Not complicated at all, Lynn. And standard Hospice philosophy as I remember it.

Lynn-

For what it's worth, we tried Seroquel two months ago when Dad reached a point in hallucinating and urgently needing to leave where redirection was no longer working. We increased the dosage gradually over three weeks, with the paradoxical result along the way that his irritability and energy were increased, conflicts ensued, and the hallucinations were not even touched! Eventually, after raising and raising trying to find an effect, he no longer could walk - extreme Parkinson's mobility symptoms. We won't use Seroquel again. It was very important as his mobility became affected to ensure he was being watched all day after doses for effects. It was essential to have him out of his room for that purpose and I had to call frequently for status checks.

The other point worth mentioning is that whenever our LOs are at risk of facility personnel using medication to manage troublesome or labor-intensive behaviors, we need to carefully restrict the amount of drug available PRN and check daily to see how many PRNs were requested and administered, at what time, and under what circumstances. Lastly, if you decide to discontinue a medication that was available both on a standing daily dosage and as a PRN, make sure to take up all the old medicine and see that the PRN order is removed. Because I didn't pick up the pills and check Dad's pill log, I was unaware that he continued to receive Seroquel in PRN doses nearly a month after the discontinue order and I attributed to his disease process episodes of severe decline that may have been caused by continuing doses of Seroquel. I am still comparing records and observations to untangle that!

Good luck, hon!

"we need to carefully restrict the amount of drug available PRN and check daily to see how many PRNs were requested and administered, at what time, and under what circumstances. Lastly, if you decide to discontinue a medication that was available both on a standing daily dosage and as a PRN, make sure to take up all the old medicine and see that the PRN order is removed."

Hi Sue - I appreciate your reply but I don't know what the above means. Can you please explain? My dad has been on Seroquel for over a year and I will ask the hospice nurse tomorrow if she thinks this might be making him worse. I believe the dosage has stayed the same since July 2009. Also, they are supposedly increasing his Ativan again, which we finally had down to a very small dose. The CNP does NOT want to have input from the family about meds, just like the psychiatrist whom I had to fire a few weeks ago, who had purportedly said "if the family wants to be involved in what meds he is taking I won't treat him any more." Fine, he is off our payroll! Lynn

Hi Lynn-

Sorry for being all jargony. Many people have good luck with Seroquel and I should clarify that it didn't cause permanent mobility problems. My point was more about the discretionary use of any medicine and our need to monitor. Around here, our caregivers sometimes ask for some discretion in giving an extra dose of medicine as needed (PRN). That could be administering a muscle relaxant, for example, "as needed" in the case of a muscle spasm, or pain medicine as needed. Although our caregiver can request a PRN dose, our nurse is (supposedly) the gatekeeper on actually approving and administering a PRN dose.

A doctor could order seroquel at just a steady daily dose, or a doctor might order a steady dose AND give the nurse the PRN option of an extra pill a day (or even two). Hopefully the doctor specifies the upper limit of pills and safe time interval between doses. In Dad's case, he was taking Seroquel on a steadily increasing dose while we were trying it, plus the nurse had the discretion in the event of "need" to give an extra pill.

A PRN for pain is one thing, but I worry about PRNs for behavioral symptoms that are disruptive or annoying to caregivers. I worry about how responsibly the discretion to give an extra pill will be exercised. In our case, although the nurse discontinued Dad's daily dose, she allowed Dad's caregivers to continue giving it PRN sporadically for a month after it was ordered discontinued in its entirety! I should have picked up the pills and checked his medicine log to make sure the D/c order had been given correct effect. Live and learn.

Thanks for the explanation Sue. Some people on here obviously have a medical background, and some of us definitely don't!

Bear in mind, though, that behavior control is essential where other residents may be affected and not just for the convenience of caregivers. It is incumbent upon the facility to provide a safe environment and that sometimes means controlling some behaviors. In this day and age, physical restraints have been outlawed in most states.

I just wish they could put up the bedrails on both sides of the bed! I don't think that is such a restricting sort of thing and it would keep my dad from getting himself out of bed, but that isn't going to happen in ALF. The hospice nurse is supposed to come up with a solution today.

I could use a solution from your hospice nurse, too! Having backed off Seroquel, Dad is taking just Xanax and the shift supervisor told me tonight that she's had discussions with the facility director about Dad telling people they need to leave, disrobing, and cussing out staff. He is mobile, very confused and also energetic. Of course, he doesn't do it when he's with me. Any ideas? Thinking of increasing the 2:00 dose of Xanax to see if that helps. The problems seem to be from 4 -8 pm.

Sue, sounds like your Dad is sundowning. So does my Mom. I'm going to try the exelon patch rather than pills to hopefully get a time-released dosage for her to attempt to solve the sundowning effect.

I don't know enough about what actually happens with sundowning. Do their brains just get tired in the evening? Is it a response to less sunlight? Does the medication wear off? In my Mom's ALF with all residents with dementia, almost all the residents who aren't dozing in a chair after about 5:00 pm have a noticeable cognitive/personality change in the evening. Leaving a room with no pants or no shirt or plastic bags on the feet is a common occurrence. Someone who has been upbeat and happy during the day will be whining or crying in the evening. Angry words and pushing in the halls happen. The number of staff available and the amount of attention they get is the same, so why? Robin, have you seen any studies on sundowning? If we knew why it happens we might be more effective in countering it.

Sue, the people who disrobe, cuss at the staff, or walk into other people's rooms at my Mom's ALF are not sent away. I find that reassuring because my Mom does that too sometimes.

Annie, I think sundowning warrants a new subject. Let's start one.

Good idea, Pat. It's hard for me to figure out when to start a new topic or continue with an old one. I'm glad you're on top of it.

Apparently the psychotic behavior has subsided (for now anyway) so most likely the infection caused it. His new antibiotic seems to be working as does the fentanyl patch, so he actually had a CG call me yesterday so he could talk to me. His speech was not great, but his thoughts seemed a lot clearer than they have recently when I could make out what he was saying. They also have ordered a hospice "comfort kit" so if he has acute pain again they can do something about it.
The new head nurse (just started last week I think) is great. She is trying to work with the CNPs to get him off the Nameda and Aricept and is meeting with a lot of the same kinds of behavior from them that I have experienced. Interesting, she said "I am used to working in NHs and ALFs and being a team member with the medical people and the family members. These people don't seem to value the professionals at the ALF OR the family members' input." I asked her if she had just moved from the metro. area and she said yes. I told her she's moved to another planet where the culture is totally different! Welcome to my world! At least I know it is not just I who thinks things are pretty crazy there! She's going to try to get the hospice palliative care dr. to become my dad's primary care so she can work with people who aren't so resistant to being part of a team. I thanked her, wished her luck, and told her I just don't have the energy to continue fighting these people. Talking with them is so draining. I hope she is able to make some headway.
At least my dad seems more stable right now but he continues to decline.... Lynn

Lynn, sometimes 'stable' is the best we can hope for. Glad to hear things have settled down for now. Hugs!

Lynn,
Glad some good came out of the conversation and also that your Dad seemed a bit better, it never ceases to amaze me how these infections effect LBD people, Lets only home there is some reprive for you and the family for a while.

Thanks! I am hoping that between the new ALF director and the new head nurse I can get the medical help I need for my dad. If they can go to battle for me (when we are forced into that situation) it will really help a lot. They are both really bright, strong women and hopefully they can start making some changes in that community. I'm not holding my breath, but we'll see....