Part rant, part warning for people with Parkinsons who are hospitalized or in a LTC facility.
A little background. My moms is 83, and has had Parkinsons for going on 30 years. She has been hospitalized several times for surgeries and illnesses, and always ends up with hospital psychosis. She also has always had trouble getting her meds on time, so I ordered the Aware in Care package from the Parkinsons Foundation. I also always take a good supply of her meds with us, because in the past it has taken several days for them to get Stalevo.
about
a month ago, she contracted a UTI, and ended up in the hospital again. I took the AIC package with us, and tried to give it to many different people in the hospital. No one would even look at it. I took out the medication card and tried to give it to the nurse in the ICU ward. Not only would he not take it, he moved to a different computer when I laid it on his keyboard. Sure enough, hospital psychosis set in. Mom gets crazy crazy when this happens. We call it the crazy train. It usually lasts a few days, during which she does not sleep. When she finally does go to sleep, she sleeps for a full day sometimes, and comes out of it groggy, but sane.
A couple days into it, I ask the nurse to please give her a Benadryl at bedtime. I told her it would make her sleep, and give us all a much needed rest. The nurse asked the attending doctor, who refused. He said Benadryl would present a fall risk. Instead he prescribed her Trazadone. I told the nurse to please not give her Trazadone. I have taken it myself, and know full well the sedative properties, and that my mother is extremely sensitive to ANY sedative. The nurse agreed, and wondered why the doctor would even prescribe it.
The next day, crazy train still in motion, the doctor ordered Haldol for her. I again tried to give them the medication list from the AIC package, showing that Haldol should not be given to Parkinsons patients. I made the nurse promise me that she would not be given Haldol. Finally that night, she got some sleep, and woke up the next day just a little off. She was calmed down, but not all there. She was calmly seeing ostriches, cats, dogs, miniature horses, etc. She was released to a nursing home, where she still was just not quite right in the head. It concerned my sister and I, because after other episodes, she had returned to normal quickly. I asked to see her medication list, and saw that instead of Haldol, they had put her on Risperdal, without ever informing us. I threw a fit, and told them to quit giving it to her. The doctor came in and warned us that if she quit taking it, she would return to a psychotic state. I told him I didn't care, to stop giving it to her. They slowly weaned her off it, and she returned to normal. No more ostriches, cats, dogs, or 3 headed leopards.
A couple of days later, she started having dyskinesia and was punding something horrible. I checked with the nurses to make sure she was getting her meds on schedule. Every dose was noted as given on time. She takes Stalevo 6 times during the day, every 3 hours. I was there at 11am when she was supposed to get her next dose. No nurse. I asked about
her meds at noon. They said to go to lunch, and the nurse would find us. 1pm, we finished with lunch, no nurse, no meds. I found the medical director, and asked why she was not getting her meds on time. I was told that medication could not be administered at set time, and that they had an hour either direction in which to give meds. Ok, well it is now 2 hours late. We checked the chart, and it showed that she had been given her 11am dose. Nope, I was here, she was not given that dose. We found the med nurse, who had the dose in her pocket. By now it is 1:30pm, and the nurse gave her the 11am dose, and attempted to give her the 2pm dose as well. It does not take a rocket scientist to know if you give a double dose of Stalevo, there are going to be side effects.
I was finally able to convince them to give her a full days supply of meds to administer herself. She has always been very good about
taking them on time, as long as her mental state is good. Her dyskinesia has gone away, and she has quit punding again.
I am just posting this in the hopes that it may help someone else who has to be in the hospital or a nursing facility. Or for loved ones, please watch carefully, and just because records show that patients are being taken care of, doesn't always make it so. I almost feel like I need to be there 24 hours a day to watch out for her. Her recovery has been slow (a month for a UTI recovery), and I feel like the hospital and nursing homes attitude, and lack of understanding of Parkinsons has greatly attributed to that.
Post Edited (tatterdema) : 1/11/2014 4:37:35 AM (GMT-7)