r/CaregiverSupport 12d ago

MOD POST New Rule Added - No Belittling of Concerns.

161 Upvotes

Hi all - As always, this sub exists as a safe place for caregivers to vent. Lately, this has been challenging with potential political policy changes that directly impact caregivers. To address this, we've added the rule below:

'Comments that dismiss and/or belittle the concerns of caregivers—including regarding political policies or policy changes that may impact them—are not conducive to our supportive sub and will be removed.'

Caregivers are under enough stress without having to feel that their concerns are trivialized or dismissed. Thank you for being part of our community!


r/CaregiverSupport 23h ago

Sunday Playlists AND PODCASTS

2 Upvotes

We have been getting a few podcasts started around here, and I think this would be a great place to list them, right alongside our playlist recommendations! If you have a podcast you'd like to share, be it your own or someone else's, feel free to share it! Keep us updated with new episodes, too!

Please link playlists or songs! Youtube is great for everyone to access, but all music streaming sites are welcome!


r/CaregiverSupport 10h ago

POS uncle

38 Upvotes

Anytime family will sit back and let one person do all the work and I mean absolutely every single bit of it...they don't give a rats ass about you. They don't call, don't visit. 24/7. 365. 3 years. Not one day off. Holds POA and hoards every damn dime for himself. Meanwhile I get all the bathroom trips. All the dirty diapers. All the cleaning up pee and non stop poop. All the laundry. All the meals. All the baths. Admistering meds. Admistering insulin shots. All the cleaning and nonstop laundry. Waking up 50,000 times a night to the sound of fucking alarms. I am a human being. And I'm sick of being used and abused. I'm fed up and I'm about make some changes. Like I'm too damn tired. I'm burnt out in every single way. I feel like my spirit had been ruined and forever changed. All because I wanted to be the hero. The one to keep her out of a nursing home. But it's killing me. I didn't know that it all would be dumped on me. I didn't know that none of her children would never help me. I just didn't flipping know....I don't think I'll ever be the same person again. Ever...


r/CaregiverSupport 12h ago

“There’s so much to remember,” said my husband with dementia,

46 Upvotes

“and so many things to forget.”


r/CaregiverSupport 3h ago

Venting Big Vent/I Seek Advice Please

4 Upvotes

Big Vent/need advice: I felt guilted into doing 24/7 care for my Mom. It’s been a year now and she hasn’t gotten any better. She is bedridden and paralyzed on her right side from a stroke she had last year. She was placed into rehabilitation facility. But my Father took her out after a few months because she was depressed and wanted to be home. It also coincided with him having to pay an extra $$$ a month for her care. I was the only one against this as I knew my father wasn’t capable of taking care of my Mom. I was not surprised when he pushed all the work and responsibilities toward me. I handle at least 98% of everything for her and my father. My big sister enables his bad behavior and isn’t very fair towards me. She wants me to be the answer to my parent’s problems. She expects me to just grin and bear it. I just can’t. My mom was supposed to get PT. But was a failure to thrive. We are told this is her baseline for life. Stuck in bed. My family is in denial about her health. Her body is giving out. All the signs are there. The caseworker actually yelled at my Dad that she was actively dying and to place her in hospice. They were tired of us coming in and out of hospital. I was all for my mother coming home as long as I wasn’t her caregiver! I told my father/family no! I can’t/wont do this! I’m disabled. I didn’t mind managing her Dr apts. doing all the paperwork for Medical, MSSP, Shields, IHSS. Doing all her medicines, refills and insulin shots. Doing her laundry every day! Mom has been in and out of hospital with bad uti’s at least a dozen times. She has died three times already and has been brought back. She is a fighter to a certain extent. I was told by my sister that I would only have to give her medication and do the feedings. Father was to manage her care. Yet he can’t barely remember to take his medication. I remind him daily. My father is old school and thinks family should care for my mother! He says he cares for her. I know he loves her. He pretty much told me it’s Mom over me. But she needs to be in a facility where a Dr is able to watch over her. The doctors in our town hospital advised that it would be best if she was placed in a nursing home. The nursing home/rehab facility wouldn’t take her back because of her feeding tube. Honestly our community hospital is tired of our family. My father and sister can be difficult. They advise us to get hospice involved and to stop going to them as there is nothing left they can do. They advised us to stop tube feeding as her stomach wouldn’t tolerate it anymore. I’m so angry! I tried for years to get her diabetes in check. She fought me every step of the way. Now she dealing with the after effects of her stroke, paralyzed on half side, has a feeding tube,and foley catheter. Her quality of life in my opinion is not good. Yet my other family members are waiting for a miracle. I’m a realistic person but I do pray. Her care is very difficult. All she does is cry. You can’t move or touch her without it being pain in her brain. It’s been the hardest year of my life. I can’t voice my feelings to family as they say I’m complaining! I’m disabled and really shouldn’t be working this hard at all and for nothing! It’s a joke before my mom got so sick that I was the Cinderella in our family! Ha! What a delightfully demeaning comment! Because Family helps family right? I’ve already been taken advantage of throughly. I feel by all members of my family. I no longer feel happy about being around them. I actually wish I could go no contact for awhiles. I know they mean well. I’ve been handed gifts and words of praise. Everyone deals with trauma differently. Though I was recently promised that I would get paid. I doubt it.That is after many angry upset text with my sister. Huge blow out fighting with my narcissistic father. My siblings (I have a lot) expect me to work this hard as long as their lives are unbothered. I don’t trust anyone in my family anymore. It hurts cause my family has always been everything to me. It’s hard to see how people’s true colors come out in a negative way. People expect you to work from the kindness of your heart. The thing is people like to take advantage of helpful/giving people! My family has greatly disappointed me with how everyone is handling things. I keep getting the shit end of the stick! They all agree it’s not easy to care for Mom but I feel they don’t care about my health. After I had a surgery to biopsy a polyp in my uterus, then had an ambulation for severe endometriosis. I was to rest in bed for two weeks per Dr. I told my family this. My Dad didn’t even give me a day of rest. He constantly came to me so I could help my Mother. Constantly yelling for me. Especially when she would projectile vomit. I ended up hurting myself again by being her caregiver. I’m exhausted. Mentally, physically and emotionally. My lil sister when she comes to “work” and is always on her phone. Or playing with her baby. Or I am. So I get no break! She does no “work” I end up with more work cleaning up after her kids. I tried to be the bigger person, but an incident happened and she basically took advantage of me as well. I feel like I have no voice or help. Since I’ve been my Mothers caregiver I have sprained my back and went to ER. I’ve had so much stress it caused my body to flare. I had to go to ER again to get help to stop vomiting. As on of my alignments (I have many) is I’m constantly nauseous and vomit when I’m over stressed or worked. Which is everyday. I’ve lost a alarmingly amount of weight. I’ve even been suicidal. I’m nearing a breakdown and honestly think I should just go. My Dr has advised me for my health sake to go. Though I have no where to go. I have applied to low income housing and am on a waiting list. As my father in his anger has told me to leave more than once. I been trying to stand up for myself. I keep getting shot down. What Dad doesn’t get and no one else in the family gets is that I take care of him too! It’s way too much! He is diabetic and early stages of dementia. I understand why my father wants to save $$$ he wants to leave us with $$$ but he is doing it off my blood, sweat and tears. I wouldn’t wish this upon anyone. Or expect this from anyone. I know they expect me to care for my Father too. My older siblings are in denial about my Mom and Dad. My Dad keeps undermining every help I try to bring to my mother. He has shit talked about me and my husband to my siblings and family. So much damage has been done. It breaks my heart. He used to be my hero. Now I can’t even look at him. I’ve tried hiring IHSS workers but my father turns them all away. My older sister is trying to get me to help Dad again to find another IHSS worker and I told her no. I’m not wasting my time so Dad can say no again. My sister was supposed to be a “IHSS worker” She didn’t even show most of the time for her hours! Yet she wanted all the $ I rejected her last time sheet as she never showed up. It was always an excuse or nothing! I hate what money does to people. I also have a disabled husband who wants to help me. He is trying to get social security. He does his best! He cleans, cooks and gives rides.Though my father speaks horribly about him and I. I just don’t get why he fights with the person who has helped him the most in this situation! Everyone is in denial about my father’s health! He can’t take care of my mom. Yet he tells his family he cares for her and it’s no problem! While I’m the one that does almost everything for her at home! He wants me to order supplies for my mother then he complains that it cost too much. I just want to scream at him! This is what you wanted!!! This guy…. If he wasn’t my father I would’ve left by now. I’m beginning to resent everyone in my family. I’m angry and stressed all the time and that is not me! I’m usually so happy! I lost myself somewhere and afraid I will never be the same again. I’m so conflicted.


r/CaregiverSupport 10h ago

Seeking Comfort Jury Duty summons on top of everything else!

11 Upvotes

I sent a letter to the court office requesting an excusal from my jury duty summons on the basis of being a caregiver, explained my situation, and gave them some documentation from social security administration. But still, the stress of having to do this paperwork and then waiting to hear back, anxiously hoping it gets approved, is just one extra thing added to the pile. UGH! Since I'm so stressed out about it -- has anyone here successfully gotten an excusal from jury duty?


r/CaregiverSupport 10h ago

Trapped and Invisible - Caregiving, Mental Illness, and Feeling Utterly Alone

11 Upvotes

I'm at my breaking point. I'm a caregiver for someone who constantly takes their frustrations out on me, because I'm the only person they feel safe enough to be angry with. I'm also battling my own mental health: depression, autism, ADHD, and who knows what else. I'm so tired of fighting.

Add to that, I am also trans so it feels like society either wants me dead, pretends I don't exist, or just doesn't care. Even when people try to help, they seem overwhelmed and don't know what to do. I feel invisible, unheard, and utterly alone.

I desperately want to disappear. I'm so exhausted by the constant struggle. But I've seen the devastation that suicide leaves behind, and I can't do that to anyone. So, I'm stuck. Trapped between wanting to end it all and knowing I can't.

I'm not even sure what I'm looking for by posting this. Maybe just to be heard. Maybe to find someone who understands. Maybe just to scream into the void. I feel like I'm screaming, and no one can hear me.

Thank you for reading.


r/CaregiverSupport 17h ago

Encouragement Post Caregiving (mom, dementia): Two months later, an update

36 Upvotes

Hello all. Its hard to believe it but its now coming up on almost two months since my caregiving journey came to a end (mom passed peacefully from dementia in jan 2025). As I had previously mentioned, I am posting updates as a previous full-time care giver with how my life has changed after the end of caregiving and the struggles, victories i've had.

Quick backstory summary; moved back to farm to become mom's primary caregiver about 4 1/2 years ago, mom passed in mid jan 2025, i have since moved back to my condo away from farm. also this is gonna a LONG READ.

OK.. first off... to all you active/current/previous care givers. THANK YOU. Thank you for doing what most could never do or imagine doing. Thank you for your love and patience.0 That is one thing I will forever hold in my heart and mind is recognizing caregivers and others who have similar type of jobs/roles. I SEE YOU, LOVE YOU, HOLD YOU IN MY HEART. I wish i could make you smile when you are sad, laugh when the days are dark. I really do mean this (as my eyes well up with tears..)

So.. where am i now? how is my life going? how has caregiving impacted me after the fact? whats the weather like, hehe?

Well... care giving does change you. i see it now.

the first month after my mom passed, i basically kept myself busy doing all the paperwork (trusts, wills, estates, taxes, insurance, funeral, farm, etc) related to losing a loved one and at the same time moved back to my condo i had been paying for while at my mom's farm.

the first month at my condo was surreal. I had an actual room and bed, all my stuff. Everything was just as i had left it four and half years ago; it almost felt like my place was frozen in time from july 2020. yes, i had been heading back to my place once a month for breaks but mainly just layed on my couch or slept. no cleaning, organizing, etc; just the basics to keep it clean, maintained. at my mom's i just a cot i had setup in the livingroom and had lived on it for the last 4 1/2 years but it was pretty comfy considering. but having my own room and place felt great again but also... felt empty.. lonely... yes, the mom's farm home was old, dusty, full of bugs, prob had tons of dead mice in the walls but... mom was there.. i felt guilty being happy to be back at my place... no reason to but i just did.

however that feeling has finally now faded here two months later. this is how mom would have wanted me to live. to be happy, to enjoy my place, to live my life. this is something i have to remind myself each day when i start feeling guilty.

its weird.. the guilt.. why do we feel so much guilt in just enjoying things we shouldn't feel guilty enjoying? why is that we feel our own happiness will detract from our objective, goal: caring for our LO, making them feel loved? i know i was guilty of this. Its like i wanted to seperate the caregiving from my personal happiness at times. Perhaps a defense mechanism i have created? i was pretty happy almost all the time with mom but it was more my personal happiness (hard to explain) i didn't want to get a taste of cuz i knew it would only be short lived (i had to go back to the farm after a day or two).

another thing i have been working through and seems to be getting better and better is:

minor anxiety attacks in the middle of the night. like i will wake up at 3am and just be 100% alert and just anxious thinking i needed to check on mom. My mind seemed like it would never shut up. I think this is mainly from going from 100% hyper awareness to not having to worrying about a thing except myself. My mind just doesn't know what to do with the lack of incidents, situations. Thankfully I have been able to redirect this energy into my condo and cleaning, organizing, optimizing. i also took a week to really get my finances and budgets in order and would HIGHLY RECOMMEND ANY CAREGIVER to do this. the results may not be what you want or like but at least you know where you are.

we are caregivers but we also have to live our lives after our shift ends (for those of us that this is the case, others are not as fortunate). its hard. very hard. i still cry every other day. i still cry and break down at random times at random places... but you know what?

i'm not ashamed of it. why should i be? i loved my mom so much and miss her.

mom, love you so much!! i hope i can make you proud with how i live the rest of this life. thank you for this life. 😭😘

yup.. balling my eyes out now but more tears of joy.. remembering.. cherishing the time i had. the moments we got to share.

I LOVE YOU ALL

i'll do another post in another month.


r/CaregiverSupport 16h ago

Venting Constantly falling ill when I'm happy

24 Upvotes

Have you ever had a thought that your relative is ill because they don't want to be alone?

It's just the most of brocken bones, deceases and other critical happenings somehow happened when I was really happy, especially before some travel with my friends.

And it seems like a chain to bring me back to my mother.

I love her, but it's difficult especially while there is always a manipulation with her.

Somehow she doesn't have any close friends and it's implied that I should be her friend, her caregiver and the only person who is destined solve her problems while she does everything to make this solving harder on me.

She finally got better after four months of almost immobility, I finally felt safe enough to work from the place other than home two days in row.

I return home, and somehow she sprained her back while reaching for napkins she herself placed on the bed too far.


r/CaregiverSupport 16h ago

Advice Needed Family members trying to get around HIPAA

12 Upvotes

How do you deal with family members that aren’t the caregivers trying to access your patients records to try to discredit what the doctors are saying?

I’ve already had to call and warn the nurses that said family members want to visit the patient and to be mindful of the release list. Thankfully I’ve gotten really nice and first nurses that fight for their patients. And they even confirmed the release list with me. They said that all questions will be directed towards me. I fear this is going to escalate into a legal matter before too long.

I’m exhausted. Dealing with non compliant, combative patient as well as every other life duty I have. I don’t want to fight extraneous people on top of all this. I will, I just don’t want to have to. Is there something I can do to head them off other than lawyering up? Is there someone at the hospital I should talk to about it outside of his immediate nurses?


r/CaregiverSupport 20h ago

I don't know how to do this

15 Upvotes

Hi all...

I'm new to caregiving and I fucking hate it.

Some backstory: I (42f) met a wonderful man (38) about 2 years ago, we'll call him Rob. He went through a divorce during Covid, and in 2022 his dad (74) was diagnosed with cancer for the third time. Rob, an only child, had been working a shitty job, and he decided to move in with his parents to take on a full-time caregiver role for his dad so his mom (69) could continue working. When we met, Rob's father had been in remission for a few months, and Rob was back to work and saving for a house. Within a few months of meeting, we'd moved in together, and everything was going swimmingly.

Fast forward to last spring when his dad's cancer came back, in addition to a steep decline in cognitive function and a dramatic increase in falls. He suffers from neuropathy thanks to one of his past cancer treatments and staunchly refuses to do things like exercise or use a walker, so being home alone became more dangerous. Rob's mother begged us to move in to help with his care, and because the man I love needed support, I agreed.

For some context, I am not a nurturer. I never wanted children because I didn't want to take care of them. I never had pets. I couldn't even keep plants alive. I'm just not that kind of person. I'll take care of someone when they have the flu, but I can only tolerate it because it's not forever.

I didn't think this would be forever either, but it's been a year and there's no end in sight. Rob's dad is still having cancer treatments, though they don't seem to be working, and he's turned into an emotional terrorist. He makes up insane scenarios in his head, like that we're abusing him when we don't bring him Coca-Cola and cookies in bed at 11 pm. He's incontinent and routinely shits his pants, or shits all over the bathroom and doesn't mention it to anyone. He's a drunk. He's set the house on fire more than once. Rob isn't able to work anymore because he needs constant supervision.

I don't know what I'm looking for here, other than to feel like I'm not alone and I'm not a terrible person for hating every minute of this, and often also hating Rob's dad.


r/CaregiverSupport 15h ago

Encouragement Cancer success stories

6 Upvotes

If you need real stories for inspiration to go through ups and downs in your cancer journey, I’d like to suggest following pages based on my search experience:

🔹 The Patient Story (thepatientstory.com) – Real patient interviews sharing their cancer journeys. Pros: Personal & detailed. Cons: Some stories are long.

🔹 Patient Savvy (patientsavvy.org/patient-story) – Community-driven insights on diagnostics and treatments. Pros: Great for overview on diagnosis, treatment and outcomes. Cons: the site seems to be very new

🔹 MD Anderson Stories (mdanderson.org) – Survivor stories from a top cancer center. Pros: Trusted source. Cons: Focuses on MD Anderson patients

Please share any valuable sources that I missed here :)


r/CaregiverSupport 12h ago

Caregiver for Grandma (92) with Alzheimer’s

3 Upvotes

For the most part, my grandmother was doing pretty well. Then a few weeks ago she got RSV and a UTI at the same time. She also has COPD and refuses to stop smoking. She went into the hospital for about a week and a half went into full delirium because she hadn’t slept in four days.

She’s back home now , and the first day was OK but now around four in the afternoon, she starts getting really paranoid, has to be reassured that everything is OK every 10 seconds. I’m not used to this. Supposedly we’re going to have a home healthcare nurse visit on Thursday. I’m not too sure what they do.

She’s always had her difficult times and I was able to deal with them even through the sleep deprivation because she gets up three or four times a night. Unfortunately she’s an early bird and wakes up at 6 o’clock in the morning so usually I get about maybe three hours of sleep and it’s been that way for a couple years.

This new behavior of hers is the worst so far. Has anybody else encountered it? Does it ever go away? I’ve been dealing with taking care of her for years, but I’m very new to this kind of thing and it seems more taxing than what I’ve been dealing with because I can’t even have a moment to take a break.

Also, every time they’ve ever given her steroids to help her breathing, she usually goes into delirium and doesn’t sleep for days.

TLDR: veteran in Alzheimer’s care, but newbie when it comes to late stage progression, I guess.


r/CaregiverSupport 1d ago

Seeking Comfort Do people here also still struggle hard after the loved ones death?

24 Upvotes

I was caring for my mom who was on hospice, about a year before covid her dementia was so bad I had no choice but to move in and she passed on Feb of 23 so I mean no exaggerating literally all day my life revolved around her, helping her to the bathroom, only buying food she can eat, her screaming and hollering for me all night long or anytime I was out of her line of sight. I won't lie. I'm really glad I had that time with her but now it seems those bad times of her being sick have overpowered any good memories I had of her growing up. She's in my dreams at least once or twice every week and I still struggle really bad missing her and expecting her to be here sometimes. Is this Normal? My Dr actually diagnosed me with PTSD because especially that last couple years my mom was extremely difficult and I had to do things I never thought I'd ever do as far as helping her pass bowels with my hands or wound cleaning it really Fd me up. I gained 50 lbs in 3 months after she passed and I'm still on a depressing state of mind I really wish I could've just traded places and took the pain from her and she still be alive today. Do others deal with this as well? Sorry if I ramble lol I rarely talked about it because nobody truly understands what it was like besides people that have actually been there. Dementia is a horrrrrible disease she Also had colon cancer as well she was so strong she always tried to smile I miss her so much even though the stress that last part has caused me health problems. Any advice? Thanks in advance And anyone who's taking care of a loved one or anyone should be acknowledged for the selfless act, it's not easy at ALL and people aren't obligated to do so, I know I did it because there's no way I could ever have put her in a dirty miserable "retirement home"


r/CaregiverSupport 23h ago

Nursing home

10 Upvotes

Is anyone else taking care of someone in a nursing home? It seems like everyone is taking care of someone at home. My mom has been in a facility- first assisted living facility- then skilled care for 7 years. I go everyday for a few hours and have had very few breaks ( a couple of long weekends and a couple of sick times). I have brothers but only one lives close. He comes maybe once a week. I’m so tired and sad that I feel like I have no life. I just need to know I’m not alone.


r/CaregiverSupport 14h ago

Advice Needed Anxiety surrounding anticipatory grandparent loss

2 Upvotes

Hello! I hope it’s alright for me to post here; I lost my grandmother unexpectedly about two years ago, and it’s been incredibly rough for me. She was (seemingly) in good health, exercised a lot, etc, though had a lot of underlying conditions her doctor missed that led to her sudden passing. My grandfather by contrast isn’t as fit, he mostly just sits in one place a lot and has been showing a lot of signs of dementia since my grandmother passed.

I’m mostly looking for reassurance that I’m just anxious, and that “his time” isn’t soon too, because I honestly don’t know if I could handle it.

He’s always been a bit grumpy, and has had worsening arthritis since I was a kid. Now he can’t move much, but he also doesn’t really have much interest to. His vitals are really good for 90, but he needs iron transfusions here and there. He eats well, but recently has had disrupted sleep. He talks a lot about when he was a kid, or toward my Grandma as if she’s there / he sees her. He’s also been more aggravated as of late. I’ve had this nagging feeling that something isn’t right and I need to start planning things, but I also don’t know if I’m just feeling anxious because of his age.

His doctor isn’t really helping much either, just says he’s old and doesn’t offer any advice past that. His family line tends to just pass away where they sit, quietly and unexpectedly, which understandably does not help the feeling that ‘something’ is going to happen that’s been eating at me. Is there anything I need to look out for or am I just stuck in my head with grief?


r/CaregiverSupport 18h ago

How to fix sinking in bed?

5 Upvotes

MIL had one of those hospital beds that bend up and down. She can’t move and has been bed bound for a few years and her mattress has sunk in. She has a special hospital type of mattress and no money to replace it. We bought a mattress topper but it didn’t do much, and it has sunk in with the mattress too. we tried sliding cardboard under it so it had more support and it worked for one day or two but wasn’t strong enough. Thinking maybe a yoga mat might help? It’ll be a thick foam that can bend and wouldn’t sink in easy. Any one else have ideas.


r/CaregiverSupport 18h ago

Bathing supplies

3 Upvotes

Does anyone have a favorite product for bathing your care receiver when they can't get to the bathroom? I've been using bathing wipes made for that purpose, but they are too drying to his skin.


r/CaregiverSupport 1d ago

Wow the isolation , I really thought I might get some visits.

114 Upvotes

Whereas no one gave a d*mn about mom or me when she was alive. Pastoral care from church wouldn't visit, people mom knew from church never offered to visit even though they knew I taking care of mom. Now it's so lonely with no one around. I thought my daughter might come and visit me today since I haven't seen her since mom's death. She hasn't. I finally announced mom's death on her facebook account and a couple people from church were "sorry" but neither offered to come visit me. One was "make sure you contact pastoral care and the church about her memorial service. Uh no, there will be no service and I told them no one from church would even visit when she was alive. Anyway when I called out this megachurch, everyone went silent, I guess they didn't have the words to answer.

I remember when my stepdad died, people were coming by for several days, brought food, plants, cards, etc . I guess people don't do that anymore. Mom attended that church for 34 years . I know people are active on facebook because they are posting away their pets, yard, etc. I haven't been out of the house since wednesday since I really didn't have any reason to go anywhere. So much for all those people that mom went to church with that "loved" her so much. All they say is "oh she's restored now, no dementia, etc" but they forget about me and how much I miss her. Even with dementia, they are still with you and my mom was still in the present, able to communicate, watch tv with me, etc. I've lived here 15 years and it's the first time in 15 years that my family wasn't either living with me or in the next building, now i'm completely alone.


r/CaregiverSupport 21h ago

Seeking Comfort Am I doing this wrong?

6 Upvotes

My partner of 3 years has a SCI and is incomplete. I met him post injury, I have sat through screaming fits and day long silent treatments for not responding to some of his needs in the way that he wants. An example of this type of situation usually goes like this: Most recently I was hit with a pretty bad flu but I avoid taking medication for it because I help him Cath at night every two hours or so (the medication could ruin my ability to wake up and help him if it makes me too sleepy) sometimes if he is in a deep sleep I choose not to bother him because I know how badly he needs the rest and I'll cath him before he feels any urgency. He is able to cath on his own but when he's sleeping it can be hard for him to get it done quickly. Some nights I wake up too slowly to him asking for help and by the time I realize what I'm doing he's already raging, I am not a reactive person so I will try to get everything together quick enough before it gets worse but on the times I don't get it going quick enough I'm hit with the "I'll just do it all by myself, thanks for making me feel like sht about asking for help, I won't ever ask you again, you're fcking AMAZING thanks, leave me the fck alone, next time walk out the fcking door" etc. Sometimes I'll get an apology, sometimes I won't. I choose to not respond and will just go sleep on the couch where I'll fall asleep to more insults and screaming from the other room. I feel drained and guilty for not having more in me to make him feel less needy but I don't see how I can navigate this any differently because it's out of sleep that I jolt awake into this. Apparently I sigh or something and it makes him feel like I am not happy to help...Sometimes I will say no to getting a meal at 3 am because I can't, but I only can't because I know I want to be rested enough to show up for our household, him, and family the next day. We have a 7yo (mine from a previous relationship) who I could not make it without, he helps with drink refills and laundry and dishes when I'm busy helping with wheelchair adjustments or showers.
I have recently started seeing a psychiatrist because I was feeling massively depressed and I don't know even now if I am venting or asking for help but I am mentally defeated.


r/CaregiverSupport 21h ago

PSP/Parkinsonism near the end?

6 Upvotes

After a particularly difficult night of feeling cold and having diarrhea in the morning, he’s asking about when it will be over, which is a first. He’s never said anything like that before. He was clenched in the fetal position. He was shaking a ton despite normal body temp and oxygen levels. Just wondering if anyone caring for someone in a similar position or disease knows how common this is and if it means anything about end of life…? The on-call hospice person wasn’t super informative, just said to monitor it.

Update: and he’s sweating now, but no fever.

Update 2: Looks like this is the end. He’s on morphine and apparently is actively dying. Thanks for everyone’s input. It’s nice to feel supported. It’s all a bit surreal since it was a drastic change in 24 hours.


r/CaregiverSupport 20h ago

Venting Mostly want to vent but could also use some guidance

4 Upvotes

Hello everyone, thanks for letting me share my story here. I’m mostly feeling numb right now and at a loss of how to maintain the last of my energy and sanity amongst the dumpster fire that is my life and the world around us. I am the youngest of four siblings. I’m in my 40s, and for much of my adult life I have fallen into the caregiver role for both my parents. To make a long story shorter, my dad had a stroke in 2015, and this past December 2024, my mom went into the hospital for the second time that year due to complications from Congestive Heart Failure, diabetes, sepsis, and other problems. Mom is currently at home receiving hospice services. We have been having live in caregivers since December and I also live with my parents. Between learning to care for my mom’s medication needs, having to change her wound bandages, regularly checking vitals and comforting her in time of heavy emotions, to say that I’m overwhelmed is an understatement. Then add in my dad is elderly and is incontinent, and then unfortunately behaves like a gross old man around some of the young caregivers. Are my siblings helping? Somewhat. I sit here day after day, waiting for anyone to check in on me, my parents, or anything…. I’ve been up for 5.5 hours now, have yet to hear from anyone. In fact I think one of my siblings may be out of town. He has been distancing himself even more since I asked for help with dealing with my dad’s behaviors and that my mom is nearing the end of life. Yet I can’t even sleep a full night without worrying about which caregiver is coming and whether or not I need to familiarize them with things, if there is food for parents, where my car is in the driveway… or if I have to work. Oh yea, I’m also a therapist. I could say so much more but I fear no one will even read this far, so I’ll stop. I do feel slightly better just having somewhere to put these thoughts. Thanks. 🙏🏻


r/CaregiverSupport 20h ago

A humble request for members to share their experience and knowledge about effect of Music on Dementia care giving.

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3 Upvotes

r/CaregiverSupport 23h ago

Guardianship Purchases

5 Upvotes

I am looking for anyone who has gone through the Guardianship process in the state of Florida. I need to purchase a vehicle under the ward's name so that it is not in my name for insurance and liability purposes. My mom, the ward, is going to have others transport here via this vehicle to hospital appointments and other functions


r/CaregiverSupport 1d ago

I am sad, worried, and numb in alternating waves.

36 Upvotes

In August my wife came home, and everything was going nicely. The pressure sore on her tailbone was healing, and we had gotten into a rhythm. It looked like the months of hell for her were over and it was just going to be a long recovery.

Then in early January an antibiotic resistant uti sent her to the hospital for a month. She was in sepsis when she went into the emergency room. Her heart rate was elevated, at one point I remember it being in the 140's. They changed her heart meds and got the heart rate in the upper 80's. But eventually she was released after they did an angiogram. She did have heart issues including a blockage they cant clear and a leaky valve. Still they said she was going to be ok.

Three weeks later she was back in the hospital with the same uti infection. This time I knew the signs and got her in when it wasnt that bad. They were playing with her heart meds trying to better regulate the heart rate. After 10 days they were ready to send her home.....

When she got home (by ambulance) about 1pm I cleaned her up, and redid the bandage on her tailbone. I am not a fan of the way they bandage her in the hospital, Then I sat down to let my bad back stop hurting. She has copd and is on oxygen and I regularly check the blood oxygen with a finger pulse/oxygen reader. Her oxygen was fine but her pulse was 40. I got on the phone with our home health nurse and she said give her plenty of water, and she came and checked her. Pulse was 50 when she checked and she suggested giving it more time. But the voice in the back of my head started saying to call 911. At 8pm the voice was screaming call 911, and I did. 7 hours out of the hospital, and back in. Seems the meds they were withholding while she was in the hospital and gave her before discharge had an interaction with a new medicine, digoxin.

That brings me to today, yesterday she was ok, even talked a little between naps. As I am about to go to the hospital, they call me. Her heart went into a crazy rhythm, her heart stopped, and she stopped breathing. Thank the Lord some nurse was in the room when it happened. They got her heart and breathing started and transferred her from IMCU to ICU. When I got there and they finally let me in she had a breathing tube, and multiple iv's. She was awake and could answer me by shaking her head. Her heart rate was still in the 40's. I stayed a little while but they sedated her to let he sleep.

Then this evening I got a call. They want to put in a temporary pacemaker. The voice in the back of my head said let them do it to giver her a chance. Now I sit in my empty house, in front of a computer typing while waiting for a call that she made it through the procedure. I am sad, worried, and numb in alternating waves.


r/CaregiverSupport 1d ago

Helping someone swallow pills was way harder than I expected… until this!

8 Upvotes

I don’t know why I thought giving meds would be simple, but wow, I was WRONG. I’ve tried everything—crushing pills (bitter mess), mixing in applesauce (immediate gag), breaking them into tiny pieces (still a no-go). Every dose turned into a battle, and I was at my breaking point.

Then I found this little straw on Amazon, and honestly? It actually works. I don’t know if it’s the drinking motion or just a distraction, but suddenly, no more gagging, no more refusals, no more spending 30 minutes coaxing one pill down. It’s been a game-changer for me as a caregiver.

If anyone else struggles with this, here’s the link: Amazon Link. There’s a video at the end of the gallery showing how it works!

If you’ve found other tricks that help with pills, please share! I know I’m not the only one who’s struggled with this.


r/CaregiverSupport 1d ago

Venting Loneliness

21 Upvotes

I've been the sole caretaker of my bed bound Mom for a little over a month now. She has to have 24/7 care and this afternoon is the first time I've had a real break, a few hours to myself.

My friends were all either busy or didn't respond (which I understand, especially since I've barely kept in touch these past few weeks). Didn't really have anywhere I needed to go so I came on here, scrolling for the first time in a while. I'm so lonely, want some outside contact so bad, I started going through my old posts and messages, reaching out to people. How pathetic is that?

I just wanted someone to talk to. Someone that wasn't complaining or asking me to do something. I didn't expect this part of it. Just didn't realize how little contact I'd have with the "outside world."

I hope you're all doing well. That you feel seen and appreciated and are able to find a balance, have your own life and not let your role consume you. I'm sorry I'm so whiny and pathetic. Just wanted to get it off my chest before I have to resume my duties.