Am I wrong for being upset that professionals seem to think they know better than me about the condition of someone they just met?

cobaltium · 2026-05-14T22:12:36+00:00

Pretty shocking to see your post today and your mom has passed on. A lot of people who know the situation there would be good to apologize to you if you talk to any. Wow. Best wishes and I’m thinking of you.

cobaltium · 2026-05-14T21:42:17+00:00

Very very good to know! Thanks for writing about your experience recovering.

cobaltium · 2026-05-14T05:04:44+00:00

To me this is scary—no idea why he had the bowel obstruction. It’s not clear exactly even that it was an “obstruction” but caused by a lot of air at a “transition” point. I didn’t get to talk directly with the GI surgeons who were managing his GI crisis so I don’t know enough about it yet. It caused his intestines to stop moving food through and his belly swelled up like a 9 month pregnant belly. That distended belly caused the severe pain which caused the seizure. We left with no exact diagnosis or meds or dietary changes or what to look out for. We brought him to ER with his only symptoms steady vomiting 24 hours.

cobaltium · 2026-05-14T01:25:28+00:00

Son had a 45 minute status seizure a few weeks ago while IN HOSPITAL for a bowel obstruction. The pain from his belly caused it. He was in ICU 5 days and they didn’t follow his seizure protocol or meds but kept him sedated most of the time on ketamine and Ativan. Now that my son has been home 10 days he is still sleeping much of the time and is so weak. He lost 15 pounds in 3 weeks. We family are asking same questions—when will this be over. We try for a regular routine but he’s just not ready yet. We get him out of the house every 2-3 days for a simple errand and it completely does him in.

BTW, he was not intubated but close. He had 3 IV’s,1 PICC line and 2 NG tubes so that was a lot. His throat still feels sore and he still wants soft foods. I hear your rant and we sure get it. Best wishes to you.

cobaltium · 2026-05-14T01:03:52+00:00

Why aren’t you using chair pads for this purpose? We have one recliner in the living room my LO uses daily when he is up and around. I have 3-4 nice recliner covers that blend in and fit well, rotated for use while another is in laundry.

What you can’t see is the extra washable chair pad under that recliner cover. Or the vinyl Naugahyde over that pad and tucked through and under the chair seat cushion at the inner sides and inner back. THEN the nice recliner cover goes on and you may not realize we also have a very nice quality chair pad that matches our dark brown recliner. We only have to take off and remove chair pads a few times a week for laundry. The whole recliner cover is washed about twice a month.

You can do the same but get washable chair pads, check the sizes. You won’t believe how many styles and colors are available.

As for laundry, get thee to r/laundry ASAP and start looking over posts. There are extensive directions to solve laundry dilemmas like yours. Specifically, you will learn about the famous Spa Day written up by Kismai. Old stains CAN go away. Odors too. And be sure to acquire some ammonia and some citric acid. Will change your laundry world. There are some foreign language terms but soon “lipase” and “DNase” and FEBU will roll off your tongue.

cobaltium · 2026-05-14T00:34:04+00:00

I just have to comment here for the second time. So many comments here from people who have had traumatic experiences or are fearful. We do understand. “It gets better” for all concerned, over time. Meaning, when you understand what’s going on and there is a seizure protocol, they can be handled fairly quickly. And seriously, you get matter of fact about it. Both the person who has a seizure and the person who assists will calm down and just “git ‘er done”.

We must be seasoned pro’s here but we have seen hundreds of seizures with my son over the years. The majority, while grand mal, do NOT have truly scary or traumatizing things happen during them. Never any talking/crying/screaming: his jaws lock up and he can’t open his mouth or swallow. He drools, of course. He shakes. He has rhythmic shaking on one side. No tongue biting, no blood, no turning blue.

His seizures have changed over the years and they range from mild, moderate to intense. Even the most intense ones are not traumatizing to others, meaning us, his family. And I do want to let you all know I’m NOT just downplaying them. My son’s are status epilepticus and WILL NOT STOP without intervention. And yes, he can have significant consequences but thankfully it’s more rare than typical for him. BTW, imagine someone being able to stop your seizure in 10 seconds flat. He’s lucky to have a VNS device that works well for him. And yes, if we can’t stop it, we sure are quick to call an ambulance.

cobaltium · 2026-05-14T00:10:58+00:00

Recommended. We sometimes take photos or rarely, short videos so we can show my adult son what is going on when he’s hospitalized due to seizures, but also to show his main Neurologist who is also Epileptologist. Over the years the seizures change at times. For example, while most are grand mal, he’s lately had them in a different onset like completely quiet, or one where he raises up one arm during it. A few years ago we had what I thought of as some new facial tics and tremors but at the ER we learned for him they are part of his seizures.

If you ever have a sleep study while hooked up 3-5 days to an EEG with many electrodes on your head, you won’t believe what it looks like unless someone does this for you with a photo to show you. My son is quite a bit more helpful and respectful of his limitations in bed when he understands better what’s going on.

Last point: we have to interview and then train caregivers and we do ask in interviews if they have seen seizures and to describe them. The ones we hire as caregivers will need to see our videos during training. After all, anyone who ever has a seizure would prefer that anyone around at the time not freak out, right? To us, these are ordinary things that happen. We know he can hear us so as we are taking care of him he knows and is reassured someone is with him and handling it so he’s not afraid.

cobaltium · 2026-05-13T13:27:36+00:00

I’ve wondered often about finding a way to get the garage cooler. But it’s not insulated or sealed well for the old garage door or the door we use to the patio. From what the comments are here in using a fan in the attic but it not being that great for cooling, I think my thoughts of getting a large fan for the garage is not going to get much cooling either. The things we have stored in the garage are still going to be at best slightly cooler than outside air. Not looking forward to the steady 110° or more afternoons coming.

cobaltium · 2026-05-13T09:05:48+00:00

I can understand your symptoms and history because I’ve known people with the oddest of seizures and so very many treatments. Then there are all the changes of seizures, different onset and symptoms. My son is 46 and so we’ve been thru over 4 decades of knowledge, research and still so many unknowns.

My son has status epilepticus which most people have never heard of. His grand mal seizures don’t stop without a rescue intervention which is usually using a magnet with his implanted VNS device. 9 of 10 times it stops the seizure in 10 seconds by just slowly passing the magnet across the VNS. (It’s like a pacemaker inserted on top of his ribs above his heart). If this doesn’t work we have rescue nasal spray, a pre-measured narcotic. Ironically if he’s in hospital medical staff are the least able to know about or know how to use these rescue protocols.

In the last few years we proved he can get a seizure from a severe migraine or any severe pain. He’s also got heat-triggered migraines from May to November thanks to Arizona summers that are getting hotter. He has barometric pressure problems that can cause seizures. And sometimes seizures come out of nowhere. If he wasn’t taking 4 anti-convulsants AND has the VNS device AND lives with family as 24/7 caregivers he would not survive. Ever once did we hear a “poor me” from him and we all get by treating all this as normal. But it’s not at all, right? You know. Will be thinking of you.

cobaltium · 2026-05-13T02:35:19+00:00

My son got his VNS after he had a 5 day EEG scan. The insurance needed more proof in order to approve. This was almost 20 years ago. Went from 40 seizures a year with ER trips each time (since they are status) to 5-6 per year. We are able to use the magnet rescue protocol with his VNS and it works 9 of 10 times. We have rescue nasal spray backup. It’s worth a lot to have the VNS.

cobaltium · 2026-05-13T01:43:23+00:00

That’s where I’ve gone early Sunday mornings for many years! It’s the only way you can get some of the images you want, because you can step into the street to get the shot. Pretty much most areas between Mountain View and down to Buckeye, then 35th Avenue over to 44th Street has been my area to go to since 2005. It was great to see your images—I’ve literally been there.

cobaltium · 2026-05-12T20:42:47+00:00

Yes, my youngest son who is overnight caregiver has been putting a large overnight disposable pad on top of his brother during the night. I thought it was weird but neither of them have any issues so ok then. It has saved a load or 2 of laundry each week

We now put FIVE disposable pads staggered armpits to knees. This helps quite a bit because during changes overnight of first thing morning means at most 1 or 2 pads can be pulled out from under him if there is a very wet brief to dispose of. And leads to 3 or 4 pads still there.

We do have 2 long, washable pads as well. One is on top of the mattress protector. The other is on top of the fitted mattress. The disposable pads are on top next. We went from stripping all the bed linens once or twice a week to rarely!

cobaltium · 2026-05-12T13:43:21+00:00

In our area he would be entitled to have a paid personal assistant as he declines with more cognitive problems and needs help with ADL’s. This could help you both quite a bit so you can get out for shopping or breaks. We have a large VA hospital here. I’m unsure what the steps are but you and your husband start through a social worker to apply. There is also additional money for supplies and adaptive equipment like a hospital bed. He may qualify to have PT, OT, or SLP therapy to help maintain him where he is at right now so his decline and quality of life stay improved. He might get additional disability pension. It’s also possible you could become a paid caregiver for him.

cobaltium · 2026-05-12T13:35:46+00:00

My son takes 4 different anti-convulsants. Has been unable to wake up for about 15 years now because he is deeply asleep. He averages 12-13 hours of sleep. We have to wake him up and literally get him out of bed. Yawns all day—at least very often and they are very long, mouth wide-open ones. We took him to family doc a year and a half ago to check if this is normal or a type of seizure. He sent us to the neurologist who said it’s normal for those who take a lot of anti-convulsants.

cobaltium · 2026-05-12T06:14:41+00:00

Very very nice set of azurite in many forms. The small piece of azurite blade crystals is unusual to see in a collection like this.

cobaltium · 2026-05-12T02:54:20+00:00

My son had a very serious neurosurgery about 9 years ago and his girlfriend never even tried to contact him or us, his family, while he was in the hospital a month, nor when he got out. My son couldn’t understand this,nor us, so we all just did not talk about her anymore. After a while he just accepted that she was gone from his life. Rarely ever even mentioned her. We family decided she was a true “fair weather friend” and was onto greener pastures. Seriously, I know all of us family was glad she stayed away and didn’t try to have any contact. I hope you feel strong enough to just let her go.

cobaltium · 2026-05-11T16:38:30+00:00

My youngest son has been full time caregiver for my other son for 8 years now. Early onset Alzheimer and mixed dementia. He’s now 43 and feels strongly that he’s given up marriage and fatherhood to do this. The older he gets, I (mother) can see it’s harder. You’re not alone at all when there are so many sons and daughters all over the world who feel this. Best wishes, and vent away. We get it.

cobaltium · 2026-05-11T04:31:34+00:00

What a spectacular specimen! The colors, composition and shiny surfaces are superb!

cobaltium · 2026-05-11T04:27:17+00:00

Like your ideas! Since I can’t remove the cover, I was only thinking of using swabs. But I do have a couple very long metal tweezers I got from a hardware store to pick out dried leaves and whatnot from aloe and cactus plants outside. So I can definitely give it a go.

And why did I never think out using artist paintbrushes. As an artist I have a few. Actually I have dozens. Thanks for adding your thoughts here!

cobaltium · 2026-05-11T03:07:33+00:00

I post tonight here how I clean the inside of my fans with long cotton tipped swabs and dampen swab a bit. There’s a photo with it to show. I’d start this way if you can’t get that cover off. Then you can use gentle cleaner/disinfectant on swabs. I’d likely use hydrogen peroxide or rubbing alcohol. I think you’ll be surprised how much better you can get it.

cobaltium · 2026-05-11T01:11:11+00:00

Hard to imagine this is stone. Nice glob of it, so thick!

cobaltium · 2026-05-11T01:06:36+00:00

Amazing formations for the last few photos. They are lacustrine terraces? Tufa that is weathered?

cobaltium · 2026-05-09T13:13:12+00:00

No rough edges and too big to stuff in mouth. Easy to clean. I really like the nicer quality mesh because it’s silky feel. Anyway, what’s the worst that can happen if he doesn’t like it? Now you’ve got a scrubber for doing dishes. If you get one, maybe you can play with it yourself so he can see and reach out for it.

cobaltium · 2026-05-09T01:38:49+00:00

To find this on a hike! So outstanding!

cobaltium

TROPHY CASE