r/caregivers

Location: Roseville California

To make a long story short, I am autistic and 22 years old, I was told that I need caregivers in order to stay living by myself and keep my cats (so they dont go to a shelter after I get put into a group home)

I recently found out that none of that was true, I didnt HAVE to get services or ELSE id get conserved, I was lied to and coerced and scared into giving into having caregivers. But I digress.

My service coordinator had bought concert tickets to two diffrent shows, as well as one bull riding show, a cosplay with accessories and a ticket to a local anime convention, and hundreds of dollars worth of collectibles, all as incentives/gifts if i "am nice to staff" and stay with the company.

A week later, my staff leaves me alone for hours at night when I am supposed to have 24 hour care. She thought she could leave because I would be asleep, but i woke up scared because no one was there.

I find out that this is considered medical neglect, and I let adult protective services know about the situation. The staff was denying it in a group chat with me and the service coordinator, yet her excuses for what happened kept changing, the times she arrived kept changing, and the service coordinator ignored all this completely and begged me to keep her as a staff.

The service coordinator had told me that i didnt "earn" the stuff he bought me since I was "rude to staff" (all I did was report how staff was treating me wrong) and he also texted me telling me that i needed to keep the service, in order to receive everything that he bought for me.

I talked to my mom about all this, she told me that the service coordinator was essentially "buying my silence" and "pacifying" me when he was hiring workers that were subpar and didn't care about their job or helping me, so that I would "be happy" and keep the service. She got other outside opinions on this, and they all agree that I shouldn't be "bought" into keeping the peace by not advocating for myself as well as "bought" into staying with the service.

Also, the reason that he gave Alta Regional for canceling my services, is that I had been "Verbally abusive" which is crazy considering I had never once name called, swore at, or yelled about the staff neglecting me. All I had done was stick up for myself, now im being labeled as the bad guy.

Its also crazy how I am being called abusive after the staff has been abusive and/or neglectful to me in diffrent ways, which I get into in these next few paragraphs.

The service coordinator hired someone that showed up to the interview visibly intoxicated (As described by a diffrent staff that showed up to the interview as well)

This staff that arrived drunk, had shown up to my house drinking and throwing buzz balls out of her car, when she was supposed to be taking me somewhere to buy something, WHICH WOULD HAVE MEANT THAT SHE WAS PLANNING ON DRINKING AND DRIVING WITH ME, A DISABLED ADULT IN THE CAR BTW.

I also had a staff that would verbally abuse me by constantly yelling at me whenever I was confused about soemthing (I have a learning disability and he happend to have a thick accent, I couldn't always understand him right away) and he would yell at me constantly, it got to a point where he yelled at me an entire 40 minute car ride to a doctors appointment, all because I was annoyed I couldn't find his car and didnt want to be late to the appointment and had voiced my concerns. He yelled the whole way there, I kept trying to steer the conversation away from the argument so he would stop yelling at me, I was trapped in the car with him and nowhere else to go (unless I wanted to jump out and injure myself)

I had told my doctor everything after crying about it. I had asked for an uber or lyft or otherwise safe ride home, and thankfully was accommodated for.

I hate to be like, materialistic I guess, but I really wanted the stuff he bought for me, and Im upset that he's withholding the stuff from me now, because the service ended, and it also feels like it was a direct retaliation of me making an APS report, because i was not rude at the staff at ALL.

Am I able to get the stuff he bought me back? It just upsets me that he would take that from me, and i dont even have the option to buy the stuff myself now because he already bought it (The collectibles were on Ebay and the listing only had one of each item)

I just feel bad that my figurines and cosplay and tickets are now stuck with someone thats shitty. Maybe its the way I have attachment to the things I like, that they feel "real" to me when I know they are not, idk. I hope wherever my stuff is, that maybe it was given to charity or someone deserving of it?? And hopefully he didnt just throw everything away??? Regardless, since it was for me, I hope I can get the stuff back soemhow??

If the story sounds familiar, I have posted about this before, I just have more questions as time goes on and more stuff arises.

My husband has been battling stage 4 cancer for a year. Over the last two weeks he has verbally lashed out at me twice, where his words do NOT match the situation. Last night he was struggling to clear thick secretions from his throat (an ongoing issue that can sometimes prove dangerous due to the reconstructive surgery that was performed on his throat last year). This happened right before bed, I had already turned on his humidifier and administered medication for this, but I suggested he stand in a steamy shower for a few minutes to help loosen stuff. He said that doesn't work for him. I said it works for everyone, that's what they do for hospital patients is hook them up to a strong humidifier. He said it doesn't work for him he's tried a bunch. I said I've never seen him try (he bathes twice a week and he's never once jumped up to say I'm gonna rinse off cuz it might help my throat. We'vebeen married 17 years). He began using curse words and hateful speech. I got out of bed and curled up with one of our kids.

He texted continuing to justify and minimize and how hurtful his words had just been. Here is my response:

"My yesterday in no particular order: I did two full loads of dishes. I did three loads of laundry. I emailed the school for the kids. I cleaned your pee and spit off the bathroom toilet. I emailed [business partner] about doing part time work. I did a grocery haul for a week's worth of groceries for the entire family, including all the meals I prepare for you several times every single day, I walked 2 miles with the dog, I did a short jaunt up the alley with the family, I scrubbed down the kitchen including the stove top and counters, I partnered up with [child] to deep clean his room so that he has a better understanding of how to complete the task and have actual life skills, I emailed [child's] team mom, I did a mini kitchen science experiment with the kids, I patched [child's] eye so he one day will have stronger vision, I listened to [child] share every detail of her Halloween costume idea and then looked up stuff online with her, I prepped two homecooked meals for you, I cooked 2 homemade meals for the kids, I ordered lunch for the kids, I braided [child's] hair, I put the living room back together after a weekend of hosting a house full of people, I paid a bill, I sat with [child] while he read to me and then I took time to read to him, I fed the dog, I drove to Orange and then sat in 40 minutes of traffic to return home so I could be there for your Oncology appt, I went to a quick doctor's appt for myself, I prepped a syringe of medicine and refilled your humidifier like i do every night, and then I got in bed and listened to you verbally assault me and minimize how incredibly wrong it is for you to speak to me that way. I will do for you and the family all day, but I will not be talked to that way. That's twice in 2 weeks, you need to take a real good look at that. Then kids have heard you both times. Last night I had to console [child] who heard every sentence from her bed through the walls and tell her you didn't mean what you said, that the medicine has you acting different. Its 6am and I'm cleaning puke off [child's] bed sheets. Cancer has completely taken over this house. But as little control as you have over your life at the moment, you do have control over how you speak to me and what the kids will remember about this time. You can be anything to me. Don't be a monster."

But really I know this is one more thing I'm going to have to brush aside and blame cancer for because its not who he is normally.

Watching someone slowly die is like watching a thousand slow deaths of everything you loved about them. This hurts. And I hurt. And there really isn't time for me to hurt because I have a house full of people who depend on one of us to be OK. But this morning, I'm not OK. ​​

I (25F) live at my parents property. I have my own small container home which I am very grateful for. I am currently trying to get a catering business off the ground, and I can’t afford to move, plus there is nowhere suitable near enough to my parents. I have a sibling who is physically disabled and requires full time care, my mother is her primary caregiver, I am the second. I help out with her basic needs, and I enjoy spending time with my sister because we are very close.
But I am exhausted. I am basically on call and have to drop whatever I am doing when my parents decide to do something and I have to look after her. My parents also stress me out in general, they come over to my house unannounced among many things.
We live in the countryside so all my friends are hours away and I never see them. I am so isolated, and my doctors have warned that I am dealing with an extreme amount of long term stress to the point it is affecting my body.
I feel like I have wasted the last five years of my life, I never got to move away and chase my dreams. But I also feel like there was no point because in a certain amount of years, my sibling’s care will pass to me when my parents can no longer do it.
I have no savings because of my small business, but it’s hard to get it off the ground where I live.
I am angry and upset all the time. I have been taking care of my sibling since I was a kid, my parents worked hard and I had to step in. My parents rely on me yet do not have any respect for my input and ideas for my sibling’s care. I do not resent my sibling, I love my sibling, but I resent the situation I am in. I genuinely do not know how to be happy with my life, I should be happy with a great small house and very low rent, but I’m not. I’ve been to therapy and done the work, tried to set boundaries, try to make time for myself and things I enjoy. Nothing works and I’m miserable.
Honestly don’t know what advice I’m looking for.

My husband is in chronic pain from failed hip surgeries. We are in line for yet another surgery. The wait is terrible. He is in 49 and I’m 47. Advice in how anyone works and is a caregiver. I have looked for remote work but I only can find sales which means on the phone 8 hours a day. I can’t caregiver like that. I’m at a loss. He is currently on short term disability but when that ends, I don’t know how we make it financially.

I've recently started helping my mom with appointments, insurance paperwork and medical decisions. The hardest part hasn't been the caregiving itself, it's remembering where everything is and keeping track of who has what information. I'm looking for a better system before it gets even more complicated. What has worked for everyone here?

Sorry if this isn’t the right place to post, but I’m really stuck and would appreciate some advice from people who might have experience with care homes, safeguarding, or NHS/Welsh care services.
My brother lives in a care home in the Carmarthen area. He has significant additional needs and is unable to properly communicate when he is in pain or explain what is wrong.
He spends six days a week at the care home and comes home every Friday, returning Saturday morning. He actually seems to love the place and regularly shows us, in his own way, that he likes going back. Because of that, my mum and I have always tried to trust the care home and, until recently, we genuinely didn’t believe there was any negligence.
However, we’re becoming increasingly concerned about things that seem to happen while he’s there but don’t happen when he’s at home.
For example, his bedroom can get extremely hot. We know he doesn’t like fans, but at home we can obviously monitor him and make sure he doesn’t overheat. At the care home, we’re worried because he can’t communicate that he’s too hot.
About five weeks ago, he came home and we were absolutely shocked. His back and stomach were covered in blood, with large areas where the skin had been scratched/ripped away. There were scars, open wounds and patches of missing skin.
We were told he had been scratching himself, potentially because of the heat. He’s supposed to have two support workers with him at all times, so we don’t understand how his skin could become this badly damaged without anyone intervening earlier.
My mum went to Boots and was recommended a cream. We used it on him at home and, after just one night, his skin looked noticeably better. We asked the care home to use it, but they immediately told us they couldn’t because it hadn’t been prescribed by his GP.
The following week, his back was bad again was arguably worse. We were then told he was on antibiotics. Three weeks later, his skin is slowly improving, but it’s still nowhere near normal.
We’ve also been asking about air conditioning because of the heat. The care home initially said it shouldn’t be a problem but that they needed authorisation from senior management and that it wouldn’t be funded by the government. We made it clear we are willing to pay for it ourselves.
It has now been five weeks, and despite repeated chasing, the air conditioning still hasn’t been approved or installed.
Then, when he recently came home, we noticed that one of his toenails was missing and he had a deep cut on his foot. There was so much blood that it was literally dripping from his foot while he was in the shower.
The care home apparently doesn’t know how the injury happened.
We’re also being told that his toes have become rough because he apparently grinds his shoes while walking. We’ve never seen him do this at home.
His fingernails and the skin around his fingers are also constantly damaged because he has bitten them for years, apparently due to anxiety. We’ve tried all sorts of things. Recently we’ve been using a tape designed for dogs around his fingers, which has actually helped quite a lot, although he sometimes removes it.
But here’s the thing that is really bothering us: when he’s at home, these problems improve incredibly quickly.
Last Christmas he stayed with us for a week, and his fingers, nails and surrounding skin recovered dramatically. When he’s at home, we don’t see the same level of injuries, scratching or damage that we’re seeing when he’s at the care home.
We’re now also being told that he may be having a reaction to medication he’s been taking for around 20 years, alongside the antibiotic cream he’s currently receiving from the GP.
My mum questioned three weeks ago why he wasn’t being referred to a dermatologist/skin specialist when his skin was clearly the main problem, but we’re still in this situation.
The care home receives around £250,000 a year for his care, which makes this even more difficult for us to understand. My mum has even said that if she could stop working, she would happily care for him herself for far less than that but obviously the government won’t allow that..

We’re now at the point where we feel we need to formally complain or involve someone outside the care home.
But we’re terrified.
We’ve heard stories about people making complaints and then their loved ones receiving worse treatment afterwards. My brother can’t communicate properly and can’t tell us if somebody treats him badly, so we’re genuinely frightened that making a complaint could somehow make things worse for him.
At the same time, we can’t just sit back and accept this. Something doesn’t feel right, and we don’t know what the correct next step is.
We’re not trying to attack the care home or accuse anyone of something we can’t prove. We just want someone independent to properly look into what’s happening and make sure he’s safe and receiving the care he’s supposed to be receiving.

My wife had knee replacement surgery three weeks ago and I honestly thought the hardest part would be helping her get around. What surprised me was how many little things in our house suddenly became obstacles, especially our bathroom. Stepping over the tub, balancing on one leg, trying not to slip. It made me realize we designed our home around healthy people without even thinking about it. Did anyone else only notice these things after an injury?

Does anyone know of a sling that goes around the shoulders AND under the arms for helping my loved one from lying to sitting? No hospital bed, of course, and no hoyer. So needs to have hand straps for manual assist instead of the more common hoyer straps.
I’ve seen some gait straps/transfer straps, but they don’t go around the arms. Am I looking for something that doesn’t exist???
Thx

Need some advice and any and all that I can get !

I’m a private sitter for a 83 yr old sweet lady and been private sitting with her for a little over a year , well here is what I need any and all advice I can get …
Let me start off by saying I’m thankful I have found this group ! Here is what I got goin on right now I can’t for the life of me get her to bath or anything like that , I fix her hair twice a week and she will still find Lotion and put it all in her hair )I’ve went thru the house and throwed all the lotions aways I thought but she hides it guess) next her hygiene
how so I make her understand she’s gota get a bath and be clean , I’ve emailed the family on this x2 she wants to go home and mind you she is HOME , she pisses and shits the bed (I just got big washable pads for her) hoping this will cut down on striping her bed daily for whatever reason she wants to spear the shit everywhere liek she’s forgot how to wipe (how do you fix that) she knows no one except her husband well by name and never calls me by name until I tell her my name that’s no big deal ! Her son called me last week and said “Moms mind is Gone” I said I know this did you not get my email a month ago he said let me look and yep but no reply ! He ask me what should he do well I don’t have that answer bc I really don’t know , all I know is her husband is 84 and he’s wore smooth out and I expressed that I’m that email mind you !! She has 3 adult children and none ever come see her expect the 1 son it’s mind blowing to me I don’t understand why they won’t help more they all gota know how bad off she is at this point .. sorry this was so long but I had to get it off my chest thank you for letting me vent or explain my ordeal
Much Love xo xo

I also need to add that she’s kicked me out of her house x3 can be very mean at times !!!

My grandpa has parkinson and also recently got diagnosed with diabetes. Before I'll just mention that I don't know everything about these two things so if I'm wrong about anything please correct me.

My grandpa had parkinson for years now and he has trouble standing straight. He falls on daily basis, he hurt himself multiple times already, not seriously but I unfortunately feel like it's just a matter of time before something really bad happens.. My grandma bought him a walked so he doesn't fall every single day but he refuses to use it, saying he doesn't need it but he already got injured multiple times and no one is able to catch him if he does, he's 6ft 220 pound man and it's mostly small women here.

Another thing is is diabetes. He just got diagnosed few days ago and he loves sweets. Sweetened beer and big glass of tea (with bunch of sugar ofc) is his daily routine and when my aunt and grandma tried to explain to him that he can't have so much sugar anymore he got mad and haven't given it up.

Does anyone know how can I explain it to him or help him somehow? I can't cure him magically but I need to explain to him somehow that now having so much sugar is bad for him and he can get him or someone else hurt without the walker. He gets mad and says I'm wrong and I don't know anymore I'm so tired but I just want the best for him, it's horrible seeing him getting hurt and my grandma crying seeing him struggle.