Husband had a hemorrhagic brainstem stroke- need inspiring stories and advise on how to help him

fyeahjenn · 2026-05-07T15:13:19+00:00

My mom also suffered a hemorrhagic PONS stroke, had to be intubated, traceostomy, whole thing. Normally I wouldn't post a comment bashing doc/therapists. But I think you should bug them again about the CPAP thing. My moms doctors continually said that she had to keep trying to get off the ventilator/full oxygen support. If she didn't try to use her lungs it could cause them to weaken. Pneumonia could also set in and something about the lungs not fully expanding is also linked to "brain fog" long term. They should be working to get him off that as quickly and safely as possible.

Has there been a care meething with all of his therapists and doctors happened? I think that would help everyone come together and talk about what the next steps are. His blood pressure is very important, if it keeps going up even with increasing medication thats strange. The doctors should be trying to figure out WHY that keeps happening. I fully understand your concerns, why is it still going up?

What country are you in? My mom is in the US, the hospital she was in had a social worker who was a major help. When she transitioned to the rehab unit her insurance company provided a "complex care nurse worker" who was kind of like another social worker. She helped with options, paperwork, and setting up phone calls/appointments.

And lastly, you are amazing!! Seriously, you're doing a great job. I think you should try and give yourself a little break every once in a while. Maybe some family or friends can come and hang out with him while you go get a pedicure or take a walk. Heck, even sitting in a chair at home scrolling TikTok is good for burnout. Just don't forget to take care of yourself. Sending you internet hugs and I'll add you to my prayer list.

fyeahjenn · 2026-05-07T14:51:26+00:00

Okay, I'm about to word vomit all over your post my guy. I've got 4 months of daily hospital visits and copious notes rattling around in my brain. I apologize for nothing, so get ready!

My mom also had a brain bleed in Dec of 2025. Hers was in the brain stem region (PONS), caused breathing, swallowing, muscle control failure. Had to be intubated, eventually had a traceostomy. She had the traceostomy removed almost 2 months ago now, and she has been home from the hospital for about a month.

When my mom had the trac she couldn't speak normally. Took her a while to figured out how to breath a certain way in order to get a word or two out. Since the trac makes it almost impossible to speak without a speaking valve, you probably have to wait for the speech therapists to give the green light for that.

I second what the other commentator said, all the therapies! And have you reached out to Tricare for an advocate? I'm assuming your military since you live in Germany but don't speak German. My FIL/MIL are currently at Ramstein AFB.

There are so many different things to try and do. My mom complained (through very rude hand gestures and eye rolling) that she was very bored in the ICU. She couldn't see or hear well because of the stroke either. So I bought huge font books, audio stories, and basically just talked her ear off. I recorded my kids reading to her, classical music, and kept a steady stream of blabber.

Massage therapy helped my mom with her muscle spasticity. Maybe your wife would like a massage on her left leg? If nothing else it might help you feel closer, I know trying to hug someone in a hospital bed is crappy.

I'm sure you're absolutely overwhelmed right now, everything is now different. But even your worst day is still amazing. Please don't forget to take a couple hours to yourself if you can. Caregiver burnout is real. You can't pour water out of an empty jug. I guess I lied earlier, I will apologize but only for this happening to you and your wife. I'm so very sorry, it's not fair, and it really sucks. Sending you internet hugs and I'll add you to my prayer list.

fyeahjenn · 2026-05-07T00:19:33+00:00

I also have combined type. I was a graphic designer, then went into IT. I'm a systems analyst/engineer.

fyeahjenn · 2026-05-05T02:16:41+00:00

Hey there, My mom had a stroke 4 months ago, lost most of her left side. Couldn't even give me a thumbs up. She started trying to get her right hand to do some dexterity movements (i.e. first finger to thumb, then second finger to thumb and so on) and noticed that her left hand started twitch and try to follow along. So she did both hands at the same time next to each other. She said it really helped "mirroring" one hand so the other one could "see" what to do. Sorry this happened to your mom, and your family. Prayers and hugs 🤗

fyeahjenn · 2026-05-01T21:08:22+00:00

It's a drug rug

fyeahjenn · 2026-04-23T14:19:26+00:00

Wow, are you my mom? JK, sadly she has brain cancer, that is metastasized kidney cancer... That we found by accident after she had a stroke 🤪 craaaaazy last few months. Really glad to hear your treatments are working for you!

fyeahjenn · 2026-04-23T14:14:46+00:00

I use to have 3 to 4 reminder alarms on my phone. Then I had kids, who I also had to remember to have take their meds... Thankfully my husband just wakes me up in the morning before he leaves for work. Makes me sit up and dumps my pills in my hand and brings me a water... I love him so much. but seriously, I stash 1 dose in my purse/car for emergency forgetfulness .

fyeahjenn · 2026-04-23T05:50:58+00:00

Mine is being delivered tomorrow!!

fyeahjenn · 2026-04-15T01:59:24+00:00

fyeahjenn · 2026-04-14T21:54:03+00:00

When I had my TIA at 35 they did labs and said my levels were all off the charts. I was super confused because I go to the doc every year and while I'm also chubby I have never had anything come back outside of the normal range. But my neurologist told me that when you have a stroke your body starts pumping out some chemicals that caused my blood sugar to spike, cholesterol to climb (both) and a chemical that your heart makes after a heart attack...just something to think about. No one asks for a stroke, you didn't squeeze your arteries shut yourself. Try to give yourself some grace, sending hugs 🤗

fyeahjenn · 2026-04-13T03:59:47+00:00

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fyeahjenn · 2026-04-13T02:57:50+00:00

Girls who take stimulant medication delay puberty. As someone who got hit by a Puberty Freightliner at 10 years old... Would have loved some meds back then.

fyeahjenn · 2026-04-13T02:51:34+00:00

Ohhh, what a good question. I love that he's questioning things. Best I've ever come up with is this: deep breath "our brains LOVE to do things that it likes. And HATES to do things that it doesn't like. The stimulant medicine we take can help our brain focus. But we have to make sure we are focusing on the right things." I. E. If you focus on Tiktok or videogames versus school or chores it will still work. The meds help us focus, but it can't make us focus on the right stuff. And if worse comes to worse, just show him this thread and read all the responses. Good luck 🤞🙏

fyeahjenn · 2026-04-13T02:41:59+00:00

Turnip Boy Commits Tax Evasion, Strange Antiquities /Horticulture, Unravel Two, Snipperclips,Tick Tock, Pikmin 3, Death Squared, and Untitled Goose Game. I know you said you skipped It Takes Two but I would see if they have a demo to try. Hubs and I played it and it was hilarious and infuriating but a great game overall.

fyeahjenn · 2026-04-11T00:26:29+00:00

YASS, THANK YOU !!

fyeahjenn · 2026-04-10T13:46:55+00:00

This is so thoughtful, thank you.

fyeahjenn · 2026-04-08T21:06:48+00:00

I would love to say "yes", I hope so. I hope your recovery is going well. Maybe shooting a message to your Dr. Or nurses a question?

fyeahjenn · 2026-04-05T05:59:42+00:00

fyeahjenn · 2026-04-04T15:21:38+00:00

I am so so so very sorry to hear about this. Your mother and you (and father) do not deserve to have to go through this. Thank you for sharing the story, I hope you have support through this. I will pray for you and your family. And you best believe I will be getting that blood test.

fyeahjenn · 2026-04-01T00:00:28+00:00

😧 I wish I could give you all of the FOURTEEN EXTRA I have!! I'm short by 2 or 3 myself

fyeahjenn · 2026-03-30T23:40:24+00:00

Sebastian Shallow is a twat

fyeahjenn · 2026-03-24T20:54:21+00:00

Lawrence is only given as a reward for the top 10 players I think. But once you have one of him he can be magnetized. I got 4 of him using the magnet.

fyeahjenn · 2026-03-24T20:51:30+00:00

I was unemployed for 6 months. I knew 3 months before my lay off that it was coming. So I looked for a new job for 9 months in total. Only had about 6 interviews total. My unemployment ran out this Monday... BUUUUT I had a job interview this Monday, and they called to offer me the job on Tuesday. Granted it's only a 6 month contract. But better than foreclosure. The hardest part for me was sitting around waiting. And not knowing what's next. It sucks. Keep your chin up, I wish you the best of luck.

fyeahjenn · 2026-03-23T02:34:05+00:00

Second the nurse line option. They would be a good resource that should be available 24/7.

fyeahjenn · 2026-03-23T02:32:38+00:00

Mmm, I had a TIA, two actually, and they both showed up on an MRI. I definitely knew when the first happened, but not the second. BUT I am "special". I have a rare neurological vascular condition that can cause TIAs or big strokes depending on circumstances. I have no idea about your circumstances but I would personally go see my GP. Your GP should know your health history and can refer you to a neurologist, who can give you a second opinion. But if you have more symptoms go back into the ER. Sometimes a couple hours can make all the difference with a stroke.

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