r/CaregiverSupport Jul 05 '26

Weekly Roll Call -Caregivers, Please Check In!

6 Upvotes

Hi fellow caregivers! This thread is our weekly landing spot, a place to get to know you. A warm welcome to new members and a note of gratitude to our current community.

We see you all and appreciate you.


r/CaregiverSupport 2d ago

[Weekly Megathread] PPL Help, Questions and Advice

2 Upvotes

Welcome to this week's PPL megathread. This is the place for any/all related questions and advice on PPL related issues. We are still staying committed to continuing posting new threads for as long as you need it.


r/CaregiverSupport 5h ago

I am bowing out

167 Upvotes

This has been one of the worst days of my life. I am 40f and my mom is 66. She has been living with my family for the past 4 years. We bought this house because it fit her needs, updated the bathroom to be easy for her, bought a new vehicle that was easier for her to get in and out of. She has steadily declined, falls often, trouble toileting, etc. I have cooked all her meals, taken her to all her appointments, laundry, cleaning, put my family on the back burner. For what? To find out she and my sister have been talking about me behind my back complaining of how I care for her. My sister has always been her favorite but lives in another state. They see each other a few times a year but talk a few times a week. My sister has no clue what it is like and my mom has been giving her half truths. I lost it. I am burned out and deeply sad. I am being painted as a villain and I am just done. My sister can take care of her from now on. This is not worth it.


r/CaregiverSupport 2h ago

As of this moment, wife is missing

17 Upvotes

So thanks to everyone for your support. You will NOT believe what just happened. I went to the hospital to visit my wife, who had been there 2.5 weeks since she was taken from the nursing home due to malnutrition, dehydration, pneumonia, and most importantly trouble swallowing and speaking. She had a feeding tube put into her stomach last week.

Her sister and sister-in-law had gotten her to sign over healthcare proxy and had instructed the hospital not to share information with me. They stopped answering my calls and texts and threatened to sue me for asking the hospital for information on my wife's condition or intended discharge. When one of the social workers at the hospital gave me some information, SIL and SIL2 threatened to sue me for asking and to sue the hospital for telling me just that it's standard procedure to discharge patients back to their old nursing homes. But SIL doesn't like the old nursing home and blamed them for wife's condition. They also blamed me for her strokes.

When I went to visit my wife at 2 pm, she was not in her hospital bed, but the attending nurse told me she was away having an endoscopy. So I left and came back at 530 pm. When I got back at 530 pm, there was someone else in the room. I asked the nurse and she told me that my wife had been discharged, but she didn't know to where. I called the prior nursing home and they said that she is not there.

So, as of right now, I don't know where my wife is. Her SIL, the one who threatens lawsuits and says I can only find out about my wife's condition through insurance claims, has put her somewhere else and I have no idea where.

I can only assume that, if they were going to drop her off at the house, they would have already done so. So she must be in a nursing facility, but which one is anyone's guess. If they don't choose to tell me where my wife is, I will not know until she shows up on the doorstep.


r/CaregiverSupport 9h ago

After becoming a Care Giver, I understand the people who left

67 Upvotes

I am 40 years old and became the care giver for my husband after he went into septic shock in late 2022 and came out with a completely and utterly destroyed right foot and nerve damage, so he is in a wheelchair now.

The thing is, while I love my husband and he does his best to do the things he can, we have been doing this for three years now and it is taking its toll on me. Since June I have noticed that I started to suffer from depression and massive anxiety, so I searched for a therapist. I hopefully can start therapy soon, I have a first appointment for assessment.

Now I wanted to search for an apartment that is barrier free so we can FINALLY get outside again and was searching for help only to be bluntly told "We don't do this anymore, you are on your own."

AGAIN!

We ALWAYS have been kept on our own. My husband comes home from the hospital? Here is medication for three days and we don't care that all doctors are closed because it is Christmas, deal with it.

Asking my land lord for a stair lift? Oh, that has to go through the wall? Yeah, no, I won't do that. How can your stupid WALL be more important than a living person who needs to get to appointments?

Sickness transport? Your husband is too heavy, we won't transport him anymore.

Finally getting a stair climber and then the one who can operate it, my Father in Law, needs surgery himself and can't anymore.

There is not small part of me that just wants to GO! Go into the next train, the next plane and leave and never come back.

Realistically, I am not doing that. I am staying with him. I hope that I can get my mental health back to not feeling like an anxious mess all the time and not randomly bursting out in tears at the teeniest tiniest setback.

But right now, I just want to hear a few nice words. And maybe some of you can relate to my desire of just wanting to leave. I always have the feeling that nobody, absolutely NOBODY ever asks the care taker how they feel.


r/CaregiverSupport 5h ago

My dad decided to die today

15 Upvotes

At the end of March in 2024, he got sick. He had a strep infection in his eye, hand, and who knows where else. It turned septic. We found out he was only born with one kidney and it was only functioning at ~15%. His cornea completely collapsed from the infection so he wouldn’t see out of that eye ever again (the other one is heavily cataracted). He was in the hospital for about a month and “skilled nursing” for another month after that.

I left my job at starbucks to take him to dialysis and appointments and do laundry and cook and clean and all that housekeepy stuff, because my mom and brother both had “real” adult jobs in the fields they wanted and a multi-year gap could be devastating for their career trajectories. I’ve dropped out of college twice and always been a cashier/customer service type of worker, so it just made sense. In august 2024 we transitioned from in-center hemodialysis to at-home peritoneal dialysis. I still stayed out of the workforce because he needed me to administer the treatment every single night and the PD nurse scared us with the idea of more infections.

It’s been two years since we started and he hasn’t really enjoyed any of it. He doesn’t sleep well attached to the machine, he can’t eat for the first few hours of any day, he has to take dozens of medications to offset the PD effect on his diabetes and then side effects of those medications, and balancing nutrition with what the PD solutions put in and take out. A couple months ago he failed his quarterly adequacy test and they told him he needed 11 hours per night of treatment instead of 9 and he almost quit then. Our last two appointments he’s failed adequacy again and they want to add another cycle. He simply texted me and my mom and the pd nurse and his nephrologist, “I’m done.”

I wanted to give him time to think about what that meant, but while I was in the shower he talked to my mom about cremation and spreading his ashes at the church where his mom is buried. They talked about keeping it secret from my brother because he’s getting married in 3 weeks and they don’t want to put more on his plate, and not telling his brothers or sister because they might try to talk him out of it or take away attention from the wedding.

Maybe it’s selfish but all I’ve been able to ask myself is why I threw away two years of my life just for him to quit. I thought we were working towards something; he was doing a great job losing weight so he could get on the transplant list. It feels like my friends and former coworkers have all pretty much moved or graduated or found partners and generally started their lives. Meanwhile all I’ve done is learn through process of elimination that I don’t want to be a caregiver.

I’m happy that he feels peaceful about his decision but I have no idea how or when it’s going to hit me, or what I’m going to do with myself. I keep hearing how bad the job market is and I feel stupid for leaving my job (even though it sounds like Starbucks’ CEO for the past couple years hasn’t been very employee-friendly). But whatever. Just ranting, I guess. I want to enjoy my life before my body stops working, on the likelihood I’m biologically anything like my dad. I just don’t remember what that even means. He’s been on-and-off sick since I was in middle school, so I got parentified into taking care of my brother then too. I’m glad he turned out pretty much okay.


r/CaregiverSupport 1d ago

If one more person tells me I need to take time for myself without offering help I’m going to explode

200 Upvotes

There’s this weird assumption that i’ve taken on being my mother’s 24/7 caregiver by choice??? News flash people there is no one else! She has no savings and doesn’t qualify for medical. Maybe instead of the lame half-hearted comments they could offer to watch her for 4 hours so I could actually take time for myself?? She has 9 siblings and how many of them do you think have offered to watch her? Zero!

People with money and resources outsource caregiving for a reason.

Anyone else not actually want to talk to others about how hard this is because it’s just empty gestures in return??


r/CaregiverSupport 6h ago

Manifesting my life

5 Upvotes

Hi everyone,

You know how people talk about manifesting the life they want? I’ve been trying that too. Mostly because it feels hopeful and gives me a little relief—picturing a different life that doesn’t involve caregiving 24/7.

I’ve been taking care of my husband, who is a quadriplegic, for 18 years. The last three years he’s been completely bed-bound. I honestly can’t see him ever getting back into his chair. He has heart problems, lung issues, a pressure sore that won’t heal, blood pressure problems, total muscle loss, no trunk control… the list goes on. He needs help with absolutely everything—scratching his ears, head, or neck, drinking, eating, opening mail, changing the TV channel, taking medicine, making or receiving phone calls, sometimes even reading because he can’t see small print, turning fans on and off. It feels like he needs something every five minutes.

So I’ve been trying to picture what my life could look like beyond this. The hard part is that I’m not manifesting a life where I keep taking care of him. And that makes me wonder—does that mean I’m essentially manifesting a life without him? He’s the love of my life. No one will ever come close to what we have or how we feel about each other.

But I’m so tired. I’m 55, he’s 58. He’s been a quad since he was 15. I think the window for any real rehabilitation has closed. He goes through so much—constant discomfort, pain, illness. It’s just not a quality of life for either of us.

So where does that leave the whole idea of manifesting and dreaming about another life? How am I supposed to feel okay about it when it feels like it means a life without him? I don’t know what to think anymore.


r/CaregiverSupport 4h ago

Still can't find my dad; Stonewalled everywhere and not sure where to go from here

3 Upvotes

I made a post about a week+ ago about my dad's phone number no longer being his own. I called the department of aging and the agent accidentally gave me his last known address. It took nearly a week to get in contact with the police department (non-emergency) but they did a welfare check to find that he didn't live at that address.

I called Adult Protective Services because the hospital he was at years ago made a case against me because I wouldn't bring him home to caregive (I talked about that here). The woman I talked to was less helpful than the call center guy. She wouldn't bother looking up his case and said maybe it'd be best to make a missing person's report.

The thing is: He was in adult foster care, APS was visiting his caregiver because of the report and because he's a vulnerable adult. Yet now I can't get any help. The police were the most helpful. I can't get any information from the department of aging because it's HIPAA protected.

I don't know where to go from here. I'm worried that he may not even still be alive but I don't know why I wouldn't have been contacted as I am on his paperwork. It's frustrating and depressing that this is the state of elder care (and childcare because I know it's the same there too).


r/CaregiverSupport 2h ago

How do you keep track of everything when a parent has multiple doctors?

2 Upvotes

For anyone helping manage a parent's healthcare, what system do you use to keep everything straight?

I've been helping with my dad's care and he has diabetes and sees multiple specialists. I've realized how much information ends up living with the family rather than in one place.

I'll remember that one doctor said X, someone else recommended Y, a medication changed because of Z, there's a test we need to follow up on, etc.

Then you get to the next appointment and you're trying to reconstruct everything.

Do you use a notebook, Notes app, spreadsheet, patient portal, binder, something else?

Would love to hear what's actually worked for people.


r/CaregiverSupport 1d ago

My mom passed today, thank you all for all of your support throughout the last couple of years.

97 Upvotes

My mom passed a few hours ago. Her body was so tired. I just hope she’s free of pain and with my dad again. Thank you again for all of your suggestions and support over the past 2 years.


r/CaregiverSupport 3h ago

Ideas for setting boundaries...

2 Upvotes

This is super long so if you make it through it, thank you. Part of it is just venting. But I am absolutely looking for advice on boundaries.

I've been talking care of my 89 year old roommate because there's no one else. I get cheap rent for it, but that's it.

My charge, while nearly 90 is mentally intact. He balances his checkbooks, pays his bills, manages his meds etc etc. I did recently start double checking his meds because he got some new ones.

The problem is boundaries. I'm treated like a servant and what I say is either totally ignored or disrespected. I'll give some examples...

I've told him that once I'm up, I'm up... So please do not wake me up for unnecessary things. (I'm disabled with MS, severe back issues, and have a sleep disorder.) I've been averaging 5 hours of sleep a night because of all this and my body needs 9!

I DO NOT MIND being woken up for necessary things ONE BIT. That's my responsibility. I do mind being woken up for things that can absolutely wait.

Last night he woke me up at 3am for heartburn. I'd only fallen asleep an hour before so I was groggy. I got up, found some heartburn medicine, and treated him. I did it with a smile despite being exhausted. Oh and the second I walked in the room he yells "what did you put in that chicken,I have heartburn!" I told him I didn't put anything different in the chicken and it was probably his antibiotics causing it. Made sure he didn't need anything else. Then he says "go back to sleep" and I said "I'm really going to try." So I was predictably awake for another 2 hours. Then this morning he woke me up an hour early not because he NEEDED anything, but because he GOT AN EMAIL. I told him point blank "T, I was up with you half the night then you wake me up an hour early for an email? That could have absolutely waited an hour." Obviously there was no going back to sleep.

So then right about normal wake up time I needed to use the bathroom. So I went in and saw that he was busy doing his checkbook and I said "I've gotta run to the bathroom real fast then I'll bring in your breakfast" he says "ok, I'd like oatmeal." Sure. I never take more than 5 or 6 minutes, so it's not like it would take long. So I get into the bathroom and less than 4 minutes later he's paging me. So I finish up and rush in there he's and like "where's my breakfast?" And I replied "T, remember I said I needed to use the bathroom real quick?" And he claims he forgot. His visually disabled son was here and heard this exchange, so it makes me feel like I'm on trial or something. But if I say nothing I'm just allowing myself to be used unfairly. I doubt he forgot because every time he does this he claims he forgot but he doesn't forget 95% of anything else. This tells me that he doesn't care about my normal needs as a human and/or he's just not listening when I speak to him. Which I know is true because he frequently interrupts me to tell me up do something I'm literally explaining how I'll do. Like "I just need to go wash my hands real fast then I'll be back to do your eye drops" and he'll interrupt to either tell me to do the drops or tell me to move his walker an inch to the right!

Every time we have a doctor's appointment early I very clearly make a plan with him about what time we will get up, what time we will load up, leave etc. I have never gotten him anywhere late. Never. Every single time he wakes me up an hour earlier than planned and claims he "forgot" despite the text and note I left says "wake up at 7am" or whatever. I know what he's doing, he wants to get to the appointment even earlier than planned so he's being manipulative. It's happened at lot. Leaving early is pointless because we just get stuck in rush hour traffic, anyway. He doesn't care. But if we get stuck in traffic that's somehow my fault.

Yesterday I remade his bed while he rushed me the whole time right after I woke up. He rushed says "I want to lay back down!" So I finished it in record time, with the pillows lined up and faced exactly right and the sheet and blanket aligned with his dresser, just like he requested. Proceeds to stay up another 2 hours. I didn't need to rush. I totally could have let my medication kick in before doing something that hurts me, but I rushed because he said he wanted to get back in bed right away. Then when he does get in bed he yells at me that the sheets are two inches too far down. Doesn't calmly say "hey, could you please pull the sheets up another two inches?" No, he yells at me about it. So I calmly remind him that just 2 days prior he had asked that they be aligned with his dresser and that's exactly where they were and that I didn't mind moving them but I did mind being yelled at about it.

Power outage last week. Up ALL NIGHT taking care of his oxygen needs while he slept. He proceeds to berate me at 5:45 am because i didn't SET HIS CLOCK before doing anything else... you know like addressing his oxygen needs first. Then later that morning wakes me up an hour early, yet again for something unnecessary. Then when I come in half asleep he says "what's your problem?" I again told him "T, I was up all night taking care of you, I had really hoped to sleep until the normal wake up time. I only got 90 minutes of broken sleep" I reminded him that if I don't sleep I can't safely care for him or drive him places. Oh and that whole night I was in a massive pain flare so I had been in tears from that. So then I tell him I need to go to urgent care and I'll arrange someone to come sit with him, but I can barely breathe I'm in so much pain. He replied "I hope you don't have to go" not because he cared that I was not doing well.... But because I would be gone a couple of hours and he can't take advantage of the helper!

Last example, though I have a ton more. One night he woke me up at 4:30am and when I walked in and said "yes?" He yells at me that I lost his grabby claw. Now I know I didn't touch the thing but I start looking everywhere for it and he demands I turn on all the lights. Then he yells at me again that it's in the bathroom WHERE HE LEFT IT. Totally accessible , not on the floor or anything. He knew exactly where it was and despite being up and peeing (bedside urinal) he didn't want to walk 8 feet to get his grabby claw so he decided that waking me up at 4:30 in the morning was acceptable. He didn't even need the damn thing...I watched and it didn't move for another 2 days after that!

Oh and just last night he paged me 9 times during dinner. NINE! In an hour! Only one of those pages was actually something that needed to be done right then. And his son was sitting 3 feet away from him! The son is no help when he's here, he only really does a bit of yard work. Yesterday I was busy so he (the son) served him the lunch that I had already prepared (I never got a page that time) then acted like I had done something wrong even after I thanked him profusely for getting the meal out of the microwave and serving it.

I know I said I was done, but he actually expected me and my boyfriend to pay for his fuel to take his car in for some work he wanted (having a wheelchair lift moved from the old car to the new.) 2 cars ((A V6 and a V8, so like $90 in gas total) being driven an hour away which my boyfriend had to take a day off work for and T expected us to foot the bill, for him. We pay for every drop of our own fuel if we use one of his/our vehicles. We cannot afford to pay his way, too. It took us 7 HOURS and he not only didn't offer to maybe get us lunch, but he expected us to pay for his fuel!

I'm being walked all over and taken advantage of. 12-15 hours a day 7 days a week and a LOT of the stuff is unnecessary. His daughter literally walked out of his life for exactly this behavior and now there's only the son who is literally no help both because he's disabled and because he expects me to wait on him too when he's here! When he's here I feel immense pressure, like my every move is being judged and I've caught him talking smack about me twice now. Once because dinner was 15 minutes late (chicken wasn't quite done) and once because an inch of water evaporated from the bird bath overnight so I "must not have filled it." That last one was this morning.

I'm at my wits end but I have a car loan with this elderly man and I live here. I'm disabled so I can't afford to just leave or I would at this point. Unlike his prior caregivers I don't have a drug or alcohol problem and I don't steal from him. I am literally paying an alternate out of my own pocket just to have a couple days off here and there! He could afford to pay it but he refuses, just like he refuses to buy a $60 lightweight wheelchair that's safe for me to lift. He knew going into this that I'm disabled so it's not like I sprung it on him. Before me he used his walker which I CAN lift, but when I took over he had COVID and after that he now needs a wheelchair for his own appointments. It weights like 47lbs. I get guilt tripped for having medical appointments of my own, as well.

There's so much more but this post is a novel already. I'm sorry about that. If you made it through it, THANK YOU for listening. If you have any advice for setting boundaries with an elderly charge, I'm all ears because nothing I have tried so far has helped. Every day that passes he gets more and more disrespectful. It's always worse when the son is here, too.


r/CaregiverSupport 28m ago

i became a caregiver but all the men i take care of are pervs and the wives think i want their husbands which is not true i am a lesbian...

Upvotes

r/CaregiverSupport 4h ago

Worried about a Client

2 Upvotes

I have recently become the caregiver of an elderly woman with Parkinson’s and dementia. She has just moved into an apartment with two family members that are only home in the morning and evening. I am only assigned to 4 hours of care. She can walk well enough and knows how to unlock doors so her being alone for most of the day is concerning. She cannot, absolutely cannot, care for herself on her own. Without giving too much information, her care needs are much higher than what she is being given, and some things that have happened are alarming to me. I know her family have just found out about her circumstances and taken her under their care but her being left home alone is terrifying to me. I have informed my employer and they have told me essentially to wait and see. I guess I just want to know if anyone else has had a similar client? I had the thought to call APS recently but I can tell she is loved and cared for when someone is around. It’s the long hours that she’s alone that I worry about. Maybe I’m just venting. I feel terrible for her and her family for their situation. She is very progressed in her diseases. Thank you for at least reading my post. Any advice would be recommended.


r/CaregiverSupport 1d ago

I’m so sick of people acting like I haven’t been doing anything for the past years now that my family members have passed

60 Upvotes

For over 10 years I’ve taken care of my grandparents full time, as soon as the first one passed the other immediately had their health decline and needed 24/7 caregiving.

They recently passed and since then I’ve had a few family members make comments like “you know you’ll actually have to get a job and work, right?!” or “you’re lucky, I had to work for my house and you’re just getting theirs handed to you”

…Excuse me??? What do you think I’ve been doing this entire time??? I’ve been taking care of them this entire time. Cleaning them up every time they had an accident or once it got to the point they physically could no longer make it to the bathroom. Seeing their private parts wayyyy more than the average person ever sees of their grandparents. Cooking for them all day, doing every task for them.

What’s the most frustrating part is that some of these are coming from family members who visited a lot and saw exactly what was going on… my grandparents would have 100% had to go in a nursing home if I didn’t stay home with them so wtf do you mean I just got anything handed to me???


r/CaregiverSupport 7h ago

Venting out: Asked my brother for help taking care of mum with psychosis and things went bad.

3 Upvotes

After much hesitation, asked my brother for help with taking care of mum with psychosis who is undergoing treatment.

After much conversation(arguments) he agreed to help, brought his wife and 2 toddlers with him and he left to another city for work.

Now I am having to baby sit two toddlers on top taking care of mum.

I needed few mins of peace to gain my sanity from the chronic stress, what I got is additional stress.


r/CaregiverSupport 3h ago

My parents and I've been the primary garegivers for my grandparents for 7 years now. I hate how much it feels like weve been held hostage.

1 Upvotes

Hello. The title is a little long (sorry) because I'm not even sure what this is meant to be, as I found this subreddit by accident. I think i just need to vent, and the intro to the subreddit says thats ok here, so thank you for listening (reading?)

TW: light mention of excrements

So, my parents, F&M60, and I, F20, have been caring for my grandparents, F&M94, since i was 14. It started with them both getting injured at the same time, and when they first came to our home, it was only meant to last until they were better. They never really left.

For the first few years it was fine, but slowly and surely, things got worse. Gran's memory deteriorated fairly quickly to the point where nowadays talking to her is like replaying the same tape over and over. She's not fully incontinent, yet, but its getting closer to that everyday and I hate how much feces and pee ive had to clean this past year. She's also become extremely fussy with pretty much everything - food, clothes, showers, meds, you name it. I hate every time i think this comparison, but she's essentially become a very bratty child. Ive had spit food in my plate, soiled clothes on me, cold water on my face, the whole shebang. And she never remembers any of it 30 seconds later. Its exhausting spending every day with her. Which I do, fairly often, because both of my parents still work - they cant stop, really - and we dont have money to put them in decent Homes.

Gramps is a whole nother issue. He broke his leg this summer, and everything suddenly got 5x worse. The medical bills alone sucked a lot, he's not walking yet and no one seems confident he will again, and the lack of mobility is fcking up the precious routine we had managed to maintain. It takes 2 people to help him in and out of the chair, and hes completely incontinent now. It feels like the smell at home never leaves now despite how much we clean. At this point, it might just be us starting to lose it though.

And ever since coming back from the hospital, hes also become much more rude. Before, he at least knew when to say please and thank you and not yell at us. Now he does that to me and my mom. Of course, he never does it to my dad, which only makes me want to help him less. He was always a bit misoginistic, but its just so much worse now. I hate it, i hate him too sometimes, and the last thing i want to do is mouthfeed him when he yells at me like im his maid and not his grandkid.

My mom still, somehow, tries to shield me however she can. She gives me all the free time she can so I can go out, and always takes the worst of the cleanup from me. Which is why i feel awful that it doesn't work. Every day I wish i wasnt here... My older sister left home a couple years ago so she never has to deal with all of this. She comes by once or twice a month and even when she is here, she never helps out because she doesn't know how anything is done and it just feel more tiring to have to explain. I envy her so much its crazy, but then i feel awful for wanting to run away from my parents, especially when theyre struggling so much.

I finished college this summer but dont know what i want to do with life yet. Looking for a job so I can start saving, but the idea of actually moving sounds ridiculous even inside my own head. Sometimes i wish my grandparents would go away how ever it may be just to end this hostage situation. Because thats what it feels like. And then I hate myself for it because they're my family and my Gran literally half-raised me until i was 12. I feel alone, in a state of permanent grief and like im wasting the beggining of my life here. Im constantly waiting for my mom's burnout to come in full-swing, or for my dad to fully give up.

Im not in the USA so a lot of the practical advice here doesnt work for me, but I appreciate any tip or advice you might think from reading this. Above all, thank you so so much if you read this far. I think just taking the time to write helped me recenter a bit. Apologies for the wall of depressing text, but thank you for letting me post it. The best possible day to everyone <3


r/CaregiverSupport 9h ago

Mom says she doesn't want to go to the hospital anymore. I support her, but what are my legal options?

3 Upvotes

Basically mom has been dealing with terrible infections since April. She's been hospitalized 6 times, in two different skilled rehab facilities etc.

Health care sucks in Oklahoma. So it's just rinse repeat. IV abx and then she'll be sick again in a week or two. And I don't usually see any signs until she becomes Basically unresponsive.

I understand that she's tired of going to the hospital to not be truly taken care of, but what are my options as a caregiver to support her? If she's unresponsive, she can't make that decision, and I would be neglectful if I just Basically let her lay there and die of sepsis.

What do I do? Any guidance is appreciated


r/CaregiverSupport 10h ago

Going to be taking care of my husband soon... Advice for someone new to this?

3 Upvotes

Hi all,

My husband is currently in a medically induced coma in the ICU. He's had strokes and with any luck (pleaaaaaase), he'll be coming home to me and I will have to care for him throughout his recovery.

Can I get some advice on how to best handle this? Really anything, from tips and tricks you've picked up to how to stay sane.... Anything will help.


r/CaregiverSupport 10h ago

Seeking advice to get medical supplies corrected

2 Upvotes

I (39F) am a caregiver for my fiancée (43M). He is considered complex care due to a long list of issues but mainly seeking advice for tracheostomy supplies. Recently he was hospitalized 3 months due to pneumonia, due to this he had to have a trach put in and we were told its only temporary. He is doing better than ever now and has been home for about 2 weeks now.

The last 4 weeks have been hell with trying to get the proper supplies ordered for him. While he was still at the LTAC and we were preparing to transition to home, getting the correct supplies ordered and delivered has been a full time job. We went over all of the items we currently have that would not need to be ordered and everything we need for his new neck-ware. Supplies slowly started to come in but most of them were not for a trach. I notified the case manager and pulmonology team so they were aware of the issues and we kept hearing "we will get it sorted".

Well we finally get to come home and this is where the true nightmare has reached its peak. We are running out of supplies within just a few days of being home. Mainly suctioning catheters. We were told to suction as often as needed but to try and cough out the mucus, if wearing his speaking valve. Well his speaking valve has a leak in it (we are waiting on a new one to be delivered), so it is difficult for him to use it. I have called his medical supplier to get some more supplies and they notified me that his insurance only approved him to have 1 SINGLE ITEM OF EVERYTHING ORDERED A MONTH. 1 non-reusable suction catheter, 1 Younker, 1 tracheostomy gauze pad, 1 necktie, 1 cleaning kit, etc. I have called the insurance to get an updated authorization but no one has been able to help me or call me back. Just a lot of messages within the portal of people saying I need to be contacted and the medical supplier needs updated as we are running low to the point we have to consider going to the ER just so he can get suctioning when needed until the supplies are sorted out. I have been on the phone, emailing and sending all the authorizations back and forth between the supplier and insurance.

I am still in contact with the LTAC case manager and she has provided a bag of suction catheters once but when we asked for more to get through until this gets fixed, we were given urinary catheters instead. Side rant, the facility is 45mins away and thankfully my mother has been gracious enough to go fetch the supplies since I cannot leave the house. We have looked into purchasing suction catheters from a medical supplier as a back up but really cannot spare the funds for them or get denied due to not being a medical facility.

Does anyone have any advice on how to get the insurance and supplier to communicate together and get this sorted out ASAP?! I know we shouldn't reuse catheters but we are considering it to avoid getting medical transport and putting him back in the hospital just for this nonsense. We may have enough supplies for 1 or 2 days if we are very conservative with them. I have been working on getting this corrected for over a week and its gotten nowhere closer to getting fixed.


r/CaregiverSupport 20h ago

I'm worried for the sanity of my aunt who caregives for my grandma

9 Upvotes

My aunt has dedicated her last 5 years to her mother.

My grandma has dementia, and a lot of other diseases. This makes her extremely sad, angry, hopeless and every other depressing emotion..

Every day, my aunt takes care of her, and my grandma always wants her home 24/7, or else she starts crying, and calling her phone crying. This means she literally cannot have a life outside work and family. My grandma is always pittying herself, always oh my lord my pain is eternal, similar to the lines of that, and when you hear that every day all the time for 5 years it does something. Always complains always something not good enough it's like she's doing it on purpose to hate!! and I know this is not her fault but now she's forgetting names and family and first person who she forgot? My aunt.

She thinks my aunt is a paid caretaker? I'm unsure..

Lately, my aunt has been going insane as all she does is go to work, come home and hear her crying and complain all day, and lately she started cracking under the pressure.. my aunt started crying and even said during one of these bursts she's gonna hang herself..

Please I just wanna help my aunt, ive been the most of her emotional support because her 2 siblings sometimes take care of my grandma, but never discuss actual problems in the family. I can't take care of my grandma cause I'm still studying, I just wanna do something to help my aunt if anyone knows what do I do.


r/CaregiverSupport 21h ago

Dad is in home hospice and has 24/7 care

9 Upvotes

Dad is 95 and has been with in home hospice for 3 yrs. He uses wheelchair and a walker for short distance. Lately he seems more depressed. He is home with 24/7 caregivers. His mind is dang good for his age. As expected he takes long naps during day and sometimes does sleep all nite. But when he wakes he never gets up, he can’t. And most of time he doesn’t call caregiver. She goes to bed when he does. They have started saying he needs something to sleep. But also that he should have anti depression med. Now his hospice advocate wants to meet with me and discuss that the dr has recommended Ativan. The hospice doctor! Who has never seen dad in the 3 years. A nite caregiver is paid $320 per nite and she is complaining!! She should be reading him a bedtime story all nite. I don’t feel good about him taking any mind altering drugs. May make him less stable, even more agitated. I understand he is depressed but he has it made for a 95 year old. Living in his own home and his every need except companionship. Any thought on giving Ativan to elderly. He also taking 12 mg of Requip and 1200mg of gabapentin. I don’t him unhappy and depressed. My sis says he not happy and would not want to live like this. So why don’t we just shoot him. Any one have advice


r/CaregiverSupport 1d ago

End of Life Asphole Visitor

70 Upvotes

I have a bunch of visitors for my wife who is on home hospice and now comatose. Most of her family are great and supportive; however one brother-in-law is annoying as he'll. I am attending to my wife and he comes in asking if l can show him how to work the coffee pot like that is more important. Next while actually giving her comfort meds (remember she's unconscious) he comes in and said I needed to fix the shades (he overtwisted the control wand and broke them).

This morning while I am returning to our bedroom with damp cloths to help cool her he intercepts me to ask how they were going to get to the airport tomorrow. I told ride with the others since their departures are within an hour of each other. He said they hadn't ask him. I was likely pretty gruff when I told him "Talk to them about it" and pushed past him. He's avoiding me now which is probably good since there have been a plethora of other demands and I am close to decking him.

This rant is basically a vent to head off possible criminal assault charges. Why this guy can't figure out he is NOT the priority I'll never know. I'm sure I am not the only one who has experienced this situation so how did you handle this as he' still here for 18 more hours.

[UPDATE]

Thanks for letting vent. When he came back he was intercepted by his wife and her sisters. Don't know what they said but it worked for a while. Our adult son finally got in and for some strange reason the b-i-l thought that changed thing and yelled out "I dropped a bowl getting it out of the microwave." My son yelled at him, "Then clean it up you cockroach AND leave Dad alone. He is performing the most important job of his life and you are being a f**king nuisance." (So proud of that boy). Surprised his mother didn't wake up and tell him to stop using vulgar language. B-i-l's wife she he is now sulking outside and should she take him to the hotel. I told her to let him be BUT keep him away from me.


r/CaregiverSupport 19h ago

Upcoming trip looking for tips

5 Upvotes

I am getting ready to fly internationally and visit my grandpa who is actively declining, and has liver cancer. This trip is meant to be my “goodbye” to him. Looking for advice on anything, anything at all that I could take over to him (or my grandma) help them. I will be there just shy of a month. I will be helping my grandma who is his main caregiver. I would love any insight knowledge for anyone who has had to walk this path 😪 I don’t really know how to prepare for something like this and I am just trying to go over and be helpful. TIA.


r/CaregiverSupport 22h ago

gaming to fight burnout?

8 Upvotes

hey everyone! i'm a full-time caregiver for my disabled partner, and we have a very supportive, communicative, and loving relationship, so that's not an issue. however, i find myself struggling to think of a solution to a problem that leads to burnout for me, and i was hopeful someone might be able to throw some ideas my way!

i am an autistic adult, generally very high masking/functioning. but because i am always having to be "on" so to speak, even while at home, i sometimes sort of crash and burn despite my best efforts to stay calm and understanding while also having energy to do whatever is needed. i talk about my feelings and try to find time for me, etc etc - we all know how hard that is!

the one thing that i have always considered a way to destress and regulate for me is playing video games, ever since i was a kid. now, in my role as a caregiver, im struggling to find time for this one and only thing that actually decompresses me. i cant sit and play a game for a couple of hours uninterrupted; inevitably, something will be needed at least a couple times in whatever time i set aside to game, and often i have to end whatever im doing at a moment's notice. i am, on a conscious level, wanting to be available and helpful no matter how big or small the need! my autism brain gets very upset by these interruptions though, and it becomes difficult to want to take any time at all since i won't be able to enjoy it the way that the tism considers acceptable. and then not having much chance to just focus on my decompression time means i'm always more high-strung than i know what to do with.

my partner encourages me to take time to do things for me, but clearly struggles when left to their own devices and also can't help but interrupt my me-time with some sort of need more often than not. i can't just prioritize gaming over being their caregiver and partner, obviously, nor do i want to. so how the heck am i supposed to unwind, if im on-call and needed with extreme frequency 24/7? i just don't know how to balance things and i need to figure it out, because we're in this for the long haul - so i have to be able to decompress at least sometimes or ill go crazy!

does anyone have any ideas? either way, thanks for listening, just good to get this out somewhere 😅