Follow up to rocking/crashing and med question

May flowers

So, following up from my post here: https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561119

So no UTI, no constipation. His agitation and the rocking, crashing, spinning and trying to climb out of bed is worse and is non stop. He is looking more and more peaked, exhausted, and nurse is hearing an irregular heartbeat.

They doubled the risperdone (which worked wonders for him for a few months) 

Since upping the dose, it easier to change and clean him again, but it’s almost making him bipolar. Laughing one minute, hollering the next, anxious, sleepy, goofy, angry… and still restless day and night. All the effects aren’t bad, he also gives hugs, says he loves us, and says thank you when we help him.

So I’m wondering if any of you had this effect of risperdone? I  going to ask the nurse about it next week. Im wondering if he needs another med to counteract this one or if we need to go another direction altogether.

Of course, there is terminal agitation to consider but the nurse keeps telling me it looks different than what she’s seeing. He can sit still and communicate some, he can calm as long as we are touching him, but the minute we aren’t engaged, he goes wacko. 

​fesk

Hi May flowers. 

My mom is very sensitive to medicine. Risperdone didn't do much to help her, so I can't comment on this exact med. She did not react well to Seroquel - the more she took, the worse she became - non stop agitation leading to delirium. I also think Xanax created mood swings.

It could be that as he has taken it for a while now, and as the levels are increasing in his system, it is not a good fit for him. From what I have read, antipsychotics create a lot of changes in the brain over time.

In my opinion - and it's just my opinion, I don't like adding a med to counteract a med. If it's a minor side effect and the medicine is helping otherwise perhaps, but mood swings and bipolar type reactions are not minor and are exactly what this type of med should be preventing. I would see if there is something better suited to help him or if decreasing/tapering a bit helps.

I may be confusing posts, but did you previously mention you thought the behavior may have started when a different medicine was added? Was that medicine ever removed? It could also be different medicines not reacting well together.

ButterflyWings

Oh May flowers- I don’t know how you all and he sustain this. Seems like the hospice team needs to really be proactive to find him a more comfortable baseline. Ramping up and an irregular heartbeat too? Agree with you, that can’t be good.

I sure hope you can find a solution for his frantic behavior. Poor guy, but goodness gracious how strong his constitution seems to be! I’d be worn out just watching his perpetual motion! Sending you hugs. You are an amazing daughter-in-law 

M1

Sounds like it would be worth trying something different, for sure.  ?Seroquel?  Zyprexa?  Those are other options in the same general category.  Ativan and morphine if you think he's terminal.  Hard to tell about pain?  Seemed like you said morphine helped at one point.  I wouldn't be afraid of using it chronically if you can stay ahead of constipation.

mommyandme (m&m)

So so hard, I’m so sorry for all the anguish this must cause. He’s so fortunate to have you. Sending positive thoughts your way.

May flowers

Hi Fesk, my FIL also has opposite reactions to some meds. He has bad reactions to seroquel, Zoloft, Gabapentin, Ativan, lithium, namzaric, and several others. Risperdol has been the best med so far as far as sleep and cooperation - it is just that it makes him hyper. But it also makes him sweet - hard to explain. Today he ran into me with his chair and actually apologized and asked if I was ok. I was shocked!

The med you may be thinking that started the worse behaviors is the med for urine retention. All of those meds really mess with him but it’s something he has to be on or he won’t pee, unfortunately. 

ButterflyWings, just watching him exhausts me. Today he kept running into a cabinet  with his chair and DH asked him why he is doing it - he said he didn’t know, but he can’t stop.

M1, I will be sure to ask about the other meds. Haldol did nothing to calm him (I was surprised at that) the one time we tried it. The nurse used morphine once when trying to do the catheter. It relaxed him some but she expected it to sedate him a lot more than it did. Anyway, if it works to calm him, it’s definitely worth a look. 

If you were me would you ask for something like morphine instead of risperdol? We can always go back to melatonin at night for sleep - it worked fine..

Thank you M&M, it is hard to watch. All of it bother us more than him, it seems. We ask if he is okay, he says “Yes, why?” and sometimes “Yes, are you okay?”. Lol.

What a conundrum. You all have given me great ideas to ask the nurse. Thank you!

Olly_Bake

Haldol was my dad's downfall. My sister had doctor put him on the max and he started being very unstable on his feet, had handshakes, and developed a head twitch. Begged the doctor to remove. But because sis was claiming POA the doctor would not listen to my plea. Then low and behold one day while dad was trying to go outside he fell and hit his head on the bumper of his car and was never the same mentally. That's when his dementia symptoms started. Ativan he could handle only a small does I believe it was 0.5. And I already mentioned in your other post that mom did not have a good experience with risperdole.

I also believe highly that meds build up in the elderly because their processors have slowed.

Haldol and risperdole may have worked wonders for others. Just re-sharing my/our experience.

M1

MF yes, I would definitely think about using the morphine more.  I think most folks are unnecessarily fearful of it.  It works quite well and many people can take it for long periods of time without oversedation.

May flowers

Olly, sounds like your LO reacts badly to some meds too. Some meds I was afraid to use when we were thinking he might return to walking, I’m less afraid to use now that he’s not mobile.

Day 2 of the new dose, maybe it was just adjusting. but today he is calm, happy, chatty and affectionate. No bumper chairs or bed spinning.

What a roller coaster.

M1, thanks for the reassurance on morphine, I won’t hesitate to try it to calm him if needed. The hardest is knowing what is caused by a med or what is just dementia.

​fesk

So glad you are seeing an improvement.

DrinaJGB

After 4 months of hospitals and rehabs following viral encephaltis DH was placed in a neuro rehab for his acquired brain injury. He had terrible anxiety so the doctor there suggested a med to use "off label" to help tamp down his anxiety. After 2 days he was rocking, spitting, moving his arms around constantly, and then he was unable to walk. It turned out to be a bad reaction to his med for anxiety.

  Long story short he spent 9 days in an ICU at the Texas Medical Center and then another week on a rehab floor to learn to walk again. The team of neurologists at that hospital where he was told me that a "brain injured patient should never have been given this drug." Hence, the ICU stay was to wash the drugs out of his system. He came home and was lucid and calm. He refused any other types of medications after that horrific ordeal.

​fesk

How is everything going, May flowers? Has your FIL continued to do well on the new dose?

May flowers

Hi Fesk, thanks for asking. The behaviors have calmed down somewhat but it is different from day to day. We’ve tried a small dose of morphine at bedtime per hospice recommendation, and it helped a few times. 

Someone on here said they used melatonin alongside risperdol and it helped, I don’t remember who. I want to ask the nurse about that.

​fesk

I hope they are able to find the right med combination soon. Keep us posted.

CatsWithHandsAreTrouble

So glad things seem to be working out for ypur FIL for now. I hope y'all can find a combo soon that works and helps him.

Joydean

MF, I have no suggestions, just letting you know I’m thinking of you and sending prayers! Just the thought of what you all are going through is scary. Hope you can get some rest! 

May flowers

Update, thank you all for your kind words.

Well, the new dose of Risperdol does not appear to be working - he is back to being severely agitated and combative in the morning, as he was before we even started Risperdol. He was so difficult this morning, we had to give him a Haldol and he did not calm down with it either. We ended up leaving him alone for a few hours (in his wet bed and naked, sadly)  until he would let us close enough to clean him up.

Now he is in his chair and acting pretty relaxed.

The nurse is going to talk to the doc, but she mentioned possibly trying Depakote next. I don’t know if this is an add on to Risperdol or instead of it. Any thoughts on this one?

Olly_Bake

Sorry to hear that the Risperdol new dose is not working. A low dose of haldol never worked for dad by itself but did with low dose of escitalopram. Then if given a high dose of lorazepam, it left him comatose and helpless. So for me, that was a big no no. Previous hospice advised on leaving an agitated patient alone until it blows over if possible. We hate to do it especially if we see them wet because we know what it can do to the skin. We hate to see them stay up all night but as previous hospice said, make the room safe, setup a way to know if they left the room and then try to rest yourself. Hard to do.... but for our sanity.

I have no personal experience with Depakote but read on it extensively last year when I thought dad would require a med change. Haven't had a chance to check this forum to see if anyone has personal experience but do recall aging care forum had many personal experiences from others. Many there seemed to have a love or hate relationship with that medicine. When I was reading on it, other meds were prescribed to go along with it, but I don't recall it being Risperdol unless it was missed.

May we find strength to take care of the task set before us today.

May flowers

Thanks, Olly,

I’ll find out more when I talk to the nurse today. I have a feeling, as with everything, it will be trial and error

Agree about walking away. We left him alone for 2 hours to calm down yesterday. Finally, he was cooperative.

​fesk

Sorry this is happening, May flowers.

We haven't tried Depakote. I believe it is a seizure medicine like Gabapentin that is sometimes used for mood disorders. It is not an antipsychotic like Risperdal. It can be used as an add on I believe.

You may want to consider a different antipsychotic at this point instead of adding on to Risperdal.

What did hospice say? Has the caregiver been able to adapt?

Daughter80

May Flowers,

I’m so sorry you guys are going through such a difficult time. Prayers for you guys to figure out just the thing that will help calm your FIL. Hugs. 

May flowers

I wanted to follow up on my follow up… we seemed to have gotten some things under control, maybe, for now anyway.

The hospice doc upped the Risperdone to 1mg, morning and night. Due to agitation in the afternoon, the hospice nurse suggested splitting it up .5 in the am, .5 around 2pm and 1mg at bedtime. This helped some.

We made some other changes (with approval of the hospice doc) we took him off his rx prostate medicine and put him on a natural prostate med. That has been almost a month now. I believe that has made a huge difference, so much so, I may ask hospice to taper the risperdone down. He always reacted badly to those prostate meds (flomax, etc) even when he was mild to moderate.

Another thing we did is add blackstrap molasses to his daily supplements (high in iron, magnesium, and potassium). We did this thinking his spinning and crashing was actually restless leg syndrome. I chose this form of iron because it is non-constipating. I mix it with chocolate milk and he doesn’t notice it. There has been a remarkable decrease in the crazy leg movements and spinning, and if I miss a day, he starts back. 

His low BP is now in normal range and has been for a month.

So anyway, I’m hoping we have mitigated some of the odd behaviors and give him some relief. But the dementia still marches steadily along. He is close to being unable to stand at all and having increasing troubles eating (he wants to eat but is confused on how to open his mouth sometimes). His speech is a word salad now with numbers mixed in. But he is laughing while saying whatever he is trying to say so all in all, I’ll take it. 

​fesk

Glad you are seeing improvements, May flowers.

There are so many moving parts. It's difficult to figure out what may be causing issues, but you've done a great job investigating everything, coming up with solutions and making him as comfortable as possible.

Joydean

Ditto to everything Fisk said! Happy for all of you. Seems like we the caregiver have to keep digging and searching for what will help, and you are an inspiration for all of us! Prayers for your family!