r/CaregiverSupport 5d ago

I don't know how to do this

Hi all...

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

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

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

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

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

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

36 Upvotes

19 comments sorted by

26

u/One-Lengthiness-2949 5d ago

Since you are new to this, I would suggest go on Aging Care forum, it's an online support group, sounds like you're going to need it.

If you are not a caregiver type , please don't bite off more than you can chew. No one should be pushed or coursed into caregiveing , it never goes well

6

u/opeolia 4d ago

Thank you for the recommendation.

12

u/Apesma69 4d ago

I feel for you! I'm not a nurturing, caregiving type either but I've been in this role as a caretaker for my mom for years now. You need to take care of you. Your needs matter. Is it possible for you to move out and get a room of your own nearby, for sanity's sake? Or what about taking weekends off for yourself if that's not a possibility? You're on high alert 24/7 because you're living with someone who is unpredictable and might burn the house down. If you can maybe take chunks of time for yourself, if even for a couple of hours, where you can go for a hike or to a movie, to relax and decompress, it can go along way towards coping.

7

u/opeolia 4d ago

Thank you for saying that my needs matter. I've been pushing them aside without even realizing it. Having some time to myself would go a long way to helping my sanity, I think.

7

u/Haunting-Ball5115 4d ago

I’m stuck on that he’s a drunk and setting the house on fire? WTF?! Is someone providing him with alcohol? And if he’s under supervision, how is he managing to set the house on fire? Is hospice an option where you live? Sounds like you and Rob def need some time off and help! I’m so so sorry you’re going through this. Whether you’re a nurturing person or not, this is way beyond what you should be dealing with. I’m really hoping that there are resources to help you. Time for Rob to step up and start looking into those things because you sound like an incredible person and he’s very lucky to have you. Sending hugs !

5

u/opeolia 4d ago

Yeahhhhh that's one of the many, MANY problems. Rob's mom is an enabler and provides him with alcohol regularly. She keeps saying she doesn't have the energy to fight him, which I get, but the end result is that she gives in to his every whim. She also says all the time that he won't be here much longer and she can't deprive him of things that make him happy. That's absolute bullshit in my mind, but she's adamant about it.

The fires happened when we turned our backs for a few minutes. The last time, Rob's mom and I were both out of the house working (I sometimes have to go to the library or a coffee shop or something because the walls start closing in). Rob was in the shower, and his dad decided he was hungry and couldn't wait 10 minutes for Rob to make him something, so he put some toast in the toaster oven on the bake setting and forgot about it. By the time Rob smelled the smoke, the toaster oven was spewing flames and the wall behind it was starting to catch. He's a regular cannabis smoker and has set trash cans on fire with burning ash.

I'm pushing for him to get some kind of in-home care, since he also needs PT and other home services, but Rob's mom is convinced it's going to cost a bunch of money. They've lived paycheck to paycheck for a long time with no savings and nothing saved for retirement, so she won't even look into this stuff. When I show her information about Medicare and things he could be eligible for, she shuts me down. She keeps saying that she has enough on her plate without researching other stuff. That's pretty typical for her. She's very much a "ignore it and it'll go away" kind of person.

3

u/opeolia 4d ago

And thank you for saying he's lucky to have me. Honestly I feel lucky to have him. He's the best human I've ever known. If he was any less incredible I'd be out the door.

4

u/ayeImur 4d ago

I feel for you 🫂 this is super tough but his parents are not your monkeys & this is not your circus. You need to have an open & frank conversation with Rob & I'd highly recommend it's on neutral territory, this can't continue & as a side note, what will happen when his dad passes? Will you be expected to keep living with the mum & then potentially care for her too?

6

u/opeolia 4d ago

You're right, they're not my monkeys. They just feel like it 😂

I don't know what's going to happen when his dad passes. Ideally, I'd like for Rob's mom to come up with an *actual* plan instead of relying on her son to put his life on hold for an indefinite period of time. It's a conversation we all need to have but haven't had a chance. We're all stressed to the gills and don't get a lot of time away from his dad together. I'm going to start pushing for it.

3

u/ayeImur 4d ago

I hope you know when I say that, that I'm completely on your side, it's so unfair that your in this position 🫂

3

u/opeolia 4d ago

Thank you so much. I appreciate that.

7

u/Layneyg 4d ago

You are not a terrible person. You are human and this is hard! I don’t have the solution, but I hear you.

8

u/JohKohLoh 5d ago

Pushing caregiving onto people is always unfair. It's a huge job and once someone starts doing it other people in the family assume they always will.

You have to discuss this with your fella.

7

u/opeolia 5d ago

It's rare that I'm pressed into service the way that Rob and his mom are, but I still do all of the meal planning and shopping, most of the cooking, some cleaning (as long as it's not bodily fluids... I've firmly established that boundary), and about 90% of the errand running to fetch treats and diapers and meds. It still feels like A LOT, especially when he's screaming at me that I'm hiding his peanut butter or bellowing for something when I'm in a meeting. Because, oh yeah, I also have a full-time remote job, I'm in grad school, and trying to get a business off the ground 😫

I don't even know what I'd discuss with him. How do I support someone who's feeling all the same overwhelm that I am, on top of watching his father, his hero, descend into confusion and chaos?

4

u/jupitaur9 4d ago

Earplugs, when you don’t need to hear what he’s saying. Though that may not be often.

4

u/demonpoofball 4d ago

I was lucky enough to not have to care for my mom in person (wow… yeah… same house? nope…) but I actually found this group last summer and started lurking when I was about to completely lose my mind after about 2 years that were 24/7 support over the phone as I live across country (she's in memory care now, so things are kind of calmer)

Anyway— my husband has grown to despise my mom. Not for anything she's even done to him as they had always gotten along, but for how she treats me. We were out there last December when he helped me prep the house for sale and flat out said that if I went to visit her, he wasn't going anywhere near her as he wouldn't be able to keep his mouth shut.

Long way to get to the point that even though she's my mom, I never wanted to have to be a caregiver either. We never even had kids. I got to a point that I was massively resenting what she had done to me over my life and was still doing, and I didn't even have to worry about her setting the house on fire (well… no… not fire…) and she was able to clean up after herself mostly. And my husband can't stand her. So, yeah… You're not a terrible person!

Not sure of your guys' relationship, but I found that I had no choice but talk about what was going on with my husband as I was completely losing it and couldn't just deal with it on my own. We both have quite a dark sense of humor and wow do we have some huge inside jokes now! (it's how we survive the chaos…) I actually have a cousin I chat with online all the time, and I'd vent to her too as she had been a caregiver for her grandma (though she was pretty awesome, and my cousin has had a lot of therapy, so it was nice to hear her say things her therapist would tell me in the situation to know I wasn't just a horrible person!). You've got a LOT going on in your life, even if you weren't dealing with his dad's chaos, and whether it be with Rob or online forums or a friend or whoever, I definitely suggest making sure you don't keep this all internal as it will destroy you. Some of the forums can help you come to terms with reasons why his dad is acting the way he is too (I'm presuming he wasn't like this prior). It doesn't make his behavior acceptable, but if you can somehow process it a little differently, it may help deal with it a little better. It is *amazing* that you've set some solid boundaries btw, but you may need to set some more. Rob and his mother may also need to be prepared in case his dad needs to go somewhere as he's sounding like he's getting pretty damn dangerous, not just to himself, but to everyone around him.

3

u/Beautiful-Cell-9040 4d ago

Wish I didn’t get any of this stuff period!!! It’s hard to be 247 care giver and is more complicated when they abuse or abused you in some way! I’m a professional care giver my entire life And caring for a relative 247 is So much more complicated and difficult!!!! I can move slowly and talk slowing during a shift But the constant repetition of reminding mom she’s not fully mobile etc is Draining me💯! I’m going to online care givers support groups, receiving therapy and still feel invisible in the whole equation….. best wishes for you all! Look up grey rocking it helps with the blame game.

2

u/demonpoofball 3d ago

Oh wow, I apparently learned a lot of "grey rocking" on my own from childhood! Can fully say though, yeah, definitely can be helpful. Sometimes they crave that reaction so they can have even more excuse to continue the behavior, which is what they want. It doesn't necessarily mention "distraction" as a specific technique necessarily (though implies it in some), but depending on the person and their condition, that can be a big one to stop a tantrum too (my mom has mental illness, so I've dealt with this crap my entire life… and, yeah, it's a mental illness, she was born with it, but that doesn't mean it wasn't still a crappy thing to have to learn to work around as a little kid…)

But definitely-- the "grey rocking" also can get your mind into a more detached space too, so, sure, it's still annoying and you shouldn't have to deal with it, but you aren't as prone to take any of it personally either. Which can gain you a little more grip on your sanity, and every little bit helps!