Pat, I know, I really do know that you went over with the staff about Derek's medications, even so please reiterate about absolutely no Haldol. Your last post about his behavior while trying to settle-in causes me to imagine someone getting edgy and not going over the chart. Haldol is a normal med for most but as you know not LBD.

Dorthea

I gave them a printed sheet as well as iterated the 'no Haldol', 'no Risperdal' message. I've also insisted that they let me know if any new drugs are prescribed before they are given.

One other place Haldol generally pops up is in the "comfort kit" that is provided to families by hospice agencies. Be sure to have a discussion with hospice as to what meds you don't want included in the kit.

Thank you, Robin, I'll keep that in mind if he ever goes on Hospice.

Our doctor (Brad Boeve) told me to list Thorazine, Mellaril, Stelazine, and Haldol as "allergies." It is on all of Coy's medical records, at each clinic we deal with. That way if he is hospitalized it will show up on his chart and his wrist band, etc. Apparently a written statement of allergy is a bigger deterrent to the drug being given than a mere family member's pleading. We've never (yet) been in a situation to test that, but I'm sure going with Dr. Boeve's advice!

Yes, we have many local support group members who do the same.

Someone in a local PD support group listed Haldol as something the patient was allergic to. He was admitted to the hospital and though the wrist band said "allergies: haloperidol," he was given Haldol for agitation. He died a few days later, presumably due to NMS.

I guess the moral of the story is someone with dementia or who cannot communicate, needs an advocate with them at the hospital 7x24

That is so disheartening, that even the allergy listed on the wrist band didn't stop it from being administered. Certainly an advocate is a necessity. I was hoping that being able to point to the wrist band would give the advocate more stopping power. It is very discourging to hear that it does not.

Frank had a bad reaction to ativan, he had an orange wrist band w/it listed and they gave it anyway. The next day they also had a paper on the wall, above his bed with the list of meds he couldn't have.

I guess the moral of the story is someone with dementia or who cannot communicate, needs an advocate with them at the hospital 7x24 [/quote]


I can't tell you how many times I have heard stories like this and it is indeed sad but yes I agree people with dementia need an advocate all the time !

Yes, it's true! I remember one hospitalization where Derek was in the ICU for two weeks and I still have a whole notebook full of ways they almost killed him. I was afraid to go home, so I didn't--I slept on the floor. Other hospital stays were just as horrifying but not as long.

I should not be so surprised. My mother (who does not have dementia) was in the hospital last summer with severe back pain from arthritis. This wasn't her first flare up, and she told them from experience that she couldn't tolerate narcotics. Several of us told them at different times, "Please don't give my mother narcotics. She can't tolerate them." And, sure enough, they insisted on givng her morphine. She was in her right mind and had advocates, and that wasn't enough to avoid being subjected, against her will, to something that made her violently ill.

Those of you who work or have worked in hospitals, how/why does this happen? Is there anything we can do to protect ourselves and our loved ones?

Well, as an RN, I have worked in hospitals, although most of my nursing years have been spent in home health. There are a lot of reasons more of these incidents happen now than in the past. For one thing, patients aren't kept in the hospital as long and the increased turnover adds to the general confusion; patients in the hospital are sicker and need more care; my biggest gripe: The staff changes ['rotates'] almost every day so there is no continuity of care. Obviously, a nurse who knows a patient better is going to be more familiar with his/her medications and care plan.

The hospital where my husband spent the two weeks in the ICU [this was years before Lewy] was a large, urban teaching hospital. So many medical residents saw him that they didn't know what each other had done [because charting didn't get done or read in a timely manner] and there were duplicate orders, counteracting orders, etc. A real mess.

What can we do to keep our LOs safe in the hospital? Honestly, you really need to be there asking questions and making a pest of yourself 24/7. Statistically, though, the best indicator for a positive patient outcome is a low nurse-to-patient ratio. So, if you have a choice, choose a hospital that has one. Surely, nurses make mistakes, too, but they are usually the ones who catch the mistakes--theirs or the physicians'--before they cause harm. They are also the ones who check for changes in your LOs condition and spot a problem before it becomes a crisis.

The hospice nurse talked to my LO's doctor about not giving him Haldol. I had been giving it to him for the past 4 years without any bad reactions. I only gave it to him when he became agitated and it calmed him down.

So the doctor prescribed Ativan and tonight I gave him his 1st dose as he was getting difficult. Oh my, he had an awful reaction. Couldn't feed himself and would pretend to take a bit (with no spoon) and chew his fingers. He fell out of his chair 3 times. Once quite hard and when my daughter and I would try to lift him back up he would just stay in a fetal position. He was also hallucinating and babbling. Really scared me. Sooooooooo no more Ativan for him. Any suggestions or do I just have to keep trying different meds to see what works.

We are having a winter blizzard here in more ways than one. Jeanie

Why don't you stick with the Haldol since your personal experience trumps anything else?

I think that I would do as Robin suggests, if I were in that situation. If I were starting from scratch and I thought my LO might have LBD, I'd certainly avoid Haldol. But you are not starting from scratch -- you are starting from experience. That makes a difference, in my mind.