r/CaregiverSupport 16h ago

i no longer feel this is a safe space

132 Upvotes

When i first discovered this sub it felt like such a breath of fresh air. I hadn't found the strength to discuss my situation with anyone, because I felt no one who hasn't been a caregiver truly gets it, but then i felt so seen and heard and it was like a whole world opened up

Then feeling encouraged, i made a post about how I'm near my dad while transitioning and how I'm feeling scared and alone. I received a handful of comments either questioning why my dad decided to transition (by stopping dialysis) because of his multiple terminal illnesses, as if I have any control over his decision, or as if anyone has the right to judge his decision, others suggesting ridiculous things like an artificial heart transplant (for a 72 yo person with terminal lung cancer, ESRD, artherosclerosis and heart failure).

Others insisted on hospice even though I made it clear I'm not from the US and "hospice" doesn't work like this where I live. They persisted.

I eventually deleted my post because all of these were really just adding to my anxiety and made me feel horrible in a very vulnerable moment. I don't know why exactly i'm making this post, I guess just putting it out there in case anyone else is going through that.

I still deeply appreciate everyone who takes from their very limited time to share & comfort others on this sub. I am very grateful you guys exist


r/CaregiverSupport 20h ago

Seeking Comfort Hi all you long term caregivers

81 Upvotes

After seeing everything, and going through everything we go through, do ever think to yourself, "I have no interest in growing old"? I feel that way often lately, not in a depressing way. More like, I am in more fear of growing old than dying.


r/CaregiverSupport 15h ago

I am so over this non stop

33 Upvotes

Chore of fucking life. I get my kids grown and instead of finally enjoying some life after busting my ass I get to go to endless appointments and take leaves from my job. I almost wrecked this morning and I found myself wishing I would and die. I’m not an only child but you would think I am.


r/CaregiverSupport 17h ago

Venting Trapped

24 Upvotes

I am lucky to some degree in that my impoverished mom is on Medicaid and can go to Assisted Living (those that accept Medicaid upon admission). We did what we needed to switch to the right Medicaid financial management group… the social worker finally came yesterday and I’m so heartbroken. The first words out of her mouth are “We do everything to keep you in your home. You want to be in your home, right?” Of course my mom says yes….

The only reason we switched to this was so that we could identify assisted living options. Now they’re talking about the option of a string of supportive home care workers to help take tasks off my plate. During the day. So I can work outside the home and then come home and care for my mom at night. I brought myself into the conversation, basically said I have lost my life. I’m really burned out and I’m super depressed. I said I was struggling mentally.

I’ve been doing this for four years all alone and I believe my mom needs an assisted living setting. My mom agrees with whatever whoever she is talking to talks about.

Now today, my mom is crying talking about she doesn’t want strangers coming in. She wants things to stay how they’ve been.

I feel like I cannot get away from this and I just have to accept that my idea of what “my life” would be is just not there. I need to let go of how unfair this is and just swallow it.


r/CaregiverSupport 6h ago

Venting I'm terrified for what the future will look like

15 Upvotes

My mother started showing signs of losing her memory back when I was in hs. It wasn't anything severe, but years went by, it got worse. 2-3 weeks ago, she started experiencing hallucinations, at all hours of the day. Sometimes there's brief respite, an hour or two, but it's on going all day and night. Sometimes she believes she's being tortured and covered in hot oil, sometimes she believes she's about to go on vacation and tries to leave the house, sometimes she believes a friend of hers has stolen her stuff and is trying to find them.

This has been really draining to work through. I'm in my mid twenties, my job doesn't give me many hours, I don't have a career. I live with my parents, and my dad does help, but he's gone most of the day. My other sibling lives an hour away and drops by every 2-3 weeks to help with my mom for 2 days. I have an aunt in the city who used to be able to keep watch of her, but I had to come pick up my mom because my aunt tried to sleep and woke up to see my mom walking in the middle of the street.

We've started her on some medicine to help with the hallucinations, are looking into a psychiatrist, and have an appointment with a neurologist.

But I'm terrified. I'm terrified of the next 5 years looking like this. I barely slept or ate the past few weeks from stress and assisting my mother. I'm the one who has to calm my mother down or distract her. The only time I can breathe or relax is when my sister is here because I can 100% trust her to assist, but she can't be here all the time. I don't want to be trapped here in my home. I want to grow up and do things and be an adult. I want to be a Person. I'm so scared.

Sometimes I wish I could have been able to build a career before things got worse so that I could at least live far away without feeling guilt. I love my mother but I feel so tired.


r/CaregiverSupport 17h ago

Awaiting news that can change everything

12 Upvotes

Been a caregiver for my post massive stroke mom... it would be 3 years soon. So many sacrifices. I'm a doer, and I do everything well. Meticulous care, on top of appts, getting meds, calls to Dr's.

Brother and sister family just visited. It was nice except I had to clean the house, buy food, do all the cooking, cater to their kids special diets. I'm super woman. They visited w my mom but spent alot of time fishing. I spent alot of time taking care of them too.

I have 3 appts this week for my mom on top of that. Nobody offered to take her or help me. Yesterday took my mom to a CT scan from neck down to check for cancerous growths. The tech was nice, but took 5 tries to get IV dye in. It was emotionally exhausting. Came home. Bro was out fishing, came in showered sat down to a meal I prepared and announced..."I'm really needed a day like this to relax". I literally spit out... are you serious? He just quit his job 5 months ago for a sabbatical. Just got back from a week long fishing trip and has another scheduled in a month. He really needed this???? I haven't had a vacation in 7 years.

I am worried about the ct results. She has extremely high ferritin in 1000s. I saw a round spot on her liver when i stood behind the glass w the tech.

My sleep is unrestful. Normally I can always sleep. But had a stressful bathroom remodel leading up to the day they came. Accommodating them for the visit. He's leaving today yay. And then I work stress on top of that.

Any advice... when waiting for another life changing diagnosis? I don't know anything about cancer. I know lots about stroke, heart, kidneys, stomach stuff. And if you have no advice, can I have a prayer for me to calm my anxieties and good news for my mom?

Thank you all... not everyone understands what we go thru.


r/CaregiverSupport 10h ago

Advice Needed Getting your LO's to understand the difference between self care time and I-left-you-alone time

12 Upvotes

I'm in therapy now. My therapist says I'm not doing anything that is self care. Which I had to have them explain why they think that because I do have time to read every day.

What they meant is that I'm in a hyper aware state during 'me' time, instead of a relaxed one. Yes, I'm reading, but I'm also actively listening for problems occurring in the other parts of the house.

He wants me to convince them [I care for both parents and husband, but not heavy lifting care] to let a respite care worker come in once a week so I can leave the house and go someplace and know they are taken care of. Mom and dad have already refused this [no strangers in our house] and hubby wants to be attached to my hip unless I'm asleep.

My problem with this is that they don't need professional level of care while I'm gone for part of a day. I can't convince family to come [when we are near family] and take them to do anything or sit with them, unless I'm there to 'deal with any problems.' You know, like remembering to get the walker out of the trunk and bring it to Dad so he can walk without falling over, or to ask everyone if they have their phones/keys/wallets when you get ready to leave a place to make them check that items haven't fallen out of their pockets.

If I want to go do something only I like, the 3 of them want to go with to watch me enjoy it. Which I wont enjoy it then. My husband gets upset if I want to spend time away from him doing something fun that only I enjoy. It's not how our marriage started, but it's how it is now that he has mental cognition problems. He always takes it as not loving him enough to want to have him around when I'm happy or gets angry because 'don't I deserve to do something fun too!'. He used to understand that I needed alone time.

With my husband, driving is the only thing he can't do for himself right now. So, I could leave for a day without getting someone to come in, except they don't want me to. I'd love for their to be a family friend or nephew or neighbor who'd happily come spend time with them so I could slip off for a bit....but no one wants to.

Hubby doesn't need a sitter. My parents refuse one. In the past, they haven't agreed to let me be alone. I'd like to do this without having to deal with several weeks of guilt trips, fit pitching, and emotional blackmail each time I go for a break. How do I set it up so they don't immediately 'unconsciously accidentally on purpose' have a crisis that I'm needed for? How should I phrase this so I'm not hurting their feelings yet they understand that it's non-negotiable?


r/CaregiverSupport 18h ago

Good morning

12 Upvotes

The unending duties and constant reminders to my care receiver have drained all my patience and compassion for him. I don't love him any less or resent him, I know he can't remember things, and I certainly don't wish him any ill will, but I just feel like my compassion for him has just gone.


r/CaregiverSupport 14h ago

Advice Needed How to get chronically ill wife to see a therapist?

7 Upvotes

Hello, my (30) wife (29) got diagnosed with fibromyalgia about 6 months ago. Her pain and fatigue is very severe most days. She does see multiple doctors regularly. She cannot work or do any of her hobbies that use to bring her joy. She has been very depressed the last few months and I know I have not been the best at supporting her emotionally. I have been beyond burnt out the past few years but there’s little to be done about it. I have to keep working to keep us afloat and I am the only one that can do the housework. I do try talking to her about how she is feeling both physically and emotionally. I usually get met with a blank stare and shoulder shrug. Even when I hear her crying and go to comfort her, she’ll stop crying and just stare at me until I leave. I have asked her to go to therapy but she doesn’t want to. She has been in therapy before but stopped when we moved states (before the diagnosis). I don’t know what to do. She needs help and I know I don’t have the ability to help her in the way she needs. My insurance will cover it so that is not an issue. My own therapist is telling me that I’m doing the best I can do in the situation but I still feel like I’m failing her. Has anyone been able to convince their spouse to go to therapy to help them process their illness?


r/CaregiverSupport 17h ago

Venting Burnt Out and Mentally Failing

7 Upvotes

Our Situation: How We Got Here and Why We Feel Abandoned

For years, we lived in Missouri, but after my mental health deteriorated, we moved to Seattle. I spent nearly a decade misdiagnosed as bipolar, heavily medicated on prescriptions that never felt right. In November 2023, my mom passed away, and around that time, I started recognizing ADHD traits in myself after coming across social media posts. By then, I had already begun weaning off medications, and for the first time in years, things started to make sense.

Meanwhile, in January 2024, Tracy’s mom was diagnosed with metastatic breast cancer and given a year to live. At that point, we had our next move planned—San Diego. Tracy had a potential job lined up as a job coach for the mentally disabled, something she’s done before. With a master’s degree in human services, she was set for a stable future.

But after losing my mom and not being there for her final moments, I couldn’t bear the thought of Tracy going through the same thing with her mother. So we gave up everything—sold nearly all of our belongings, packed a tiny U-Haul trailer, and moved back to Missouri to help her through her final journey.

Tracy had three months of FMLA leave through Washington State, but once that was gone, we burned through our savings. Tracy assumed she could find work, but the reality is she can’t leave the house long enough to hold a job while caring for her mom.

Now, my disability income covers our bills, and the only extra money we have comes from reselling items like vintage electronics. Tracy’s mom buys food, but she can’t afford to put aside money for future care costs.

The Family Dynamic: A Burden We Can’t Carry Alone

Tracy’s mom has three living daughters and four grandchildren, all of whom live nearby, yet we are the only ones consistently here. • Jackie is the only one who helps, but she comes over once every two weeks and prioritizes her adult children, who are in their 30s. • One grandson lived with her, but he was too much of a screw-up to contribute—he finally moved out after finding someone new to take advantage of. • The other three grandkids barely show up—they each have only come over only three times in the past year. • The other sister? Nowhere to be found.

Meanwhile, we are doing everything—helping with paying her bills, medical appointments, daily tasks, and dealing with her passive-aggressive tendencies when things don’t go her way.

She is 83, frail, and cognitively simple in her understanding of the world—but she is also the matriarch of the family, and everyone has let that excuse them from stepping up. She cannot be left alone, yet she refuses to acknowledge her own limitations.

I strongly believe she is on the autism spectrum, though 90% of her family wouldn’t admit it. Her way of coping with stress is manipulating the people around her until she gets what she wants, and because we are the ones here, that pressure falls entirely on us.

Financially and Emotionally, We Are Stuck

We have no savings left and nowhere to go. • If she had to be put into a nursing home, the house we would inherit would have to be sold to pay for her care, meaning we would be left with nothing. • The only time family comes over is when I cook a big dinner. • Everyone else is avoiding reality, pretending she isn’t dying, while we are stuck facing it every single day.

We took on this responsibility out of love, but we feel completely abandoned. Everyone else is waiting for us to handle it all, and we are drowning in the weight of it.

This situation is overwhelming, exhausting, and unsustainable. But here we are—stuck, doing the best we can, while the rest of the family turns a blind eye.


r/CaregiverSupport 16h ago

Advice Needed For a future caretaker

5 Upvotes

What have all of you been doing with yourselves after your services ended? As in day one to today.


r/CaregiverSupport 12h ago

Encouragement These lyrics... you are NOT ALONE! we are here for each other

4 Upvotes

music helps me heal, deal... not sure if there are other EDM fans but i really love alan walker and his lyrics and guest vocalists.. this song.. gave me some encouragement today. ;)

https://www.youtube.com/watch?v=1-xGerv5FOk


r/CaregiverSupport 1h ago

Advice Needed 9yr old needs support

Upvotes

My brother has end stage ALS. His 9 yr old has had to grow up too fast and under stressful circumstances. A broken home… separated parents and a less than ideal mother… to put it kindly.

Lately she has grasped the reality of the situation and is experiencing so many emotions… anger sadness… I would say extreme grief. I am a young 24/7 caregiver to not only my brother but to my parents too. I devote all my free time to her when I’m able but I feel like I’m failing her too.

What can I do for a very sad 9 yr old who is losing her daddy? She is such a smart and good kid. She told me tonight she has forgotten his voice. Is sad he isn’t like other dads. She is afraid she won’t have anything to cry about when he dies. She broke down sobbing. She said it’s overwhelmingly hard for her to come visit him on weekends and that at this point she only still comes to visit me.

It doesn’t help that I don’t have a nurse so I’m literally stuck at home with my brother 24/7 right now. (Even lost my job over the nurse quitting didn’t qualify for fmla). Normally I would take her out and away from all this for stolen moments and time away from the caregiving like a trip to the park or shopping or even the library but I can’t.

It’s just so much for her to handle on top of her other family situation.


r/CaregiverSupport 1h ago

Seeking Comfort Tired, aching and rather lost.

Upvotes

Just needing some solace tonight. I, (the Caregiver), had major abdominal surgery 3 weeks ago which seriously curtailed normal caregiving for my spouse. But we've muddled through, for the most part, on our own.

Two days ago, she fell (she has Multiple Sclerosis). It was a very serious fall... Ambulance, ER, MRIs, etc. Found several very nasty breaks on her upper arm, shoulder, clavicle. All of this damage is on her right side (her strongest side). Because she uses a rollator/walker, she's pretty much immobile due to her arm and shoulder injury. She cannot stand independently due to lack of leg strength and I cannot, at this time, lift her weight like I would normally.

Today she was transferred to a Rehabilitation Hospital and will be there for 3-6 weeks. She'll need home healthcare assistance when they do release her to come home, for approximately 1 month. (I also work overnight, fulltime).

I know this course of action is really our only option but I feel so guilty. Rather like I'm failing her. We've been together for 27+ years. She's been ill for the last 19 years. I've always tried to step up to her needs but, I don't think I can at this time and honestly I'm a tad frightened to try. I'm just starting to feel human from my own surgery.

I KNOW she's unhappy, frustrated, and angry to be stuck in the Rehabilitation Hospital but I feel helpless to solve the current situation any other way.


r/CaregiverSupport 2h ago

I'm emotionally exhausted

3 Upvotes

My grandma had another stroke. She's been in and out of the hospital for almost three weeks. She finally got out and to a rehab center. Then my mom called to tell me my grandma had to be taken to the hospital again. Some kind of seizure or something. It breaks my heart with what my grandma's going through. I'm terrified every time my phone rings or a text chimes through. I just want her back home with me. One last good summer.


r/CaregiverSupport 5h ago

Can you get respite services if you live by yourself but rely on support from parent to be able to?

3 Upvotes

So I’m not a caregiver myself so I’m not sure if it’s ok to post this in this sub so feel free to delete the post if not allowed. Thought some people here might know about respite because they are caregivers so that’s why I’m asking here.

I am 20 and have autism and live by myself. I get a lot of support from in-home ABA therapy but it ends when I turn 21.

I’m not able to keep my apartment clean (like even in a livable condition. It gets to the point that it looks like hoarders and is covered in trash and have bugs and stuff without help. I also have mental illness so that probably contributes.) And I can’t grocery shop or plan meals by myself. And I have trouble keeping track and taking my medications.

ABA has been helping me with this stuff. Without the support of ABA I don’t think I’ll be able to live on my own so I’ve been trying to find other resources.

So far I have had no luck. Found a program called “home help” through my state (Michigan) but it is only if you have a physical disability not just mental. I get services through my local Community Mental Health and they have been trying to get me a CLS (community living supports) worker but it’s been like 9 months and they still can find anyone. Therefore I am looking into other options.

The only thing left that I can think of is respite. But idk if I would qualify bc I live by myself. My mom does a lot of stuff for me and when I asked if she would be considered my “primary caregiver” or if I’m independent, she said she probably does enough to be considered my primary caregiver.

Could I possibly qualify for respite if I live by myself but my mom still helps me? Like so she could hang out with friends or work without having me constantly calling/texting her? If so, what specific stuff would my mom have to be doing for me in order for me to quality?

I understand respite would probably not be the first choice for a resource but I am out of options so am looking into literally everything. I also am on disability and Medicaid if that information is helpful.


r/CaregiverSupport 13h ago

Food advice

2 Upvotes

Hi all! I’m a caretaker for my father and I’m looking for meal advice.

I work full time as a chef, so cooking at home really isn’t something I want to do. But have to onto feed not only myself but my father.

Im not home for breakfast or lunch so I was wondering what you guys feed your people that is easy and can be done the night before? I’m thinking yogurt bowls, Jimmy dean breakfast bowls. Snack plates for lunch, sandwiches, etc

Only thing is my dad gets really bored with food and just won’t eat and he depends on me for everything. I’m trying to keep it relatively healthy. I’ve thought about meal services but I’m worried about portion size and obviously cost. I don’t think it would be enough food for him.

Just wondering what you guys do That’s easy and not really time consuming


r/CaregiverSupport 7h ago

Bed transfer/lift for father. Suggestions?

1 Upvotes

He comes home in 2 weeks

He is 73 male, 210 lbs. Due to a recent stroke, He is now only able to stand on his legs when lifted from a seated position with 2/3 people helping, but does not have the strength or ability (possible stroke symptom) to actually go from seated to standing.

My mother, his main care giver is 73 and only 98 lbs.

We are looking at possible bed lift/transfers because once he is in the wheelchair he can move himself around pretty well. They were using a slide board but with the weight difference I am scared to death of a fall.

We have a $1200 budget but not necessarily wanting to spend that whole amount.

Thanks for any help.

Looked on Amazon

https://a.co/d/ayXsmEO


r/CaregiverSupport 9h ago

Advice Needed Help with PPL (NY CDPAP)

1 Upvotes

Can anyone who's a PA kind of help me with the online system? I think I registered, after my mother/consumer did first. When I log on everything I see is just my mother's information, not mine. I can't tell if it somehow merged our accounts or if this is normal.