I’ve been taking care of my dad since May and now I wish I’d started sooner. He’s been in long term care facilities for the past five years or so despite being relatively independent but had a lot of medical issues. He recently had a subdural hematoma that was treated in the hospital by reversing his blood thinners. They discharged him without surgery because he was stable and he ended up back in the ER the next night where they performed a surgery to remove the blood from his brain. He has been unable to communicate since. He has progressively gotten worse and they’re not really sure why. They did an MRI and no stroke so they did a second surgery and removed part of his skull so that his brain can swell out instead of in, but it hasn’t seemed to help much and he’s been having seizures. He’s also been on a ventilator since his surgery, they don’t want to take him off until his seizures are under control.

This is all to say that I’m not doing very well. I haven’t been able to focus at work and I’ve been spending as much time as I can at the hospital but I really don’t like seeing him on the ventilator.

I’m really scared and would just appreciate any kind words or advice.

My spouse was in a terrible accident right after we were married. They will thankfully be ok, hopefully without too much complication in the future, but it will be a very long recovery. I'm struggling so badly tonight, and it feels like it's just getting worse... i just don't know what to do. Was hoping the people in this group might understand. Any advice or words of encouragement would be very appreciated.

I absolutely love being able to be there for them. We joke that I'm being given immediate opportunity to practice the vow of "in sickness and in health". And I really have risen to the challenge. I just feel so spent. I'm not getting nearly enough sleep, and the emotional struggle is so hard.

They are incredibly restricted in movement and have been in a lot of pain, so I'm doing everything - in addition to having my kids to care for, I'm doing all the chores, and whatever my spouse needs..

The worst of it though, is feeling like my spouse is getting too much of me, but I'm not getting any of them. I can tell they want other company besides mine (we've tried to make visits from friends work, but it's not often enough). They are confined most of the day and have little company other than mine.

I feel like all day I'm busy doing things, and I'll finally get a chance to snuggle up next to them, wishing for nothing but a little happiness to see me, a kiss, or any such thing to show that I'm someone they care about. All I ever get is an immediate ask for the next thing they need. Like not even a hi before "hey can you grab me something?"

We just got married. About a month and a half ago. I understand why they cannot provide the attention that I need, but it doesn't hurt any less.. to wait on them all day long, to comfort them, to bathe them, and yet feel so disconnected from this person. I wish I could describe all of the ways that I feel rejection from them.

To clarify: they can walk around, but only for short periods, they are capable of helping themselves in many ways, but also cannot go without my help for too terribly long. Sometimes I do things for them that I've seen them able to do for themselves, but they get fatigued or pain becomes too much.

I was supposed to be on my honeymoon, but now I just feel more lonely than I have in a very long time.

Holy shit, this is actually ridiculous. A week or 2 ago, I called medicaid about the status on being my grandma's paid caregiver. They of course needed grandma's consent, so I put her on the phone. She's hard of hearing and doesn't speak English. The lady got a spanish interpreter to ask her things like the address.

She messed up a bit because she never had to tell her address before. But she said it perfectly well the other 2 times, but apparently, the interpreter "couldn't confirm it." Yes you fucking could. I know you heard her say the god damn address twice. The fuck do you mean you couldn't confirm it? We all heard it.

And so, I wasn't able to be told the damn status. They had me resend the DAR form that I signed, after like 15 minutes of trying to fucking find it.

Then I call again today because OF COURSE they're not gonna call me back. And you wanna hear what they said? THEY CANT FUCKING ACCEPT IT!!!!! Because apparently, I put the wrong word somewhere EVEN THOUGH I GOT A CALL FROM THE SAME NUMBER TELLING ME TO PUT IT THERE!!!

What the fuck do you mean? And what the fuck do you mean I gotta send a hippaa form, no one told me about a god damn hippaa form. I'm tired of doing new shit all the time. You want me to fax you a picture of my nuts too? You wanna know what I had for breakfast on a Tuesday morning, at 7:46 AM 5 years ago? Why wait until I've already done something to tell me another thing? And why is something always changing?

Is there like some vendetta against me being rightfully paid? I can't work, I don't have a car, I don't trust anyone to take care of grandma, I need to be getting paid.

IVE BEEN TRYING TO DO THIS FOR OVER A FUCKING YEAR

And THEN when I ask about me being her paid caregiver, they tell me that I have to call the department of elderly affairs.

What the fuck do you mean?

Grandma's doctor, our social worker, the nurses, the fucking people at MEDICAID told me to CALL MEDICAID on the status of the MEDICAID WAIVER!!!

What the fuck do you mean I gotta call them? Why the fuck was I being told otherwise?

So then I left a voicemail to elderly affairs. Sounding like I'm soft because I was damn near crying because I'm so overwhelmed by this. This can't be fair. I've need fucking money even 5 bucks a god damn hour. Why is this so hard? This shouldn't have been taking over a fucking year.

We live in florida, she has ChampVA, she's a veteran's widow, she has Medicaid, she has humana. So what the fuck is going on?

I can't be feeling like I'm gonna pass out from all the stress. Because it damn near happened. My grandma comforts me and says that she'll just give me a part of her check, but I don't want that. It's her money and I don't want HER money I want THEIR money that I rightfully deserve. Changing diapers, cooking, cleaning, breaking my fucking back, getting yelled at, having panic attacks, seeing stars, waking up in the middle of the night multiple times and not even making a god damn penny.

I can't handle it anymore. I'm not gonna stop trying, I need this but this shit is killing me. I'm fucking praying I'll get everything soon. In the meantime, I gotta send the damn HIPPA/DAR form or whatever the hell for POA. Then I'll call elderly affairs again tomorrow.

I could have been making a good amount of money. I'm gonna ask for the backpay. I need this.

My mom (late fifties) is a caregiver for her mother with dementia (mid nineties). She has been her caregiver for many years and it’s taken a toll on her. My mom has a whole host of health problems but because she’s always caring for my grandmother, she’s never able to address them. She also often resorts to drinking to cope which also worsens her conditions. I worry for her a lot. I try to help out when I can, but there’s not really a whole lot I can do.

She doesn’t talk about it, but I also imagine she’s grieving too. I know I would be if I were in her position. I’ve seen such a decline in my mom’s physical and mental health since she became a caregiver and it breaks my heart. I don’t want my grandmother to die because I love her, but I also love my mom too and want her to be able to focus on herself.

My mom also says things like how her health is bad and she won’t live a long time like my grandmother so I won’t have to worry about caring for her. It really upsets me when she says things like that, because I want her to live a long time because I love her dearly. I stay alive because I love her and the rest of my family so much.

And that’s another thing. I feel like I can’t rely on my mother for emotional support because she already has so much on her plate. It wouldn’t be fair to her. It’s always been this way. I’ve likely had depressive schizoaffective disorder since childhood (being assessed currently) and recently got diagnosed with PTSD from a trauma in adulthood, and I hid it from her for a long time because I didn’t want to burden her any further.

She knows now because I told her recently, but I still feel like I can’t fill her in very much about it because she has so much going on. It’s also hard to talk about because both of my parents failed to recognize the schizoaffective that began in elementary school and as a result I was kind of medically neglected my adolescence because I didn’t receive any medical care for it until I was able to get it on my own in this past year (I’m currently 21 so I went ten years without medication or therapy).

As a child/teen I also had to sacrifice for my grandmother at times because I would have to give up my bed and bedroom for her relegating me to my mom’s room or the living room for months at a time which also didn’t help my symptoms when I was going through the worst of them. I don’t resent anyone for this because it was necessary, but sometimes I’m still a little touchy about the fact my grandmother came before me as a child.

Anyway, my heart breaks for my family right now. My grandmother is dying, my mom’s health is declining because she’s her caregiver, and my health is also declining but I have to keep my family fairly in the dark because they have a lot going on already so I have to cope alone. Thankfully, I’ve been in therapy a few months and am on meds which helps a little, but it isn’t a magic cure for severe mental illness.

I feel so lost and don’t know what to do, and living kind of far from them doesn’t help. I feel so stressed that I can’t be at home to help my mom or care for her. How can I support my mother and grandmother from far away and when I’m at home with them? Are there any resources that could help my mom have an easier time caring for her mom? Resources to help herself as well? Have any of you been in a similar situation with a similar family dynamic? Also, how I do I delicately talk with my mom about the neglect I faced in childhood while she was caring for her mom?

throwaway account, im sorry.

im just so exhausted, down to the bones of my body.

my husband is mainly physically disabled (he does have mental health issues, but those dont hugely impact his physical ability to do things), so I ask nearly nothing of him. We've worked together to continually figure out and evaluate what he can do for himself to give him as much independence as he can possibly have, but I stilI do 90% of the stuff in this house with very little acknowledgement of the fact that I continuously pit him first.

I asked him to do one single thing last week; "When you go to the toilet, can you sweep the loose cat litter?" Bathroom needs are one of the few things he can do himself without support, and sweeping is a task he can do and loves. He then replied that "I already do", So I apologised for not recognising his contributions and said I was happy for him to continue on doing it. A week later there's bits all over the floor and the brush is exactly where I left the day I asked him to sweep.

I know, from the past, how reminding him he hasn't done it will go; "My hands hurt," or "I forgot. I have memory problems too!" and then I will be upset because his hands haven't prevented him from playing the xbox for all hours of the day or beating himself off, and then I will feel like shit for expecting him to do more than he can, even though said he does, and can, do it, he hasn't said anything like "I can't/couldnt sweep today, could you?"

I have three jobs - two unpaid, one paid. Caring for him is unpaid and takes priority over everything else in my life - even my sleep. If I haven't fallen asleep until 2AM, and he needs help at 3AM, there goes my sleep. Respite isn't an option - he can't be without me for more than 24-36 hours and wouldn't accept anybody else attending to his private needs like dressing or bathing.

He has no sort of grant for funding for another person (a professional) to come in at all, although he would be entitled to it; I would have to figure everything out and apply for it and I just do not have the attention or energy to spare on applying, dealing with paperwork, and then hiring somebody that he would be okay with.

He doesn't currently get the maximum amount of PIP (in the UK, SSDI in the US) that he could get, but again I would have to be the one to handle paperwork (or, making appointments with an advisor for him and going with him) and I'm just so overstretched and exhausted that the thought of taking on more makes me want to curl up and sob. It just seeps the energy from my bones. We just started the process to rent a fully accessible place through social housing, and I have no idea how long that will take or even, really, WHAT it will take: all I know is that now, my husband can't even get out of his wheelchair to take one single step up to access our house, and the inside does not even have enough space for him to walk to the bathroom with both of his crutches.

I'm 30. I've never left the UK. Now, I likely never will. I'll never see the world. I feel guilty for mourning what I've lost when the things he has lost is so much more than I have.

I think the hardest fucking part is that I'm ALSO disabled - which means I have to work twice as hard to even fulfil my own needs, so they undoubtedly fall behind his. I need to shower. I don't have the energy to drag myself out of bed to shower. I need to eat. I feel too guilty to spend money to get takeaway even though there's nothing here I can have to eat because I forgot to get food for MYSELF, again. I just want to slip into a cheeky wee coma so I can have a good rest - even though I know my first waking thought would be "oh my Gd I can't believe I left him without support so I could rest"

I dont even know what I expect from this. I think I just needed to get it out somewhere people who see it will understand.

For me, it's work. I try to tamp down the hard feelings, but I find that memories keep popping up.

When my dad says how much he loves my mom, that memory of when he hit her just pops to the forefront, unbidden.

I really don't want this to affect my care of them and for the most part I'm successful. But back in my own home, my brain definitely classifies him as a hypocrite and I have to really search HARD for a good memory of him parenting us. I won't go into detail...it's not necessary. Suffice it to say that I broke in front of my husband last night and I wish more than anything that those memories would simply disappear.

I sincerely hope I'm alone in this and that you all had wonderful childhoods...But if there is someone out there who can help me be better, I certainly would appreciate it.

Hello again. Second time poster. I'm the primary caregiver for my mom (74, widowed, stage IV metastatic colon cancer with colostomy and severe diabetes) with some respite care at a facility arranged. The reason we got to where we were is bc my mom lied and hadn't gone to a doctor for 30+ years. I always thought I had an excellent childhood, relationship etc. It has obviously taken a hit with the health based lying. She also lied about other family members having cancer by omission (i.e. my aunt from whom my mom was estranged at the time had major breast cancer, which my mom neglected to tell me), which led to me being ignorant about my own cancer risk. My mom has always "gotten things wrong", but it was about silly stuff and always had a kernel of truth. There are no cognitive issues or dementia. I'm starting to think she has severe undiagnosed mental health issues that involve pathological lying. I had hoped that we had turned a corner and were being full disclosure after the health crisis. I live out of state and went to home for a break in caregiving and the aforementioned aunt came to stay. I got a barrage of angry texts from my aunt essentially that my mom indicated I was not letting her make health decisions, withholding her phone etc. The truth was I was making her appointments for her because she told me she was too overwhelmed to and I am also working FT, so I had to make sure I could transport her since she can't drive and regrettably, I only have x hours in the day; I told her not to pick up the phone and give out financial info if she didn't know the number (I work in banking crime/fraud, so it's a sensitive issue). Mom also told me on the phone that her OT cancelled an appointment. I called the OT and she said no...that wasn't the case.

Has anyone dealt with this? We are far beyond "lies due to denial of health issues" or mix ups. I have had talks with her about being accurate with health providers (because she is in the right mind to do so), but it's getting to the point that I am worried about what she is saying about ME. Plus I now feel the need to double check everything due to a lack of trustworthiness. I'm also getting really angry because I have essentially stopped my life to carry her load and she's making it a hundred times more challenging than it needs to be. Given that her cancer prognosis is just a few years and we have so many appointments, IDK that we have the energy to start a battery of mental health testing and what it would even change. I'm already in therapy myself to deal with this situation...

My 31 yo daughter "Ava" had a stroke about 6 weeks ago. She is currently in a sub-accute rehab facility. Thankfully, she hasn't suffered any brain damage. But damn! I hate this. She has lost the use of her left leg and is getting physical therapy. I don't know when or if she will walk again. I go to tge facility every day. Today she needed to go to the bathroom. She pressed the call button. 15 minutes passed and no one has come to help. Prior to this, I was helping her go to the bathroom, but she had a fall last week when I was helping her so I have been told I can't help her. Another 15 mins go by and I tell the nurse my daughter needs to pee and can she get someone to help her? I HATE every minute of this. Finally, two people came to help her. I had to leave. I'm trying to be positive for my daughter, and take it one day at a time but I'm so depressed.

I work in a group home as a DSP and I am a 20 year old woman and 5’2 and skinny. The guys i work with are convicted rapists and are over 6 ft tall and 200+ pounds, they also have intellectual disabilities. They have very aggressive behaviors in their past with use of weapons. I have to work alone with them sometimes for a couple hours of the day and it can be intimidating and scary sometimes. I want to know if anyone here has worked in the same environment and do you bring pepper spray or anything to protect yourself to work? I’m very new to this

Couldn’t take it anymore. Abuse started over material things. She cares more about material things than ME, who has given up 3 MONTHS of my life to care for her. Why do I get shit on? Why? I’m just done. I told hospice to deal with her. I hope she and her material things have a wonderful death together.
Time to take care of me!

I went above the care coordinator's head a few weeks ago to get some stuff straightened out...and it worked.

Then the bitch called APS on us claiming out home is "unlivable" and my dad isn't taking care of himself. They also claimed that I've told them "I'm not his caregiver," which is total bullshit.

The whole thing is bullshit and I feel like its retaliation for going over her head.

I just wanted help, not a accusation of neglect.

APS came in, talked to dad, took some pictures of him and his room and left. The guy said that "some people don't like how others live."

I'm pissed. I feel attacked. I feel like all I get when I ask for help is more and more stress, but NEVER any REAL help.

Why bother to ask for help when THIS is what happens?

I took care of Jane full-time for the past 8 years. We lived together 14 years. She had a TBI, which made her somewhat difficult at time. This past month, she fell three times. I hired a caregiver and went to work to pay for her just a few hours a day. Hospice came in almost two weeks ago and that helped a good bit. I was still in denial. I kept hoping she'd snap out of it, but this past weekend, she dropped off the cliff.

Her family was estranged and when they saw her Sunday, they were stunned. Hospice called code angel for Monday. The comfort care nurse stayed Monday night. I'd been giving her meds every two hours since Friday and I was beyond exhausted. He woke me up when she passed. I spent time with her, let her know I was glad to see her free of her pain, and for her to ride that Harley again.

The house has been silent since yesterday. The kitties are lost. I am lost. I've been 24-7 caregiving since 2016. I guess I'll just focus on each minute for now. I miss her so much.

I'm meeting with the estate attorney next week. There's nothing but the house and the car.

I have a disabled back, every morning I feel like I've been beaten. I have OCD and BPD, my mind is always in chaos. I have harm OCD , and am easily angered.

Taking care of my father the last 4 years but especially the last 2 have destroyed what was left of me. I have no money, no power to make decisions, and no one understands or cares how I feel.

I've gone 3 years without sleep, I have felt shocking hatred and resentment and when I wring out what's left of my body and mind I have to wring out more.

And it's just going to get worse. Dad is starting to fall, he's 82 now. I'm already on my own, what's going to happen when he can't walk? He will need more help in the bathroom (he has rectal cancer) and I can't do it.

He won't go to a home and I don't want to do that... but my family just pretends I have everything under control and I don't. I told my brother that I was dying and he brushed it off because everyone thinks I am dramatic.

Well I am dramatic. That used to be called a cry for help. I do it ALL, and I cannot rest. I have no peace of mind. I am burned out, and I've been on auto pilot for a year.

I wish my dad would simply get some common sense and see what this is doing to me. We have some things he could take care of that would make things easier, but our of devotion to mom, who has been dead 16 years, he won't change. And I end up looking like a dick for pushing for it.

I'm so far gone now that even if this war ends I'll never be right. I'll have to be institutionalized that's how bad it is. I'll never understand why this happened to me.

And yes that's being selfish, but i have to be. If I fail dad is in trouble. He's falling, he's forgetting, he's getting weaker. And no one else cares. Not the family, not God, no one.

How do you all go about getting 24/7 care at home I tried to go through my dads health insurance but they said he doesn’t qualify. I’m not sure if it’s Medicare or Medicaid but he doesn’t qualify for Medicaid. (Insurance is such a scam) I have family who is willing to help but I want to know just in case it falls through. We will be paying out of pocket which is going to be really expensive. Ive been out of work for months being at the hospital with my dad with minimal help. Just trying to figure everything out so it doesn’t fall on me at the last minute because I honestly cannot do it anymore.

I feel so stupid for this feeling.

My parents moved into my house 4 years ago, first for financial reasons, and shortly after my mother was diagnosed with Crohns which has depleted their savings. I’m a 32F and my life as been put on hold for years at a time where I want to move on with my life.

My only solace has been my office. I have a small chair and a TV. It’s the only space where I can work in peace and be myself.

My brother has been struggling severely with his mental health, can no longer work, and now he will have to move in - which I have been advocating for tbh. He is desperate for help. He is constantly shifting in and out of reality. I WFH and will have to give up my office.

This feels like such a trivial thing but I’m frustrated and furious about my SPACE. This is about to be such an overload emotionally, mentally, physically, and now I don’t have a place for myself. I don’t want to put my desk in by bedroom. I will never be able to relax. I could put it in my dining room but I have no doors and my family spends most of the time yelling. I cannot close a door anymore. My house is small already.

I don’t feel like an individual anymore. I barely did before. I spent my whole life being the one of my immigrant family that “made it”. I worked hard to have a great job, good income, all on my own, and now I’m a breadwinner for a family of 4 and I don’t make that much bread.

My moms cancer had gotten worse. Its already in the point where she has colostomy but poop comes out of rectum. Peeing is uncontrollable. Shes always in the bed and needs assistance for everything.

Can you give us some tips on:

1. Since she doesnt control peeing and pooing, how often do u clean her anus and vagina so she wont have rashes?
2. Do you have any tips on how to handle catithers or what diapers should we get that will her avoid rashes.

Any tip will help us, thank u!

Its easy to get bogged down in our line of work. Many posts in the sub are heart wrenching, and the responses are great and positive most of the time, it can still be hard. This thread is for positive thoughts, events, milestones, decisions, your pet doing adorable things to bring a smile, whatever you would like to share with the rest of us!

This is not the place to bring others down.

Just a quick complaint here, I'm not asking for advice it's just a shame to see my mom mentally decline, and yet, she does not have dementia. Mom (71, disabled stroke patient) that I (31) take care of is primarily bedbound. She can stand for a few seconds to get into her wheelchair, but is in bed much of the day, usually watching movies or playing candy crush on her tablet. I'm not complaining about our routine, we've figured out bathing, feeding, toileting, etc, with her medical team.

No, just that she continues to assert a few things:

1. She is not in bed (when she is)
2. She is in a chair (she is in bed)
3. She has a bed, next to her (nonexistent) chair, that she wants to get in. (This is when she is already in bed)
4. Sometimes there are two beds. This idea comes and goes, sometimes she insists that if she is in bed, there is a second bed that slides out from under her bed. This one usually lasts for 3 hours before she admits there is not a second bed.

I consistently try to convince her that she is, indeed, in bed. She does not believe me. She says she is in a chair. When she does believe me, she insists there is a second bed that she wants to get into, that can "slide out" from under her bed and goes next to her bed. I have no idea what she's talking about, she's never had a "second bed" or anything that "slides out"

It's not that bad to deal with, this is literally the worst of her delusions (she doesn't have many, other than sometimes she thinks she has a third cat. We have two cats)

She's a retired professor and somehow still has the mental faculties to correct the grammar of people on TV, and me sometimes. She keeps up with the news and is decently well educated on current events. I won't make it political, but let's just say she has no strange beliefs. Her handwriting is impeccable, better than mine, somehow even after the stroke. She always passes every dementia screening easily. She's very aware of where she is and has great recollection of things.

Why the fuck does she insist that she's not in bed, and/or there's a second bed next to hers? She's not a dumb woman and has no other delusions. She holds strongly to that one though.

First off, I know we can't force him to do anything but it feels like that is what it's coming down to.

My dad turned 80 this year and my siblings (and his siblings) have seen a steep decline in cognition and memory over a short period of time. My aunt visits him often (they do not live near me or my siblings) and early this year, she found a note from the doctor with recommendations for an MRI and instructions for a drug primarily given for Alzheimer's. He did not mention this to anyone, and hasn't since, and when I asked, he just replied "eh, it's something the doctor gave me. But I don't think I'll go to the doctor anymore. There's no point."

And that has seemingly remained true. He says he's seen the doctor but can't articulate when or what the doctor said. I believe he actually hasn't seen the doctor in quite a while, even for regular care. My brother is listed as an approved person on his HIPAA form so should technically be able to speak to the doctor, but the office says the doctor "does not do" telephone calls with family. We're trying to get my aunt included, since she lives close by, but the form has to be notarized and my dad won't do it. Same for me and my sister.

We're at a loss. None of us has ever been through this before. He lives alone in the mountains in a house with steep stairs and a very steep driveway. It snows where he lives. I'm so worried about him but I...don't know what to do now. What do we do?

To add some additional info that may help: he maintains his routine fairly well. He has breakfast every Sunday with my aunt and uncle, lunch every Wednesday with my aunt, volunteers at the library on Tuesdays, goes hiking with his siblings. He eats and showers and does laundry and household chores. He does maintenance work around his house. For the most part, he seems healthy and active and content. But he doesn't remember the names of his grandchildren or where I live or where my brother lives. We took him to a cabin to celebrate his 80th and he couldn't remember if he lived there or even where he lived. It's so hard to reconcile but we feel he is declining quickly and we need to figure something out soon.

TIA, superheroes. You guys are incredible humans.

I just recently found out my mother has advanced cancer. My brother and I are the only family she has. I live 2 states away and my brother is a few hours away. My mother and I are not particularly close as she has had a very rough life and unfortunately made many bad decisions in her younger years. She was in and of our lives often as a children. I work full time and have two small children so I cannot just up and leave. She has very little finances, rents a small apartment in California currently, works as a waitress. My brother and I are trying to figure out the best way to help her from afar. We just want to make sure she is not alone and has the help she needs in the end. Right now she is independent but very soon that will not be the case and she will not be able to work. How does one go about starting the process for in home care/hospice/care home placement? Do I just begin calling facilities? Is it necessary or easier to go through her pcp? We are just not sure where to start.

My grandma has a dog and it's helped so much. Recently she has decided it's her responsibility to feed him, which of course is fine except she has begun to feed him way to often, not being able to remember she just fed him. How do I keep her from feeding/overfeeding the dog? I'd be greatful for any suggestions 🙏🏻

We have 3 adult children. They adore their father, who is dying of cancer. But their idea of support is asking what we need. I think we are at fault because we don't simply say we want your presence. But we can't ask for that, and they rarely offer, and we respect that they have their own lives. Just venting, I guess. Disappointed and sad. He deserves more.

Anyone have ideas/suggestions for side work? I am a full time caregiver for my wife, have a remote job but cannot maintain regular hours. I am a gigging musician as well but that can be disrupted at a moments notice. I’ve been thinking of some kind of short contracting work that pays per job/project. Anyone have any ideas? It is becoming impossible for me to commit to normal hours even with remote work.

I’m dealing with my Moms end of life BS. She is basically homebound. Goes from bed to bathroom to chair. That’s pretty much it. She used to travel, wine and dine, go to the theatre etc. When the itching thing from the CKD started, she was put on a steroid. Steroid has taken away itching, but has taken care of a bunch of other symptoms too! Great right? Until, she is now in denial about what is happening, and thinks she is getting better (she has THREE terminal diagnoses). Now, she is being super shitty and harassing me about taking care of things. Like paying the bills!!!!!!

I’ve been taking care of EVERYTHING, ON MY OWN…for the past THREE MONTHS. And she is acting like I’m ripping her off, or I can’t be trusted with the family heirlooms etc.

I’m over it, my mental health is shot. I am hiring more help, hospice nurse can do her meds, and I am walking away. This is why people drop their parents at nursing homes and walk away. At least she will be in her own house. Surrounded by her expired food and papers. I’m done. /end

Hi everyone! I’m new here, but I wanted to start with some giving before asking for advice on caring for my mom. I know firsthand how overwhelming it can be to keep our loved ones safe, especially during the night. I’ve been using a few products for my 72 yr old mom with dementia that have been real lifesavers in my own caregiving journey, so I thought I’d share in case they might help others here too.

1. Bedside Motion-Sensing Light: These lights have been great for preventing falls. They light up gently when someone gets up, providing enough light without disturbing sleep. Here’s the one that we use from Amazon: Bedside Motion-Sensor Night Light.

2. Smart Medication Dispenser: Forgetting doses was a big issue for us, but these dispensers send reminders and dispense the exact pills needed, which has been a huge relief. This one was more expensive than we would have liked but has been worth the reliability: Hero Automatic Medication Dispenser. 

3. Mercury Alert AI Monitoring System: This one has been a true game-changer not to hire a nighttime sitter. I believe it's still $55/month, but it monitors night-time without needing me to be physically next to her. It tracks when my mom is in bed, sitting, or out of bed for extended periods and sends alerts in case of falls or anything unusual. It’s given me and my family a lot of peace of mind at night without the extra cost or intrusion of 24-hour caregiving. Here’s the link:  Mercury Alert.

4. Anti-Slip Mats and Bed Rails: These small additions have helped minimize risks and add stability for my mom, especially around the bed and bathroom. Here’s the anti-slip mat and a bed rail we use:

• Anti-Slip Shower Mat
• Adjustable Bed Rail

These tools have made things a little easier and safer for my mom and me. I hope some of these recommendations can make a difference for you all too! Let me know if anyone has questions or wants to share other tips!

I'm a 22 year old female, and I'm a personal care aide for a caregiving agency in my area. I don't have a preference for cases, because to me taking care of the elderly is a privilege that I was given. I've been caregiving since I was 20, and my first case was a hospice patient. She was so funny, so cute, so wise, and so sweet. I was 20 at the time, and she passed the day before I had to go see her. Her passing affected me, but I was able to bounce back pretty fast since I didn't witness her last breath and I had immediate consolation from her family and agency. I miss her all the time, she had a beautiful name that i seldom forget too. She was my first angel.

Throughout caregiving and going to college, not too long ago I was taking care of another hospice patient. A rocket scientist with a knack for sweets, she wasn't able to speak but she spoke enough with her eyes. She passed away a week ago today, but it still feels so severe since she took her last breath in front of me while her daughter and sister watched one of my client's favorite movies. She passed away under the most beautiful of circumstances with her little sister and daughter laughing jovially at the movie, her husband sleeping peacefully after taking a bath after god knows how long, her neighbors having come by earlier that day, and i was crocheting next to her with color (she was a lilly pulitzer girl, so boring colors are a cardinal sin). When she passed, we played all her favorite christian send offs, classic rocks, military songs since a lot of her family were part of the service, and she had her nails done and her baby doll she hugged was matching her outfit. she entered her final sleep in the comfort of her own home, where she got to see her little girl grow up and live her american dream with her family.

the agency said i could leave after her passing, but i refused since the family was reasonable in shambles and the agency said that was fine and thanked me for going the extra mile when i didn't have to. i saw her get taken by the funeral home, held her hand that was once warm one more time, pecked her forehead, and thanked the Lord for receiving her in his paradise. i didn't leave until the household fell asleep, i even reminded the daughter to admit herself to an ER if she ever felt so much pain to continue to live and feels like an imminent danger to herself or others around her, because im also an only child like her and also very to herself like me so i can't imagine the way this is hitting her losing her mother. luckily her friends are some of the best in the world, immediately getting into their cars and running to her side. she thanked me for everything, her father and her aunt said i had a family with them and im so forever grateful.

i don't know why im still feeling so much loss, i haven't been with her so long and i feel like i don't have a right to feel as strongly as i do. i was with her awake overnight three days a week from 7pm-7am, we watched family guy and she got to tell me good morning once despite speaking being super difficult. she was a wonderful client, when she could smile you could tell, and she liked to hold hands when she felt restless. she was a wonderful client, it's unfortunate that our time together was cut short so soon. i know she's in a better place, anybody would be able to tell me that. i know her suffering is over too, and there's no pain to feel. but i miss her, i liked to think we would've had good conversations since we had a lot of similar hobbies and interests. the funeral home was a wonderful duo of two men dressed in suits, and they were so gentle and respectful to her. i loved that instead of using the plastic blue ones, they used a red velvet one. i know she was in the best hands until the very end, but i don't know how to push through faster than what im doing.

i've been irritable, eating more, drinking more, and overall just not doing what i need to be doing. im passing my classes and doing what i need to assignment wise, im doing the bare minimum to keep myself from drowning. what can i do to cope? what worked for you guys?

Sorry in advance for popping on here just to rant/for the word vomit, but I'm lost. Not even sure what I'm looking for here.

My mother and I have been taking care of my grandparents(her parents) ever since my grandfather had a stroke when I was 19. He passed three-ish years later due to complications caused by the stroke. Soon after, my grandmother developed dementia and slowly our entire lives became enveloped on what she needed and her care. We've had no real support aside from each other; my mom has two brothers but one lives half way across the country and the other has basically cut out everyone who won't offer him money. My mom's been working to support us, while I've gotten a small stipend from the government to be a SAH caregiver for the last year.

Yesterday, we were finally able to get my grandmother into a care home. When she was herself, she had told my mother and I that was what she'd wanted when/if she developed dementia. She'd gone through everything with her mother 20ish years ago and knew how hard it was. Of course, her current self didn't agree and there is so much guilt over just "abandoning" her, but after one situation where she left the house while I was in the bathroom it just isn't safe for her anymore. Aside from the guilt, I feel entirely lost. I'm 30 now; my entire early adulthood is gone and I don't know who I am. The last time I hung out with friends was in 2021, and while I chat with them on occasion I've drifted apart from most of them over the years. I can't even think of what I need because I know that my mom is suffering too and of course I prioritize her over myself even if she doesn't want me to.

I know I have to move on, get a job, and sort my life out. But I don't even know how to start. It feels like I pulled myself out of quicksand only to trip and fall into another pit. Especially since my mental health is already in tatters and my physical health is a mess due to chronic pain issues.

Again, I'm very sorry for the downer word vomit. Just don't know how else to get all this out without bothering my mom more.

Hi all, I’m just wanting to vent/ ask if I’m the only one who doesn’t feel sexually attracted to their spouse that they’re caregiver to? Small background for context: My husband had a below the knee amputation this May and shortly after that was discharged to come home, we live with my family due to SUPER high cost of living in Vancouver, BC. So I stepped up, as one does in situations like this, took care of him fully (he was very weak coming home from the hospital) and am still taking care of him, as he’s still in the fitting stage of prosthetic, anyway he recently was able to move back upstairs to our bedroom (it was easier for him to live downstairs until he was stronger), he made a move a few days after and I just kind of froze and said I was tired ( it’s tiring taking care of your spouse and everything else) but we physically hadn’t been intimate with each other since a few weeks before he landed in the hospital(end of March)… is it normal to not feel so attracted to the person you’ve been caring for for the last 6 months? How have you gotten over the “hump” (no pun intended)? Or is the relationship doomed and there’s no way back & I’m just a horrible person? As I feel disconnected, like this isn’t a situation that you just pick up from where you left off from… a major trauma happened and we’re both dealing with the aftermath in whatever at we can, so sorry if this is super scattered and there’s some facts missing, please let me know if more info is needed and I’ll provide what I can, thanks in advance for your advice, it’ll mean worlds for other’s perspective on this.

My mum passed in 1982. My little bird that I visit, says she has seen her (my mum) twice at the facility she is in. I'm pretty sure that I have mentioned my mum's passing during our talks about our family and parents. Before my little bird moved into this facility, she had seen both of her parents AND DOG in her home many times. She described them in great detail and what had happened. I believe her completely and I believe in the afterlife communication .

I asked her if she could describe my mum, she said that the woman would always be gone when she looked again. She just knows it's my mum.

Nope she doesn't have Alzheimer's and is mentally still pretty sharp. She asks me why she's there and I told her she shouldn't be there. To which she responded "maybe they don't know she's here and will leave her alone".

Quite an interesting day. I had such good bumps when she told me this as we were having lunch in the dining hall.

I want to know more.

You guys as family members have to advocate or have friends advocate Or have the patient advocate for themselves if they can And get their paperwork together for end of life Here’s my story I 36 year-old female at that time I’m 37 now went in for back surgery April 23. I wake up get the news that my mom‘s family has called now Quick back story on my mom‘s family. We don’t speak due to the emotional and physically abuse me in 2019 after my dad died I wake up from surgery 5 1/2 hours of back surgery. The nurse doesn’t say recovery. She doesn’t say anything all she says to me is you got a phone call from the Bahamas now Granite I had just had surgery so my brain cells while waking up And it took me a couple minutes to understand what phone call from the Bahamas was once I did understand I burst into tears The nurse said shut up basically you are scaring the other patient 40 patients mind you yes 40 patient were in recovery with me. All recovering from different things I was the only one in a back brace with oxygen mask on with my leg halfway up in the air, don’t ask about that The next thing I know I get a visitor I wasn’t supposed to have visitors in recovery, but they made a special exception because of what this visitor was doing (priest) so the point of my story is you need to get back in recovery with your family members or have a friend go back or have a chaplain go back and shut these nurses up because nurse susie Q probably thought I had no family and she could treat me like shit and yes, I do have no family, but you can’t treat people like shit as they wake up from surgery Remember, you always know your family members best and if your dear friend reading this, you know your friend best depending on their level of friendship always always have someone come up and see you and because I and especially in the hospital because these doctors and nurses are done because of the pandemic and so you may have to scream at a couple doctors and nurses to get your loved ones needs met And side note I have a disability and so I’m using speech dictation to type this post Have a great day and let me know if you have any questions I’ll comment I’m open to DM’s and comments on his post about advocacy and yes, all my advocates have helped me through this surgery