurse predicted. I would only have treated her for comfort care, nothing that would have prolonged her life since she was ready to go and her quality of life was pretty much gone. My cousin, who is a nurse, has long said that pneumonia is the friend of the elderly, as that will often hasten their demise if left untreated. It may seem harsh, but as long as your mom is kept comfortable, I think it's the kinder way to deal with a failing body.

It feels so difficult to be a bystander watching your loved one fail bit by bit. But we don't really have any choice and we can't predict how long it will take. {{{Hugs}}}
Helpful Answer (6)
Report

I agree with the other responses you received. I think at a certain age, the body just starts to decline and treating certain things would probably do more harm than good. So many treatments and medications have their own side effects etc. and a body that is old and probably shutting down can't metabolize medicine like it once could.

As far as not treating a U T I, I don't really get that. My Mom had continuous U T I's as she got older. Penicillin does take away the bodies good bacteria and so perhaps that is why they don't want to prescribe it. I hate it when Doctors don't explain their diagnoses etc.. I know it's frustrating. Hang in there.
Helpful Answer (4)
Report

Oh, I thought of something else you might check out. It reminds me of what the doctor said about not treating a UTI. I've read multiple articles on how professionals (including doctors) discuss how with a person who is in late stage dementia and at a certain level of progression that that the body cannot recover. And that even if you treat infections with antibiotics, the infection will return. And, there are studies that show that treating with antibiotics does not prolong life. I'll see if I can find some links. If so, I'll PM them to you. I know it sounds harsh, but, what I learned is that after a certain point, treating infections may not be in the patients best interest. Of course, I'd honor any medical directive they have ordered, if any are in place.
Helpful Answer (2)
Report

I am surprised that the medical professionals would group aphasia in with dementia. My husband has aphasia and his mind is sharper than mine 90% of the time. He has hearing loss that causes him not to understand what I say to him, but once he hears me, he almost always comprehends what I’m telling him.

As for not treating a UTI, that’s incomprehensible to me. Even if someone is approaching death, they shouldn’t have to pass away with discomfort like that.

If Mom has not seen a neurologist, she needs to, even if only to set your mind at ease. If she’s seen one and you are not satisfied with the answers you got, find another. You owe it to yourself to be content with her diagnoses and prognosis so you can put these issues aside and devote time to your mom.
Helpful Answer (1)
Report

Does it really matter what kind of Dementia she has. I don't think it is genetic because there are so many factors cause it. Smoking, brain damage, some medications, heart desease. Alzheimer's is different. That is genetic. At this point, there is no cure for either. As my daughter, RN, says the body gets old so does the brain. Grandma is 94. She has lived a long time, longer than most. She maybe just declining. I would have been upset by what the doctor said. It was cold. Just be there for her. Hospice will keep her comfortable.
Helpful Answer (5)
Report

Ma; my mom was diagnosed with Vascular Dementia; some of her doctors thought that she might have Alzheimers as well, but no way to tell until after death, and getting an autopsy.

I don't think there are any accurate timelines out there; I used to look, somewhat crazed. How long can this go on? I wasn't caring for mom at home, just visiting her at her NH almost 2 hours away and dealing with medical stuff on the phone. It was slow torture watching my mom decline.

After a pretty disastrous hospital stay, we moved to "palliative care"; to us, that meant "treat what you can here in theNH and don't send her to the ER unless we give permission. They treated at least one round of pneumonia and at least 2 UTI's "in house".

Finally, she fell, broke her wrist and ended up needing to be transported to the ER; that did her in, I think. She returned to the NH in pain, bedbound and unwilling to get out of bed. We called in hospice and she went out peacefully about a week after the fall.

We are with you on this journey.
Helpful Answer (7)
Report

It's sad to lose a loved one, regardless of their age. I'm sorry about your mother. I know that it's taken me years to really digest how my LO, who now has severe, last stage dementia. But, she's only 65.

You can read about stages, but, if it's Vascular dementia, it might not fit into the symptoms that are described for Alzheimers. Although, to me, they do seem to go pretty close to each other. I suspect that my LO has mixed, or Vascular and AD.
Helpful Answer (1)
Report

Ma, I wrote a long post and then lost it. Are you more upset about lack of a better diagnosis or her gp saying he wouldn't treat a UTI?
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.