Getting mom off steroids in hospital, and setting limit on antibiotics. Anyone else have success with reducing excessive drug treatments?

One more thought to share -- and it is in the spirit of sharing, not to convince you of anything. Aspirating is common in several kinds of dementia, and my husband's doctor wanted to stay on top of that. At one point she said to me, "I'm going to give him something stronger. I'm not satisfied how the last drug worked for him." The pharmacist came to the window to "counsel" me and told me this new prescription was not compatible with something hubby was already taking. I thanked him and called the clinic when I got home. Several months later we went through the same scenario. This time I said, "Yes. Thanks for doing your job. I've discussed it with the doctor. You know that my husband has a terminal condition and the doctor feels the small risks of this interaction is outweighed by the need to keep him comfortable at this time."

The fact is, there are only 5 drugs approved by the FDA for treating dementia and none is particularly effective. Meanwhile, damage in the brain does impact how other drugs work. Many drugs are prescribed "off label" or against general warnings, in an attempt to preserve some quality of life. Having so many old-old people (late 80s, 90s) with chronic conditions is relatively new for the medical profession, and the large number of dementia cases they must treat with not a whole lot to go on makes getting the right meds in the right amounts a hugely challenging undertaking.

Maybe the doctors are drugs-addicted, and maybe they are results-addicted and the inability to "cure" someone of old age and/or dementia is very frustrating for them.

I hope that your mom's PCP is a geriatrician. They seem more temperamentally prepared to undertreat than to overtreat, and they tend to be more realistic about outcomes.

As you say, hating the doctors is not constructive. I do understand your anger. You just go ahead and make the best decisions you can on your mother's behalf.

Fluid IN her lungs or AROUND her lungs is a distinction you want to make.

My husband was hospitalized three times while he had dementia. When he got home each time I figured it took another week to fully recover from whatever sent him there, and another 5 to 6 weeks to recover from the hospital stay. Being in a hospital is very hard on someone with dementia. His geriatrician agreed with that and only took that course of action after weighing risks and benefits.

When someone is old, has dementia, and is in pain, their behavior is not likely to be normal in a hospital setting. But sometimes (as with the drugs) hospitalization is still the best alternative.

When Mom broke her hip at age 94 she went on hospice. No medications except for pain. After a few months they discharged her from that program. She gained weight. Her overall health improved. She will never be able to bear weight on the legs but the pain was managed. That was a year ago. Her dementia is getting worse.

Sometimes these things are out of our hands. We want to advocate and fight for our loved ones, but it is also good to recognize that we are not in control. And neither are the doctors. There are other forces at work here.

Thank you all for your comments. It is very good to hear different opinions from people with experience.

I decided to stop the steroids tonite. She has only had hallucinations in the hospital when she was on IV pain med Dilaudid (sp?). When she got off that, it stopped and she was as lucid as usual. I also put up a huge sign in her room reminding her that she broke her hip, had an operation and was in the hospital because she kept asking. We also use signs a lot at home to help with memory; this did seem to help. Then she started hallucinating again when the steroids were started. My research turned up that this is a negative side effect of steroids, and could indicate an allergy, especially if the patient is up all night talking to themselves as she was.

I don't have any healthcare training, but I was a journalist for several decades and I have a special interest in health care, especially the reduction of excessive drug use. Interestingly enough, it was my mom who started me on that journey. It was she who wouldn't let them take out my tonsils when every other kid in America was having theirs removed "because they were useless and caused sore throats," as the docs said then. It was she who wouldn't let them give me (or her) antibiotics unless there was a test showing a bacterial infection.

That is the case with her now. They did a blood culture, and it did not show bacterial infection. She has been on two powerful antibiotics IV for 5 days and it has had no effect on her lung congestion at all. Antibiotics weaken the natural immune system, and are associated with repeats of the same sickness. I would rather see her body fight viral pneumonia on its own without being weakened by all these drugs -- if it were getting worse, of course, that might be different. But the pneumonia has been constant not worse, partly because they have only been able to stabilize her heart rate for 48 hours. They expect that that will now help clear up the fluid in lungs, and therefore pneumonia.

My mother is in very good health for her age. She was still riding her bike to the grocery store in her 80s. She has requested a DNR, and does not want to be on excessive drugs. I do have a health care proxy. I know it's not really sane, but I've resisted doing an Advanced Directive with her because she always seems so death oriented! I've been working lately on accepting more of her wishes and accepting that she's very old and will die at some point. It has taken me a while because she has always been so healthy -- she is 94 and this was her first-ever operation!

She was only hospitalized once before -- when 45 years ago she had sciatica and refused back surgery, but went to a University hospital to get an alternative treatment of bedrest with a machine that slightly stretched her back. The sciatica went away and never came back.

Tomorrow, I'm going to ask for a print out of all the medications that she's on and run them through a drug interaction web site. She's on so many things with so many doctors it seems quite lilkely there are some negative interactions.

I will speak to the doctor about drawing off fluid or other methods for dealing with that. And I will print out the advanced directive form so I can have it ready to fill in at some point soon! Thanks again for all your feedback.

"at about this time last year". Have they considered tapping her chest to draw off fluid? They did this in the hospital last year.

I agree with Glad that it's most like the dementia that is causing the hallucinations; I try at all costs to keep my mom out of the hospital because her dementia always worsens there, just because it's unfamiliar and anxiety provoking.

My mom has had pneumonia 3 times this summer, in her NH. The fist antibiotic did not work and was discontinued after two days. Then they used Levaquin, which they weren't happy about because it can cause kidney damage, but they put her on a saline IV to keep her hydrated and she pulled through. When the pneumonia returned a few weeks later, they used two antibiotics in combo, and again, that worked. Along with the steroid breathing treatments.


Yes, in geriatrics, less medicine is usually best, except in cases of acute infection. In those situations, it's death that you are fighting, and more is often better. Ask the docs about why they are choosing the therapies they are.

Pneumonia used to be called the old peoples friend because left untreated it is supposed to be a relatively peaceful way to go. If that is your choice then perhaps it is time to contact hospice and withdraw the meds.

I forgot to mention, ultimately, a Bi-Pap machine, in combination with several inhaled steroids, was quite helpful.

I'm really sorry that your mom is so ill. My mother was in the hospital at about this time with a similar condition, and the treatment you describe is exactly what allowed her to pull through.

I'm assuming that you are either an MD or at least an RN, since you are so knowledgeable about why she's on two antibiotics and a steroid. I had to ask.

Perhaps Hospice care is a more appropriate choice at this time. If you have POA, I would enquire about Hospice or Palliative care.

If you have mom's healthcare power of attorney and mom is unable to speak for herself, you can stop everything. If you don't have that piece of paper, your power is very questionable.

GE, I see you mom is 94. How long have you been caring for her? It sounds as if your mom is quite sick and docs are trying to treat her with antibiotics. Have they dine any testing to determine whether this is a viral or bacterial infection? The infection by itself will cause the behaviors you are seeing in your mom, especially since she has dementia. The docs are trying to get your mom better and at 94 that is very difficult. Does your mom have a DNR and advance directives in place? Are you mom's POA? I can certainly understand your anger and frustration!

Does mom have a diagnosis? What is the prognosis? It may be a combo viral and bacterial.