For caregivers of people late stage who yell

Cobalt

So, how do you handle it when your LO goes hours yelling, crying and agitated?  When you can't "do anything" more because you've tried all the distractions and done all the ways you've heard that can help calm someone? 

We've tried these.  Has been going on for 6 days straight now, following a grand mal seizure.

Check for toilet need/diaper change

Check for any physical problem/medical/health issue

Take for a medical evaluation at an ER (done 2 nights ago and NO issues found)

Change room/lighting/environment/position/bed/chair/go on outing

Aromatherapy/music/TV/facial/massage/heating bag

Spending time alone next to him in the room/spend time in another room with a room monitor for audio prompts and for safety

Offer water/snack/meal

Change the diaper even when he insists he's wet but he isn't

Change clothing/bedding/position

Talking/trying conversation/staying quiet with home quiet

Keeping room dark

Bring him out to the living room to be with him when yelling hours/leave him in his room  

Surely we are not the only family that faces this.

My EO son is in my home and we have caregivers 24/7 but I am one of them.  For about 6 days now he has episodes of multiple hours of agitation.  We aren't able to give him more medications than the many he has.  He's not in Hospice but have monthly visits from the Palliative Care team that works with Hospice. I've called his Alzheimer's doctor, his neurologist and Palliative Care support line and none have any suggestions what to do.  Other than one doctor who said "If he was in Hospice in your home, we would pick him up and bring him to an in-patient Hospice unit".  She would not answer what they would actually "DO" there and did not answer me at all if they would use a medication.

Sadly, I get the strong feeling none of our medical support team are willing or able to give more suggestions for us to try.  They already have told us most families will have had their LO placed in a facility by this point. Has anyone else faced the difficult times like this and somehow worked through it without giving strong narcotics or sedation?

xupd50tla

MY Mom does this every day. I haven't found nothing to stop it. I have tried everything too. I just leave her alone and let her yell. She is on medication and it still doesn't help. It's like she has to get the pinned up energy out because she is bed bound. She can't walk. She see people and animals that's not even there. That's makes her scream also. I hope you can find a solution for this so I can do it to. A UTI will make them scream to.

abc123

Dear Cobalt, I’m sorry this is happening. Has he tried smoking marijuana for the agitation? I wish I could help. The marijuana is the only thing that comes to mind.

Cobalt

Thanks for writing that you are looking for ideas too!  I am hoping more people will come forward and let us know they have seen this problem too.  I'm sure many people with dementia have some episodes like this with yelling, screaming or crying, but I don't hear of those times it goes on for many hours in a row with no break.

Cobalt

Wish he could "smoke" it or use the electronic pen/vape but he never got the hang of that.  We do give him doses of high concentrate MMJ in the form of chocolate candybars.  This way I can get him a tab or half-tab and know that he's getting about 50mg.  It costs a lot more to find an edible that you can count on for the dose, but it's worth it.  We give it 3 x daily.  On bad days, maybe a fourth time.

However, the negative side is MMJ takes about 1/2 hour to kick in.  Meanwhile, there he is all agitated and fussing or yelling.  It's more of a preventive med for him, so I am pretty consistent giving it about 3 hours apart.  It does help with anxiety and pain, so worth it.  Better than a narcotic or typical "pain medication" because it is safer and doesn't sedate him.  Actually, he calms down enough he can get through a meal or outing or watch TV for a few hours.

Cobalt

Day 9 of increased yelling, pounding and screaming, all since his grand mal seizure.  This is not looking like he's going to "go back" to the way he was.  He had about 75% of each day doing decently, but now its about 25%.  This is really hard for all of us.  If we only knew what was coming, I swear it would be easier to handle.

Anyone had a LO get bad like this and then come back a little to their former selves?

mommyandme (m&m)

Could he be in a whole lot of pain? Severe head or neck pain?

Is morphine called for?

Rescue mom

Regarding medical marijuana—it also comes in a liquid tincture that you put under their tongue, using a dropper. My DH could not vape/inhale, and did not “like” any edibles, but putting the liquid under his tongue quick worked much better.  It definitely had a calming effect, didn’t do much otherwise, if anyone’s curious.

Cobalt

Rescue mom wrote:

It definitely had a calming effect, didn’t do much otherwise, if anyone’s curious.

On the bright side, the calming is a totally welcome reason why we use the MMJ with my son.  It calms him down enough to be able to focus on eating, doing an exercise or watch TV.

I appreciate everyone who reads these posts and especially the comments!

Jo C.

This good resource came from another Member some time ago.  While it does NOT happen with all person with dementia,  for those with such a problem issue, the following may be helpful:

  

 Part 1 and Part 2:

 

http://www.stacommunications.com/customcomm/Back-issue_pages/AD_Review/adPDFs/january2004/11.pdf

 

 

http://www.stacommunications.com/customcomm/back-issue_pages/ad_review/adpdfs/2005/january2005e/07.pdf

abc123

Cobalt, I appreciate the info you shared about your son and I hope you find something to help him. Im so sorry for all of you.

mommyandme (m&m)

Jo C.,

Even though I don’t have “a screamer” at this time, I read these articles and found them very interesting. 

Thank you

Cobalt

Well alrighty then - Just learned yesterday when my son had a grand mal seizure, that there is an association with Alzheimer's and seizures.  Apparently people who never had epilepsy or any seizure disorder may start having occasional seizures over time.  I think that the fact my son has had a serious seizure disorder all his life contributes to some dramatic issues we face.

Pretty sure now that my son is at an all time high of anxiety and that likely has a great deal to do with the increased yelling, stuttering and agitation.  I think his body just doesn't feel right to him and it's scary.

Today is a better day, so I'm hopeful that he is "bouncing back" to his better status.  Not holding my breath though.

I'm wondering if there should be a topic in this forum about seizures coming with Alzheimer's.  Maybe others are finding this to be an issue tool.