r/CaregiverSupport • • Jul 05 '26

Weekly Roll Call -Caregivers, Please Check In!

18 Upvotes

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

We see you all and appreciate you.


r/CaregiverSupport • • 5d ago

[Weekly Megathread] PPL Help, Questions and Advice

2 Upvotes

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


r/CaregiverSupport • • 13h ago

A friend just texted me asking if I want to get coffee this weekend...

150 Upvotes

A friend just reached out to me and sent me a short message. It went like "Hey, it's been a while! Any chance you're free for coffee this Sunday? Hope your mom's doing better!"

I'm staring at my phone and I don't even know how to answer that. Better? Nope. My mom has late-stage Parkinson's and she's completely bedbound. Two weeks ago, a bad pressure sore opened up on her tailbone, and my whole life collapsed into caregiving and fighting an open wound and skin breakdown all day.

When her message popped up, I was on my knees next to the bed, wiping the drainage with saline and opening up another dimora dressing so that I can replace it. My back is wrecked from turning her and I haven't slept more than a couple of hours in four days. My eyes are sore and stinging and the whole room smells like wound drainage and bleach. I haven't left the house in like ten days. Some days, I don't even get to shower properly, let alone sit in a cafe and pretend I'm just a normal person with a normal life.

I know she means well, but that tiny reminder that the outside world still exists broke the last of whatever was holding me together today. Had to lock myself in the bathroom so that I could cry a bit and I sobbed so hard I almost threw up.

I'm so fucking done with all of this. I'm really tired, and I hate that a kind message can make me feel this broken.


r/CaregiverSupport • • 11h ago

Anyone else parenting their parent(s)?

49 Upvotes

Or feel as if they are?

It does something really weird to you, psychologically (aside from the obvious), that I can't put my finger on.


r/CaregiverSupport • • 5h ago

My time as a caregiver is finally over and it’s a really weird feeling.

15 Upvotes

I’ve made a few posts before, but nothing too crazy I guess. Basically I spent the better part of the last almost 10 years helping my mom with cancer and then after she died my dad retired and then also ended up with cancer as it turned out. It feels weird, because on one hand, I’m finally done having to do all the caregiver stuff for people. But then on the other hand, now it’s just me and my cats and the house is really quiet. It’s weird because my dad would watch random videos and tv shows at all hours of the day and night and it was hard to sleep at times, because of all the noise. But now there’s nothing. My family came in from out of town to help me clear out the house to get ready to sell since I can’t keep it by myself. And I don’t know how I feel about all this change that’s happening all of a sudden. Like I’m glad to be moving on to the next chapter, but I’m sad that it had to end this way you know.


r/CaregiverSupport • • 6h ago

Vasc. Dementia 9+ Years

14 Upvotes

It's such a cruel disease, and it's gone on for such a long time I don't know how much more I can take. Nine years my mother has had vascular dementia and maybe mixed dementia. And it sucks when somebody says "Well I know you're having a rough time, BUT JUST IMAGINE HOW YOUR MOM FEELS." (As if I haven't spent nine years entirely invested in how she's feeling.)

Or I'll try to commiserate with someone who has also taken care of a loved one with dementia, and they'll say something like "Yeah, we've spent 22 years lifting and cleaning dad, he's 101 and still strong enough to yell at us, haha!"

And I can't tell them it's like a punch in the stomach to hear it can go so much longer. It makes me feel hopeless.

My husband and I couldn't have a few hours to celebrate our wedding anniversary tonight without my mother moaning: "Oohhh I NEEEED you soooo baaaaad!!" I'm reminded every day that she is being tortured constantly by a disease she didn't deserve, and she just wants me to live inside her skin with her or something. Nothing I actually do for her makes her feel safe and secure. It's the nature of the disease to keep her confused and fearful.

Dementia should come with its own automatic genetic switch that just shuts the brain off instead of killing it so horribly slow. The internet says "average 5 years" for vascular dementia. I doubt that's true. I don't know where that number comes from. I wonder what the record is. A grim record it would be.

F dementia! At least now I am acutely aware of what other families are facing in their private lives. My heart goes out to everyone.


r/CaregiverSupport • • 8h ago

Quit on first day feel like a failure .

20 Upvotes

I was a care giver for my brother for years then he suddenly passed away from a brain hemorrhage popping overnight taking his life . I decided maybe to get into caregiving because it’s all I know for 10 years.. my first day with a a disabled adult around 30 they send me to his school with his dad with minimal instructions I kind of was just there to guide him around but he would not listen to me and was very strong would push me around and try to walk into traffic I had to use my full strength to stop him the dad picked us up from after school took us to a park I thought he would relax more but he was stealing peoples food and trying to jump into the river finally his dad came after 30 minutes and picked him up he said are you getting the car so you can finish the shift (2hrs left ) but I was so burnt out I said I had to go pick up my kid from school and he gave me a smirk small laugh and drove away ..I called my supervisor and quit immediately after taking care of my brother for 10 years I don’t know if I can do this line of work anymore going to look for different career paths but god bless you all for what you do I have the most respectful for caregiving after today.


r/CaregiverSupport • • 12h ago

My dad changed his mind about hospice

23 Upvotes

My (35) dad (72) has stage 4 cancer. I'm an only child and my mom died a few years ago. He has far outlived his initial prognosis and has largely had pretty good quality of life and independence until a few months ago. After several recent hospitalizations (GI bleed, falls, etc), he told me he wanted to stop treatment and focus on comfort measures. He's incredibly stubborn, hates "being a burden," etc etc. There have been several periods over the course of the disease where I've had to stay with him short term and take care of him, and it's been awful for both of us. It felt like he was making the right decision for him and his quality of life. I was obviously sad but honestly it was a huge relief.

Well, his oncologist has convinced him to "not give up," and that this decision is "premature." So now he's decided to forego hospice and be in active treatment, with little convincing evidence that it's going to actually improve his well-being. I fully believe she can extend the length of his life, but I don't think it's the kind of life he wants to live. So now he's back home, sleeping 18+ hours a day, eating next to nothing, has lost 30 pounds in less than two months, barely mobile, etc. He has okay cognitive capacity, but he's easily confused, irritable, forgetful, etc etc. We're lucky that he can afford some outside help, so I don't have to be here round the clock, but I'm already exhausted.

I feel like a monster, because I obviously don't want to talk him out of wanting to live longer. I just don't think this is what he actually wants.


r/CaregiverSupport • • 5h ago

I intend/try to be strong. Try not to complain.

7 Upvotes

But I strive for 24 hours alone.

Even better where someone caters to me like I do to my SO.

No one demands the care I give.

Im digging my own grave.

Not seeking advice…just speaking to the abyss.


r/CaregiverSupport • • 1h ago

Dad thinks air freshener will fix urine odor around his bed

• Upvotes

Rant: My Dad (86M) is unable to walk post stroke and lives life from his home hospital bed. The urine odor around his bed has been challenging, to be polite, for some time. He thinks that the resolution to the odor is a new air freshener. It isn't. There isn't enough air freshener to eliminate the odor despite spraying regularly.

The reality is that he needs his adult diapers changed three times a day, without exception. Despite repeated pleas to do so, he won't allow a mid-day change unless he has a #2. By evening, the urine odor is so strong; it is stomach churning.

Does anyone else struggle with urine odor from the person they are caregiving for? I'm at the point of masking with some Vicks Vapo Rub (menthol smelling ointment) lightly spread inside the mask just to cope. All suggestions are welcome.


r/CaregiverSupport • • 1d ago

Someone called Adult Protective Services on me (a vent)

318 Upvotes

My husband and I (both in our 40s) have been caring for our next-door neighbor (74M), who is now in the final days of his life due to cancer.

A few years ago, he asked us for a ride to his first chemo appointment. That turned into us taking him to ALL his chemo appointments, which turned into taking him to all his other medical appointments, inviting him over for holidays, and eventually helping him pay his bills.

He has no close family, was never married, has no children, and was self-employed most of his life, so he has no retirement to fall back on. He's a lonely but incredibly smart guy who was struggling, and we knew we could help. So we did.

Now he's dying.

When his doctors told him chemo was no longer working, he named me as his power of attorney. About a month ago, his condition deteriorated very quickly, and he was placed on hospice.

Since then, things have been HARD. He's bedridden and incontinent, and we've had to learn on the fly how to manage adult diapers, keep him clean and comfortable, and care for an increasingly agitated adult. We've been doing our best to figure it all out while watching someone we've grown to care about decline.

I've reached out to every resource I could find. Our hospice provider offers people who come to give him bed baths three times a week, so we signed up for that service.

On the third visit, the caregiver was 45 minutes late calling me to say she'd be another hour. I tried to be understanding, but it was frustrating that she hadn't communicated anything until well after her scheduled arrival.

Then, TWO HOURS after that revised arrival time, she called again to say she was still running late and would just “text me later” to let me know when she was coming.

We had other family commitments that day, so I told her we'd need to reschedule for the next day.

The following day, I was talking to someone at the hospice office, and they asked how things were going. I mentioned that we'd appreciate more consistent bathing times and explained what had happened. The nurse was shocked and told me it shouldn't have been handled that way. She said she'd speak with the caregiver.

Today, APS showed up at my door. I'd been reported for abuse and neglect.

The report alleged that I regularly leave my neighbor in soiled diapers and that he has horrible rashes.

I was absolutely floored.

My neighbor has always been a bit of a recluse. Almost nobody comes to his house. As far as I know, the only people who have been inside and seen his condition over the past month are my husband, me, and the three hospice staff members who have visited.

And I can't help but notice the timing.

I complained about the caregiver's conduct to her supervisor yesterday. Today, APS is at my door accusing me of neglecting the very person I've spent years trying to help.

I have no proof that the caregiver made the report. But given the timing and how few people know the details of his care, I can't help feel like it's an obvious connection.

If there is, I honestly don't even know what to say. We're trying to care for a dying man, and now we're dealing with an investigation on top of everything else.

Today was already hard. Caregiving is exhausting, emotionally draining, and sometimes just plain heartbreaking. You're trying to keep someone clean, comfortable, and safe while watching them deteriorate in front of you.

And then, in the middle of all that, there's a knock at the door and APS is standing there investigating you for abuse.

I just couldn't believe it.

Thankfully, the APS worker was kind. After talking with me, she indicated that she thought the case would likely be closed.

As luck would have it, I'd actually asked our hospice nurse to come by that very morning to check on my neighbor and help me with his catheter. She'd examined him just hours before APS arrived and said he looked “A-OK.”. It also helped that the report claims he was in pee soaked diapers, but my neighbor is currently catheterized.

I'm grateful for that timing, but I'm still shaken by the whole thing.

We didn't have to do any of this. We could have given him that first ride to chemo and gone on with our lives. Instead, we kept showing up because he had no one else and we couldn't let him be alone in this.

We're learning as we go, asking for help when we need it, and doing everything we can to give him some dignity and comfort at the end of his life.

I never imagined that helping someone die with a little less loneliness could end with me being investigated for abusing him.

I don't even know what I'm looking for by posting this. Maybe I just need to vent to people who understand how hard caregiving can be. Because today, on top of everything else, I feel completely gutted.


r/CaregiverSupport • • 16h ago

My partner who I am caregiving to has turned abusive

20 Upvotes

I moved in with my partner to caregive to him on a more consistent basis. But with the understanding I was still free to come and go if I needed to, since I have family and friends in other areas that I visit.

Anyhow, one night, he had an altercation with his landlord over unpaid rent, and he fell down the stairs. Ever since then, my partner has been abusive towards ME. What have I done? I'm the only one here helping him with his back pain/ back issues. Not a single family member or friend has stopped by to help.

One night, he slammed my foot in the door. He started to verbally abuse me constantly, calling me, "stupid," saying how I have "no brains," etc. He is probably correct because if I had any brains, I would leave him and never turn back.

He nitpicks at everything I say and do and has started ordering me around. I'm "not allowed" to just chill and relax. I got screamed at last night for taking a nap on the couch. Heaven forbid!

Again, all of this started after the altercation with his landlord where he fell down the stairs. He should be fighting with his landlord, not me. I have been the only one here for him taking care of him. I have done nothing wrong and nothing to deserve this.


r/CaregiverSupport • • 4h ago

Caregiving with small children

2 Upvotes

Mom 77y- stage 4 lymphoma and dementia. On hospice care as of two days ago.

She lives in a small upstairs apartment with my brother who has a physical disability. He can give her meds, do laundry and reheat food.

Right now my sister and I switch going every other day to help shower her, bring them food etc.

I have two small children I have to bring with me when I care for her as my husband works. This isn’t working as I can’t care for 3 people simultaneously.

How hard was it for those of you who brought in your LO when also having small children?


r/CaregiverSupport • • 21h ago

Good News? Great I’ma Cry in the Car

47 Upvotes

My elder is 5/6ths of the way through chemo for some very aggressive cancer. He saw the oncologist yesterday and got great news — the tumors have significantly shrunk snd there are no new ones! After the 6th treatment, he’ll be able to move to a “watchful waiting” status! He’s 85 so this response is AMAZING.

Both of us got in the car to come home and I felt…odd. I wanted to cry but I couldn’t identify any emotion under it. I finally said to him, “I’m so happy for you but I feel like I might cry a bit.” To his credit, he patted my arm and said “Me, too, love. Now I have to decide what to do with the rest of my life because it seems I’ll be here a while.”

His largest tumor was on his spine so he’s now in a wheelchair while he learns to walk again and he needs 24/7 attendance. I schedule carers for him and do some direct care myself. His favorite carer met us at his house and took him inside and I just sat in the car and sobbed.

I have no earthly idea what’s wrong with me. I mean, abstractly, I know what’s wrong, I have trouble identifying my feelings in the moment and I’m in therapy and all, but geez. Absolutely bawling. I still feel kinda unbalanced.

Just wanted to share bc I can’t really talk about this anywhere else.


r/CaregiverSupport • • 4h ago

Could use some hope

2 Upvotes

LO just admitted to icu lactic acid went from 3 to 5 to 7.2 ugh .


r/CaregiverSupport • • 7h ago

A Disabled Woman (polio) Fighting for Her Family’s Survival

Post image
3 Upvotes

r/CaregiverSupport • • 1d ago

My 19 year old son has psychosis and I feel trapped. I can’t live like this anymore.

105 Upvotes

I’m a mother of three. My oldest son is 19 and has struggled with psychosis since 2020. He was officially diagnosed in a hospital in 2023. His symptoms returned about a year later, and despite being medicated, things have been getting worse.
I’ve done everything I can. He has a psychiatrist, a therapy team, and specialized support services. I take him to appointments, drop him off, pick him up, and constantly encourage him to become independent. But he refuses to work or drive.
He receives a monthly government allowance because of his condition but refuses to contribute to the household. Instead, he spends his money on games and restaurants while I’m trying so hard to save money and provide for my other children.
He expects me to drive him to church, school, and anywhere else he wants. He believes it’s my responsibility as his mother, and when I refuse, he argues, shames me, and makes me feel guilty.
Every day is the same exhausting cycle. He becomes delusional, calls everyone out, disrespects me, argues with his younger brother, and constantly fights with his stepfather. Then he apologizes, promises to change, and within hours or days we’re back to the same situation.
His delusions revolve around religion and God. He believes he’s specially chosen and protected by God, and that nobody can do anything to him.
We’ve called the police multiple times because we simply don’t know how to calm things down anymore. They usually bring someone from a crisis team. Today they came again, and he was shaking and nearly crying while speaking to them. But afterward, he went back to praying and said nothing happened to him because God protects him.
He’s never been suicidal or physically abusive, but the emotional toll is unbearable.
I’ve even created a separate living space for him in our home, with his own living room, TV, bathroom, and a private door leading outside. All I’ve asked is that he respect my space upstairs and give me some peace. But he constantly comes upstairs to talk, interrupt, and involve himself in everything. It’s like he genuinely cannot help himself, and I can’t even have space in my own home.
What makes things harder is that he presents himself so well to his treatment team that they think he’s doing fine. They don’t see what we deal with behind closed doors every single day.
Everything revolves around him. His beliefs, his arguments, his demands, his feelings. I’m constantly walking on eggshells.
I have two other children who deserve a peaceful home. I deserve peace too.
I love my son, and I’ve spent six years supporting him, forgiving him, getting him help, and hoping things would improve. But I’m exhausted. I feel like my life stopped in 2020.
I can’t throw my mentally ill child onto the streets, but am I supposed to spend another 10, 20, or 30 years living like this?
Sometimes I feel guilty for wanting him out of the house, but I desperately want my life back. I want to enjoy my other children. I want to wake up without wondering what argument is waiting for me.
I don’t even know anymore where his illness ends and unacceptable behaviour begins.
I’m not looking for judgment or to be told to have more patience. I’ve been patient for six years, and I’ve reached my limit.
Has anyone been through something similar with an adult child experiencing psychosis? Did supported housing help? Did they eventually become independent? What do you do when you’ve done everything you can and genuinely can’t live like this anymore?


r/CaregiverSupport • • 10h ago

Violent Behaviors on a 21 yo guy, HELP

3 Upvotes

Good afternoon everyone, I've been caregiving a 21 yo guy, this guy has Developmental Disabilities. He doesn't talk unless one or two things, he walks -and runs- independently and he is supposed to do his things independiently, but he loses focus quickly and get distracted. He's too stubborn

He use to be challenging with me when I tell or order him things to do like going to the bathroom (he uses to get his pants dirty). He also has this sexual behaviour when he is getting called he get excited, he laughs and doesn't do nothing.

Do you have any strategies which can be useful with people like him? Thank you


r/CaregiverSupport • • 12h ago

I’m so tired

4 Upvotes

I’m taking part of my maternity FMLA this month and I’m exhausted.

I’m a single mom, my baby is teething, and I’m home alone with her and my autistic adult sister.

For the most part, my sister can take care of herself, but she needs so many repeat instructions and she takes a long time to process things. She’s also physically slow and takes a long time to do things. I had to take her to a doctors appointment this week, and now they’re asking her to do daily blood pressure readings at home. This morning I found out she’s been trying to do it by herself, and she’s been placing the cuff on her forearm. I gave her step by step instructions and showed her how to do it twice and she still got it all wrong.

I’m living with my parents because I had to break my lease when I left my daughter’s dad, but being with my sister is so tiring. There’s days I feel like I’m responsible for a baby and a child. My parents refused to look for services for my sister when she was a child because my mom felt like she could handle it. When she turned 18 they tried (or rather, I had to try) and she was denied. I told them this would happen and they didn’t listen and now I’m actually living my nightmare, trying to raise my own family while still being responsible for her in a sense. I’m so grateful that my family is letting me stay, and that my mom is helping by by babysitting when I’m at work, but I’ve been feeling so much frustration towards them because I feel like I’m carrying the brunt of their choices. My mom is also not here because she and her siblings take turns caring for my grandmother abroad. Another consequence of just letting things play out.

And then today, my baby spit up formula even though she hadn’t done that in like 2 months. Completely drenched us both and the couch. Meanwhile, my dad was taking his daily coffee run with his friends and my sister was working out outside. I was supposed to take some time this month to look into opening a college savings account, and changing my own retirement plan because I don’t want my daughter to be an adult and be burdened with dealing with me in my old age. I haven’t even been able to take care of the actual responsibilities I wanted to take care of this month, because we go that stupid medi-caid letter saying everyone whose receiving benefits needs to have a job. My sister who hasn’t worked in 10 years, and who was encouraged to quit every job she’s had because my parents didn’t want to deal with her complaining, has to get a job. Another thing I have to figure out for her.

I didn’t want my life to be like this. I’m sad because this is not the “maternity leave” I wanted. I wanted to wake up with my baby in my own apartment, to have spaces built into my home for her, and I can’t really do that here. My parents and I are trying our best to do that, but I’m just so sad and disappointed in myself. My baby deserves better. Right now, she doesn’t know better. She’s happy to be with me and my family, but I’m so exhausted. Everyone keeps telling me to stay here as long as possible for the financial benefit, but I am so tired of the same thing every day. I worked so hard to move out and my friends and extended family don’t see the day to day of living with my sister. I think everyone is chalking up what I feel to PPD. And I think there’s some truth to that, but everything else outside of being a new mom is adding so much stress. Starting with my job and ending with my living situation. I called my mom to vent a few days ago, and she got mad at me and told me to just help my sister. That’s always their go to. To help each other out. As if having a teething baby that doesn’t nap unless she’s being held isn’t responsibility enough.

Even though I’m in therapy, I think that can only do so much when my living situation is like this.

And I don’t even know if I want advice. My sister never got a formal diagnosis and she’s an adult, which means she has full say in her medical care AND requesting any type of services. She has a doctors appointment next month where we plan to discuss an actual autism evaluation but I’m honestly not holding out any hope for that anymore. She will agree initially, then goes on social media and reads that Trump and RFK Jr. want to send autistic people to concentration camps (I hate Trump but she’s the only person I’ve ever heard say this, and she will also read things, misinterpret them, and tell herself it’s worse than it actually is) and then she denies all help.


r/CaregiverSupport • • 21h ago

How to deal with resentment against family

17 Upvotes

Hi, 12-14 years ago (2012-2013) I acted as a caregiver for my grandfather. It wasn’t easy as he had to go to the hospital every night only to be discharged every morning. I was still in college and had to balance class, taking care of him, as well as a girlfriend at the time. Needless to say, I crashed out. My sisters didn’t need to take care of him as my parents said they should focus on their jobs. Once after drawing blood the doctor didn’t stop the pressure correctly and my grandfather was walking 10m down the hospital hallway with blood dripping down, that flashback still scars me. My cousin came back from overseas 6 months before his death, and got the house from him. I got nothing except terrible grades, an ex-girlfriend, and (recently diagnosed), cptsd. Fast forward a decade later, everyone except me is doing well, married, have children, have a nice house, great careers and etc. I keep getting told how terrible I’m doing compared to them (I work in a grocery shop atm after a schizophrenia episode). My parents are also aging, and I fear the responsibility of caregiving will once again fall to me. I hate everyone in my life, especially knowing that they didn’t have to suffer what I did.


r/CaregiverSupport • • 10h ago

What should I expect?

2 Upvotes

My dad has Parkinson's Lewy Body and has been living alone and far away for quite some time, but finally that's changing and he's moving closer to me. For years I've recommended he get a caregiver, even just a few hours a day, but he's always resisted and from afar I didn't have much ability to influence. I'd love some advice from the community:

- Any tips on how to lower his resistance to having a carer?

- Anything that helped you make the process as smooth as possible for you and them?

- I've never searched for a caregiver before. What are the green and red flags I should look out for?

- Anything you think I should ebready for?

P.S If you're caring for someone with Parkinson's Lewy Body and have some general tips please share - sadly I know things only get worse and it's a tough journey ahead. Hope ya'll had something to smile about today!


r/CaregiverSupport • • 19h ago

Idk what to do except watch and wait.

5 Upvotes

Ive been living with my aunt for about 2 months now. I noticed immediately how often she forgets things. sometimes its little things like where she left her phone, what she came downstairs to get, where she left her bible, conversations we had an hr ago. In that time I've also noticed she forgets to eat, she forgets her train of thought more often. Everytime I point it out she fusses at me as if I made her forget.

Now idk her medical history but im starting to think this isnt the first time its come up and someone on her care team mentioned her memory issues being a concern. Because she flew off the handle on me last night. Im genuinely concerned though. She swears she has a sound mind and I'm not saying she doesnt. I am saying her forgetfulness is concerning given her age and that she's often home alone.

Idk what to do or how to even address it bc she's so prideful and i dont want to make her angry. Im worried though. Sincerely and it seems like I'm the only one who is.


r/CaregiverSupport • • 1d ago

Well, I’m back…

39 Upvotes

Mom died in May 2025, and I was able to go back to work in January 2026. Things were going pretty good up until April 2026 when I was diagnosed with breast cancer. Went through treatment for that and now surprise, my husband’s 91 year old father needs a pacemaker and aftercare. Husband’s sister and brother in law want nothing to do with his physical care, even though they have more money, a more equipped home, and are retirees.(oh, AND she is his P.O.A.) My husband works full time and I work part time. Here we are 4 days in and we are already fighting because I took some time for myself today on my only day off. After 3 straight days of cleaning piss and shit and working. Super excited to be going through this journey again. (Sarcasm, in case you missed it)


r/CaregiverSupport • • 19h ago

Hospice mindset advice

3 Upvotes

Hi everyone

I recently made a post on here regarding my mom who is late stage colon cancer, and i’m worried we’re reaching the finals weeks-months of her journey. She’s refused recent hospitalization even though her oncology team and doctor greatly emphasized she needs to be under medical observation and is under high risk being at home.

If anyone’s interested in understanding the context and situation more, here is the post i made.

One reply stood out to me on one of the other subreddits i posted on about hospice being a mindset. I mention this because a lot of people suggested it’s time for hospice or at home palliative care for my situation. Unfortunately i live in eastern europe where this type of care is no where near as developed as in the west, and after doing extensive research we don’t really have any resources for this other than private care that we cannot afford or at home palliative care which is a very bureaucratic process with a waitlist (that the doctors haven’t even brought up or suggested even though you need to be referred by the oncological team to apply for this)

With that being said i’m looking for advice from how to create the best “hospice” like state in the home and ensure her comfort. She’s already on pain management meds, we change her diaper and clean her, try to keep her as comfortable as possible and eat when possible (even though her eating is max half an ensure and 5 tbsp of clear broth a day). We’ve also stopped fighting her on smoking as we don’t want to take this last pleasure away from her (she sleeps most of the day and cannot walk anymore, but once or twice a day she will be asked to be lifted up from her bed onto her wheelchair to be taken out to the terrace and have a few cigarettes, we used to argue with her about quitting but at this point realized we’re doing more harm than good by arguing w her ab it)

What else can we do to create the best experience possible with our resources?


r/CaregiverSupport • • 17h ago

Looking for community

2 Upvotes

Heya everyone. I am not sure what I want out of this post. Maybe to vent, maybe to just feel like I can do something different other than the daily grind. Definitely community.

I am 31f. I was homeschooled my entire life in a rural town. Then I promptly moved to a big city at 17 for 8 years. That experience, along with a lot of others, especially getting to know different kinds of people and ways to live, changed me a lot. I'm really proud of the person I have become now. I feel quite confident, in control of my effects on my life, and am growing in a direction I want to. I enjoy direct communication and rejection no longer scares me like it used to.

Maybe I'm... is the word jaded? Irritable? I don't know. This year has been monumental for me. I've changed and improved most every aspect of my health, mental and physical, which has been fantastic. I have more energy. I'm no longer depressed to a point I feel like I'm dragging bags of rocks around. I am somewhat like... the world is my oyster I just need to make a flexible plan. It has been going well.

I guess what my "confession" is, is that I'm frustrated. I am from a very small family, that grew up like something of a cult with minimal social exposure. They are all (all being 5 people that I still speak to and care about, and have influence over as we are close) intelligent and kind. They have given me support to get where I am today. I have always felt that I wanted to be prepared to return it in kind some day. That does not mean I am minimizing the amount of effort I've put into myself.

By 19, I was fed up with being taken advantage of or taking wrong steps as I was very gullible, poorly socialized, and deficit in different skills. I stumbled around with different issues but studied social skills, health, and what I needed to develop myself as who I wanted to be. I feel extremely lucky and proud I've been able to do so. I do not expect perfection. Just functionality and some enjoyment of my life.

Maybe this is just yet another change I am settling into. I am the little sister of my family, the youngest with my mother and aunt being between 60 and 70. I am changing my dynamic in my family as the golden child and emotional quick fix. I have always been the person that was quick to smile and be agreeable. I have been more prone to state my true feelings and solutions as they come to me as opposed to managing my families emotions. They are, like I said I was, poorly socialized, prone to severe anxiety, with health issues.

My ability to problem solve is something I'm extremely proud of. And with Google, jeez, it comes easily to me generally. I am super happy that I have been able to influence them and help them make big changes. Not even just because "I need to, or it's my job" but I care that they don't do things that are genuinely BIG problems, or helped them settle to prevent serious mental issues.

At this point... maybe I'm just tired. I'm working on my development as much as I am others, not just for their sake to be nice, I understand allowing natural repercussions and not saving people from their decisions. Its things like.... OK, I'm going to be your caregiver. I am not going to allow you to simply make this giant financial decision with me involved that will be an issue and my responsibility. So not only am I doing the research, I'm educating, handling my own emotions, and theirs in one way or another. It has taken time to settle things. As a person who never frowned, often, even my expression is read as omg what did I do wrong? And I gently correct it as I see it that I am just changing and this is how things are. They are all making progress.

Maybe, tldr, I just "wish" (my father in his way, would say wish is a stupid word, you have to make it happen) someone would have done these things for me or I had more people around me who understand isolation. I wish, that I didn't have perspectives I do and could allow people to be but it does come at a significant cost to me, and I've always allowed other people to run me over and be the one fixing it. I also find it difficult to do basic groups, though I've mostly done mental health ones, because I find that I contribute more than I receive for information and support. I don't mind it. But it's not what I'm looking for.

I am slowly developing some relationships in my community, though they also seem to half want something timewise from me or labor. I do refuse and it's fine but.... I don't know. I guess I'm just weird. Maybe it's a mental thing I'm not seeing. My therapist seems to understand but I'm not seeing him often enough, it's once a month and I do not have resources to see someone more frequently nor do I want to change to someone that gets me even less. I live rurally now and do not have options, and am not interesting in free online therapy as their accreditation can be spotty. Maybe I just don't want to be alone in my feelings as I've spent much of my life that way, and am navigating the transition of becoming my parents parent in a way. And for others in my family, the go to person.

Tldr: I am grateful. I'm making huge progress. I'm managing my care. I'm happy. I'm allowing myself breaks. But I. Am. Tired. And emotionally overwhelmed. Often it is more at night I struggle when I am done being... first thing that comes to mind is "mom" as I've had step children previously in a long term relationship. Adopted a girl who lost her parents in a court of law. Anyway at night, sometimes I just want to be in company of someone who knows. Im very lucky to have a friend that's available that gets it, but I do not want to put all my needs on one person. Need balance.

Thanks for letting me ramble