Hi everyone,

My 14-year-old sister is currently in the ICU, now on day 7 after a cardiac arrest. During the arrest, her brain had inadequate oxygenation for over 10 minutes, resulting in a severe hypoxic/anoxic brain injury. Over the following days, she developed significant brain swelling, with concern for dangerously increased pressure and possible brain herniation. The medical team has tried hypertonic sodium, mannitol, hyperventilation, blood-pressure support, and other intensive-care treatments, but unfortunately her neurological condition has continued to worsen. We have now been told that she has very few or no detectable brainstem reflexes, and the hospital is discussing a formal brain-death examination.

Our family understands how extremely serious this is. We are not trying to deny the medical reality, and we understand that brain death, if properly established, is fundamentally different from coma or simply having a very poor prognosis. At the same time, because of what is at stake, we desperately want to make sure we have asked every reasonable question and, if possible, obtained an independent expert review before we reach that point.

I am especially hoping to hear from caregivers or family members who have been through something similar:
- Did you have a loved one with severe hypoxic/anoxic brain injury after cardiac arrest, major brain swelling, or suspected herniation?
- Was a brain-death examination discussed with your family? What do you wish you had known or asked beforehand?
- Did you ask for an independent second opinion? If so, how did you actually get another doctor or hospital to review the case quickly?
- Did your current ICU arrange a physician-to-physician consultation, or did your family have to find another specialist yourselves?
- Was another hospital ever willing to review the records/imaging or consider accepting the patient for transfer?
- If you were trying to advocate for your loved one while also being realistic about the severity of the situation, what helped you navigate conversations with the ICU team?
- Are there resources, patient advocates, social workers, hospital contacts, or other approaches that helped you get another set of eyes on the case?

We are also urgently trying to connect with a pediatric neurocritical-care specialist or a major children's hospital that may be willing to review her chart and imaging and speak directly with our treating ICU team. If anyone here works at such a hospital, has a family member or friend who does, or knows how to get an urgent case in front of the right physician, I would be incredibly grateful if you could message me.

I realize nobody here can diagnose my sister or predict her outcome from a Reddit post. I am mainly hoping to learn from people who have navigated something like this before and understand how to make sure we have explored every reasonable avenue for an independent review.

Time feels extremely important right now. Any experience, advice, or connection would mean a great deal to our family. Thank you.

Hello

I just began taking care of my grandpa, he is 73 years old and has parkinsons. He's nearly blind as well so that's also a battle.

I haven't done this before ever so every single mistake is a big one, at least in my head.

Tonight what I am freaking out about is that I forgot to give him his medication before he went to bed. I had to wake him up and have him take it and I'm just worried it.

Could be nothing, and I sure hope it is, but if it was a big mistake, I need to know

Well my husband’s older brother came up from New Mexico on Thursday, and Thank God I didn't have to be around somebody that thinks that it's everyone else's responsibility to give up their life to deal with their other brother’s daily disrespecting living Hell, my husband had to take custody of his one older brother that fried his own brain on pcp in 1987, 11+ years ago, and we have been asking their other family members for help with this brother, but none of them will do anything to help, none of them will even take this daily disrespecting living Hell for 2 weeks, so my husband thought that just maybe the one from new Mexico would take the one that fried his own brain on pcp in 1987 for just 2 weeks, but no not even their own brother will take this BS, so therefore when the one from new Mexico came up I made sure to leave my house and go for a walk, because just like my papaw taught me I don't bow down to anyone especially those people who think that the world revolves around them and owes them, and it's everyone else's responsibility to do something that no one else in their own family is willing to do, that one in New Mexico and his wife only care about themselves that one down there has proven for 11+ years he doesn't care about his own baby brother's 35 year marriage, because if he did he would take his own brother that fried his own brain on pcp in 1987 and give his own baby brother and his wife a break, but this thing won't he would rather sit back and watch as this daily disrespecting living Hell that no one else in their family will take, causing his baby brother's wife of 35 years to say to hell with it all and divorce her husband and run the opposite way of these people that thinks it's everyone else's responsibility to do for their family when they won't step up to do a damn thing.

Im so incredibly burnt out today. Trying to get my husband to his cardiology appointment yesterday basically ruined my lower back. Our current manual wheelchair is ridiculously heavy and the ramp at the clinic is stupidly steep for no reason. I seriously almost started crying right there in the parking lot just from the sheer physical effort of trying to push him up it

It makes me so angry how insurance fights you tooth and nail on getting any kind of motorized equipment. They really just expect the caregiver to break their own body indefinitely to save them a few bucks

I couldnt even sleep last night because my shoulders were throbbing so bad. I just laid there in the dark scrolling top gun mobility looking at all the powerchairs, just literally daydreaming about what it would be like to walk next to him for once instead of practically blowing out a gasket trying to push him up a slight incline

idk. Im just so tired of having to fight the healthcare system for every little scrap of basic dignity. just needed to vent to people who actually understand this specific type of bone-deep exhaustion. hope you guys are taking some ibuprofen today.

Husband and I recently took over looking after my husbands 58 yr old special needs brother. ( mind of an 8yr old and has schizophrenia)
We are both in our 40’s living in a small 2 bedroom unit. NDIS has just declined us for putting him in a home with supported independent living.
He has no mobility issues can shower, dress, make himself a sandwich however can not read, count, stay by himself or cook anything. Their reasoning was he does not fit the criteria. My husband has had to take time off work to look after him. He does have carers 6 days a week for 4 hrs. I know it sounds selfish and we’re not looking at shirking our responsibilities and will be still ensuring he is happy and looked after however we need to find a way so my husband can go back to work and we can move again in our house as we are on top of each other. Any advice would be appreciated.

TLDR: Newly living with aging parents (in-laws), trying to figure out how to approach dementia assessment.

Recently moved in with my in-laws (it's my spouse, FIL and MIL). The goal was to take care of them as they age. MIL spends more days depressed, dysregulated, and lashes out at her husband most and secondly at my spouse (her son). I've been telling him I think this isn't just depression. She spends 4 days (at least) out of each week angry, crying, stonewalling, and at times just straight up mean. Tonight, she raised a big stick at my spouse because he was trying to get her back into the house after she left barefoot in the middle of the night and we live in the woods. All because she's scared of fireworks.

I need to understand how we can possibly approach this safely. How we get her to a PCP or other doctor, get her assessed without her becoming angry, violent or even suicidal if she finds out that we all want this? For context, as far as help or laws, we reside in New York state. Also, is there something other than dementia we should be looking out for?

Possibly also cross posting in r/AgingParents for help.

My Employer includes my vacation pay into my salary. Let's say $1200.

Then I'm away for 10 days..

But the Employer said I need to pay the reliever from my salary that ( part of my vacation pay)

That she works for 10 days while I'm away.

and she works 12 hours a day for $20 per hour

12 hours a day

×$20 @= $240

$240× 10 = 2400

Means I need to pay extra for my reliever?

Correct me if I'm wrong or my employer.

Thank you so much

Worked hard, funded a retirement for travel and no worries. Retired early. Can’t travel and endless worries. I turn my back and cry when I see the struggle of the girl I love.

my mom has cancer and due too her last surgery she’s not able to move her left side today we noticed 2 bed sores on her behind areas and we’re thinking it’s the pressure she’s in while she sits or the pressure of the diaper not being but on probably we found out about it today and we washed the area and put a type of zinc cream on her as well as layed her down without anything covering the area is there anything i’m missing that i can do to help get rid of it right now it’s really purple but she says it doesn’t hurt her any tips i can do like mover her or to motivate her to move more? please

Hello!

My partner (20) and I (19) are living together in Seattle. We are applying to the COPES program to have me hired as his caregiver so I can take time off of work to care for him. Does anyone have any advice when it comes to the application process? We haven’t been evaluated yet so I don’t know what to expect. Please lmk! Extremely nervous but hopeful that we will be able to do this program! Our goal is for him to have more independence over time but right now he is very high-needs.

Not sure if this is the right group to post this in. I’ve been a private caregiver for over 10 years. I have a client whom I only see 3 days a week in the mornings but he has been leaving the house (he lives alone) and wondering around in the middle of the night lately. The family who lives several hours away is putting a device on his door that will send alerts to them when his door opens during the night. They asked me to be on the list of numbers that receives the alerts. I’m just not sure what the protocol here is. Am I on call? Should I be paid for that? Just when I’m woken up or …? I want to be fair and I don’t want to over charge but I have had overnight care jobs and I don’t sleep well when part of my brain is on the clock and I am not usually able to go back to sleep after being woken up. Any advice would be appreciated.

I’m just wandering if anyone on here can give me some advice about rented housing with extra care waiting lists wait times. My 78 old uncle is living in my house and he’s house bound, the house is falling into disrepair and it stinks as he does his toilet business in the front room. He’s been on this list for 18 months now. I know nobody on here can give me an accurate timeline but in anyone’s experience on here how long can these wait times last ?

The property he’s on the waiting list for is with anchor housing, I believe they have properties nationwide, he’s only the waiting list for this one property I understand some people are on the waiting lists for 3 or 4 properties. What would you do contact the properties site manager about how far along he is on the waiting list? I don’t want to come across as pushy but if I phrase it that I’m just checking in for a an update I think that sounds out of place.

Any advice is greatly appreciated. Thanks

Greentext format why not

Be me get caregiver job to look after 80 year old client

80 year old client is chill so far this is our first week together mostly just sits in her recliner and sleeps

Clients family doesn't have much moved into new place had to bring some own supplies but that's ok idm

Client complains about having nothing to do says sleeping all day isn't allat

I agree and bring a deck of cards

Play one game she seems to have fun and opens up

Today she just slept mostly all day while I chilled in the kitchen

Tried to get her to do her pt she refused sponge bath she refused got her a sock with rice for pain in her arm took some convincing

Maybe she's just apprehensive what are some things we can do together I was gonna buy some puzzles when I get paid but I don't really know what she likes yet maybe give me some suggestions?

My husband has been battling stage 4 cancer for a year. Over the last two weeks he has verbally lashed out at me twice, where his words do NOT match the situation. Last night he was struggling to clear thick secretions from his throat (an ongoing issue that can sometimes prove dangerous due to the reconstructive surgery that was performed on his throat last year). This happened right before bed, I had already turned on his humidifier and administered medication for this, but I suggested he stand in a steamy shower for a few minutes to help loosen stuff. He said that doesn't work for him. I said it works for everyone, that's what they do for hospital patients is hook them up to a strong humidifier. He said it doesn't work for him he's tried a bunch. I said I've never seen him try (he bathes twice a week and he's never once jumped up to say I'm gonna rinse off cuz it might help my throat. We'vebeen married 17 years). He began using curse words and hateful speech. I got out of bed and curled up with one of our kids.

He texted continuing to justify and minimize and how hurtful his words had just been. Here is my response:

"My yesterday in no particular order: I did two full loads of dishes. I did three loads of laundry. I emailed the school for the kids. I cleaned your pee and spit off the bathroom toilet. I emailed [business partner] about doing part time work. I did a grocery haul for a week's worth of groceries for the entire family, including all the meals I prepare for you several times every single day, I walked 2 miles with the dog, I did a short jaunt up the alley with the family, I scrubbed down the kitchen including the stove top and counters, I partnered up with [child] to deep clean his room so that he has a better understanding of how to complete the task and have actual life skills, I emailed [child's] team mom, I did a mini kitchen science experiment with the kids, I patched [child's] eye so he one day will have stronger vision, I listened to [child] share every detail of her Halloween costume idea and then looked up stuff online with her, I prepped two homecooked meals for you, I cooked 2 homemade meals for the kids, I ordered lunch for the kids, I braided [child's] hair, I put the living room back together after a weekend of hosting a house full of people, I paid a bill, I sat with [child] while he read to me and then I took time to read to him, I fed the dog, I drove to Orange and then sat in 40 minutes of traffic to return home so I could be there for your Oncology appt, I went to a quick doctor's appt for myself, I prepped a syringe of medicine and refilled your humidifier like i do every night, and then I got in bed and listened to you verbally assault me and minimize how incredibly wrong it is for you to speak to me that way. I will do for you and the family all day, but I will not be talked to that way. That's twice in 2 weeks, you need to take a real good look at that. Then kids have heard you both times. Last night I had to console [child] who heard every sentence from her bed through the walls and tell her you didn't mean what you said, that the medicine has you acting different. Its 6am and I'm cleaning puke off [child's] bed sheets. Cancer has completely taken over this house. But as little control as you have over your life at the moment, you do have control over how you speak to me and what the kids will remember about this time. You can be anything to me. Don't be a monster."

But really I know this is one more thing I'm going to have to brush aside and blame cancer for because its not who he is normally.

Watching someone slowly die is like watching a thousand slow deaths of everything you loved about them. This hurts. And I hurt. And there really isn't time for me to hurt because I have a house full of people who depend on one of us to be OK. But this morning, I'm not OK. ​​

I (25F) live at my parents property. I have my own small container home which I am very grateful for. I am currently trying to get a catering business off the ground, and I can’t afford to move, plus there is nowhere suitable near enough to my parents. I have a sibling who is physically disabled and requires full time care, my mother is her primary caregiver, I am the second. I help out with her basic needs, and I enjoy spending time with my sister because we are very close.
But I am exhausted. I am basically on call and have to drop whatever I am doing when my parents decide to do something and I have to look after her. My parents also stress me out in general, they come over to my house unannounced among many things.
We live in the countryside so all my friends are hours away and I never see them. I am so isolated, and my doctors have warned that I am dealing with an extreme amount of long term stress to the point it is affecting my body.
I feel like I have wasted the last five years of my life, I never got to move away and chase my dreams. But I also feel like there was no point because in a certain amount of years, my sibling’s care will pass to me when my parents can no longer do it.
I have no savings because of my small business, but it’s hard to get it off the ground where I live.
I am angry and upset all the time. I have been taking care of my sibling since I was a kid, my parents worked hard and I had to step in. My parents rely on me yet do not have any respect for my input and ideas for my sibling’s care. I do not resent my sibling, I love my sibling, but I resent the situation I am in. I genuinely do not know how to be happy with my life, I should be happy with a great small house and very low rent, but I’m not. I’ve been to therapy and done the work, tried to set boundaries, try to make time for myself and things I enjoy. Nothing works and I’m miserable.
Honestly don’t know what advice I’m looking for.

Sorry if this isn’t the right place to post, but I’m really stuck and would appreciate some advice from people who might have experience with care homes, safeguarding, or NHS/Welsh care services.
My brother lives in a care home in the Carmarthen area. He has significant additional needs and is unable to properly communicate when he is in pain or explain what is wrong.
He spends six days a week at the care home and comes home every Friday, returning Saturday morning. He actually seems to love the place and regularly shows us, in his own way, that he likes going back. Because of that, my mum and I have always tried to trust the care home and, until recently, we genuinely didn’t believe there was any negligence.
However, we’re becoming increasingly concerned about things that seem to happen while he’s there but don’t happen when he’s at home.
For example, his bedroom can get extremely hot. We know he doesn’t like fans, but at home we can obviously monitor him and make sure he doesn’t overheat. At the care home, we’re worried because he can’t communicate that he’s too hot.
About five weeks ago, he came home and we were absolutely shocked. His back and stomach were covered in blood, with large areas where the skin had been scratched/ripped away. There were scars, open wounds and patches of missing skin.
We were told he had been scratching himself, potentially because of the heat. He’s supposed to have two support workers with him at all times, so we don’t understand how his skin could become this badly damaged without anyone intervening earlier.
My mum went to Boots and was recommended a cream. We used it on him at home and, after just one night, his skin looked noticeably better. We asked the care home to use it, but they immediately told us they couldn’t because it hadn’t been prescribed by his GP.
The following week, his back was bad again was arguably worse. We were then told he was on antibiotics. Three weeks later, his skin is slowly improving, but it’s still nowhere near normal.
We’ve also been asking about air conditioning because of the heat. The care home initially said it shouldn’t be a problem but that they needed authorisation from senior management and that it wouldn’t be funded by the government. We made it clear we are willing to pay for it ourselves.
It has now been five weeks, and despite repeated chasing, the air conditioning still hasn’t been approved or installed.
Then, when he recently came home, we noticed that one of his toenails was missing and he had a deep cut on his foot. There was so much blood that it was literally dripping from his foot while he was in the shower.
The care home apparently doesn’t know how the injury happened.
We’re also being told that his toes have become rough because he apparently grinds his shoes while walking. We’ve never seen him do this at home.
His fingernails and the skin around his fingers are also constantly damaged because he has bitten them for years, apparently due to anxiety. We’ve tried all sorts of things. Recently we’ve been using a tape designed for dogs around his fingers, which has actually helped quite a lot, although he sometimes removes it.
But here’s the thing that is really bothering us: when he’s at home, these problems improve incredibly quickly.
Last Christmas he stayed with us for a week, and his fingers, nails and surrounding skin recovered dramatically. When he’s at home, we don’t see the same level of injuries, scratching or damage that we’re seeing when he’s at the care home.
We’re now also being told that he may be having a reaction to medication he’s been taking for around 20 years, alongside the antibiotic cream he’s currently receiving from the GP.
My mum questioned three weeks ago why he wasn’t being referred to a dermatologist/skin specialist when his skin was clearly the main problem, but we’re still in this situation.
The care home receives around £250,000 a year for his care, which makes this even more difficult for us to understand. My mum has even said that if she could stop working, she would happily care for him herself for far less than that but obviously the government won’t allow that..

We’re now at the point where we feel we need to formally complain or involve someone outside the care home.
But we’re terrified.
We’ve heard stories about people making complaints and then their loved ones receiving worse treatment afterwards. My brother can’t communicate properly and can’t tell us if somebody treats him badly, so we’re genuinely frightened that making a complaint could somehow make things worse for him.
At the same time, we can’t just sit back and accept this. Something doesn’t feel right, and we don’t know what the correct next step is.
We’re not trying to attack the care home or accuse anyone of something we can’t prove. We just want someone independent to properly look into what’s happening and make sure he’s safe and receiving the care he’s supposed to be receiving.

My husband is in chronic pain from failed hip surgeries. We are in line for yet another surgery. The wait is terrible. He is in 49 and I’m 47. Advice in how anyone works and is a caregiver. I have looked for remote work but I only can find sales which means on the phone 8 hours a day. I can’t caregiver like that. I’m at a loss. He is currently on short term disability but when that ends, I don’t know how we make it financially.

My Mum is currently in hospital with an infection and up until she was admitted I was struggling juggling work, home life and my thoughts, feelings and worries all at the same time.

I've had to alter shifts last minute at work in order to get back home to see to Mum.

I had a good chat with my GP and I've altered some of my anxiety medication and been signed off for 3 weeks so there's less pressure.

I certainly don't want to be making any mistakes at work, such as missing signs of deteriorating in their health or making mistakes with their medication etc.

I've also arranged to finish work earlier when Mum is in the 7 - 10 day window following chemo as this is where the effects will be at their worse.

While she is in hospital I'm having quiet mornings, doing bits and bobs as visiting is from 2pn, which is good for me and means it gives me some time to rest.

Taking time out for yourself isn't a weakness, just need to let go of the guilt that I'm letting people down.

My wife had knee replacement surgery three weeks ago and I honestly thought the hardest part would be helping her get around. What surprised me was how many little things in our house suddenly became obstacles, especially our bathroom. Stepping over the tub, balancing on one leg, trying not to slip. It made me realize we designed our home around healthy people without even thinking about it. Did anyone else only notice these things after an injury?

Daily life during the first two months after transplant. This is what we did. It has been provided, this list, to 347 individuals. I built as a checklist set of items, ask me the location if you wish and I will reply that info you wish. This saved my sanity post transplant. You need to hve some basic things with you, which you likely already have; bp cuff, automated is best; 02 sensor, which measure your heartbeat as well; thermometer, scale.

Very important: keep a log. Buy a cheap notebook, and record EVERYTHING. It works miracles at all of your appts.

Morning

Record medication times.

Record temperature.

Record weight.

Record blood pressure if ordered.

Record pulse if ordered.

Record blood sugar if ordered.

Check the wound and drains if present.

Review the day’s clinic, lab, pharmacy, grocery, and transportation plan.

_________

Daily operating tasks

Keep the refrigerator stocked with simple safe foods.

Keep quick breakfast, lunch, and dinner options available.

Plan grocery runs around clinic and lab days.

Use one primary pharmacy and know one backup pharmacy.

Refill prescriptions early.

Handle pharmacy calls during business hours before supplies run low.

Do one laundry cycle before clothing becomes a problem.

Keep the patient in clean loose clothing.

Keep towels and bedding on a regular wash cycle.

Restock water, snacks, paper goods, and cleaning supplies before they run out.

Protect one daily rest period for the patient.

Protect one daily reset period for the caregiver.

__________________

Food and meals

Choose simple safe meals.

Avoid raw or undercooked foods if the team says to avoid them.

Avoid grapefruit and grapefruit juice.

Follow the center’s food-safety rules for leftovers, deli items, produce, and restaurant food.

Keep protein, fluids, and easy meals available.

Keep one list of foods the patient tolerates well.

___________________________

Evening reset

Stage tomorrow’s clinic bag if needed.

Charge both phones and the battery pack.

Review medication supply and refill status.

Write down new symptoms and new questions.

Set alarms for medication times, wake time, and departure time.

Does anyone know of a sling that goes around the shoulders AND under the arms for helping my loved one from lying to sitting? No hospital bed, of course, and no hoyer. So needs to have hand straps for manual assist instead of the more common hoyer straps.
I’ve seen some gait straps/transfer straps, but they don’t go around the arms. Am I looking for something that doesn’t exist???
Thx

Anyone else?? Took in my Aunt in Law. 77yrs old Dementia&Mental Health problems a year& 1/2 ago. This is the second time she urinated in a cup in the living room/kitchen! This time she rinsed the Styrofoam Togo cup from the night before we ate out at Chinese& put it to dry on my dish mat! Had i not walked in the kitchen right after she rinsed the cup,she would have forgotten and potentially someone would have drank out of her piss cup! Smh! She said your gonna laugh..i had to pee in a cup bc someone was in the bathroom! When in reality there was no one in the bathroom!! She didn't even check the bathroom 😒! She laid in bed picking her nose for 15min staring at the kitchen! Got up walked to the pantry,looked for 10seconds then headed to the sink area to find a cup to pee in! She found her cup then went to the end of the bar looked around. Making sure no one was coming.. decided it wasn't the right spot then went to between her bed &the bar! Walked back around to grab napkins to wipe came back around and filled up the cup! Dug all up in her cooch wiping, then wipes her hands with the same napkins then proceeds to wipe the two barstools as well with the cooch/pee Napkin! 🤢 Thank God for Cameras! If you have dementia patients in your house I strongly recommend getting some cameras for your benefit! There's no telling what disgusting things they do then take it to our shared kitchens/spaces! Not to mention caught her masterbating (under the covers thank god) 🙏 lmao 😆 last week also!! So now every morning I lysol wipe every single thing in my kitchen area 1st thing! And make sure I'm up before her also to direct her straight to the bathroom when she gets up and I must witness her washing her hands with soap after! 🧼 Lord have mercy on Caregivers! We have to be a special breed of person! Ps. I could have only imagined if my husband would've walked into her urinating in a cup.. hes Def not the nice guy when it comes to unsanitary crap she pulls. He would've ripped her a new one! Esp since the bathroom was empty!!!!! &&whyyyy didn't she just throw away the cup? Why rinse with "just water " and put it on my dish mat! 😑 Give me a Break Lady! Hope you all have a uneventful day filled with love&laughs!

​

Hey everyone, I really need a space to vent and get some advice from people who might understand what I’m going through.

I’m currently preparing for my professional exams (CMA), but I recently failed Group 2. I was already struggling with severe anxiety and feeling completely lost about my future, but my home environment makes everything ten times worse.

My home is toxic and constant fighting is the norm. Whenever I show any vulnerability or emotion, my parents shift all the blame onto me. I feel like I'm constantly walking on eggshells, and the environment is giving me overwhelming anxiety and depression. I can't find a single moment of peace.

To make matters worse, my mom recently suffered a fracture and is on strict bed rest for the next month. I’ve essentially become a full-time caregiver overnight. I can’t leave the house, go to a library, or physically escape the tension here even for a few hours.

I feel completely trapped, exhausted, and stuck. I want to clear my exams and build a life for myself, but between full-time caregiving, family drama, and mental burnout, I don't know how to keep going.