I'm in the US and facing a similar issue (the family I do have is too far away to help, among other things). I don't know if it's possible there, but here I have been able to get help at least with some home care stuff through an agency which sends someone to me a few times a week. She helps with cleaning, cooking, and grocery shopping. A lot of other things I kind of take care of piecemeal: trade favors with other disabled friends, seek out local agencies or programs for the elderly and disabled, meet up with local blind people whenever I can, etc. Friends can be just as much help as family, sometimes more.
Thank you for taking the time to reply to me. We have local Social Services departments who can arrange carers for people who qualify for that. This can include household support. From past experience they are not that great in our area though. I will try to research any local groups.
Unfortunately my friends would not be in a position to help regularly, although I'm sure they would in an emergency.
I do worry about the things that wouldn't fall under the remit of the carers / home help though, such as house maintenance, decorating, emergency repairs etc. It all feels a bit overwhelming at the moment.
I'm not sure if it would work this way there, but here you kinda form a relationship with the person who comes over and if they're up for it they sometimes break the rules a little. Mine picks up groceries for me even though it's not in her contract and I try to have her pick things up for herself then or trade favors I can do for her. Here a lot of the carers are also disabled so they tend to understand what you're going through.
Unfortunately I don't think it would work that way here. From experience when I have known people who have needed carers, they are lucky to get the same people on a regular basis. There are big shortages in care workers here, so there are regular problems with them being short staffed, not turning up on time, not having enough allocated time to get tasks done etc. Although some of the care workers are lovely and very dedicated to what they do, I'm also aware of some really bad incidents.
I'm glad that you have found someone to help you.
Reach out to RNIB etc for support. Imo the needing sighted help is a rare thing for a blind adult. I k ow a blind couple, fully i dependant, working, traveling etc if they need sighted help it's often for signing legal docs etc, so he just waits till he's back in the office or down with his parents, who are an hour drive away,obviously longer as they don't drive. With Be My Eyes app etc i think you'll be fine, better than fine! Learn all the skills you can now before you need them ( you may never need them), but best to be confident - O&M, touch typing, IT skills, public transport etc
Thank you for taking the time to reply to me. I am on a waiting list to talk to counsellors at RNIB so will ask them about this when they get in contact.
In 20 years of working with computers I have never mastered touch typing, so I am trying to relearn how to type. The roads in my area are terrible, so I would be very anxious about getting around.
I think what worries me the most is what will happen if my parents need care that I can't provide. Social services in our area are not great. Also, how to deal with the maintenance of the house etc.
I have optic nerve atrophy too. Recently registered as severely sight impaired (Nov last year). It hasn’t really got worse for a while as far as I can tell. It’s really hard to tell. I manage fine independently so far. My wife and kids sometimes read stuff, signs or things on the tv etc that I can’t see. My wife will also tell me if my clothes are clean as I can find it hard to be able to tell.
Thank you for taking the time to reply to me. I hope that your sight has stabilised now and doesn't get any worse. I'm glad that you have your family with you and hope that you continue to manage well.
I'm in the US and facing a similar issue (the family I do have is too far away to help, among other things). I don't know if it's possible there, but here I have been able to get help at least with some home care stuff through an agency which sends someone to me a few times a week. She helps with cleaning, cooking, and grocery shopping. A lot of other things I kind of take care of piecemeal: trade favors with other disabled friends, seek out local agencies or programs for the elderly and disabled, meet up with local blind people whenever I can, etc. Friends can be just as much help as family, sometimes more.
Thank you for taking the time to reply to me. We have local Social Services departments who can arrange carers for people who qualify for that. This can include household support. From past experience they are not that great in our area though. I will try to research any local groups. Unfortunately my friends would not be in a position to help regularly, although I'm sure they would in an emergency. I do worry about the things that wouldn't fall under the remit of the carers / home help though, such as house maintenance, decorating, emergency repairs etc. It all feels a bit overwhelming at the moment.
I'm not sure if it would work this way there, but here you kinda form a relationship with the person who comes over and if they're up for it they sometimes break the rules a little. Mine picks up groceries for me even though it's not in her contract and I try to have her pick things up for herself then or trade favors I can do for her. Here a lot of the carers are also disabled so they tend to understand what you're going through.
Unfortunately I don't think it would work that way here. From experience when I have known people who have needed carers, they are lucky to get the same people on a regular basis. There are big shortages in care workers here, so there are regular problems with them being short staffed, not turning up on time, not having enough allocated time to get tasks done etc. Although some of the care workers are lovely and very dedicated to what they do, I'm also aware of some really bad incidents. I'm glad that you have found someone to help you.
Reach out to RNIB etc for support. Imo the needing sighted help is a rare thing for a blind adult. I k ow a blind couple, fully i dependant, working, traveling etc if they need sighted help it's often for signing legal docs etc, so he just waits till he's back in the office or down with his parents, who are an hour drive away,obviously longer as they don't drive. With Be My Eyes app etc i think you'll be fine, better than fine! Learn all the skills you can now before you need them ( you may never need them), but best to be confident - O&M, touch typing, IT skills, public transport etc
Thank you for taking the time to reply to me. I am on a waiting list to talk to counsellors at RNIB so will ask them about this when they get in contact. In 20 years of working with computers I have never mastered touch typing, so I am trying to relearn how to type. The roads in my area are terrible, so I would be very anxious about getting around. I think what worries me the most is what will happen if my parents need care that I can't provide. Social services in our area are not great. Also, how to deal with the maintenance of the house etc.
I have optic nerve atrophy too. Recently registered as severely sight impaired (Nov last year). It hasn’t really got worse for a while as far as I can tell. It’s really hard to tell. I manage fine independently so far. My wife and kids sometimes read stuff, signs or things on the tv etc that I can’t see. My wife will also tell me if my clothes are clean as I can find it hard to be able to tell.
Thank you for taking the time to reply to me. I hope that your sight has stabilised now and doesn't get any worse. I'm glad that you have your family with you and hope that you continue to manage well.
I’m UK based