What’s like having a caregiver?

[ehinOWHEN]

Hey everyone,

I hope you’re all doing well. I’m reaching out because I’m considering the possibility of hiring a caregiver, but I’ve never had one before, so I don’t really know what it’s like or how it works.
If my crowdfunding campaign is successful, I’d love to be able to have someone around who could help me manage day-to-day life, especially during and after my seizures. Right now, I’m living alone, which can be a bit overwhelming, as I’m sure many of you might understand.

For those of you who have experience with caregivers, could you share what it’s like? How does it typically work in terms of their responsibilities and the support they provide? Also, does it cost much to hire someone? Any insights or advice would be really helpful.

Thank you all so much in advance for any help or personal experiences you can share. It means a lot to me.

 

[gina19]

When I tell someone I have one, there first thought is usually something like, but isn't she under your feet all the time?. Do you get time to yourself?

Well, the answer to that is, I get a lot of time to myself. Despite the fact she lives with me, she only helps me when I require her too. This could involve help after a seizure, it could involve driving me somewhere, it could involve doing my meals, it could involve making sure that I am no where near something that's going to trigger said seizure, it could be making sure I have money for what I need, etc.

As for responsibilities, well, honestly that depends on the individual and what you need.

A carer is someone who basically does the things that you can't or you struggle to manage. When you hire a carer, it will be down to you to say I can do this this and this, but may need a little help with this.

Like: I can eat myself, but I can't prepare meals. something like that

As for cost, that honestly depends how much care you have. Do you have her in a few times a day?. a week?. does she live with you?. All those factors to consider

Them there's the case of are you going to get it in the first place. Do you need it

They will go over your needs/ condition with you, and make a decision after that based on.. well, to be honest, usually level of skill and who they have to be alocated to you.

Example, say if you were an old person who struggled to get up and down the stairs, get out of bed, get themselves washed and dressed etc, then they would give you someone

If you were younger and say, struggled to cook, they would assess your cooking and see if you actually needed help with it or if you could manage.

All I have said is how they do it in england. I don't know how they do it where you are, I hope it helps though

Here to offer more experience anytime

Gina

 

[ehinOWHEN]

When I tell someone I have one, there first thought is usually something like, but isn't she under your feet all the time?. Do you get time to yourself?

Well, the answer to that is, I get a lot of time to myself. Despite the fact she lives with me, she only helps me when I require her too. This could involve help after a seizure, it could involve driving me somewhere, it could involve doing my meals, it could involve making sure that I am no where near something that's going to trigger said seizure, it could be making sure I have money for what I need, etc.

As for responsibilities, well, honestly that depends on the individual and what you need.

A carer is someone who basically does the things that you can't or you struggle to manage. When you hire a carer, it will be down to you to say I can do this this and this, but may need a little help with this.

Like: I can eat myself, but I can't prepare meals. something like that

As for cost, that honestly depends how much care you have. Do you have her in a few times a day?. a week?. does she live with you?. All those factors to consider

Them there's the case of are you going to get it in the first place. Do you need it

They will go over your needs/ condition with you, and make a decision after that based on.. well, to be honest, usually level of skill and who they have to be alocated to you.

Example, say if you were an old person who struggled to get up and down the stairs, get out of bed, get themselves washed and dressed etc, then they would give you someone

If you were younger and say, struggled to cook, they would assess your cooking and see if you actually needed help with it or if you could manage.

All I have said is how they do it in england. I don't know how they do it where you are, I hope it helps though

Here to offer more experience anytime

Gina

Hi Gina,

Thank you so much for your thoughtful and detailed response. I really appreciate you taking the time to share your insights and experiences with me. Your explanation has given me a clearer picture of how caregiving works, especially the flexibility around responsibilities and the role of assessing individual needs.

It does seem like having a roommate might be a more practical solution for my situation, especially since I can handle most of my basic needs as long as I have some stability. Like you mentioned, their main role would likely just be to support me during and after a seizure if I’m unconscious for an extended period.

I also really value your point about how society perceives epilepsy. In Nigeria, there’s such a huge stigma, which can make finding someone understanding and trustworthy a real challenge. That’s something I’ll definitely need to navigate carefully.
I’ll take your advice and carefully consider whether I truly need a caregiver or if a roommate arrangement might be better suited to my current situation.

How’re you doing today by the way? Hopefully you are doing okay. I woke up from sleep not long ago. Best sleep I’ve had in some time.

Warm regards,
Owhen

 

[gina19]

Hi Gina,

Thank you so much for your thoughtful and detailed response. I really appreciate you taking the time to share your insights and experiences with me. Your explanation has given me a clearer picture of how caregiving works, especially the flexibility around responsibilities and the role of assessing individual needs.

It does seem like having a roommate might be a more practical solution for my situation, especially since I can handle most of my basic needs as long as I have some stability. Like you mentioned, their main role would likely just be to support me during and after a seizure if I’m unconscious for an extended period.

I also really value your point about how society perceives epilepsy. In Nigeria, there’s such a huge stigma, which can make finding someone understanding and trustworthy a real challenge. That’s something I’ll definitely need to navigate carefully.
I’ll take your advice and carefully consider whether I truly need a caregiver or if a roommate arrangement might be better suited to my current situation.

How’re you doing today by the way? Hopefully you are doing okay. I woke up from sleep not long ago. Best sleep I’ve had in some time.

Warm regards,
Owhen

Let me know what you decide, I am sure what ever you choose will be right for you and your situation and I look forward to hearing about it (I always look forward to hearing from you!)

My throat is a little sore today and I've been drinking lots of juice to try and stay hydrated. Since I got up, I must have drank like five cups all ready

Aside from that, there is not much going on at this end apart from the fact my groceries came this morning. I was just in that other place (the one I told you about in PM), for a little while. Something to do I guess.

 

[ehinOWHEN]

Hi Gina,
I just sent you a DM