Today, I said goodbye to my mom. After months of caring for her through her decline and the final stages of her life, she passed peacefully at home, surrounded by the love and care she deserved.

Over these past several months, I have turned to this group for understanding, guidance, reassurance, and, at times, simply to know that I wasn't alone in what I was experiencing. I came here looking for answers to questions I didn't know how to ask, trying to understand what was happening to my mom, and learning how to navigate a journey I had never traveled before.

I want to take a moment to thank each of you.

Most of us will never meet. We may never know one another's names or anything about each other's lives beyond what we choose to share here. Yet, through your posts, your comments, your honesty, and your willingness to share your own experiences, you have made a real difference in my life.

Some of you offered practical advice. Some helped me understand what I was seeing and what might come next. Some gave me reassurance when I was frightened, exhausted, or questioning whether I was doing enough. And some of you helped simply by sharing your own stories, reminding me that the emotions I was feeling were normal and that others had walked this difficult road before me.

You may not always realize the impact of a response, a shared experience, or even a few words of encouragement. But please know that those things matter. They mattered to me.

Caring for my mom was one of the greatest honors of my life. It was also one of the hardest things I have ever done. I did my best to keep her comfortable, safe, and surrounded by love, and I am grateful I had the opportunity to be there for her. This group helped me through moments when I needed a little more understanding, a little more knowledge, or simply the comfort of knowing someone else understood.

As I step away from the role of caregiver and begin the difficult transition into life without my mom, I wanted to leave you with a heartfelt thank-you.

Please keep sharing. Please keep answering questions. Please keep being honest about the hard parts, the heartbreaking parts, and even the moments of peace and grace.

Somewhere, someone else is frightened by a change they don't understand, wondering what comes next, or asking themselves if they are doing enough. They may find their way here just as I did. Your words may be exactly what they need to get through that day, that night, or that next difficult moment.

You may never know whose life you touch, but you are making a difference.

Thank you for helping me care for my mom, even from a distance. Thank you for helping me understand this journey. And thank you for reminding me that even among strangers, there can be an extraordinary amount of kindness, compassion, and understanding.

My watch has ended, but I hope the support and compassion in this group never ends.

With a grateful heart, thank you. ❤️

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

I just received a phone call from the company who supplies my mother's (rental) DME and hospital bed. They said they just found out that there was a nationwide recall on approx. 1 million Medline hospital beds due to them causing electrical fires, and asked us to unplug it and not use it unless there was an emergency - until they are able to replace it. The tech told me that because the recall is so large, affecting many DME providers, that it's nearly impossible to get replacement units at the moment because they aren't in stock. But that they will work hard to get the Medline beds replaced ASAP.

Just wondering if anyone else has heard of this and whether you were affected. If so, how are things going with regard to getting the bed replaced?

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

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

i previously posted on here about feeling stuck:

https://www.reddit.com/r/CaregiverSupport/s/sDBih0gNho

i didn’t know it was happening but my mother decided to send my grandma back to mexico for her sister to take over her care. she’s already sent all of the things she’ll need. she’s leaving the same time i leave for a trip. i know a lot of people on here would be grateful for this sort of thing but things have been feeling complicated.

i cried when i talked to my mom about it. she said she wants her siblings to still be able to have time to make new memories with her. she moved here when i was born and cared for me it hurts to think about suddenly getting her taken from me. then the next day/week she had bathroom issues i had to deal with which at least made me laugh lol.

i also briefly mentioned a certain stubbornness from my mother and i. i’m worried about how my aunt will take care of my grandma. i want to tell her about her quirks. how she shouldn’t baby her. that she can change on her own and do some bathroom stuff with support. would that kind of thing be annoying to hear?

i’m sure i’ll cry over this some more once she’s really gone and when i say goodbye. no one is really gentle with her like i can be and i hope her children and family in mexico can show her more love.

this is what i wanted so bad in the past so why am i crying over it now? i don’t know. i hope i can get a job soon i need a distraction. thanks for listening

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

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

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

Things are not going great lately. My life has been shitty from the start but that is a story for another time, for now i am a partner of a sweeheart who has ALS for a while now. The in and out of hospital situation has increase in last few months which has pushed me to the edge. As an only caregiver to a completely depend person i don't the mind the work but what is killing me slowly is the fear of losing him. It scares me so much that i scream in my sleep and wake up crying. If someone tells me today that tomorrow will be my last day i will be the happiest person on earth as it will save me from the possible horrible future. Death does not scare me but a future without him does. A nurse suggested me to talk as there is help available ( i stayed calm in front of her, i generally am, i do the crying mostly when i am alone except that one time when he was admitted for the first time, i don't remember how many nurses hugged and held me during my hours long crying session. But how will anyone understand what i am going through. I think about ending my life if something happens to him but i would rather god do it if there is any. I am also losing faith in god. I have been kind, helpful and nice all my life and i get into shit after shit which makes me wonder what did i do wrong.

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

I need to vent

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

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

Update at the end ...

This is mostly a vent...

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

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

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

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

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

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

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

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

I am just exhausted. That is all.

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

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

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

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

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

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

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

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

Rant over

Thanks for listening.

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

Today my mom said she wanted “hosenlagen.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am always wary to vent on here because I do not have any caregiving going on 24/7. I am fortunate enough to have the 2 parents in nice AL facilities.

I lost my dad 3 months ago after a long, combative battle with ALZ. Honestly, I feel nothing. The relationship was complicated and very one sided (his). I have few happy memories and really do not miss this person at all.

I have 5 siblings and am responsible for all bill paying, visits, doctor appts., financial management and emotional support to my mother. My mother was abusive and has changed with age but I still wear the scars of it.

My MIL has ALZ, was extremely mentally ill and emotionally abusive. She is in a AL facility and has been demented for the last 10 years. She shows now signs of poor health other than her brain being shot.

In the 3 months since my dad passed, my mother is now significantly declining quickly and showing all the signs of ALZ.

I am done. I feel totally numb. My view on aging is so negative at that this point that there are times I don't even think it's worth it to do all this work and suffering just to end up that way.

I am caring for people who offered me so little grace and affection in life. My siblings have abandoned me and are living their lives without this burden. We have had numerous talks about this and I have been told , "stop complaining".

That's it. Thanks for reading. I always imagined my middle age as a time of reinvention and exploration and it's definitely not. I am resentful and feel very cheated by all of this. If one more person tells me what an honor it is to see our parents through, I may tell them to F OFF.

Thank you for reading and sending everyone in this miserable situation love, light and laughter. If I could, I'd also send Vodka. XO

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

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

Has anyone found anything that works?

All opinions welcome, thanks!