Seizure, TIA, or what? Neither. Our welcome to 6e

ButterflyWings

I finally got to type the Friday and early weekend update, but poof. My phone glitched and website didn’t save the nearly finished draft. So I will do the Cliff Notes version. 

* Minor grossness alert * 

I thought it was the end of the line on Friday. DH had some real agitation starting early in a.m. (3a to be exact) which is not his current pattern. Also rude to me & ignoring new CNA. So much cranky behavior I asked if his tooth hurt “no”, if he felt ok- “no”, did something hurt “just don’t feel too good” and at one point to more questions about pain, “yeah, my butt” (hurts).

He had uncharacteristic irregularity (2 days) and did not respond to Senna. Finally was able to “go” a bit. Before this I could have set my clock by this man’s 1x daily BM so it seems part of progression, not diet or meds. After continued bloating and multiple long trips to toilet (we spend way too much time in there daily anyway...) he started jerking and limbs shaking or having spasms, looked like he was in a trance then unresponsive and then seemed to be passing out. On the toilet. I shook him and called his name til he came to, but then he broke out in a profuse cold sweat. 

I was pretty much panicking, called hospice on speaker (never got anyone) & was able to finally get him on his feet by tilting the back of the commode frame a bit and having him lean on me til we got his pants up. The rollator was just outside the bathroom and made it 12 feet to the bed. Seemed back to baseline.

Fast forward - by Monday when nurse came she confirmed this was not a stroke or seizure as I had feared. He was impacted (learned about that here just days before it happened!) and straining to push so hard he got the poop out, but dropped his blood pressure. Was literally fainting and DH’s nurse says there is a major nerve there that can also contribute to this phenomenon while sitting on the toilet too long. Get this- it can be fatal. 

That’s what I was seeing occur and it scared the crap out of me as well. This seems to be part of our intro to 6e. DH is getting Senna Plus laxative daily now, to avoid a recurrence of the bowel obstruction. Suddenly the control he had until last week, is gone. Incontinent of #2 and I had to clean up a mess just a few hours ago. Stool on the stool, and him AD is not for sissies that’s for sure. 

Sharing in the hopes it may help someone else.  

 https://www.mayoclinic.org/diseases-conditions/vasovagal-syncope/symptoms-causes/syc-20350527

https://www.ctvnews.ca/mobile/health/fainting-on-the-toilet-is-a-real-medical-problem-but-doctors-say-it-can-be-avoided-1.3895702?cache=%3FclipId%3D104062

jmlarue

Oh, my word! What a scare this must have been for you. I had no idea that a bowel impaction could cause this. I do wonder, however, if we tend to overreach when something catastrophic like this comes along. Perhaps the stronger laxative is just too much and you could get better results with a different laxative like Dulcolax, and adding stool softeners, and/or Metamucil or fiber gummies to the mix. Dulcolax was the laxative recommended by my DH's G.I. doctor and it seems to work quickly and well for him. He also recommended the fiber for all bowel upsets - constipation and diarrhea. You have enough on your plate without inviting bowel incontinence.

ButterflyWings

J- that’s a really good idea. For now I will try just 1/2 a pill every other day, or as needed IF he has a day again where he can’t go. It is that unusual for him, so much so that I assumed progression. But maybe it wasn’t. The cause of his seizure-like response and nearly passing out  was all that extra straining to push out the impaction So, not resolving his constipation is asking for a repeat.

Will also  order some Metamucil or Dulcolax as you suggest. It is worth trying something less strong before triggering sudden double incontinence as you say. Hoping this is a boring day here. Have a good one. 

harshedbuzz

BW-

I would run the choice of laxative past the hospice physician. 

Different laxatives work differently. Some may be more appropriate to colonoscopy prep in a healthy middle aged adult but not a late-stage hospice patient whose digestive system is sluggish or non-responsive. 

A lot of docs seem to choose Miralax which is a softener.

HB

May flowers

Wow, BW, that must have been so scary! I’m sorry you are having to deal with constipation now, it is a real challenge to balance not going and going too much - then you face skin breakdown. Our routine is Miralax every day and if he does not go for 3 days, we do senekot and double miralax and that works. My LO was regular at MC, it was only after surgery we started dealing with it. In his case, it is as if he has lost the sensation of having to go, or it isn’t registering in his brain what it is. He is always surprised and scared when he does go, as if he doesn’t know what is happening.

I have ongoing vasovagal issues likely due to scarring from a past surgery, so I feel for your DH and how scary it must have been for him too. Is he able to he understand what happened? I hope it won’t cause a setback for him cognitively.

CatsWithHandsAreTrouble

Oh my, what a shock that must have been! I witnessed my first stroke on Monday with my dad and I can only imagine how it must have been for you and DH.

I have heard about people having heart attacks while on the commode straining, but spasms and fainting? That's also scary.

My mom was constipated back in March and that was a Whole Thing tm. I was so worried she'd get impacted because bowel movement hadn't happened in like three days and I asked my sister to take her to the doctor for what to do. No doctor was available and a nurse said to use prune juice and another a stool softener. My sister just grabbed an otc med and we concluded that it was the worst one she could have grabbed. Mom couldn't sleep for a week and we had to take turns taking her to the toilet every so often. 

She's doing much better now and we've stepped up on adding more fiber and fluids in her diet. She got a new med about a month ago that is causing more toilet issues and we're adjusting the meds around to see what works. It seems like one step forward, two steps back at this point.

Good luck with your DH, BW! Hopefully you can find a solution that works for the both of you soon. ((Hugs))

M1

FWIW I vote with HB for Miralax BW.   It dissolves completely in liquid, and it works very gently, best given daily or every other day.  No laxative effect, it works by keeping water in the stool.  Doesn't interact with other meds---there is a generic, polyethylene glycol.

May flowers

Cats, vagus nerve stimulation causes arrhythmias for me and is affected by my digestive system moving too slow or fast. I wonder if that is what is happening to people who have had heart attacks straining on the toilet? All I know is I had a choice between a pacemaker or trying to control it with diet and the diet is working so far (four years now).

ButterflyWings

Thanks everyone, I am going with the wisdom here. Lots of fiber and hydration in our normal diet. So whatever did cause the new constipation and impaction, maybe daily Miralax can handle it and just needs to be part of our new routine.  

HB, Senna was prescribed by both hospice docs (Senna Plus from the current/new team). I never needed to give it to him until last week's sudden irregularity and I'm pretty sure the 1st response will be "well, you don't want him to pass out again or injure one or both of you next time". Which is true, but yes the post that disappeared included my flashbacks to nightmarish colonoscopy prep a few years ago (I really thought I was dying) and I surely don't want to put him through that. Ultimately, they do want what is most comfortable for him, and Miralax was gentle and effective for a 99 year old LO so it makes sense that is a great option for DH too.

May, no...he does not understand what happened or how to help me help him. Word comprehension is slipping a lot, so I can try reminding him not to strain or push hard...he has no clue what I mean. The good news is he forgets so quickly there is no memory, fear, or reluctance to "go". But that's also the double-edged sword. He forgets what a close call we had and can't understand why I even have to be in the bathroom with him lol. As you all are saying, I just have to try to find the balance so it doesn't pile up in him again, and also doesn't go so far as to trigger bowel incontinence immediately which we currently risk doing with the full strength Senna Plus from hospice. 

I appreciate all of you!

​fesk

BW, I am just seeing this post. I hope you are both doing ok now. My mom has had vagal events and what I believe were seizures (not confirmed). I never heard that vagal events could be fatal.

They are frightening to witness. Like your husband, my mother does not recall the events which is good for her.  I hope you are able to manage everything to prevent them in the future.

Marta

BW. Do you have a reference for vasovagal events being fatal?

mommyandme (m&m)

When my mother knew what a bowel movement was and what it felt like, she could tell me she was having trouble going.  My whole adult life I’ve known of her troubles.  blech… Anyways, since I’m primary caregiver now (never knew I’d get to know my mom’s arse so well), I’m constantly on the move to get her to move…her bowels.  Mirilax is a daily staple in our adventure.  Helps so much, especially now with complete incontinence.  Although prior to complete incontinence, even with Mirilax, there were times she’d struggle. Early on in my primary caregiving role I hadn’t taken on the mantra yet of, “I’ve got to adjust because she cannot”, so I’d say to her in my stress, “I’m not going to dig sh** out of your butt” . Yet, Dementia knew different. Therefore, long story short, I’ve had to double glove a couple of times to help the process. double blech… I actually might have been as satisfied as she was with the success of that teeny tiny help I provided.  Ok triple blech.  

My point being, maybe that might help your dad from getting impacted at times. Sorry! 

ButterflyWings

Fesk thanks for sharing. Yes it was terrifying and I definitely thought he was having a seizure or stroke. Never heard of this though I now recall it happened once or twice before- not while toileting though. His hospice case mgr/nurse identified it right away and explained how+ why it happened. 

Marta, the source was his lead nurse. I did see something in one article in my follow up reading, that supported her statement but noted it is a small percentage of episodes that are fatal. I’m thinking it suggested there might have been an underlying cardiac condition in those cases (?) I will see if I can find that reference.

M&M I remember when I first joined this forum, someone was sharing about having to glove-up and do some excavating to help their LO who was constantly getting impacted. That’s dedicated caregiving!!! I guarantee my DH would not allow that. He’d slug anyone who tried. No joke. He would have to be comatose no matter how uncomfortable the impacted situation. So, hopefully the Miralax will do the trick. Hospice agreed and I’m waiting for the delivery as we speak. 

So far we are just having his regular garden variety hallucinations and a bit more agitation today. I hope things calm down vs escalating. I am pooped. (Could not resist ) 

mommyandme (m&m)

BW, sorry for saying “your dad” when meaning your husband… sincerely. I would have never done the double glove treatment if it weren’t to keep her from doing it herself and her begging me. We had many messy instances leading up to it. 

Seems like all the fixes are just the lesser of two evils. Darn dementia!! 

Hahaha “pooped”  thanks for the chuckle. Never knew I’d find laughter around poop but whatchya gonna do?! 

May flowers

MM and BW, count me in the double-glove club. I have had to do a manual extraction 4 times in 5 months for my FIL. It ranks up there as the number one (number two lol) thing I would never thought I would do.  When caregivers and DH complain about poopalooza, I remind them that I do not want my LO or me to have to go through that again so we are going to err on the side of caution. Day 3 of no poop is double dose of miralax and regular dose of senekot.

I can’t even imagine if it was my DH though, I am 100% sure he would never let me. The only reason my FIL does is he is so miserable at that point. He does not complain, other than telling me to hurry up and get it over with.

ButterflyWings

M&M- no worries. He is more like my toddler now, anyway. And not just in the toileting arena. I used to have a hard time imagining the age range assigned to our PWD LOs, especially in the later stages. But DH truly is tracking around age 2-3 right now, in so many ways.

Yes, it would take much further progression, a very strong sedative, and/or more than me alone to get past his Uber defenses where his body is concerned. He barely allows the quick change and “one body part at a time” sponge bath routine that we have pieced together over time. 

The only time he’s ever pushed me, (post respite stay...and I landed on the bed thank goodness!) I was just trying to brush some lint off of his earlobe of all things and you’d have thought I was molesting him. In his mind somehow I guess I was. No, I’m very sure he’d teach me a lesson I don’t want to learn if I tried anything body cavity related. He guards his lower extremities with his life as if the stranger-danger lesson was very effective and always top of mind. At least for the foreseeable future that is a guaranteed no go. And especially if he’s uncomfortable or in pain.