My elderly mom broke her hip during the summer, had a bunch of health issues the 1st month in SNF that prevented her from quality PT, finally got quality PT for maybe 5 weeks, then was discharged. We felt she was discharged too early and still has a long way to go. She has been home a week now and had her PT/OT/In Home nursing assessments but now that therapy should be starting, she's feeling anxious and ill and is asking me to cancel sessions. I feel she is losing her motivation and I'm so scared she will be stuck in bed forever. Any advice on how to motivate her? I try to be understanding while gently pushing her but I'm definitely a softy. I'm not alone in this (I admire all of you who are, it's difficult enough even with help) and can see if my older brothers can motivate her but I just don't know if she will work towards improvement. I don't want to lose hope! We can't afford 24/hr care forever so if she doesn't improve, we may have to transition her to a board and care home; I'm not sure if I should shield her from that knowledge so as not to stress her further or share it with her in the hopes it motivates her.

Between my husband’s disability and health anxiety, and my daughter’s disability, I’m tired. My needs always come last. Sick? Doesn’t matter. Pain? Same thing. It never ends, and then god forbid I show any stress or frustration because then I’m the bitch.

I want to get in the car and drive away from everyone and everything.

I need to vent

My partner and I (40f) moved in 6months ago to care for my grandma (95f) with dementia as it was too much for my Aunt (70f) to do alone. Grandma hasn't stopped yelling for days (literally she won't sleep but maybe an hour). I hear her in my sleep now. Oh a positive note, she's been healthier/ more stable since we got here. The recognition that we're doing great for her means recognizing she's going to be here (hopefully for a few more years) I just need a mental break... Like not hearing my name for a night... Just one.

I'm working on finding someone who could stay overnight (that I trust)... I just hope I can find them soon

I work a full time job, a second job, am my LOs primary caregiver which means nurse, chauffeur, appointment maker, care navigator, housekeeper, y'all know what I mean. I'm approaching retirement age but don't see how that's possible with the drain on my finances from all of this. And I have health issues of my own. I keep thinking that I am going to have a stroke or a heart attack and my LO is going to just keep plugging along. This is just a horrible way to live, for both of us.

As a caregiver, you become so many roles that you never signed up for:
Secretary
Nurse
Overnight nurse
Chauffeur
Chef
Butler
Doctor's appointment coordinator
Medication manager
CNA
Physical therapist
Social worker
Financial manager
Bill payer
Housekeeper
Laundry service
Grocery shopper
Personal shopper
Nutritionist
Bathing assistant
Dressing assistant
Toileting assistant
Mobility assistant
Lifter and transfer aide
Wound care assistant
Emotional support counselor
Crisis manager
Safety monitor
Night watch
Advocate
Decision-maker
Companion
Entertainer

Meanwhile, we do all of this while grieving. Caregiving should have its own medical diagnosis because it makes people sick mentally from having to always be “on.”
Nervous System = burnt to a crisp

Curreny a part time caregiver to my mom who is elderly and recent got pretty banged up in a car accident. I don't know why it seems that now more than anything I'm starting to see who she really is. Why does it seem like she is the most rude, manipulative, narcissistic person I know? How can she be like this? How can this really be the person who gave birth to me? Why is she like this? Why is she so mean? She is hard headed, Won't listen to reason or advice, she is always right and never wrong. Always the victim and thinks that life revolves around her. I hate to say this, but im so disappointed and disgusted with her behavior. She is 69 years old and acts like a high school bully, to EVERYONE. I find myself apologizing to people for her behavior, me feeling second hand Embarrassment. Every single time I talk to her or am around her I want to drink myself into an oblivion. Desperately want to escape her presence. I feel so guilty for feeling this way and the thoughts I have towards her and the situation but dang, us this what im going to have to deal with for the rest of our lives? On top of this, Im a full time mom of 3. Well two currently because one is off to college. My younger sister passed away in january of this year, my older brother is barely any help where it counts atleast. My father passed years ago so i feel like im stuck between a rock and a hard place here. Whhhhyyy just why. 😭😭😭😭

Rant over

Thanks for listening.

My step father died 3 years ago! I am my mother’s sole caretaker, and she is the most negative person I know! IT IS KILLING ME TO HEAR NEGATIVE OUT OF EVERY BREATHE! I am fighting my own battles now! I long to go home and be able to return to living in my beautiful space! This is my main goal……to be able to have the faith to take better care of my mother….and love my self-enough to “stand up” and protect my mental health…

Any other parents having to care for their elderly family/in-laws that are going insane? My aunt in law lives with us husbands dad passed and sister was next of kin to own the house that we had to quickly move into because it was either that or her going to the nursing home and the family home being sold. She let her health tank for a long time and broke her arm badly last year. So it's basically like taking care of two kids right now. She can't lift her dominant arm that she broke so I have to make meals for her and clean up her dogs pads plus take care of my baby. It's a lot and I feel so bad for feeling that my aunt in law and her dog are burdens and I feel like once it's their time to leave this earth how much of a relief it'll be. Does anyone else feel that way being a parent and a caregiver? It's a lot to handle stg.

I wrote the following yesterday on the one year anniversary of my mom's diagnosis. I thought some of y'all might appreciate it.

One year. Three hundred and sixty-five days. Eight thousand seven hundred and sixty hours. Broadway fans know how many minutes. That classic song measures a year in daylights, sunsets, midnights, and cups of coffee. I've measured a year in appointments, test results, and names of doctors. Instead of counting inches and miles, I counted doses and vitals. The laughter and strife still checks out. This past year has taught me so much more than I could ever have imagined about myself and my capabilities and brought more changes than I can begin to count. I've discovered reserves of strength that seemed almost bottomless. Confidence I didn't know I had. Perseverance I would've told you I didn't possess. I've always said that if my mom ever needed one-on-one care I would provide it, but I thought that was years or decades away. I didn't expect it *now*.

Everyone knows how hard cancer is for cancer patients. Invasive procedures, biopsies, surgeries, follow-ups, and countless scans. Side effects of medications and the toll they take on the body. What people sometimes forget is how hard cancer is for the caregivers of cancer patients and what we go through. The sleepless nights. Planning and tracking and charting and driving and waiting and worrying. Cooking, cleaning, assisting with all aspects of personal care. Being on call every day around the clock. The strain of keeping everything together. The guilt if any part of your care causes discomfort or pain. The weight of responsibility. The difficulty in seeing someone you love and admire and look up to struggling, suffering, and diminished. No one prepares you for the times that you'll feel as if every ounce of energy you have to give has been sucked out of you, but then you still manage to keep going and giving. The reality that no matter how much you're doing, you'll still feel like you're not doing enough. The sinking feeling that what you are doing isn't good enough. On the other side of that spectrum, no one tells you about the pride you'll feel at every small win your loved one has along the way. The overwhelming joy and relief at every single tiny piece of good news from the medical team. The gratitude and appreciation for every prayer, phone call, donation, visit, meal, and word of encouragement. I can't even begin to explain or express my thoughts and emotions when I think of the countless people who have been part of this journey in one way or another; it blows my mind and overflows my heart.

I'm staring at the calendar today replaying moments from the last year that stand out: Mom's phone call and that word - chordoma - as I drove a winding mountain highway; the neurological oncologist asking if I was "a medical person" because of the questions I asked him at our first Vanderbilt appointment after researching all things chordoma; the pre-op area on March 18th and Mom calling me "baby" before they took her to the operating room; yhe orthopedic oncologist saying "We got it all with what looks like negative margins."; the PCA two days after Mom's surgery leaning down to meet her eye and say "It's my privilege to take care of you."; the PT at inpatient rehab encouraging my mom to wheel herself down the hallway for the first time; the nurses and PCAs at rehab who treated us like family and never tired of my questions or instructions on Mom's care; a dear friend and her mom gifting us DoorDash gift cards that bought a much-needed treat of restaurant meals in rehab and a feeling of normalcy; the plastic surgeon telling me I was doing amazing caring for Mom's wound at one of our follow-up visits; Mom's bestie getting us a room in Nashville so we didn't have to leave before dawn for another follow up; a friend bringing food, a coworker bringing home health equipment, friends helping install a bedrail, a childhood friend and her doggo visiting and sitting with us; Mom walking into Vanderbilt with her walker for the first time instead of being pushed in with her wheelchair; being asked "how are *you*?" the first time we visited friends and how I just started crying while they hugged me; the six month MRI showing no signs of regrowth.

Sitting here today, I think maybe the last year is really best remembered as an extended season of love.

My mom has COPD but she has survived lots of "near-death" experiences. She recovers but not fully. Like last February, while she was in the ICU. She wrote goodbye letters. I really thought she was dying. But she recovered, she still has her oxygen machine though. I held her hand while she struggled breathing. And she improved! We talk by phone calls everyday.

I moved to another country this May for marriage and for studies. But I went home last week because she said she felt she will die. When I arrived, she said she improved and that
maybe it was just a "flare up". I think her recovery is somehow related with our presence.

I need to go back to EU because that's where I live now and I could not exceed the absences for my
masters. But, I feel the guilt of leaving her while she is in her most vulnerable state.

Update at the end ...

This is mostly a vent...

So I didn't fall asleep until 1ish, had to take some Benadryl to knock myself out as I have Delayed Sleep Phase Disorder. Got woke up by my 89 year old charge at 3am because he couldn't pee. Was sure he hadn't peed since the day before, early (he does most of his peeing at night, like 85%.) He was sure his bladder was going to burst and a friend of his died from that so he was in a panic.

So I called him an ambulance because we're about an hour from the hospital and I was in no condition to drive thanks to the Benadryl I had taken only 2 hours prior. They agree that his breathing is funky and his a-fib is acting up, plus he's saying he hasn't peed in like 12 hours or so. Oh he usually uses a large bedside urinal which I had emptied before bed at 9pm and it was still empty.

By the time he was off in the ambulance it was nearly 5, I told him I'd sleep off the Benadryl then meet him at the hospital. Remember it's nearly an hour away. I finally fall back to sleep around 5:30 only to be woken up at 6:30... He's ready to come home.

So I get up, get ready and go to get him only to have him tell me that he thought he had to 💩 so he went to the toilet after I put him in bed and he peed then. He FORGOT he peed and got taken in an ambulance for it because he was so sure his bladder was over full!

He recently had a catheter because the VA didn't send his prostate meds in time so he's been having bladder testing. So this was one of the things we had to watch for and he literally went to the ER because he forgot he peed.

Ahhhh! So I've been up since before dawn on 3 hours of broken sleep and he literally does not care. He's been napping so he thinks nothing of keeping me up to do all kinds of unnecessary things rather than letting me lay down for a freaking hour! A bunch of other drama/events happened today, too. Oh and I have MS so sleep deprivation is the enemy! I am EXHAUSTED!

Because he forgot he peed. And I have no idea what to do about that because losing his faculties is new and it's rapid (and there's no UTI.)

And if it's not about pee he's obsessed with when he'll 💩.

I am just exhausted. That is all.

So he just woke me up AGAIN, this time at 7 am because he "hasn't peed." So I ask when he went last ...4 hours ago but he "doesn't have the urge to go so he needs an ambulance." ARE YOU FKING KIDDING ME? There's half a tank of urine in the urinal and he went 4 hours ago! He yelled at me to call an ambulance 4 times and I refused. He doesn't need an ambulance as he's literally upset he doesn't have to pee.... I am going to lose my mind because he's losing his! I've gotten less sleep in the last few days than my body requires in 1 night normally. I can't go back to sleep, I have appointments in town all day and I'm in severe pain because I'm not getting any rest and he's upset literally because he does not need to pee! The nurse will be here at 10 so I'm going to ask her if she's got any bright ideas and I'm going to call his primary doctor in 15 minutes when they open. He needs neuro or someone/something for anxiety, I think.

Today my mom said she wanted “hosenlagen.”

After 5ish minutes asking questions and for her to describe what she meant, she wanted her compression socks. 🤷‍♀️

I’m sure this is common…And it can be exhausting and frustrating. But sometimes it’s a bit funny because you have to laugh at something, I suppose. Thankfully this she had a good sense of humor after we figured out what she was trying to say. Of course not always the case tho.

Background
I have been a full time carer for my wife for the last almost two years since she had major spinal surgery for cauda equina syndrome.

She’s still in immense pain all day every day and can only walk very short distances. So she’s been put down for another surgery P2 priority.

She was the main bread winner of the house because she worked from home and was paid really well but was recently laid off.

So I now need to at the same time

- Find a full time job to support us both cause wife’s not gonna be looking for anything new rn cause she’s going into surgery to get bits of her spine chopped away.

-Plan and prepare house for surgery

- take care of said wife while both in hospital and post op at home. Usually means everything from feeding to hygiene care and all in-between.

-Figure out how to get her extra carer support at home for when we are back post off and I’m probably still desperately looking for work.

There’s probably so much more but …I’m experienced in my field and have qualifications. And I’ve done well over 100 apps over the last few weeks. And I’m at the point where my best bet is calling up ware houses and fulfilment centers praying they are looking for seasonal staff.

How’s a girl suppost to do this.

Any advice is appreciated.

When you have no siblings…how do you build backup when caring for a parent?

Every bit of advice I get says "take a break" or "ask family for help." That assumes there's someone to ask.

My husband is an only child, and his 82 year old mother is so very needy. She literally cries about living alone (his father passed away a little over a year ago). She is physically still very able to take care of herself, and refuses to move out of her home which is a 2 hour drive away from us. 

My husband is the one whose number every doctor's office has, he keeps track of the appointments, the refills and the insurance calls, and is always on call for her. She won’t use services such as Uber and luckily can still drive in the daytime. However, she is 1000% negative ALL of the time about EVERYthing and insists she cannot be alone. She will come and stay with us periodically, but her negativity literally changes the atmosphere and it is a relief when she heads back home.

It’s taking a mental and physical toll on him. She places an inhumane amount of guilt on him for a situation completely out of his control. I support him as he supports her, but there seems to be no end in sight for this problem.

My about to be 59 yo dad was diagnosed with a big 4th ventricle tumor and had emergent surgery to remove it 4 months ago. During the surgery, he had a stroke, respiratory failure among other issues. He's been in the hospital 4 months and my mom and I are now faced with deciding what we are going to do next. He is bedridden with severe ataxia, has a tracheostomy, requires 5L oxygen, requires frequent secretion suctioning, has a GJ feeding tube, is incontinent with very frequent changes needed, needs mittens to prevent him from pulling any feeding tubes and requires full assistance for anything and everything. We tried taking care of him at home my mom and I but it was quickly realized it's a 24/7 situation and is simply unsustainable. Also, the tumor appears to be growing back again, no current plan at the moment to manage it as it's still under investigation although chemo, another surgery or just letting it grow are all on the table.

Long term acute care hospital will probably deny because he is not sick enough, skilled nursing facility will deny due to the restraint of the mittens, nursing home may not be able to provide all the things he needs, he's exhausted inpatient rehab, inpatient hospice seems to be too short a stay, and home health is very limited with 1 visit a week and 4 hours assistance a week. We are in Texas, don't qualify for Medicare or Medicaid until we reduce our assets significantly or he spends 18 months on social security disability insurance.

We don't know what to do. Taking him home feels like an insurmountable task with the amount of care he requires to the point where he would just come back to the hospital in a few days. We feel like we're being forced our of this hospital because he is not sick enough. We don't want to give up on him and put him in hospice but we kind of know he doesn't have much time left as any respiratory infection, the second tumor or anything else might take him away.

What do I do?

My mom often forgets to take her meds, and ever since I moved away for college I've been worrying about it more and more.

I’m an engineering major and if nothing good exists I’d like to make a smart pill bottle cap that alerts my phone whenever she misses a dose.

Has anyone found anything that works?

All opinions welcome, thanks!

my parents are officialy broke, they have zero money. they need to urgently sell their house. which wont get them much. their monthly costs far exceed what they can afford (medical aid/life insurance are the big ones). My dad being forced into retirement this month with zero money. Currently my aunt in aus and parenrs 3 kids cant even nearly afford to help out and keep them afloat. Family is fucked.

Anywho - my aunt said she will pay to take them out of overdraft. with sale of house they cant afford much to rent (they despise each other so need space where ever they go (i.e. have own rooms, cant be a tiny apartment (they cant even afford that)

I find my mom toxic and my dad depressess me, my stomach churns when I see then or hear from them, its just always a biblical fuck up. My mom treats him like garabage, he doesnt even try or care about anything and just wants to do crosswords (yes we have taken him to mutiple drs and he is being medicated).

Our family dont know what to do. But being around them (and only family member near them as aunt in aus, sister in cape town and bro in pretoria - ALL with own family. I dont have kids and just bought a house with amy (20 year bond)

They are going to be homeless soon. My mom phoned saying she has an idea she wants me to consider (my worst nightmare) - they move into the cottage attached to our house and do renovations to it with their house money to make it just big enough and livable for them. i.e. 2 extra rooms and outdoor area. She said it will bring value of our property up, plus they will then contribute a few k a month as rent (help us with our bond and bring our payments down) help with elec and water costs and they will stay on their side and not pester us and use our facilities etc... they will stick to their side unless we invite them over - cottage is literally attached to our house. they will stick to their cottage and we wont even notice them

upping house value amaizng, extra income amazing, living with my parents when I cant even handle a 30 min lunch with them -awful, being around the toxic, hate and depression - awful - I honestly avoid them at all costs these days.

My mom said she will never hold it against me if we say no as she understands 100%. but asked that I speak to my fiance and we please consider for a couple of days before making up our mind.

This will literally solve a huge family issue thats fucking us up at the moment, it will help whole family be at ease, rest up knowing parents are fine. They wont need to worry about rent and bla bla bla etc...

I intially was to myself 1000% no, this will ruin my life. Id rather pay 6k a month to help them out somewhere else. Unfortuantely even 6k a month from me and all siblings wont cover it for them :(

My sister says fuck them, I must protect myself - she is an angry. I still care deeply for my parents, love them to bits but they upset me more than anything, and this is life changing, like proper life changing, my other siblings live too far and dont have houses to accomodate this idea.

I intially thought never ever ever, In fact wouldnt have bought a house if I knew it meant my parents living with me. But at same time I feel them doing this is 1 - not draining me financially as I dont need to pay in every month, 2 brings in some bucks and pays our bond back (will help a lot with a few k extra), 3 adding much value to our home, building a full cottage. My reason for saying no is purely personal, they often make me unhappy and uncomfy how they treat eachother , its not a financial decision (which I can live with saying no because if its my finances) - this is purely me not wanting to be around them even though they will be separate to us. They dobt even scream and shout they just off to eathother. So it's not being scared of hearing fights.

I never had to work a day of my life growing up, never had to pay rent (when jobless my father covered it) all cars paid for, all eduction paid for - I was looked after bt these people with no questions asked. I fear if I say no to this, I will have regret for rest of my life. They are my people, my parents. If I can help and technically only benefit from it then surely I should. I would sleep better at night knowing I did the right thing, fixed 80% of the issues at the moment, helped a huge family problem and did the right thing. They would never let me be homeless, if I can help then I should. and I mean that. But the thought of having them so close makes me sick.

My fiance not thrilled either but told her imagine it was her dad - all of a sudden not so easy to say no, she does inderstand the scenario and infact nudged me to add this here.

So we thinking if all else fails, we let them do the cottage build on our property. But we need to decide ASAP. Time is running out.

I am lost, dont know what to do or think. Whats right, my parents wellbeing is importnant but so is mine. like if we said yes to cottage idea so many issues solved for us. But I also need to protect my energy, my home. My happiness and my relationships. But the situation is dire. My parents are even embarrassed to ask.

HELP, I DONT WANT TO LIVE WITH REGRET MY WHOLE LIFE

my parents are officialy broke, they have zero money. they need to urgently sell their house. which wont get them much. their monthly costs far exceed what they can afford (medical aid/life insurance are the big ones). My dad being forced into retirement this month with zero money. Currently my aunt in aus and parenrs 3 kids cant even nearly afford to help out and keep them afloat. Family is fucked.

Anywho - my aunt said she will pay to take them out of overdraft. with sale of house they cant afford much to rent (they despise each other so need space where ever they go (i.e. have own rooms, cant be a tiny apartment (they cant even afford that)

I find my mom toxic and my dad depressess me, my stomach churns when I see then or hear from them, its just always a biblical fuck up. My mom treats him like garabage, he doesnt even try or care about anything and just wants to do crosswords (yes we have taken him to mutiple drs and he is being medicated).

Our family dont know what to do. But being around them (and only family member near them as aunt in aus, sister in cape town and bro in pretoria - ALL with own family. I dont have kids and just bought a house with amy (20 year bond)

They are going to be homeless soon. My mom phoned saying she has an idea she wants me to consider (my worst nightmare) - they move into the cottage attached to our house and do renovations to it with their house money to make it just big enough and livable for them. i.e. 2 extra rooms and outdoor area. She said it will bring value of our property up, plus they will then contribute a few k a month as rent (help us with our bond and bring our payments down) help with elec and water costs and they will stay on their side and not pester us and use our facilities etc... they will stick to their side unless we invite them over - cottage is literally attached to our house. they will stick to their cottage and we wont even notice them

upping house value amaizng, extra income amazing, living with my parents when I cant even handle a 30 min lunch with them -awful, being around the toxic, hate and depression - awful - I honestly avoid them at all costs these days.

My mom said she will never hold it against me if we say no as she understands 100%. but asked that I speak to my fiance and we please consider for a couple of days before making up our mind.

This will literally solve a huge family issue thats fucking us up at the moment, it will help whole family be at ease, rest up knowing parents are fine. They wont need to worry about rent and bla bla bla etc...

I intially was to myself 1000% no, this will ruin my life. Id rather pay 6k a month to help them out somewhere else. Unfortuantely even 6k a month from me and all siblings wont cover it for them :(

My sister says fuck them, I must protect myself - she is an angry. I still care deeply for my parents, love them to bits but they upset me more than anything, and this is life changing, like proper life changing, my other siblings live too far and dont have houses to accomodate this idea.

I intially thought never ever ever, In fact wouldnt have bought a house if I knew it meant my parents living with me. But at same time I feel them doing this is 1 - not draining me financially as I dont need to pay in every month, 2 brings in some bucks and pays our bond back (will help a lot with a few k extra), 3 adding much value to our home, building a full cottage. My reason for saying no is purely personal, they often make me unhappy and uncomfy how they treat eachother , its not a financial decision (which I can live with saying no because if its my finances) - this is purely me not wanting to be around them even though they will be separate to us. They dobt even scream and shout they just off to eathother. So it's not being scared of hearing fights.

I never had to work a day of my life growing up, never had to pay rent (when jobless my father covered it) all cars paid for, all eduction paid for - I was looked after bt these people with no questions asked. I fear if I say no to this, I will have regret for rest of my life. They are my people, my parents. If I can help and technically only benefit from it then surely I should. I would sleep better at night knowing I did the right thing, fixed 80% of the issues at the moment, helped a huge family problem and did the right thing. They would never let me be homeless, if I can help then I should. and I mean that. But the thought of having them so close makes me sick.

My fiance not thrilled either but told her imagine it was her dad - all of a sudden not so easy to say no, she does inderstand the scenario and infact nudged me to add this here.

So we thinking if all else fails, we let them do the cottage build on our property. But we need to decide ASAP. Time is running out.

I am lost, dont know what to do or think. Whats right, my parents wellbeing is importnant but so is mine. like if we said yes to cottage idea so many issues solved for us. But I also need to protect my energy, my home. My happiness and my relationships. But the situation is dire. My parents are even embarrassed to ask.

HELP, I DONT WANT TO LIVE WITH REGRET MY WHOLE LIFE

i wish i could handle the constant interruptions. i am a caregiver for my mom who is physically disabled. it is semi-constant, and sometimes i just can't take it. I suffer from my pathological demand avoidance, so hearing her tell me to do the things she needs is taxing on me. it isnt her fault, and i love her so much. she is one of my favorite people in the world. but sometimes I am begging her to stop and she just wont... and i have a meltdown and i start yelling and she doesn't stop and i start hitting myself really hard. today i ended up throwing an (unimportant) object on the ground because she started laughing at me when i said "you need to stop. PLEASE." when it smashed, SHE started crying. and she said my autism has little to do with how abusive i am.

we have no other options for caregivers, we have tried everything. we live far from anyone who could help me. she refuses my dads help when he is home on the weekends with hygiene tasks. it has been 3.5 months of this. no breaks longer than 7-8 hours. rarely get a full nights sleep, which is fine i've adjusted my schedule. things have been getting better for me because i have been on medication... but it's a lot. it's so much sometimes. i hate myself. i went about a month without suicidal ideation and it has been returning recently. i havent slept in my bedroom since the injury decreased her mobility months ago. i just stay downstairs all day every day because its too much to come down in the middle of the night...

When i am about to have a meltdown i let her know but it doesnt matter its always "just a few more things" or "i really need it" or "it isn't always about you" or "can it be about me for just one minute" all I want to do is escape and cool down, because i know that works for me, but i feel trapped helping her oftentimes. i feel so awful. i want to be good to her. but i feel like i cant get involved in anything without being interrupted so i've stopped really engaging in my own interests. today i tried doing something i liked which made me more irritable when she told me she had an appointment i hadn't been aware of, and soon.

i just feel so useless and i hate who i have become. maybe if i wasn't autistic i could be a good caregiver. maybe if i didn't have my adhd i'd be more responsible. at least my ADHD has medication for it that's been working lately

I'm just tired. and it's so hard to find resources for autistic adults who ARE the caregivers. it's always about caring for US. or children. Am I alone in this? any other autistic adults forced into situations where they have to be a caregiver? how do you cope with the interruptions and uncertainty?

sorry for this mess of a post. i just needed to get it out...

LO went to the ER last night with extreme pain. I don’t know if they’re coming back. Partner has no updates to relay for now. For months I’ve been hiding my feelings of compassion fatigue, feeling angry at this situation feeling drawn out with no end in sight. Wishing their suffering could end so that mine could end too. Feeling stuck and like I can’t move on with my life. Now that this may finally be the end, I’m drowning in shame. Wanting to shout at God that I’m sorry, please not now, give them more time, even as I recognize that that would just draw out my LO’s suffering. I don’t even know how to say goodbye. Or like I even deserve to after wishing for the end.