I'm totally blind, with some mental health issues, and I have a care provider who assists me with visual tasks such as detailed cleaning, filling out paperwork, and taking me places such as the grocery store and appointments. She's a blessing to me! We get along really well, and it helps that we have lived together for 12 years!

would be good if sign language was available on duolingo

I recently went on Family Leave to be my mom’s full time carer while she recovers from a dislocated shoulder. She’s 87 normally uses a roller walker and is legally blind from macula degeneration. She’s also an insulin dependent type 2 diabetic. I’ve been getting very little help from my siblings, my sister works nights and has a 5 1/2 year old daughter, whom I also take care of at night. I very quickly got burnt out. Mom decided that we needed to call an agency to get me some relief. So starting next week, mom will have a carer come in for three hours 2 times a week to be with mom so I can have a break and so I can run errands, do the grocery shopping and have a little me time. My sister comes for couple hours on Saturdays but that is her only day she has really to be with her daughter since she has to sleep & my niece is in school all day. My son comes over on his day off, but he usually doesn’t come until late afternoon/ early evening, which doesn’t help me much since it’s the time I’m usually fixing dinner. It’s hard being a family member’s caregiver. Ironically, I work full time at a hospital, as a nursing assistant (on leave right now). My brother doesn’t understand why we need a carer to come, since 1) I live with mom anyway & 2) I do this work for a living. But when I’m at work, I’m not alone in caring for patients, I work with a great team of nurses & aides and we have regularly scheduled breaks. With mom, it’s 24 hours 7 days a week and will be for the next several weeks. Thanks for letting me vent

Jessica is honestly so polished and refined but so down to earth and earnest at the same time. I’m both intimidated and want to be her friend 😂

i know this stream happened almost 2 years ago, but i'm just now watching it for the first time and i would really love some "friendship is first and money is uncomfortable" merch

This isn't related to carer talk but I was wondering, Jessica, have you ever or would you ever do a TEDx talk?

That’s really helpful what she said about when to get a carer. Thank you so much Jessica and Clara! Care in England is so much better than the US. We don’t have programs to that extent here and usually family members end up caring for ppl. Serious disabilities can get a nurse, but it is very difficult and usually very costly. And because of the lack of understanding and progressive thoughts around physical and mental illnesses/disabilities, there aren’t a lot of respectful, kind people. It’s very scary to think I can’t take care of myself and also have to fight for care, just to even get a diagnosis. I have fibromyalgia, a hip dysplasia issue, OCD, anxiety, depression and PTSD and lasting effects from past injuries that have permanently damaged my back, hips, and neck, and because I look physically able, people don’t understand that there is really something wrong; and that I want to be able to take care of myself but it can cause me to faint or become nauseated due to constant dizziness and issues with blood flow and pain. It is hard for me to walk some days. Thank you for spreading awareness to illnesses that are not as easily seen but are incredibly difficult to deal with.

I know this video is three years old but I just watched it and I want to say thank you for making it. As a person with a disability I needed to see this, and specifically the part where you talked about when is it time to have a carer person in your life. I had thought I had need of that, but clearing after hearing your explanation and looking around me and trying to do it all and failing miserably and getting nothing much of anything done, the time is now, was yesterday. Thank you for helping me to see that clearly. Happy to be a new subscriber and supporter, and very happiest and joyful wishes for your precious new little one and growing family. 🌈💖

I'm pretty sure that in America if I had a job of any sort (even part time) they'd just take away my assistance/stipend to pay a carer. The UK is so much more advanced than the US.

In the US we say "caregiver" and I think it might be because it's really awkward to say "carer" in an American accent particularly if you're from the deep south

I would love love love to see a collaboration between yourself and Molly Burke

I just started working as a carer after being a chef for years, and I love it!

Not really related, but while I was watching this my partner looked over from the couch and said "Are you looking at the Pillars of Creation nebula in outer space?" (he could not see my screen clearly) and I thought it was hilarious that he mistook you two lovely redheaded ladies for a cool space phenomenon!

I could listen to three more hours of this, I can't believe I've been here for an hour, it feels like 10 minutes, I love the dialogue between you two

As someone who has never really had contact with a disabled person, this was so fascinating to me! I hope you do more of these :) You've inspired me to start learning American sign language.

from the perspective of being the carer, i help take care of my niece. she has dravet syndrome and needs help with basically everything. if she asks for a drink or food or needs me for the bathroom or anything, i don't feel like a 'thank you' or 'please' is necessary. if she could do it herself, she would. people in my family who don't understand her condition or true disability, think her mother, my mom, and myself baby her and that couldn't be further from the truth.

Oh! The pills!!!!! My son just told me that I need to hover over him until he takes his pills. I cannot trust when he says, "yeah, I took my meds." And yet, he does not want to be hovered over. :)

I strongly believed Clara was Spanish and I was right, I'm from Spain too and I just want to thank you both for your intention to help people and answer questions.

I could listen to you two for hours and hours, so interesting and entertaining :)

I feel like "Rainbow is the *only* colour" should be on a Pride t-shirt. Some merch, perhaps?

I find the please/thank you balance tricky to with my PA. I always say thank you for everything you've done today as they leave to cover everything!

Not sure if you managed to save the live comments for yourselves but if not, these are a couple I had (and some more I thought of since): Does it ever happen that there are some things a carer doesn’t want to do? How do those things then get attended to, specifically if/when you are alone? (I know that’s not really the case for you now, but has it ever been an issue and/or how would you handle that?) And have you ever gotten overwhelmed with having a carer around? Whether you need alone time or it’s too much noise or not enough privacy or for any other reason? At what point do you know when someone just isn’t a good fit vs. personality differences or other... What’s reasonable to expect? Interpersonal stuff is a big energy drain for me, which sometimes almost seems to cancel out the help the person is providing. What are some criteria you used in your carer search/interviews? We have similar health issues so I’m curious what things might be crucial or important to consider. What qualities are key in a carer in general, in your experience? Do you recommend having more than one carer if possible? That way you always have a potential back-up if one isn’t available when you need it? Since your needs change over time, how does that affect your funding? And will you do one of these again? I’m currently looking into accessing funding to hire carers (complicated by the fact that you can seemingly only get home care here if you need help bathing and dressing- nevermind the fact you might not be able to feed yourself or maintain your living space or run errands. 🙄 You’re starving to death but you’re washed and dressed doing it so it’s fine!). This whole discussion is so, so helpful to me and one I’ve never really seen happen, especially for young people. I’ve found you answering other people’s questions to be really useful too, because sometimes you just don’t think to ask! Thank you so much for doing this!! Edit: I see now that the chat was saved. Apologies in advance for the repeat questions.

I wasn't able to watch this live, but it looked like a lot of fun! Please do more!

It’s very much the same here in the USA. I’ve had carers through agencies, many have not worked out well. I now go through an agency where I hire the caregiver and the agency pays her. We are friends also.

I wish people were the way you talk about "please" and "thank you" in the US. It seems that people expect it no matter what here. You're seen as "ungrateful" if you don't say it as a matter of course. It's like people don't think you're appreciative if you aren't constantly reinforcing it. There seem to be a lot more people in the US like that one bad person you tried as your carer that just berated you when you couldn't move, although not quite THAT severe always in the same direct way. That's another difference between the UK and US systems for this. A caregiver cannot take a client anywhere other than to the doctor unless they aren't "on the clock". I am so jealous that you don't have to choose in the UK between "having a life while living" and "existence at all". I would move to the UK in a heartbeat if I could get a VISA and could somehow get the money to survive the 5 year waiting period to apply for citizenship.

This is excellent as Jessica you are so very articulate and pragmatic in how you describe your experiences, thank you.

I only recently found your channel Jessica. Your videos are amazing and so informative.

I didn't get to catch this live but I'm so happy to catch it now

I don't have any contact to a disabled person at the moment and when I happen to meet one at a party I wouldn't ask such private questions but I love to be able to have glimpse of your reality/daily life here through KZfaq.

I noticed that this video isn't closed captioned. Would there be a way for you to allow the community to add captions? I would be willing to try my hand at it.

Layered like an onion, tough like a melon. That HAS to be a t-shirt

I know I'm not following instructions, but I don't know how to use twitter... so I think you should collab with Simon and martina. They are eat your kimchi, and martina has a connective tissue disorder. They're in Japan, so that may cause issues, but I think the positivity you both have about your illnesses is awesome

Constant "please" and "thank you"'s uses energy that can alternatively be conserved and used to take better care of yourself and your relationships.

Does Clara do any private/personal health duties or is Claudia the only one who cares for you personally? If Clara does, then Clara how did you get past the possible uncomfortable feeling of taking care of your friends personal health? I have a male BFF/Carer and I still have troubles asking for help in the shower, so if there are any tips on how to get over that uncomfortable feeling I would greatly appreciate them. Thank-you and have a very lovely day!!!

Just a suggestion because you mentioned it, Claudia Boleyn is an amazing British KZfaqr who discusses her mental health problems, you would be great doing a video together! Lots of love

The Aspie World is an amazing British KZfaqr who talks about autism in general and his personal experience as well. Very insightful channel and cool guy.

Please collab with Dan Howell or Dodie to talk about mental health!

Can someone please create timestamps for the questions/topics?

i go on vacation for a week and come back to several videos, so exciting

i just stumbled upon your channel somehow.. you are awesome!! i have a physical disability and relate to you and your support worker a lot

I was watching this at school and my welding teacher came up behind me and I paused it and he very disappointedly said, "Oh it's a video? They're not talking to you?" God no I wish but also my camera is better than that hahaha

I agree that the constant please and thank yous are annoying. It makes me feel like I am not the boss.

I think (as a care provider) - I also find it really awkward when people apologise for asking me to do something (aside was embarrassment which is a whole other chat). I hope it's not because i have made them think anything is an inconvenience.. I've been on the flip side too (a lot) and have definately got the impression that I'm being irritating. now I realise that maybe they just slammed their fingers in a drawer or something was that was totally unrelated to me but I happened to pick up on. that's terrible English but I hope it's an understandable torrent of thought!

Watching the both of You, the words 'smart kindness' came into my mind.

Just caught up on this and found it really interesting. The mental health collaboration would really interest me.

Definitely collab with Molly burke!!!!!!

yes mri's are useful . they just found lesions on my brain which may be contributing to my balance, dizzyness, fainting spells and migraines. still doing more tests but that was a big discovery. they are from an early childhood injury

Half way thru and I need that 'layered like an onion, tough like a melon' shirt so badly. Looking at all the comments on the chat many people are asking about learning sign language; my answer to y'all is to go to your local Deaf club/society or community college as they should have courses. I am studying to be an interpreter through the Deaf Society NSW.

Just wanted to say I really enjoy your videos on disability topics. I pay in the minor divisions for this with very bad vision, some fatigue and an unforgettable tenancy to break bones. I love you humour in approaching these things and relate to your school experiences a bit but I always had my problems do was labeled as that blind girl (even though I can see a bit). I even recommended you to a friend with chronic illness and she already knows and loves you too. Anyway this topic of carers is interesting as my mum has recently changed from multiple carers to an arrangement similar to yous. I also has another friend who has a support worker when she goes out. If you and Clara could answer a question on how to interact with a friend's carer that would be great. I have just treated them like a friend of a friend I don't know yet but I have found the a bit reserved. Could just be those particular people though.

So sad I missed it live but yay for having it on your channel to watch later!! Edit: I have just finished watching the video. Could have watched hours and hours more of you being live! So fun! Thank you so much for answering all the questions. It seems like you and Clara are a perfect match as friends and employer/employee! So happy for you :) and I didn’t know that Jessica and Evelina were friends before Jessica and Clara - so cool! Please, make a video about mental health. I know that you Jessica does not have a mental illness (and thank goodness for that) but I feel as if your compassion and attention to detail will make it possible to talk about something you have no personal experience with. A collab sounds like a great option too! I have mental illness but I’m afraid to talk about it on my channel. I am living for your disabilities videos as I feel as if I am not alone (even though my struggles come from my mental illness and not physical). ❤️🧡💛💚💙💜

I take tramodol and gabapentin also for lupus and RA. Scary things.

I was wondering if it wasn’t too personal to ask.. who had scarier experiences with you needing help, claudie or Clara?

The worst thing I've had to deal with as a disable is when people/doctors talk like I'm not there. 👍🙉🙊🙈☕️

Hi from the Netherlands! and Cara (hope I got your name right?), when it comes to you doing sign language and wanting to do a good job at it; my grandmother always taught me that aslong as you try and keep trying, and do so from a place of care and kindness, you'll always be doing a good job in the grand scheme of things, even if and when the "tiny" thing that your actually trying doesn't really succeed until try number 1000 , as long as you try, than that's all that counts and or matters

I've worked in care. I would never lift anyone without the proper equipment, it's dangerous for both carer & client. If you need lifting you should have a hoist...

Good to know. AMERICA is wonderful but, our healthcare is crazy. This would cost us around 25,000 a year to pay someone to be in our home 40/hrs a week.

I know you could not curl your hair; but it looks really pretty!

No instagram !! Almost as bad as no Diet Coke !! Jessica should run for Mayor or Queen of Brighton. YAY

You both look so great!!

Very nice 👌 interview with a fellow disabled person who also needs help.

LMFAO trying to keep jessica awake on tramadol seems like an almost comedy-show esque event. omg. also... gabapentin withdrawals are absolutely horrific for me WITHOUT nerve pain. i thought i was going to die. absolutely terrifying

It’s just now 215pm here. You’re live stream was too early for me and I missed it! And I want to cry for missing it !

In answer to the 'can one save comments?' question - Yes - as an experiment I selected all comments from the comments window at 55:16 (end) of video and then pasted into a word document (also tried in text and pages). Word preserved icons, Text and Pages did not preserve icons. All other information appears.

nice to hear Hi Australia ! from Australia .

I would live a hair dying video!!!! yessss!!!

So I’m not sure if you can answer this question but I’m 23 and I need a lot of physical help in fact I hardly need any cognitive help except for booking appointments and making sure my prescriptions are done. I currently live with my mom but I find it really hard to meet people and make friends because every time I go out with a caregiver or anyone who I have with me people tend to automatically assume because I’m in a wheelchair and I have a caregiver that I mentally challenged as well and it makes it very difficult for me to know how to connect with people. Did you ever feel like that after you first became ill and what did you do to combat it?

The app sounds amazing!!!!

Did Jessica ever make the Tee shirts? I kinda want one...

Hi Jessica love to listen to videos I'm disabled myself just wondering where's your top from I really like it please? Xx 🌼

Clara started speaking and my mind was like 'sounds latin' haha she is spanish so...the language come from latin I know my people haha

JESSICA!!! Did you & Claudia live in the same city when you met? Did one of you move into the other's place or did y'all get a new place? How tall are you? How tall is Claudia? ❤🧡💛💚💙💜

Dave from boyinaband. For the mental health stuff

I thought it was career but I still watched it till the end :-)

I prefer the term Support Worker.

Really like you♥️♥️ all the way from Mizoram, India

Adored this. I just wish I could have made the live stream, but I am GMT -8...lol

Thank you so much for this!

don't have an instagram account but heard a perfect wedding song for evelina and clara.it's called 'forever mine by andra day.

Omg I took 2 tramadol once. I was so sick and out of it.

I'd be up for co-labing with you on MH. though I've been mostly asymptomatic for years. and, granted...my channel isn't about mental health specifically.

Please make that sign language app! :)

The confusion over the bisexual comment was funny. As a bi woman I feel that commenters pain! ❤

hello. has youtube changed how the CC work? This is the second one of your videos that I've watched today and they are usually much better.(the captions, not your videos)

ok, I feel like you should collab with Dan Howell...

As a bit of a joker I refer to my husband/carer as my slave when he does what Carers get paid for like helping me get washed and doing my hair and collecting my prescriptions.

Very interesting, but it's an HOUR LONG. That's okay but please give some time stamps per question so we don't have to sit through the whole video! I love your content but I can't concentrate this long so I skip through it and miss the best parts :(

My carer is paid for by the Canadian government.

I am happy to chat about my mental health experiences. Previously been a relative of someone who was unwell, worked on mental health wards and been a patient so I have quite a variety of experiences. Currently recieving social (help with things like maintaining my health, shopping, housework ect) and mental health care and am fairly in touch with stuff going on mental health wise in the UK including benefits, service provision and access. My channel (hammiehopeshoghugs), named after the strength they give me, is obviously about my animals at the moment. I've done conferences and talked a lot about mental health in my role as a Peer Mental Health Worker in the past so am quite used to sharing my experiences in a way that is helpful for others. And if you want to finish the video on a gay note that's fine with me cause I am gay too...love the rainbow comment!

👍

Noooo i missed it live

I missed this :(

Wish I could have caught the live stream:(

She looked like Demi lovato

Is it just me or does Clara look like Demi Lovato?

i'm having an MRI tomorrow. Dreading it. Any tips?

There is no system in America. Healthcare is privatized.

I think if she takes off her glasses the nose will pop out too

Why do you need a caregiver? You look pretty able bodied and independent