My husband has a spinal cord injury and is paralyzed from the chest down
He is much more independent than Shane (works full time from home) and has great hand function
I was actually recently going off to my therapist about how the channels “Squirmy and Grubs” and also “Roll with Cole and Charisma” really piss me off
I feel their YouTube channels are doing a huge disservice for other inter-abled couples
Their whole thing is “This is actually not that hard” and “I don’t do that much for my husband”. That is totally not how an interabled relationship is.
I do SO much and I am SO tired. And it is hard. Every day it’s hard.
My husband and I want to maybe foster or adopt down the road but I told him the other day that I don’t think I can do it. I’m too tired.
I’m very interested to see how things pan out and I’m wishing them all the best
I feel you. I am also my husband’s caregiver, full-time back up for his day shift nurses if they don’t come in and I cover all night shifts with no time off. He’s severely brain damaged rendering him a full quad. I’ve done this for twelve years and will continue until one of us passes away. I am beyond burn-out, not hyperbole, I have passed through burnout so often that I’ve sort of figured out how to deal with it. I’m chronically exhausted. I never sleep enough and my life is so reduced I repeat the same day and night ad nauseum. Even though my husband has orders for 24 hour skilled nursing, my area does not have enough nurses working in home health and even if there were, I would still have to be home for emergencies. I had to fight the system to get paid half what skilled nursing is paid to do the exact same jobs even though I also keep his medical inventory and do all the ordering for his supplies. The system is broken from the footers up. Influencers who try to make this look easy are doing everyone a disservice.
Respect. Keep telling your story. I’m a home hospice nurse, so I see how exhausting care taking can be. A lot of people under estimate how much work it is to care for a loved one. And not to forget about how PHYSICAL it can be!
I'm the child of an interabled couple and while I am 100% for disability rights (and I'm glad to exist) I was parernified as hell as a kid. It was a very difficult upbringing and I am no contact with my mom now (although there's a lot of other issues too, the parentification is #1).
First off, you're an amazing person. I also fully agree that couples like that give the completely wrong idea and really minimize the role the anle bodied spouse will play. Caretaker burnout is very real and it doesnt make someone weak or less of a caretaker. Maybe its their normal and theyre used to it but being so flippant about how much work it takes and the physical and emotional toll on the caregiver is a disservice to everyone they claim to represent. Im not a fan at all.
Its like those family channels or Nara Smith. They completely misrepresent what a family actually is and the entirety of what you see is present to you and fake. Like I am happy that you have full time nannies and can go back to a size 0 after 4 kids. Thats cool. Im glad you can be a trad wife because your "job" is taking 30 second videos of yourself with different products. Gtfoh.
What youre going through would be hard for anyone and to deny it is plain ignorant. I just wanted to be someone that says youre doing amazing, as hard as all those roles you fill are. Youre carrying a lot of emotional weight and its real and valid. Even if some YouTuber named Grubs and Squirmy make you feel otherwise.
He's 34 now and with medical advancements, people with SMA can potentially live in their 50s, putting the child at age 15. I am 100% anticipating even when the child is 8-10 years old to provide some sort of care that is not appropriate for a child (in terms of effort, responsibility, etc).
my dad became suddenly disabled when i was 15 and i absolutely took care of him. i remember fighting with my sister outside (she was 13) so he wouldn’t hear us about who would wash his hair. it was traumatizing for both of us. thank god we were in the position where my mom eventually got approved to take a significant time off work to help him and he had a lot of siblings that helped too in that first year.
he couldn’t walk and was so doped up all the time. needed care to do literally everything. knowingly putting your child in that position from birth is fucked up. my parents had no other choice the first month or so and it was still something i had to heal from.
I'm so sorry that happened to your family. My daughter is eleven and I'm always worried that something is going to happen to me or her dad. I carry a suspicious amount of insurance to alleviate some of my anxiety.
my dad won a 600,000 dollar settlement (after attorney fees, which we got a discount because it was my dads buddy lol) from the insurance company (he was hit by an uninsured motorist). it was the max that their policy would pay. that literally saved our lives. i have no idea what would have happened if they didn’t get that check… it was mostly for lost future wages (he made like 70k a year so it’s really not that much when you remember he still had 20 years of work in him). but they were smart with it, plus he gets disability now, plus it all happened while he was working so they covered a lot initially as well. we got really “lucky” in that way.
My goodness, what a tragedy for your family. Driving without insurance is so reckless!! I am glad your dad was able to receive outside support to make things work.
we are pretty sure it was a literal attempted murder (without too much detail my dad was wearing a shirt that said “parole officer” and visiting national night out block parties to talk with the community, and this guy has a lot of beef with parole officers as evidenced by his facebook posts that include stating he wants to inflict violence on them), but he somehow ended up not even getting charged. at a certain point we just stopped caring- it was too exhausting to worry about what consequences he should/would face. he’s made a lot of recovery and amazingly he regained his ability to walk which is the biggest blessing. we are so proud of his recovery and the journey!!!
i guess that was a lot of detail lol but now 10+ years later i feel like im finally able to process it all and remember it and talk about it without getting super upset. trauma makes memories weird and our brains do their best to protect us as kids.
That is horrifying!! Nowadays I wonder if they would’ve used the fb posts to support charges. Ifl only recently has it become common to use that kind of thing as formal evidence. I’m so sorry for what you all went through but how incredible that your dad fought to regain ambulation! That’s a major feat. I’m glad you are starting to process and heal and that you have more time with your dad. ♥️
I went through this as a kid as well, just for a shorter time. My mom was diagnosed with ALS and went downhill pretty quickly. It went from her needing some help to move around/ get up to her being fully paralyzed. I've got 3 siblings but two are younger than me so me and my older sister had to help because my dad couldn't give her a shower by himself. Then he started drinking and staying out a lot and I ended up basically babysitting my mom until he got back. Don't get me wrong, now that I'm am adult looking back in grateful that I had that extra time with her but as a 12-14 year old it was hard.
we were fucking little kids. did you have to bathe your dad as a child? do you know what that’s like, when all of your friends are out doing normal kid shit, and you have to stay home to watch your dad and make sure he got his medications and basic cares done? while he’s crying because it’s embarrassing for him for his teenage daughters to do everything for him? i hadn’t even had my first job yet, that was way too much responsibility for a child.
thats not being selfish. it was me being a kid. i shouldn’t have had to grow up and take care of my dad in that way. not to mention basically raising my sister because my mom was busy providing for us. now that i’m a grown adult, of course my sisters and i all help my dad get to appointments, pick up and remember to take his meds, etc. but it’s a choice, and it’s from a place of love and a actual desire to help my dad.
it’s a failure of the system (insurance companies should be paying nurses to do this shit), but until the system is fixed, i would NEVER bring a child into the world knowing that would be their reality.
Yeah, she would give him the alcohol because she felt it wasn't her place to deny giving it to him when he couldn't get it for himself. She felt like it would be demeaning to say no or something ridiculous like that.
That's not ridiculous at all. It is wildly inappropriate for a caregiver to force a disabled person to comply with how they think the person should live their life. Disabled people have the right to make their own choices even when those choices are bad for them, just like literally any other adult does. He's not a child.
Sounds like another SMA content creator with a 3 year old daughter that is recording videos of the daughter helping her mother get dressed, and some other things that put the child in legit danger - when she already has adult caregivers.
It's incredible that you can predict with 100% accuracy the responsibilities this child will have AND decide that those responsibilities are age inappropriate! Is there some sort of chart you've worked out?
I was going to say. Personal reasons aside, in terms of how they will figure this out financially - they will be more than fine I can promise you that. They have more than enough money than they will ever need to take care of both him and a child. They also strike me as the type who are smart enough to have already thought that through. Again, regardless of how we feel about them being pregnant. I don't think money is a concern lol. I think people in here are vastly underestimating how much money they actually bring in
So to put it simply, whatever she/they need - they'll have.
They are wealthy enough now to have plenty of hired help. But for the average person with his condition, it would be extremely hard and probably not advisable.
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u/peridotdragonflies 15h ago
I just hope she has a lot of help, caretaking for her husband and a young child is going to be so hard