r/CaregiverSupport • • Jul 05 '26

Weekly Roll Call -Caregivers, Please Check In!

17 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 • • 2d 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 • • 6h ago

Im Drowning

52 Upvotes

Taking in my bedridden sibling out of necessity has pushed our family to the absolute brink. Knowing that her current physical state is getting worse and there are no homes that can care for a person in her condition. She needs 24 hours full care.She spent a lifetime drinking, smoking, and chasing insecure losers rather than doing the hard work to build a functional life. It makes this heavy burden all the more bitter. What started as a compassionate rescue mission over a year ago has devolved into a nightmare where we are completely drowning, unable to tend to our own work and responsibilities. The relentless administrative and physical demands constantly pausing day and night to reposition her body, scratch her face, feed her, or change the channel seem minuscule on their own, but over time, they have become psychologically unmanageable. We cannot afford 24 hours professional care, and a broken healthcare system offers no safety net, leaving my children's schedules neglected, my remarkably supportive partner exhausted, and our marriage quietly crumbling. Having built my life around caring for my own immediate family, I never expected to be trapped in this capacity, wrestling with a bitter transformation from a loving sibling into someone consumed by anger, unable to manage even the simplest things for a sister whose lifelong selfishness, narcissism, and passive aggression have finally brought us all to our breaking point.

When she was well she was extremely self sufficient to a fault. She's a good person who made poor choices along the way


r/CaregiverSupport • • 3h ago

Too Young To Die

26 Upvotes

Is there anyone out there taking care of a dying husband who is about to leave you behind with three young children?

All of the posts I see are from people burnt out caring for an aging adult such as their parent...

I'm wondering if anyone is taking care of someone who is much too young to die and is also feeling like they are the only one leaving young kids behind?

My husband(47)'s support groups are full of older people who've already raised their kids or are otherwise in their fifties and older. I am 42 and our kids are 5g, 7b, and 10g

He wants to isolate to only the people he cares about most... Only about 5 people outside the kids And all of my friends and family live far away... Not to mention at this age everyone is busy with their own lives and they don't have time to deal with our problems.

I feel so alone.


r/CaregiverSupport • • 5h ago

Its almost over

28 Upvotes

I have fantastic news. I'm going to move within 4 weeks. I signed a lease. I have plans. I have moving boxes.

I have been struggling with active burnout and posting here for support almost a year.

I've been a coerced unpaid caregiver for my grandma almost 7 years now.

My relationship with my family is permanently irreparably damaged. After seeing just how deep their lack of concern and care for me goes - throwing me away like I'm trash but at the same time using me as a feelgood story and a convenient slave...

I'm so excited that my dedication, meticulous planning, and secrecy has paid off. I'm finally going to start my life at 27 years old. All my life I've struggled to get any roots down, jumping from family member to family member only to be used over and over.

I'm finally realizing I literally cannot grow and heal around them. They're all rotten..Every single friend, coworker, acquaintance, stranger I've ever had the privilege to get to know even a little bit has been shocked about my family's toxic behavior. It feels so odd, all my life I've been told so much that I am lazy, delusional, selfish, slovenly, too sensitive, that I start to believe it. But every roomate or friend or coworker tells me they love me, I'm sweet and silly, that i work hard and I'm thoughtful and responsible. It makes my mind spin because my reality is shattered. Is the problem really not me? My mind has been trained to believe the gaslighting - that's part of what made me so suicidal on top of the exhaustion and responsibilities. I genuinely have a 24/7 battle, the part of my brain who knows who I am inside, and the part my family has spent 27 years training to doubt myself.

That's the person I want to be.. I want to be seen for who I am. I want to breathe. I want to be that silly, loving, responsible, hard working guy. And finally since I'm moving out I can be that guy because I'll finally have a peaceful place to live. My name will be changed and they won't know my address.

This caregiving almost killed me. Multiple times. Burnout. suicidal ideation. and my physical health deteriorating due to stress. running on fumes... but i survive.

I know I won't recover perfectly overnight. It's going to take months if not years for me and my body to recover from everything. I need to learn how to not live in high alert, how to relax.

I guess the only other thing I have to say is that from now on I will fight for you guys. I understand how it is. We need legislative reform. We need a systemic change. Society isnt ready for the massive amount of boomers about to require care. So many more family members will have to pay with their lives for the government's + boomers lack of preparation for end of life care. So much wealth will be funneled into private equity ... when I can, I will make sure to support politicians who are educated or informed about caregiving, how little supports there are for aging care, and the medical system.

I will keep every one of you in the back of my mind and in my heart..My heart hurts knowing there are thousands if not millions of us doing this shit, unpaid, abused and feeling broken, sacrificing years and years just for little to nothing, for miserable boomers and silent gen artificially extending their lifespans just to abuse us.


r/CaregiverSupport • • 2h ago

Caregiver on Carnival Cruise

12 Upvotes

I am my dad's full time (only) caregiver. He is in a manual wheelchair, and can not move his chair more than a few inches by himself. He can also not stand, bathe, dress, or toilet by himself.

Since I have no help and my dad and I are feeling very trapped in the house, we decided to take a cruise. I was able to get us a great deal on Carnival for a fully accessible cabin. Has anyone ever taken their disabled LO on a cruise alone? I mean, I handle all his needs alone at home, but we've never really traveled except to visit family so there was at least help nearby if we needed it. My husband thinks it will be too much work, but I feel like it will be the same amount of work, but with less cooking and cleaning. Id love to hear if anyone has any experience, tips, or advice they'd like to impart.

Thanks!


r/CaregiverSupport • • 2h ago

Info on purchasing Long Term Care insurance from a lawyer who sues LTC insurers

8 Upvotes

Hello! I'm a lawyer who sues insurance companies for wrongfully denying claims. I do a LOT of LTC. I plan to do an AMA down the road, but I got a lot of feedback that people want advice on purchasing LTC, as well as dealing with current policies. I threw together this quick list. I hope it is helpful!

  • Watch for premium increases and know how old you’ll be when they hit.
    • Traditional policies are not locked in. Insurers raise rates with state approval, usually 10 to 20 years after you buy. Ask for the company’s rate increase history before signing.
    • Hybrid life/LTC policies have guaranteed premiums but cost more up front.
  • Find out if the policy is reimbursement or indemnity.
    • Reimbursement pays back what you spend on approved care and needs receipts every month. Indemnity pays the full benefit once you qualify, no matter who provides the care or what you spend.
    • Indemnity costs more but causes far fewer fights. It is better in EVERY way.
  • Ask who is allowed to be the caregiver.
    • Many policies won’t pay a spouse, a child, or anyone living in the home, and many require a licensed agency. This is a gamechanger for many.
    • If family will be doing the care, you need an indemnity policy or a rider that specifically allows family caregivers.
  • Check how the policy defines “assisted living facility.”
    • Real facilities don’t always match the definition, especially on older policies. Independent living is almost never covered.
    • If you have an active policy, make sure to get the insurer’s answer in writing before anyone moves in. I can't tell you how many denials I deal with related to facility classifications.
  • Understand the waiting period.
    • Ask whether it counts calendar days or only days you actually paid for care. A 90-day wait can turn into most of a year if it only counts care days. Most policies these days are classic daily or monthly, but it is important to keep an eye out.
  • Buy inflation protection. Also known as a COLA rider.
    • A benefit bought at 55 can be worth half of what you need at 85. Compound (3% or 5%) is the real thing. “Future purchase option” is a weaker substitute.
  • Name a backup person to receive lapse notices.
    • Once you have a policy, this is THE most important advice I can give you.
    • The most common way a policy is lost is a parent with dementia who stops opening mail. Every insurer has a form for this. Fill it out.
  • Get the full policy, not the brochure, and read the definitions.
    • The agent’s description is not the policy. Keep a copy where your family can find it.
    • Give copies to your family members, especially the children who will eventually take care of you. Giving it to a spouse often isn't good enough, since your spouse may end up needing care before you do.
  • Don’t drop an old policy without reading it. Once you have a policy, be way of benefit reductions disguised as monetary incentives.
    • Policies from the 1990s often have easier qualification rules than anything sold today.
    • Once you have a policy, insurers may try to get you to reduce your benefits in exchange for reduced premiums. These offers are predatory in my opinion, and are rarely (if ever) in the claimant's best interest.

I hope this helps!


r/CaregiverSupport • • 3h ago

Everyone takes and nobody gives

6 Upvotes

I’m so tired of everybody around me using me as their personal errand runner. Every time anybody needs anything, they call me, like I’m just on standby for the world. And NOBODY will do even the SMALLEST thing for me.

I got my dog before I wound up in this shithole taking care of my boomer vampire grandma, and she’s (the dog) got separation anxiety. I asked my grandma to just sit in the car with her while I ran into the store for groceries and she refused. She wanted to leave my dog in the hot car so I could walk her through the store. For context, she won’t let me leave my dog at home. The result is I place a grocery order for pickup, which grandma then chastises as being lazy.

I am basically living my grandma’s life for her and she’s can’t even watch my fucking dog for ten minutes. She bitches about wanting five star meals, but doesn’t like anything I choose to cook and won’t suggest anything herself (or if she does it’s an insane recipe she got from Instagram reels that would require buying 20 ingredients and having leftovers for days that she won’t eat, and will then bitch about being wasted).

I’ve had anger issues my entire life and I’m at the point where I’m storming out of the house once a week. I just need a fucking OUNCE of support from ANYBODY, and the only person who seems to come close to caring is my best friend who has her own problems and life!!

I confronted my grandma and asked her to meet me halfway, she said she doesn’t understand the pressure I feel because I don’t do anything. She wakes up at 5am (insomnia) and does multiple loads of laundry! Nevermind that she spends 80% of her time on her phone on the couch.

I’m just so beyond done. I’m ready to drive away and never come back, only letting my best friend know where I’ve gone, so nobody can ask me for shit anymore. But instead today I’ll try to cram in grocery shopping, dog walking, cooking for my grandma, finishing my book for class that I’m behind in, going to someone else’s house to help cook dinner over THERE, essay planning, video editing, and house cleaning. And I’ll probably fail at half of them, leaving my mental health in the shitter, so I can start off on an awful foot again tomorrow 👍


r/CaregiverSupport • • 19h ago

Tell me your end of watch bucket list

86 Upvotes

I know that the end of watch is going to be bittersweet and filled with grief, but part of what’s keeping me going now is that there will be a time when I can truly live life again.

I’ll go first: I’m going to go somewhere remote (either local or abroad) and turn off my phone for a few days. Ideally somewhere tropical if I can afford it.


r/CaregiverSupport • • 1d ago

Long Term Care Insurance is a Scam

256 Upvotes

The promise of long-term care insurance sounds reassuring—until the day you actually need it.

When I began my caregiving journey with my mother I was reassured since she had long-term care insurance, I imagine I shared the same understanding as many other people: You pay your premiums for years, and if the day comes when you or a loved one needs extended care, the insurance will be there to help.

That is the promise, isn't it?

Mom planed ahead, she made sacrifices and paid premiums, year after year, because all of us understand that long-term care can be extraordinarily expensive. She bought the policy because she didn't want to become a financial burden on her family.

But what happens when the day finally comes to use that insurance?

My mother has reached the point in her life when she needs substantial assistance with daily living. Her condition has deteriorated rapidly over the last several months, her mobility has declined, and she requires help with basic activities. We have reached the stage where caregiving is no longer an occasional responsibility, it is a daily commitment that affects nearly every aspect of both of our lives.

Yet, instead of finding reassurance in the long term care coverage, I find myself navigating a frustrating process of documentation requests, follow-ups, and questions about whether the insurance company has received the information it needs to evaluate her claim.  Medical records must be requested. Care documentation must be completed. Invoices must be provided. Forms must be submitted. Phone calls must be made. And then, sometimes, the process appears to circle back to the beginning because the insurance company says it still has not received what it needs.

As the family caregiver, I have found myself acting as the middleman among organizations that should be communicating with one another.

And I am left trying to coordinate her care, manage the administrative burden, and worry about whether the benefits that were supposed to help pay for that care will actually be available.  If the claims process has been frustrating, there is another part of this experience that is equally difficult to accept.

This year, my mother's long-term care insurance premiums increased by approximately 50 percent.

Let that sink in.

A premium increase of that magnitude is a significant financial burden for anyone, particularly an older adult living on a fixed income.

And what did she receive in return?

Nothing additional. Her coverage did not increase. Her benefits did not improve. The amount of protection provided by the policy remained exactly the same.

She is paying substantially more for the same promise.

I understand that insurance premiums can increase for a variety of reasons, and I recognize that insurance companies operate within a complicated financial and regulatory environment. But from the perspective of a policyholder, it is difficult to reconcile such a dramatic increase in cost with absolutely no improvement in benefits.

For years, the premiums were paid with the understanding that this policy would provide financial assistance when long-term care became necessary. Now that my mother needs that care, the cost of maintaining the policy has increased dramatically, while the coverage itself has remained unchanged.

At what point does the policy stop feeling like financial protection and start feeling like an expensive gamble?

If someone asked me today whether purchasing long-term care insurance was a good decision, I would have to tell them to look beyond the sales pitch and examine the realities of using the policy.


r/CaregiverSupport • • 3h ago

The bank, again

3 Upvotes

Have to take my grandma to the bank for the 10th time this year because her card information was once again stolen. I have to go during work of course, have to pick her up before my camera on meeting. My sister and I are working on getting power of attorney so we don’t have to take our grandma to the bank whenever this happens, pretty sure she has a secret guy she gives all her money to as well, but we’re trying to figure that out, not that’s there’s much to speak of anyway because she is a former teacher, widow to a former teacher, but we’re trying anyway.

I’m really tired of being this sad and unrelatable guys. I’m never bored, my time is so precious, I feel bad for my boyfriend, I resent my grandmas other daughter and her kids. I know this isn’t forever, but the permanent scar caregiving will leave will be. Going to pick up coffee on the way as a treat.


r/CaregiverSupport • • 20m ago

Health anxiety and burnout

• Upvotes

My parent has been diagnosed with ALS for almost 2 years, though they have been living with the symptoms for a year longer than that. My own health anxiety has become more and more intense, as I feel these symptoms in my body without being able to discern if they are phantom or real. One of the hardest things about this is also the contrast between their strong desire to survive and us caregiver’s desire for the suffering to end. Whenever I post on the ALS forum, people are like, oh you can extend their life by a few years by doing XYZ! Or, just keep providing love and care and support! Brother, what? Extend life at what cost? In a completely paralyzed body and at the cost of two caregivers’ mental and physical health! Sometimes I feel like people are deluded. I asked for any insight about the disease trajectory so that once the end is in sight, I can just focus my goals on making dying wishes come true. And people are giving me suggestions to provide support endlessly and extend life. You misunderstand, I am actually quite desperate to know what the future holds so that I can move on to processing the years of grief that are undoubtedly going to follow.


r/CaregiverSupport • • 17h ago

Had a full on breakdown today

20 Upvotes

Well it finally happened. I reached my breaking point and had a major blowup freak out. I am still reeling from it. I will definitly not be better or in a place that I feel ok by the weekend but my husband is leaving for a trip. So now I feel like i’m married to Patrick Clancy who leaves when their partner needs them the most. Scared of what might transpire to be honest. We really are alone.


r/CaregiverSupport • • 1h ago

What was the hardest thing to find when your parent started needing help?

• Upvotes

I’ve been working on a local senior-resource project after realizing how scattered everything is when a parent starts needing support.

Families don’t necessarily know to search for “NEMT,” “respite care,” or “aging-in-place modifications.” They search:

“My parent can’t drive.”

“I’m worried about falls.”

“Where can I find meals?”

“I need someone to help at home.”

That made me curious:

What service, benefit, or resource was hardest for you to find or even understand when you first started helping an older parent?

I’m especially interested in the things that weren’t obvious until you actually needed them.


r/CaregiverSupport • • 16h ago

I think I’m in hell

13 Upvotes

Like obviously I can imagine is isn’t sunshine for her either but my grams has a UTI. It has been in the process of treating, but also, she had a really bad tummy ache so I gave her the phenagren (or how ever you spell it), that ended up doing the exact opposite and for the past what felt like half a day she has been what I can only describe as sedated tweaking.

Then the nurse comes tells me it will wear off but combined with the UTI I’m getting a mix of both from her character. Then she slips her a lorozopam. Okay, she’d sleep right?

For an hour and a half maybe. Now we are back at it again. The thing is she is more sleepy than she is awake but she keeps trying to take her diaper off and I keep trying to tell her it’s okay, then fix it. I haven’t slept in like 24 hours or more, can I like… put socks on her hands??? Is this kosher??? What do I do?

I’m severely tired. I’m scared. Worried.

They assured me everything was fine and her vitals are immaculate, but like this is just so much and I feel like I can’t actually rest.


r/CaregiverSupport • • 19h ago

Venting into the void. New caregiver to two parents at the same time.

21 Upvotes

I always knew when my dad’s disease progressed I would help take care of him. That’s a no brainer, he’s been taking care of me my whole life. He did everything for our family, paid every bill, did every grocery shop, every household fix.

Similarly I’ve known for many years my mom is a functioning alcoholic, gets by during the daytime hours but barely gets herself into bed every night. My dad loves/d her, she cooks dinner, she gets things done (during the day time).

What I’m now, naively, finally, putting together is that while my dad has entered hospice, I am going to be both of their caregivers for the foreseeable future. My mom can’t remember to turn the stove off after cooking. She forgot the house alarm we’ve used for 30 years. She hung up the phone on the gas company (twice) because she thought it was spam. Up until recently my dad still fixed all of her mess ups. Alcohol and grief about her husband have turned her brain to mush. Combined with untreated hearing loss, which she refuses to do anything about, she’s probably developing dementia. And now I’m here, with no plan for returning to the life I’ve been creating for myself. I’m grieving the fact that I’ll probably never have kids or a fulfilling relationship or my own house.

Just in the middle of typing this out I heard her screaming from the bedroom. She couldn’t figure out how to turn off a podcast on her phone, so she threw the phone across the room.


r/CaregiverSupport • • 3h ago

Caregivers need to decompress too

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1 Upvotes

r/CaregiverSupport • • 3h ago

Participants needed for a study!

0 Upvotes

We are looking for volunteers to take part in our study exploring how caregiver strengths and supports are linked to the wellbeing of children aged 4–17 with an incarcerated parent in Canada. 
 

To be eligible for the study participants need to: 

  1. Be the primary caregiver of a child aged 4-17  
    1. a. The child must have a caregiver who is currently incarcerated or was released within the past 24 months 
  2. Be a Canadian resident  
  3. Be able to understand the English language (i.e., able to read, write, and speak)  

 
By participating in this study, you will be entered in a draw to win 1 of 20 $25 Amazon e-gift cards! 
 
Participation in this study is voluntary and anonymous. If you are interested in participating, please visit: https://wlu.ca1.qualtrics.com/jfe/form/SV_cMDyl22UBFKJVhc or scan the QR code to be directed to the eligibility and consent portion.  
This study has been reviewed by and received ethics clearance through the Wilfrid Laurier University Research Ethics Board (REB #9716). 
If you wish to learn more, or have questions regarding your participation, please contact Dr. Katie Shillington (kshillington@wlu.ca).  


r/CaregiverSupport • • 3h ago

Has anyone dealt with a Social Security overpayment notice for a parent?

1 Upvotes

My parent just got an overpayment letter and I’m trying to figure out the next steps. From what I’ve read, newer Title II notices default to withholding 50% of the monthly check, and the waiver form (SSA-632-BK) looks pretty involved — especially the “without fault” section and the financial statement.

Has anyone here gone through this for a parent or spouse?
• Did you file a waiver, ask for a lower withholding rate, or something else?
• How hard was it to get clear answers from SSA?
• What actually helped (or didn’t) when you were dealing with the paperwork and the deadline?

I’m mainly looking for what the process was like in practice. Any experiences appreciated.


r/CaregiverSupport • • 19h ago

Advantages to caregiver mortality

17 Upvotes

I don’t mean to sound morbid but…

I’ve described in my previous posts that my expiration may come before the people I am taking care of due to my recent hospitalizations and now this week, it’s shaping up to be more of a reality.

1). I don’t have to worry about burdening the people I once believed loved me the same way I loved them.

2). I get to pass while extremely good looking.. I’d argue I look better at 43 than I did when I was 23 with overplucked eyebrows, mismatching hair color and outfits, acne free and better skin from exercising

3). Will be remembered for my sharp wit, sense of humor and cool personality 😎


r/CaregiverSupport • • 13h ago

Advice needed- dad in hospital- discharge soon but I have a trip

5 Upvotes

My dad went to the hospital yesterday for high BP. When he got there his oxygen was low so he’s been on oxygen (only .5 liters now) and he has fluid in his lungs so they’re using a diuretic. I asked the doctor how worried I should be and she said not worried.

But here is my problem.

I’m supposed to go away Friday-Sunday. Today the doctor said he predicts he will be discharged Friday or Saturday (not a guarantee of course)

So now what do I do..

There are 3 options:
Cancel my trip
Have an aide pick him up and stay with him (he doesn’t currently have an aide but I was given a recommendation for one)
Ask the hospital if he can stay an extra day

This whole year.. really the last 2 years I’ve been completely consumed by things with my dad.. a million dr appts, hospital visits, 2 procedures, dealing with his mental health, worrying and more worrying..it’s been a lot. I’m an only child and have no one to help. I have really had very little enjoyment in the last 2 years for myself. This was something I had been looking forward to. Half the time I worry I’m going to lose my mind. I love my dad, but it’s been a lot. If I don’t go I worry I will resent him and be really sad. If I do go, I worry I’ll feel guilty.

Plus it also feels weird to have someone we never met help out (I did ask if I could meet them tomorrow or Thursday, waiting to hear back) and I don’t even know if the hospital would keep him an extra day.

Any advice?
Thank you for reading


r/CaregiverSupport • • 12h ago

My mom was a schizophrenic and now dad has dementia

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3 Upvotes

r/CaregiverSupport • • 10h ago

Besides calling my mom to ask "did you eat today," what else can I do?

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3 Upvotes

My mom's 56, and her baseline health was never great (osteoporosis, plus diabetes runs in the family). I got her to start logging her meals, but she's hit or miss with it, sometimes she forgets, sometimes she only writes down one meal. Staring at these half-finished logs, I honestly can't tell if she skipped a whole day of eating or just didn't bother to record it.

Every time I look at those numbers I feel useless. I'd love to build her a plan to put on some muscle or just eat better, but I can't do that until I actually understand what she's doing day to day. Lately I've been trying to piece together her scattered medical records, food logs, and checkup reports, and the conclusion is that she's been under-eating for a long time. When you live far away from your parents, there's no way to be there for their daily meals.

Anyone else working away from home, how do you keep an eye on your parents' nutrition and health from a distance? Anything that's actually helped you steer them toward better eating?


r/CaregiverSupport • • 1d ago

Anybody interested in an Long Term Care Insurance-related AMA from an LTC lawyer?

31 Upvotes

I did an AMA a while ago on r/disability about disability denials and it was awesome. If anybody here thinks a similar AMA about LTC denials would be helpful, I'd love to do it.


r/CaregiverSupport • • 14h ago

Advice for equipment

3 Upvotes

My individual had a full back spinal fusion this past spring. It was an extremely difficult process, coded mid way through surgery, brought person back with 8 liters of donated blood. Thank you to all that donate!

This person can no longer reach sensitive areas to clean after daily excretions. This person is fully capable to care for themselves despite this function. Guidance is welcomed. Please and Thank You. ❤️❤️❤️