Nothing but trouble with antipsychotics

tigersmom

I am starting to feel sorry that I ever started my husband on antipsychotic drugs. Since we began in late May, he has been on two doses of seroquel and three doses of risperidone. Seroquel made him incredibly sleepy and unsteady on his feet and did little for his agitation, so his geripsych and I bagged that after a month. Risperidone at the first dose (.25 mg twice a day) did nothing for his anger and agitation, so we upped it a lot for three weeks (.5 mg 3 times a day) and then nudged it a little higher (1 mg twice a day). After one week on the higher dose, he became so unsteady that I was afraid he was going to fall on the curb cuts in the sidewalk. With his doctor’s approval, we halved the dose to .5 mg twice a day. In three days, all hell broke loose. His agitation went through the roof. He woke up crying every day. He paced constantly and wanted me to do it with him. When I left his sight for more than ten seconds, he cried and screamed for me to come back. He no longer knows I am his wife. He has hallucinations much more frequently. He is losing his appetite. After three days of that, I went back up to full dose. Saturday was ok, but by Sunday he was begging me to help him and saying, “maybe I should kill myself.” I have considered taking him to the ER many times. Today I looked up the side effects. He has eight of the most common ones. His geripsych, like everyone else, is on vacation for two weeks. I am close to pulling the trigger on memory care and I feel that I will never know how much these drugs contributed to my no longer being able to care for him. I know that I sought them because he seemed so uncomfortable in his own skin, but now it seems like he is in tremendous psychological pain all the time. The drugs seem to make him more aware of his deficits (but not his disease) and his brain races constantly. He takes no pleasure In his outside walks, and wants to leave as soon as we enter a store. Tonight, he yelled for half an hour at the dinner table and called me all kinds of names. I know this could all be progression, but I still can’t help feeling I have gone down the wrong road here. I don’t know if he needs more, different, or to stop them altogether, and I am exhausted.

michiganpat

I'm so sorry to hear this. It sounds exactly what my SIL went thru with my brother. The meds seemed to make him worse and the doctors weren't much help. She tried, then stopped. He kept getting worse. I don't know how she got thru it. He passed a year ago this month. I'm sorry I don't have any answers and hope those with better knowledge can help you. This is such a horrible disease with 2 victims, the person with dementia and their spouse.

LaneyG

Tigersmom , I so feel your pain. I wish I had the answers to make things better. I have the same questions. My husband is in a very similar place right now. You are not alone. I bet you are exhausted. I hope you have help. I’d consider running the situation by his GP to see if he has suggestions in his geripsych’s absence. I am still baffled by “normal progression” and where that line is on how far to go with meds to manage symptoms. I brought my husband to ER but not without regret. He waited 6 days there for a geripsych bed. Finally got one. Has been in hosp for close to 2 weeks. He seems worse not better to me. Not sure what is going to happen when I get him home next later this week.

M1

Im so sorry. If I were in your shoes i would in fact take him to the ER. Trying different meds is easier to do in an inpatient setting. Sounds like he needs a complex regimen that will probably involve more than one drug ( Zyprexa, depakote, rexulti are the obvious next choices, but in what dose or combination etc is complex).

Sadly my take is that it's the disease that is really taking him down, not the drugs.

​fesk

Hi tigersmom,

I am sorry you are both going through this. I went through this with my mother at home. It is a very difficult process. Seroquel sent her into delirium - Zyprexa worsened her cognition but improved her other symptoms. We tried a few other antipsychotics to see if they could provide a better outcome for her without the worsening in her cognition but they caused insomnia or other side effects. We settled on Zyprexa for her.

These medications cause a lot of changes in the brain. When one is tapered and another started, it could be weeks before the first is out of the system and the effects truly wear off and the second is at a level that is beneficial and you can truly see if it is helping. That transition period is difficult. It is a lot for the brain and person to handle. Looking back, I think the doctor may have increased the Seroquel too fast in our case contributing to the delirium.

I understand your exhaustion completely. I have gone through this. I was able to hold on and work it out at home. Please do whatever you think would be the most beneficial for you and your husband. The only thing I can recommend, is going very slowly with any increases and giving the medication ample time to get in the system (or out). I realize how hard this is on both of you and wish you the best. If you have any questions about our experience, feel free to message me.

ThisLife

I'm so sorry for all you are both experiencing. A few thoughts. You're afraid he would fall on the curb cuts, he takes no pleasure in outside walks, wants to leave as soon as you enter a store. PWD do much better on consistent routine and a calm environment. The disease is causing the behavior but outings maybe ramping it up. You might want to consider eliminating outside excursions at least on a trial basis.

Playing music or nature sounds may help. My DH enjoyed listening to oldies music from his teens/young adult years.

At the eye doctor's office, they had TV with cute dog or cat videos that my DH enjoyed. Are there favorite old TV shows he might enjoy?

If you do want to consider MC, you may need to use inpatient care to adjust medications before he would be accepted. I hope you will be able to find a solution soon.

marier

I am so sorry you are having these medication issues. I too have had issues with seroquel and risperidone.

These meds were started to help my DH stay in a day program and keep him calm . The drugs increased his agitation, affected his ability to walk and his muscle rigidity was extreme. He lasted only two days in a new day program.. It was his 3rd program. Seroquel and risperidone were stopped. He is now on a very small dose of trazodone during the day(12.5) and sertraline 25 mg. The agitation is subsiding, his ability to walk and muscle rigidity has improved.. It is a trail and error process I think.

jfkoc

Fesk's comments, based on what you have posted, are spot on.

You might start by going back to what the diagnosis was and did it follow proper protocol. I would then take a close look at what your days looked like activity wise. It may be that "non-medical" treatment could be a big help.

This is hard to live with. Each PWD is different and each caregiver is different but usually when all of the pieces are on the table the puzzle can be solved and we are here to share our lives with you 24/7.