Acting out/Hallucinations led to an ER visit

KarenWorriedDaughter

Hello,

I am new to this support group but should have joined years ago.  My 85yr old dad is in mid to late stage Alzheimer's.  My mom is the main caregiver but is overwhelmed and starting to make bad decisions or not do anything at all.  She is very resistant to in home care to give her a break and resistant to my attempts at having a long term plan and start looking at memory care facilities for when she can't take care of him anymore.  It is so frustrating.

Today, my mom called me and said my dad was laying on the floor moaning and was not being responsive with any words.  The nurse neighbor came over and took his vitals and had my mom call for EMS.  I met her at the hospital.  After many test (blood work, urinalysis, x-rays, CT Scan)  all test came back normal.  The CT scan showed further deterioration of his brain which makes sense since he is progressing in this disease.  The verdict is that my dad was acting out a hallucination or something like that so we could not tell what was wrong with him.  He acted fine once he arrived at the hospital.  He was released and we were advised to put a care plan together with our PCP.  I have been on my mom about this for some time with no action or willingness on her part.  I know she has a lot on her plate and so do I, so I'm trying to realistically start putting things in motion because I feel she in not capable at this moment.  When I left their home after I dropped them off my dad had zero recollection of being at the hospital, the ambulance ride or lying on the floor moaning.  Has anyone else been through similar episodes with their LS LO with scary behavior/hallucinations?  Also, any tips for getting mom to willingly accept in home care and start preparing a long term care plan together?  I'm doing the best I can to help her but these emergencies keep happening and I am missing full days of work to help my mom.  If we can get her some help then she would be less reliant upon me and I would be less stressed.  I think it would help both of us.  I'm hoping today's scare will get her to start thinking about accepting some help.  Any suggestions are appreciated.

Vitruvius

A possible explanation for your father's episode is a "silent seizure". These are seizures with no obvious "seizure like" signs, but in dementia patients can cause an episode of extreme confusion and hallucinations. I'm not a doctor and am not saying that's what happened, just suggesting something to look into.

Something similar happens with my wife and the silent seizure is what her neurologist suggested may be the cause. There are meds that can help.

As for the issue of additional care. I can't help you as I haven't been able to resolve this for my own situation. 

KarenWorriedDaughter

Thank you on the feedback of a 'silent seizure'.  I will look into it and ask my mom to mention it to my dad's PCP.  I will also ask the psychologist who most recently evaluated my dad at the Neurology office.  I believe the meds he takes at night to sleep are also anti-psychotic.  I have some digging to do.  The episode today happened when he got up in the morning which is why I thought maybe it was a form of hallucination and was acting something out.  He does get up at night and wanders saying he has to go meet some people.  My mom usually wakes up an convinces him to go back to bed.  This is the first episode where he could not stand up and laid on the ground unresponsive.  This disease is mind boggling.  All the best to you and your wife.  I appreciate your feedback.

​fesk

There is also the possibility that your father fainted - perhaps a drop in blood pressure or a vagal event. As you are doing, check all medication side effects and interactions. If any of the medicine is new, it may likely be the reason. Keep track of all symptoms/issues to discuss with the doctor. 

Also, I would be sure your father has someone by his side at all times when walking, getting up from a seated position, etc. I would use this as the reason for your mom to accept help in the home now. You may need to tell her it's for safety reasons until this is sorted out with the doctor. You may also want to tell your mom that it is to help you because you cannot continue to miss work. Once the help is in the house and she is used to it, she may very well want to keep it.

May flowers

My FIL had some very vivid “dreams” that he was acting out, ending up on the floor a few times. He wasn’t unresponsive as long as your dad was, but it did take a long while to rouse him. In our case, we found certain medications made it worse. It is hard to differentiate what is the disease and what is the meds sometimes.

My FIL had a terrible time with both Tamulosin and Gabapentin. When he moved here last year, we took him off both (with neurologist supervision) and his nights improved remarkably. He was put back on these and many others during his 8 months at MC. After he moved back with us in January after his fall, he nights were off the wall crazy, almost scary. Some of it was  anesthesia too but he improved with each med he came off over the next two months (once he got past the withdrawals).

He is off all meds now except melatonin and Pepcid at night and while it is not perfect, the nighttime craziness are almost completely gone. Others have had just the opposite experience. 

It is a lot of trial and error getting it figured out!

I hope your mom will start accepting help. My MIL was this way. We tried for years to get them to move closer to us so we could help her with my FIL. When they finally did move, she was dx soon after with stage 4 cancer and died a few months later. I only mention that because caregiving can take a huge toll on the caregiver, and many times they don’t take care of themselves. She was very depressed and sick even before the move, we had no idea how much. Her friends recognized it but didn’t reach out to us, which is sad because we would have been much more insistent they move sooner.

 Maybe you can approach it that your dad needs her healthy and she needs someone along side her in this journey. When my FIL was in an MC, we knew one man who lived in the IL wing of the facility and his wife in the MC. He spent his days with her, going to activities and meals, taking her out for walks, but the “heavy lifting” was up to her caregivers. I would maybe tell your mom that in his right mind, he would never want her doing this to herself. I know my FIL wouldn’t. 

harshedbuzz

KWD-

It's hard to say what your dad was experiencing. 

It could have been a decrease in BP and resulting fall, disorientation coming out of sleep, hallucinations, seizure.

You mention a medication for sleep that might be an antipsychotic- Seroquel is one often prescribed but there are others. They also work to dampen down hallucinations- you might ask his prescriber if this dose could be increased or if a daytime dose could be added. 

Your mom sounds a bit like mine. Initially she was in such denial that anything could be "off" with dad that he wasn't diagnosed until she'd nearly died with him acting as advocate for her. Once diagnosed, she seemed unable to make a plan for progression and fought bringing in professional help.  

I worked around her in 2 ways. Firstly, I created a shovel-ready Plan B for dad's care. Around 1/3 of caregivers died before their carers and I wanted to be prepared for that possibility. I toured a dozen MCFs and their attached SNFs- I found a SNF which would accept him on the fly and knew what paperwork I'd need to transfer him from there to his new home if mom died or was suddenly unable to provide care.  I also investigated HHA agencies in the event she was willing to consider one.

The hiring of help was dicier. You need to get to the root of why if you are to make headway here.

For some folks it's the discomfort at having a stranger in the home. This is not unwarranted; the first agency offering was a thief who made off with some of mom's jewelry and all but one annoyed my dad resulting in an uptick in challenging behaviors.

There is also a kind of lady of a certain age and mindset who assumes this role as part of her responsibilities as a wife- the old "in sickness and in health" thing- and isn't willing to delegate care as it might reflect badly on her.

It's possible your dad has bristled at the idea of a "babysitter" and she doesn't want to rock the boat or disrespect him.

And then there's the money. This was my mom's primary issue with hiring help. HHAs are an expensive proposition. Where I live, an agency aide is about $35/hr with a 3 hr daily and 15hr weekly minimum.  Dad had daytraded away a big piece of their nest egg early in his dementia and money was tighter than she'd planned on. Given that no one has a crystal ball and can predict how long a PWD will live with the disease, managing expenses is really difficult. One thing that helped was taking mom to a CELA who explained the Medicaid community spouse rules assuring her that there was a safety net and that while she'd be broke, she wouldn't be homeless. 

What eventually helped in my situation- YMMV- was a come to Jesus where I sat her down and told her she could chose the help for dad now or I would opt for first available when this gig eventually killed her.

Good luck. IN many respects my parentWD was the easy one (and he was h*ll-on-wheels). 

HB