third seizure

Luckily in bed so no injuries, just before midnight. From the position of his body, it looked like he was either climbing into or out of bed. I was awakened by the loud noise he makes at the onset of a seizure.

Once he recovered he shakily got out of bed again. I tried to stop him, then to hold him up, then sat him down and ran for a wastebasket for him to pee into so he didn’t have to walk as far as the toilet in a state of weakness. By the time I got back, he’d wet himself. Since he slept fully clothed tonight, I had to peel off his wet jeans, underpants and socks, and wipe up the floor. Got a fresh pair of pj bottoms onto him–he didn’t help but didn’t hinder either so I was able to manage but out of breath after.

He seemed to be going back to sleep, but kept getting up, futzing with the bedding, and getting back into bed. He finally got up and headed for the toilet. This was maybe 20 minutes after he peed hiself. I ran around the bed to escort him (he was a tad bit wobbly but OK, no falling). But he peed extra-sloppily at the toilet, wetting not only the seat and floor, but his pjs a bit, too. I helped him back to bed. He went right to sleep this time.

I had rearranged my cleaning ladies from tomorrow (er, today-) to Thursday because my aide was able to give me time today. I think I’ll have her stay home with him while I do a few errands and chores. If he seems OK, we could both take him for a neighborhood walk.

This was just 5 weeks after his last seizure. Same as the other two–loud noise, then stiffness, then loud breathing, and finally awake, aware & wants to get moving (and pee-).

Just realized that his last seizure was also the night before the cleaning ladies were supposed to come (I have them once a month). hmmm.

I thought the last pee was sloppy–the next one was entirely on the floor to one side of the toilet, and this last one was sloppy but not that bad. I’m beginning to wonder if I should try to get him to use Depends–something I was dreading but now seems like it might be preferable (less bending).

Every time he gets up, he’s a bit stronger. First time after the seizure, he was kind of dragging his feet and moving very slowly. This time he walked almost his normal.

No, I havne’t gotten much sleep. About an hour and half before his seizure is all, but don’t feel particularly tired. Presumably adrenaline.


When my mother moved into AL, I snarfed up her lovely bedroom set (we had been using my husband’s bedroom furniture from his childhood, except for the bed). I’m not fond of platform beds and didn’t like how much lower Mom’s is than our previous bed, but having a lower bed now is much easier for DH to c limb into/out of, so I’m glad we have it. Although I hate having to dust the edges of the low platform every week.

Well, I think we can safely say that his first seizure wasn’t just a one-off. Three in less than a year. He has some form of epilepsy, evidently. So do I after my tumor removal (they hoped it wouldn’t develop, but it did). Haven’t had an event since they put me on medication. The one event I did have, I fell and broke my back.

Sorry to be a downer (as if you are “up”!), but this appears to be part of his future now. You’re lucky he had the seizure when not standing.

Post-seizure, you can expect him to drag for a while. Probably at least an hour or two. I would inform his neurologist about the event. If you don’t have confidence in him (which I recall you didn’t), get a new one. I think three events now says it is chronic, so you need to have an expert you trust.

1poorguy (ray of sunshine; not a medical doctor; should not be considered medical advice)

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Are the seizures part of his dementia, or due to something else? Any idea?

=sheila

Are the seizures part of his dementia, or due to something else? Any idea?

I can’t speak for his specific situation. But, in general, dementia is the brain dying. It, therefore, is being damaged. That can bring about seizures. In my specific case, despite the mapping of my brain (while I was awake), some damage was inevitable. He had to cut to get the tumor out. So now I’m on anti-seizure meds (that, after two years, have been 100% successful, even if 1poorlady says I’m more irritable…but that just may be because I’m becoming an irascible old man ;-).

But she would be better served seeing a neurologist she trusts than taking any advice from the peanut gallery.

1poorguy (hey…I’m in the gallery and didn’t get any peanuts!)

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Are the seizures part of his dementia, or due to something else? Any idea?
*******************
I can’t speak for his specific situation. But, in general, dementia is the brain dying. It, therefore, is being damaged. That can bring about seizures

The brain is an incredibly complex organ, with many control centers. Not all damage can result in seizures—not by a long shot. And seizures are not an expected part of dementias. Since her DH has a type of dementia that is rather rare, my question is whether or not his particular type of dementia can eventually involve seizures.

In my specific case, despite the mapping of my brain (while I was awake), some damage was inevitable. He had to cut to get the tumor out. So now I’m on anti-seizure meds

The seizure risk wasn’t simply because of unavoidable damage, but because of the specific area that was damaged.

she would be better served seeing a neurologist she trusts than taking any advice from the peanut gallery.

Absolutely. I was simply asking a question to learn the answer, not as a prelude to giving medical advice. And I think Alstro is savvy enough to realize that it may be time to talk to the neurologist treating him.

=sheila

He was not himself for days after the first seizure (mostly due to Keppra).

And for a day after the second one (no Keppra so no paranoia/craziness, just weakness and a tad bit of confusion). My brother & nephew visited 2 days later and he was fine.

He was pretty difficult this morning. Unzipping often but then not usually peeing–or peeing on the bathroom mat in front of his sink one time. And he got a little sticky poo on our quilt while I was dressing him. I tried to shower him but all I could do was spray off his lower half.

I dressed him in Depends but he won’t pee in them. I just took him to the bathroom, where he peed–accurately :slight_smile: ANyhow, guess I went too far with prune juice and colace =8-0

So far this morning I did his wash (with a few pee-infused items), the poopy quilt, the slightly poopy blanket, and the pissy bath mat and its friends.

I arranged yesterday for our aide to come today, but he was asleep the entire time she was here (I sure could’ve used her 5-9am!). I was able to get my allergy shot this morning by myself and pick up a refill for the hubster.

If he is like he was this morning all the time, I will want more help. Alas, my aide is full up with 6 clients right now. One client has her 3 days/week 9am-3pm. SO I can only get the remaining 2 mornings, and sometimes she needs to do things for my brother on Tuesday mornings (she didn;t this week becasue she stayed in the apartment over the weekend due to the weather).

As for seizures…well, his brain is shrinking and looks abnormal in scans, so not surprising. I sent a message to the neurologist in the wee hours. Oddly, I had just sent him an update yesterday about him being stable on his meds, sleeping better, but his issues with pee & poo, which predate the seizure (but are a bit worse now).

I like the neurologist. There are no treatments for PPA so what can he do? He helps me deal will ancillary problems as they arise and he’s sympathetic.

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The brain is an incredibly complex organ, with many control centers. Not all damage can result in seizures—not by a long shot. And seizures are not an expected part of dementias.

Very true. My only point was that dementia is causing brain damage, and brain damage can result in seizures. But not all brain damage results in seizures, you are correct. Hence the suggestion to consult an expert. And then taking his/her advice.

1poorguy

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I like the neurologist. There are no treatments for PPA so what can he do?

There are treatments for seizures. And, as Sheila rightly pointed out, it is conceivable there is another cause for those. It may be the dementia, but correlation doesn’t necessarily mean causation.

As I said, you were lucky he seized in bed. If he had been walking, he would have collapsed hitting anything nearby on the way down (e.g a counter, coffee table, etc). And the impact on the ground would be completely uncontrolled (which is how one can shatter a vertebra).

Peeing on the floor is annoying. Seizures can be crippling, or even deadly if he cracks his head on a hard surface.

You don’t need sympathy, you need help. (Though sympathy is always nice, and I certainly have it for you. But that doesn’t solve any of your issues.)

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“Are the seizures part of his dementia”


Just in passing, seizures can occur for many and varied reasons - at all ages.
Birth trauma can cause seizure activity in newborns - our sons both can varying degrees
of this issue and were in intensive neonatal care of days/weeks. Our niece’s husband
had a series of seizures early in the 2nd year of Covid - although they were not related to
Covid to anyone’s knowledge. DW’s father had a series of seizures - related to what they referred
to as "mini-strokes. The condition was traced to some electrical patterns in the brain - but no
cause was found. Niece’s husband got better on his own - i.e. they went away, DW’s father fell
off a roof while cleaning/repairing windows.
Of course there is epilepsy - and triggers of flashing/frequency of lighting as well as others.

There once was a condition called “the vapors”, where stress, illness, or shock would cause
people to pass out. The cause was a drop in blood pressure - and this was fairly common and
is/was hereditary. Whole families had - and still have - this condition on either the male or
female sides. Queen Victoria may not have been amused - but the condition is real.

Then there are food/poison/environmental/medical contributors to seizure/catatonic behavior.

Howie52
Much like other aspects of life, simple things are quite complex.

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"As for seizures…well, his brain is shrinking and looks abnormal in scans, so not surprising. I sent a message to the neurologist in the wee hours. Oddly, I had just sent him an update yesterday about him being stable on his meds, sleeping better, but his issues with pee & poo, which predate the seizure (but are a bit worse now).

I like the neurologist. There are no treatments for PPA so what can he do? He helps me deal will ancillary problems as they arise and he’s sympathetic. "


Finding doctors who can both listen and explain things is wonderful - and rare.
Congratulations on that.

After being in hospital for a few weeks, pee and poo issues are things that tend to be more or
less focused. Recognizing you need to go becomes more involved when you have to call for help to
get a bedpan or get help to walk to the bathroom. Then add in thoughts that the people helping
you really have other things they also have to do. Just how badly do I need to go and just how
soon do I need to “press the call button” and “should I really tell someone that I need to go
now when I might end up standing or sitting for minutes at a time with no results”.
And this does not even bring up the problems of “aiming” where excursions can be caused by
so many things - like swelling, stickiness, and other general ickiness factors.

Howie52
Patience and understanding you have in mass quantities. I suspect the gratefulness of your DH is
not able to be expressed but is there.

Hang in.

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BTW, he ate his breakfast and lunch as normal, took his breakfast meds, but refused lunch meds (last time that happened I think he was on Keppra). I’ll give him some kefir this afternoon and try the meds again. He needs the finasteride for enlarged prostate, but it doesn’t matter what time of day he takes it. I divvy his pills up for morning, noon, and late afternoon to avoid overwhelming him or upsetting his stomach. If I were capable of opening my current jar of applesauce, I could try it in that. [note to self–ask Rhonda!]

He is more tottery than he was in the wee hours so luckily I was able to kind of force him into bed (with me) with Star Trek Next Gens on.

I certainly understand why they restrain geezers in their beds/wheelchairs/recliners. I need to use my powers of persuasion. Since no Keppra, he’s affectionate and more or less obedient.

I’m pretty wiped so our aide is picking up Chinese takeout for us when she picks some up for herself and my brother. When she brings the food I hope she can show me the technique she tried to describe on how to put on a Depends without removing pants.

ugh. Dryer beeping. I hope he won’t follow me out…

Since all 3 of his seizures have been while he was asleep, I thought that perhaps there are certain seizure syndromes that occur ONLY during sleep—and thus there is no danger of a seizure occurring while he is on his feet, with the risk of falling and physical harm. So I googled.

Turns out they are called nocturnal seizures. And they commonly occur just as a person has fallen asleep or just as they are about to wake up. And the description is exactly what Alstro has recounted:

“During a nocturnal seizure, a person may: cry out or make unusual noises, especially right before the muscles tense. suddenly appear very rigid.”

And afterwards, the person is typically a bit irritable, fatigued, confused.

I think it’s worth mentioning to his neurologist, see what he has to say.

=sheila

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Interesting find. Yes, definitely mention to the neurologist. And ask if it’s part of dementia, or another cause.

They did extensive examinations in the hospital after his first seizure. He was so miserable I took him home before they finished the last test, for which we’d have to wait for nighttime (MRI)–and the only way to give him an MRI is to put him to sleep and hope he doesn’t move in his sleep. The neurologist on duty agreed that taking him home seemed best. It was unclear if anything more/actionable would be learned from the MRI–if it would even be possible to perform one on him.

Dementia doesn’t normally come w/seizures, but this isn’t “normal” dementia.

Preventing seizures takes a back seat to preventing psychotic breaks. But I did ask again about non-Keppra-related meds.

The second seizure happened in the bathroom. It seems possible that he fell and then had the seizure rather than the reverse.

Yeah, the loud noise is really awful, something you might expect from a torture victim. My first reaction is always that he’s in terrible pain or abject misery. The loud breathing after is pretty awful, too, like a mighty struggle to breathe. I wonder if the throat muscles/diaphragm/tongue become stiff like his arms and make breathing difficult.


He’s not tottery any more, but not as sure-footed as usual. He’s futzing with the bedding. Keeps him amused for quite a while, like his flute and magazines used to.

I don’t know that he’s putting any attention on the tv. But I find Capt Picard et amis relaxing.

If it’s any consolation, probably no suffering. At least not until after. One moment you’re doing , and the next the paramedics are standing over you asking if you know where you are, and if you recognize your wife. THEN the potential suffering begins (like, if you bit your tongue, or you bounced your face off your desk, or you broke something, etc).

It’s literally like someone flipped a switch. You’re completely unaware instantly.

To my knowledge, all the autonomic functions continue to work. Though ask a neurologist for a better answer. I do know that you should roll him on his side or he could aspirate some saliva (which can cause issues).

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I’ve brought him to the toilet a few times, but no dice. IS he peeing in the Depends? One can only hope!

Alas, no. I left him for a few minutes to wash the lunch dishes and take the bathroom mats out of the dryer. He peed a big puddle in the little hallway between our bedroom and the bathroom (right between the closets, which beats into the closets, but not by much-).

Time to google “how to get dementia patients to pee in their Depends.”

I may no longer need to exercise as caregiving is an active profession!

Regarding messes:

  • I got this handheld sprayer https://www.brondell.com/cleanspa-luxury-hand-held-bidet/ and https://www.brondell.com/hot-cold-mixing-valve-upgrade-kit/ for DH to use during a recent night of colonoscopy prep. He ended up not using it, because it’s unwieldy to self-administer on a round toilet (might be OK with elongated). But for cleaning up someone else, might be easier than trying to get him into the shower.

  • Depends are great for when the wearer is not in the bathroom. Once in the bathroom, when they’re removed, things can be as messy as before; but at least the mess is confined to that one room.
    Dad agrees to wear only the expensive Depends that come in grey and look like underpants (except for lack of fly). I threw out all his real underpants, putting the Depends into his underwear drawer, as well as keeping a stack in the bathroom.
    Also, consider a diaper pail, such as https://www.target.com/p/ubbi-steel-diaper-pail-white/-/A-14…

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Then there are food/poison/environmental/medical contributors to seizure/catatonic behavior.

Very low blood sugars can trigger seizures.

FWIW,

IP

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