I caregive for my disabled BIL. He has a stim where he rocks back and forth on anything he's sitting on. This was fine and dandy until circumstances came to where he needed to come over our house rather then being at his. We have electric couches that recline. I heard the creaking and I should have provided an alternative seat then and there but I did not. He breaks one seat of one couch, without me realizing and then moves seats to the other couch and continues. He breaks this one as well. These couches are less then a year old and still being paid off. MIL asks if he can come over today and I say sure but to please prompt him (I will as well but he does not do good without proper warning) that if he needs to rock today he will have to sit in an alternative seat and explain why. Cue the excuses. He can't help it. Okay, I'm not refuting that. I'm not saying he needs to stop rocking. I'm saying he cannot rock on my couches. Then I get why can't you just sit him in one spot so he only breaks one. Well, he's already broken two so further breaking one isn't going to really help. Then it's couches never last. I say these couches should last a little longer than a year. She says the couches must not be good quality or there's a manufacturer error if they broke already. I say no the issue isn't the couches, they are not made to be rocked in. This is the song and dance for everything. I remind him to put water in his Mac and cheese after setting a fire and get cussed out by him, oh well it's just how he is why would you remind him? I get cussed out for over two hours because SHE asked him to go to the store and replace a food item that was meant to last a month in his little sisters lunch boxes but lasted one day due to him. Oh well pick your battles I take it back he doesn't have to replace them. I don't know how to tell her she's hindered him so much, so I just never will. He's not my kid after all. But another example is his laundry. She asks me to do it and says he will never learn how to hang clothes up, so why bother asking. I had no idea this was a thing and had him hanging up his clothes within the first time I ever did his laundry 6 months prior. She says he will never understand money handling and will never talk to cashiers, so I must do it. Last week he properly counted 120 dollars for his purchase and handed it to the cashier. It's like, you're infantlizing him so much. You go through life assuming he can't so he won't.

i’m an older sister. my little brother is 12 and he is level 1 autistic. i am his favorite person in the household. he loves to talk to me, thinks very highly of me, takes direction from me over our parents. i also understand him better so ive taken on the role of his main caretaker in a way. i’m the one who has to make sure he eats, that he gets his tasks done, be his emotional support. i’d list all the other shit i have to do everyday on top of that but it would be 8 more paragraphs.

today was a long day. it was all going well until he threw up and i had to clean it up. at 11 PM. there is no one else who is willing to do it besides my mom who is hurt right now. i start to do it and then the zipper of the mattress protector breaks and i can’t pry it open. i’m thinking of all the things i have to do tomorrow and the choices i have to make. i feel so anxious and stressed out. i decide i will deal with it all tomorrow (including my mother getting angry with me for not following through).

my brother has to sleep in my bed because his is all puked. he sees this as an opportunity to bond and hangout and im three seconds from biting someone’s head off. after 3 or 4 small conversations/questions i tell him as politely as i can that i am very sensitive and tired right now and that im going to be on my phone until i go to sleep and that i don’t want to talk. my tone was calm but i couldn’t fake being in a good mood. he was hurt clearly but said fine and “forget i said anything” he’s dealing with a lot of depression and anxiety right now. i felt bad for him.

but not that bad. mostly i’m having a mini freak out about all the other things i have to do tomorrow with my other disabled siblings. and i have no one to share this with. so i’m leaving it here!

My aunt lives with my wife and I. We all have dinner together but then after dinner my aunt spends her entire evening watching game shows on TV. We want to spend more time with her in the evening but there's only so many episodes of Family Feud we can stand. We've suggested maybe watching something else, but if we change the channel she spends the entire time saying things like "what the hell is this" or " is this what passes for entertainment these days". Notably she says that even if we're watching retro TV shows like Three's Company. Any suggestions?

This coming Monday the rehabilitation center my dad is at will be coming to his house to assess what changes need too be made to their home to help my Dad be able to continue his care at home. Their house is so cluttered and my Dad now is unable to stand and can only scoot in and out of a wheelchair. He also is having incontinence issues. I don’t think him and my mom are really aware of how difficult it’s going to be to care for him at home. But I think it’s important to try since my dad’s mental health is suffering terribly and they have the financial means to get at home care. But there is going to be so much coordination to be done and it’s going to likely be on me to arrange for things. The unknown feels so scary. So many what ifs. I’m trying to be thinking of all the positive possibilities too, but it’s hard.

I love my mom so much. Her dementia isn't her fault.

She moved to be close to me 4 years ago and I've been putting her needs above mine consistently, and while it's not easy, it's been OK. Then a few months ago she started staying with me full time because she was sick. Also not her fault. But the combination of being her medical caregiver + her anxiety over everything I do + forgetfulness + asking me to do everything for her (as small as turning up the TV volume) + me being the only parent of a busy 6 year old + getting my phd + working is starting to turn me into someone I don't like. I'm anxious all the time and constantly trying to mask my frustration with gentleness, patience, and positivity.

But sometimes, I crack. I show my frustration and it hurts her feelings. And I feel TERRIBLE guilt and shame. I feel like I'm a constant cocktail of emotions: sad, worried, loving, frustrated, angry, guilty, and shameful. My life has become a constant rotation of these emotions.

I lived with her anxiety ruling my life growing up. And while she was loving and mostly positive, she could be really harsh and critical of me growing up. So when she gets upset with me when I show my frustration (it's happened 3 times now in the past 2 months), it triggers memories of how she used to be growing up, and I feel angry. Then immediately I chastise myself for feeling angry at her because it's not her fault she needs this much help. I feel absolutely terrible so often, when all I want to feel is love for her and show her friendship and positivity.

Please, if anyone has any advice or tips for how you've gotten through this without hurting the person you love, please tell me. I'm at my wit's end with guilt and shame.

Please post requests for research, app development, surveys, and any other questions for use in a project, product, or service here.

​

Any posts matching the description above outside of this thread will be deleted.

The sore throat is still there, and I'm even starting to get tonsillitis on my left one which hurts like hell. I already was in pain just swallowing, but it's getting hard to cough. The headache that gets worse everytime I cough is now gone, so is the nausea too. And so was the sore neck.

Grandma's got PT tomorrow, so I hope I can quickly get to an urgent care beforehand, now that my mom is feeling better.

I'm praying that I can get this treated quickly. Everytime I get sick, it is HELL!!! Shaking, nausea, vomiting, sinuses, sore throat, etc. Horrible.

I hate these damn "tips and tricks" they always show you about sore throats and flus. Literally none of them work NONE OF THEM.

Gargling saltwater, drinking tea with honey, covering a tomato with honey, fucking pressing the bone between your thumb and wrist. None of that shit works, and so many medications I take don't do a damn thing.

"Drink warm tea, it will soothe your throat" No it doesn't

"Eat ice cream it will soothe your throat" It fucking doesn't

"Drink plenty of fluids" I can't even swallow my own fucking spit without moaning in pain and damn near crying. I can't even enjoy the Thanksgiving food because of it.

AND COUGH DROPS DONT DO SHIT

I'm praying that i can start feeling better soon, because whenever I get sick it's like a full week of hell. I can deal with nausea, flu, even throwing up. But consistent sore throat, dry sinus and or tonsillitis? I'd rather get smacked in the nuts.

It's worse when grandma tries to do something and I can't talk loud because she's hard of hearing and it hurts so fucking bad that I literally freeze in pain for a second.

I'm not gonna wait a fucking week+ for this to pass.

It's better I get this treated sooner, so that I won't suffer as long, and so I can take care of grandma better. Shit fucking sucks.

Any funny stories for the week/month? Figure we might need a smile or two

Little comedy of errors tonight.

I've worked in assisted living, dad hasn't. Mom's end stage dementia, but mostly mobile. Having to do some bed changes occasionally since she busted her butt last weekend, but not often enough to work well together.

Finally the pants, almost done. Mom's jabberin away, not cooperating but not fighting too much or screaming, win.

Grab thigh, lift hip trying to slide pants up da butt. Leg flops straight. ok.

Me: Grab her foot. (Just like grab hands, we've been here before, dad)

Dad: grabs her other thigh.

Me: that's not her foot.

Dad: grabs thigh I'm holding.

Me: that's still not her foot.

Dad: grabs foot and straightens her leg out, like mom had been doing, leaving me without a hinge.

This man has a physics degree.

I just keep picturing some acme cartoon with daffy and bugs.

Also Thursday I said 5 more minutes putting a casserole together, so dad wheeled her in where she could see me cooking. She's also pretty dosed to keep her seated and out of pain, so she didn't really react to anything.

But after a few minutes she seemed to wake up a bit, seemed to recognize me and started 'talkin' and reached for me. so that was pretty cool. It's the little things.

Hope holiday people survived the holiday ok, and hope everyone has a peaceful rest of the weekend.

Hello to all my fellow caregivers. I am a working mom with two kids, full time job, and a husband that struggles with a disability.

I take care of my mom who 74 and blind - not legally blind, but blind blind. She has also fallen many times and broken the same hip twice and so she has major mobility issues.

Her retirement is under $40k a year (before taxes). I know in some places that’s decent money but that doesn’t keep her afloat in CA. Right now she pays someone to come in 2 or 3 days a week to clean, get her groceries and medicine etc. I take care of her every night and all weekend as she is completely dependent for meals, laundry, just about everything.

Can anyone tell me if I can get paid to be her caregiver? If so, I would be able to help her out more. Many people have told me I can do this but I’m lost searching online. So, direct links to applications would be amazing if there are any.

I have read about a few different programs. Don’t know the difference between them or if she is eligible. Right now we spend about $1200 a month on outside help just to get through the week and she can’t afford it and I can’t afford to keep paying the bills she can’t…

Anyway, much thanks if you have any info for me. Wishing you a safe and healthy holiday season.

TRIGGER WARNING: Medically assisted dying

I am the disabled person in need of care and here’s my situation:

I am in my thirties. I am mentally competent but physically I am total care as I cannot stand at all. I have had my disability from birth and its only gotten worse as time goes on. Right now, I am at a SNF and I have had a lot of challenges since moving in. I am set to leave the facility soon but the burden of being a full-time caretaker will fall on my only remaining reliable family member.

I do not want that because my family member taking care of me (B) is still young herself. I feel like she is wasting her life and dreams because caring for me is a sacrifice that has never been easy. I try my best to do what I can, but physically I just need so much help to do the most every day task. Cooking, cleaning, etc. I rely heavily on B and I feel so bad because she works on top of everything.

Many days, I feel as if I am a baby – taller, heavier and adult looking but with the same needs and more.

My wish is to pursue medically assisted dying because my condition is a non-curable disability that will only worsen with age. However, I do not qualify for this type of treatment in TX and finding a full-time alternative caretaker has been stressful when salaries start beyond what B makes herself.

I have seen how people are treated in NF type set ups and I honestly wouldn’t wish the experience on anyone. I know that some people live in these set ups until death, but I have seen things that have caused me to believe that medically assisted dying would be preferrable. I know that without B I would be at a facility permanently and its not the life I want to live

 Has anyone ever had a loved one go through with this option? Right now, it's looking like i'll have to travel abroad but I have VERY limited funds to begin with and I need someone that has been through this.

Despite living with a severe form of cerebral palsy, Johan has never let his condition define him or hold him back.

While he can't play the guitar in the traditional way, Johan has developed his own unique method of making music. For him, it’s not about perfection but about expressing himself and sharing his passion for sound in a way that’s entirely his own.

Johan also has a deep love for speed and the water. Though he needs assistance getting into a boat, once he’s seated, he takes full control. Steering the boat on his own, he experiences the thrill and freedom that come with gliding across the waves.

Beyond his personal hobbies, Johan has used his life experiences to inspire and connect with others. He’s authored several books that offer a glimpse into his world and the challenges he’s faced. Additionally, his online community of over 13,000 followers on Facebook has grown into a platform for encouragement, creativity, and resilience.

Johan’s story is proof that having a disability doesn’t mean you can’t push boundaries, inspire others, and live a life filled with purpose and joy.

You can learn more about Johan Öberg by watching our documentary, now available on Amazon Prime UK, US, and Fawesome.

Watch it for free on Amazon UK: https://www.amazon.co.uk/Cerebral-Palsy-Blues-Johan-%C3%96berg/dp/B0D7R3PD4C

Fawesome: https://fawesome.tv/movies/10634902/cerebral-palsy-blues.

For now, only for rental in the US: https://www.amazon.com/-/es/Cerebral-Palsy-Blues-Johan-%C3%96berg/dp/B0CWFQ1SQM

Apologies in advance to everyone who has much more difficult caretaker issues. I know my situation is minor in comparison.

I have the following problem. My 89yr old father had a stroke earlier this year. It mainly affected his ability to walk. He has since recovered really well and is walking independently again. The first 3-4 months after the stroke were hell for me, without going into too much detail I had to go and help him every day despite having carers a couple of times a day, every day I dealt with some new drama, and I had to reduce my hours at work because I wasn't managing. My boss has been very supportive and encouraged me to go part-time so I can figure things out with my dad. I signed him up for nursing homes (he's on a couple of waiting lists). The idea was I work part-time until my dad goes into a home. Now I'm waiting for a call that a space has become available - but my father is almost back to his previous level of independence. Maybe 70%. He's vision impaired and is forgetful with some things. He still has carers helping him to wash etc. Technically he wouldn't need to go into care in his current state. But I'm traumatized and tired. So I'm circling around and around with the question, what do I do? If he goes into a nursing home he might hate it. He will certainly lose some quality of life and indepence. But if he doesn't move in, what happens if he has another stroke, or something else. My life wasn't my own this year, and I was extremely stressed for months. I personally do not want to relive it, and my boss is expecting me to go back to full-time soon, which is also what I want and need to do. But my dad's wellbeing and happiness are also on the line. He's not fighting it, but obviously he would prefer not to go. If we delay it we'll lose the spot for now and I don't know how long it will be until another one opens up. I don't have any siblings that could assist.

It's doing my head in. I'm grateful for any opinions or ideas.

Trying to poop and suddenly hear an intense ruffling? It's dad trying to put the recycling away by taking the recycling out of the recycling bin and then being unable to find the recycling bin.

Trying to cook and hear an intense crackling? It's the cat trying to kill the Christmas tree.

Something falls in the kitchen? It's dad trying to feed the cat.

Life is many things but dull isn't one of them.

Edit: typo

This person is my mother. I'm making plans to move, but the situation continues. I have continued to be the scapegoat, and while I have cared for them for years the narrative is that I am capable of nothing, that I am terrible, I don't love them, that I'm crazy, aggressive, and ungrateful. It's the opposite, and my parent continues to act as though they are entitled to my life as it's my duty to care for them. I'm exhausted. I'm perpetually embarrassed by their victim mentality and obsessive behavior of keeping me "in line." This has resulted in some toxic situations including my parent encouraging harassment from various people, each contributing to the narrative their own opinion of what I'm worth. It's either my character, my appearance, or my intelligence. All of which are game for anyone to use against me to explain to me why they think I'm not worthwhile. I don't want to imagine continuing to life my life this way. I am taking the steps to change my circumstances. I'm just wondering if anyone else out there can relate. I set boundaries and it just results in more backlash, aggression, excuses as to why they lash out. Its been hell.

I can't help but think how terrible it is that this is going to likely going to be a strained relationship that will never improve. I'm aware of how toxic the situation is and that I need to move on to focus on myself. If anyone has any advice on how to cope until I am out of here, that would be appreciated as I am constantly burned out, especially since my parents recent surgery (hip replacement). I was their hands essentially, and while everything was done nothing was appreciated. It was to the point where she refused to take her pain medication and took out her vendetta onto me, while telling those around her that I wasn't doing what she needed. This resulted in some check in visits from family and friends, and while i was happy to see them, I was aware they were looking for some fault in the situation. Obviously, there isn't any. I've never abused her. I have been constantly berated, mistreated, and told that its my own fault for being the way i am. Why would i take this you might ask? Because shes my mother, and its not in my nature to fight anyone. I know i cannot do this anymore as its wearing down my mental health. I deserve a life free from this continuous abuse. The cycle is vicious, and while it may come to an end I don't think I will ever be the same. Anyone who can relate to me would be appreciated, as those around me might see the problem, but they're torn between what my mother says versus what I describe.

Please understand i am not asking anyone to even speak badly about her. This is just the reality. I hope to find some cure for my morbid outlook on this because it seems like it will never get better.

Thank you for listening.

My grandmother is 81 and has been recently diagnosed with a slew of issues that are really preventing her from walking up and down the stairs properly. She has nerve and vein issues and arthritis. In a lot of places now.

She constantly complains to the family that she can’t manage the stairs, but she lives in a small home, that only has a bathroom on the 2nd floor or basement. She spends 95% of her time on the ground floor including sleeping but she’s having trouble reaching the toilet now. My uncle is an architect, but he said that he probably isn’t worth building an addition. Also, I know my grandmother would not want to be displaced because of the construction. She has also refused to let us put in a stair lift either.

Due to circumstances she is unable to move in with either of her two children but to be honest, both of their homes have more stairs than hers. She has expressed that she wouldn’t mind moving in with me, but I am 31 and single and honestly I don’t know how realistic it would be for me to make like a permanent choice with like buying a place with her or moving in to be a full time caregiver also just due to like lifestyle differences like it wouldn’t really work either.

Realistically, she would need to move into our there like an assisted living or a retirement community, or move into a bungalow. She is very against moving as she has lived there for over 40 years, but I don’t see a way where she can remain much longer without causing serious time to herself. I visit and sleep over often. I can definitely see that she’s been deteriorating and it’s a bit scary to watch her manage the stairs. Any advice, she knows the risks of a fall in the past few years, at least two family friends have died from falling to be honest so I don’t know. I don’t know how to convince her that she needs to move for her safety.

My wife has a lung disease and often has scares and wakes up not being able to breathe. It is scary. She sleeps in the recliner and I sleep on the couch. I am a sound sleeper. This is not helpful because I don't hear her gasping, and she is in a panic state that she struggles to even throw something at me to wake me. It is very difficult to even move or think straight to use her phone. Secondary to this is that I snore, so she struggles to sleep through my noise. How to I make myself not such a sound sleeper? I don't want her to feel alone and scared.

Any caregivers ever have to help a client order stuff online and make the mistake of accidentally using your name? Every since then, this happened a few months ago been feeling like a bad person or a fraud which I've never been? How do you handle people who want you to maybe do stuff you shouldn't, how do you hold boundaries

Im sorry this is a long one.

My grandma passed three weeks ago and I don't know how or what to feel honestly. The night she passed I never once cried..maybe I'm feeling a little guilty that I'm not reacting more upset? Or that I have cried more over my bonded cat that passed in October. Maybe I'm just cried out. Everything feels so unreal right now.

I can't go into her room without being weirded out. I randomly keep thinking about how she looked and how cold she felt after she died. It all feels so surreal. I hate it. I quit going through her things for now. I just, dont want to. Maybe I'm just horrendously slow at processing, emotions are not my strong point. I've never been good at expressing them or telling anyone how I feel. Maybe I compartmentalized so much while she was still alive and while I had a "duty" that now she's gone I'm just lost? I dont know. When does this stop? Does it ever stop?

She had been suffering from dementia and aphasia caused by a stroke from several years back, amoung various other health issues. The 2 weeks prior to her passing were awful. Constantly ill, unable to eat, constantly vomiting and in pain. By week 2 she had had another stroke that took her speech away almost entirely. She didn't want to let go of my hand the weekend she had the stroke. She said she was scared. I couldn't do anything for her but stand there and try to comfort her but what do you say? Due to how her mind was I dont even know what was going on in there. If she knew she was dying? Maybe? Or maybe just afraid she wasnt feeling better and if the pain. She was very very childlike at the end. I feel this last stroke was almost a blessing in that it expedited everything so her pain ended quicker, but I hate saying that too.

Regardless, I no longer recognized the woman I knew as my grandmother as far back as 3 years ago, and it, obviously, only got worse. I mourned the loss of the woman she was when it started getting bad, the ability to converse with her, take her out, watch movies together etc. It was all gone. I know she was miserable and I truly believe I was the only reason she didn't give up entirely. I was her caregiver for 8 years, 6 of those after the 1st major stroke.

Now that she's gone, its weird, the house is way more quiet, I'm not constantly on watch and listen mode. Its been nice in that regard, because my anxiety and stress are so much better but i just feel numb to everything thats gone on. Everything feels foreign to me. I can leave the house whenever I want, I dont have to constantly check up on her, worry she'll get a bloody nose that won't stop, or clean up piss on the bathroom floor cause she always missed the seat. Worry that she'll fall or have a panic attack. Or make sure she's not trying to open something with a large kitchen knife. I still hear what sounds like her getting out of bed sometimes at night, then have to remind myself.

I guess Im trying to adapt but gawd, its hard and I don't know how to talk about it with anyone in person or if I'd even get my words out. I'm not good at that. Maybe getting this out here in this sub will help.

Has anyone felt similar after a long term care has ended? I guess I want to know if anyone else has felt like this...

I just bought myself a new blood pressure monitor, as it’s currently on sale & has a feature I’ve long dreamed about having: the ability to synch with an app.

After 20 years of having to log my readings by hand, it’s all captured with the push of a button & I am really overjoyed. (It’s exportable too, but I haven’t tried that yet.)

I was thinking about how great it’s going to be a my next doctor appt and it occurred to me that I would’ve loved having one like this for my dad & my uncle when I was providing care for them.

So I decided to run here to share with y’all.

I hope this doesn’t break any rules or ruffle any feathers. The one I found is called iHealth Track. Bought in the US via major online retailer that starts with “A” & ends with “zon”

I'm a 46 guy that is taking care of his 79 mom. My dad passed away a few weeks ago.

My mom and dad were the opposites when it came to their issues. My dad was mentally sharp and he had a lot of mobility issues. My mom is having memory issues and isn't fully there. She can move around the house.

Unfortunately, I have extended family that continues to set up events with my mom without my input. It's a pain because I didn't really make plans for that. I'm debating about what to do in the future.

Caregivers: tell me about ur most cherished alone times of the day. i’ll start. in the morning while my mother is eating her fruit and having her first glass of water, i will have coffee and journal and meditate and pray and stretch, and just fiddle faddle around for what often turns into greater than 90 minutes. i must do better and cut this time down 😬 yikes! then at night around 11:00 pm i get my Mom ready for bed and once she’s in bed IT IS MY TIME!! yippee!!! sometimes i watch tv, sometimes i write, sometimes i just trick off on reddit or spoutible. i am a night owl and used to stay up until 3 or 4 but now i’ve gotten that down to 1:30ish-2. back in 2016 when my brother came home for 3 weeks from the vent hospital, he had to be turned every 2 hours and that shot my already poor sleep habits to hell. i am much better now but not perfect. i try, in my life, to not make good the enemy of perfect, so we soldier on and try to get a good 5 or 6 hours before she wakes up for the bathroom. tell me what times u cherish.

Yep, I'm back with a vengeance asking for some more advice. I made a previous post which you can find https://www.reddit.com/r/CaregiverSupport/comments/1gt2rt8/first_timer_looking_for_some_advice_and_some/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button here if you need some better background.

But yeah, I'm back again asking about some devices and whatnot you fine folk may suggest.

Essentially, I'm looking to get some equipment that'll help keep an eye on my grandmother without having to have our eyes directly on her at all times. I will be living in the home with her fulltime, but I will be keeping a job and sleeping, etc. We'd really, really like to get something that could notify the entire family via an app or a text or something, that way more than one person is aware if something happens. Which of course, I will be the primary caretaker and I will be doing most of the work but like I said, the more everyone else can help, the better. For everybody.

Primarily though, I'm looking to get a watch or a necklace, a life alert type deal. Something that has fall detection that would notify me and the rest of the family about such things. I know the AppleWatch and the Fitbit have fall detection but I'm not sure how good it really is, and whether it'd be able to notify multiple people. Anyone have experience with this? and if not, do you have any suggestions on a device that would be able to detect falls or notify us that something happened? Us being me and the rest of the family.

Secondly, I am going to be going forward with the camera idea, we're going to be installing a Nest camera in the living room with a wide angle so we can see the entire living room and kitchen, We being myself, and the rest of the family. If I'm at work and something happens, I'm a lot more comfortable knowing that everyone else knows what's going on too.

Basically, do you guys have any suggestions for devices we can use to watch out for my Grandmother across a wide spectrum? I'm gonna do as much as I can, but she's not exactly a spring chicken, and I'm not exactly a bodybuilder, and I can't be awake or around 24/7. The more we/I can do to make sure everyone is aware, the better.

Thanks.

Hello,all. Have any of you had someone just keep messing with their incontinence underwear? My mother is BEYOND frustrating. I put her underwear on and eventually she's either turning them inside out, or stuffing toilet paper inside. It's a bigger mess than it needs to be, and I'm at a loss. She just doesn't get how they work regardless of how often it's explained.

I (25f) am the sole caretaker for my father (62m) who is on home hospice for pulmonary fibrosis. He requires assistance or at the very least monitoring for any activity he does. He spends a lot of time just sitting in his chair, and sleeping. He is a busybody and I know it drives him crazy to be stuck inside and stuck in a chair. But I am his sole caregiver, I literally leave the house to just go to work, and I’ve had to miss lots of hours due to his health. I don’t get a break. I can’t rely on my older brother, he has a daughter who is 2, and I’ve asked him for help several times but he doesn’t deliver a lot of the time. We have no other family around. He doesn’t want to be a burden on the family we do have that are willing to travel and help sometimes. He gets so pissy and upset when I tell him I need time alone, or just want to sit and not talk. As soon as I tell him, he finds all sorts of shit to do or talk about that’s important that he never wants to talk about when I’m actually sitting with him and able to. I’m so frustrated and burnt out but don’t know how to explain it to him without making him feel like a burden. I love him and I’ll do whatever I can to make sure he is comfortable but he doesn’t understand that I need time just not doing anything sometimes. It’s not like I’m leaving him alone completely, I’m literally just in a different room, I have my phone on and I get up and come to him anytime he calls. But I am noticeably frustrated when he just wants to talk about something because he’s pissed I want to be alone. Sneaking off doesn’t work, he just follows. I get frustrated and then snap. Then he gets angry and it turns into a fight, and then I still don’t even get any time by myself. Literally the only time I get alone is when I go to the bathroom, but if I go too much or too long just for some time alone, he questions it and I have to explain myself I’m just so frustrated and burnt out and guilty as hell that i get frustrated and snap at him. I know it’s hard for him but it’s hard for me too and I don’t want to complain to him when he arguably has it a lot worse than I do.

Ok so I’m (50+ F) the caregiver for my elderly mother (82) with mental illness as well as physical health issues. I was an only child and feel like I have been taking care of her most my life. 12 years ago, I had to move her in with me after my stepfather died because she literally can’t take care of herself. (She’s not a danger to anyone, just self centered, manipulative and needy.)

So today, I was supposed to go to a friend’s for dinner as an after Thanksgiving deal. Mom was invited but didn’t feel up to going. Well, I ended up spending the morning at the dr’s because mom has another UTI. Doctor saw her, ordered an antibiotics shot and called in an Rx for oral antibiotics too. I thought, ok mom will sleep this afternoon and I can still go. I should’ve known better.

It took almost an hour for mom to get her shot, during which time she got more and more agitated. She was cold, what was taking so long, etc. She was yelling at me, yelling at the nurse, demanding the doctor… you name it, it happened. Then after all was said and done and we were back in the car on our way home, the tears came. She went on with her normal “you’re so mature; I’m such a baby” spiel as she cried. By the time we got home, I had both a migraine and upset stomach, so no more visit with friends.

I’m literally alone in all this. Never got married or had kids (though I am a teacher with over 120 early teenagers each year) and mom is the last of her family. I don’t see an end or any relief in sight. Please tell me I’m not alone. Any words of encouragement or support would be so appreciated right now.

Hi, I'm using a pseudo account for privacy because she knows my main account. I (46F) don't share much on my other account, but I am so thankful to be part of this group. I read stories every day that I can relate to. My oldest brother (50) is disabled and regularly self-sabotages his life. I am the only adult capable of taking care of our aging mother (72). I keep telling myself, "Next time she does ___," I'll start there, but I never do. I have to start somewhere. I want there to be a history, a timeline, a story that tells a bigger picture.

After Dad (68) passed away unexpectedly two years ago, I've seen a slow, steady decline in Mom (72). It's mainly just small things like forgetfulness and her appearing confused and overwhelmed. Forgive my comparison, but it's like a deer caught in headlights. I say "acting" with love; she wants to appear in control and capable. For example, she might have multiple doctor appointments for herself or my brother in the same week, and although she has everything written down in a planner, she stands there with a bewildered look on her face as if she is overwhelmed and forgetful. She can't multitask anymore and ends up repeating herself or doing the same thing over again.

Typing this out is making it sound worse than it is. She's not always that way; the next day, if she's facing the same issue, she'll be organized and on top of things. I feel lost—so, so lost. And I'm angry... angry at my dad for the choice he made. His one selfish act in life took his life. I have no idea how to handle my mother aging or my brother making choices that change his life so drastically (which has nothing to do with Dad) and, as a result, change our mom's life and mine. He is dependent on care from us, and without our everyday routine with him, he would be in a nursing home. She says Dad saw no end to picking up the pieces of my brother's latest failures.

They were always there to move him one more time or run to him after a 3 a.m. phone call from him, hallucinating on drugs, screaming, crying, and begging her to save him. There's so much stress, and to this day, he's still doing what he does, but now it's just my mom and me left to pick up the pieces and adjust our lifestyles. It's like she signed up somewhere after my brother was born to be responsible for him and has never been able to break away from the mother-son relationship they had when he was a kid. I am a mother too, so don't get me wrong here. Both of my children are grown and away from home, making choices that don't affect me or my life directly every day. My brother, however, never stopped impacting our lives with his choices.

I decided to share because I went to Mom's today to help with cooking. When I walked in, the house was smoky, and she wasn't responding to me saying so. I saw her in the chair at the table, passed out like a rag doll, as if someone just tossed her there. Her arms were lying at her sides, her legs were the same, and her head was tilted unnaturally. The food on the stove was burning and black (no smoke alarms; I need to check those tomorrow), and she wasn't responding to my touch or voice. I finally got her to respond, but her speech was slurred, and she kept asking the same question: "Why is it smoky in here?" even though I showed her the pot twice and explained why. I was 15 minutes late this morning. What if I had been another 15 minutes late? The kitchen could have caught fire, and she would have been passed out in the chair, with my brother still sleeping.

About five months ago, she had a similar episode and wrecked her car not far from the house. I was on the phone with her briefly before she wrecked, and she was slurring her words. I saw from the security cameras that she wasn't walking straight to her car and sounded monotone on the phone. We hung up before she wrecked, but she didn't remember anything. She didn't know how she hit the sign twice on different sides of the car, which was totaled. It was an older model, but a high-end car. Just like this morning, she had no recollection of the wreck. She has seen several doctors since then and had scans, MRIs, blood work, and even spent two days in the hospital, but we have no answers. The heart doctor and her primary care physician both say nothing is wrong.

I know she's under a lot of stress; she has to deal with everything Dad left for her to do alone, as well as my brother's issues. I don't know what to do. I have no idea who to turn to, where to start, or what she needs. I tried to let her take care of things, but it’s just too much. I cooked Thanksgiving dinner for seven myself while she slept in the recliner. Her speech cleared up somewhat before she fell asleep, just like it did during the first episode. I called paramedics, but she didn't want to go to the hospital. Because she was talking (even though it wasn't in her usual way) and cutting celery, the EMTs said it was a good sign. However, the celery was slimy with gooey, bad ends. No one took it seriously—neither she nor the EMTs.

No one called or checked in on her. They didn't last year either. Last year on Christmas someone texted her at 8:30 at night. Like it was a last minute afterthought. Just a "Merry Christmas".

Warning that I'm going to be speaking about parental cancer in this post.

I'm a therapist/group practice owner and I have been working in private practice for the past three years. At the same time, my dad was diagnosed with lymphoma the week that I quit my full-time job and dove into private practice full time. In a lot of ways, private practice has been very helpful for me when it comes to flexibility and being able to support my dad out of province during his cancer treatments. The thing that I am struggling with is that during the last two weeks we've gotten very negative news and it's the first time within these three years that I have found myself cancelling days of work just to lie in bed and watch TV or go on my laptop and try to take my mind off of the reality that I have no control over right now with my dad's health. I am going to be reducing my hours seeing clients significantly in January and February to support my dad who is going to go through CAR T CELL therapy, but in the meantime, I get more and more depressing news every single day, and just cannot function to work the way that I could even just one month ago. I just physically cannot bring myself to enter these sessions feeling as though my clients are going getting the best from me. I'm just feeling a whole bunch of guilt and shame around this, and wondering if anyone else has had to deal with a similar experience as a caregiver with a career?

To everyone that is now a former caretaker of someone they loved what exactly happened to your life after they died? Can you explain how you adapted to a new normality after they were gone? As in the days after their passing to months later?

Yesterday started having a sore throat, today it's gotten worse and I'm trying to sleep. I've been using vicks vaporub, I've boiled milk with honey and some people eat cereal but don't chew it thoroughly, so the crumbs kind of scratch off the phlegm in the their throat.

I was having chills, my head hurts, can barely stand and I've gotta make sure grandma is ok. I'm praying that she'll be asleep all night, because I'm tired of always waking up every single night. I've never gotten a full 8 hours. She was walking, helping with food all day. She had a great Thanksgiving. So I'm hoping it'll have her tuckered out.

I've been huffing these cough drops that aren't doing a damn thing. Literslly nothing worms. I've never had a medicine treat me so fast.

It's hard to breathe because my throat hurts. And I'm tired. I'm praying I'll be helped up by the morning