Blind and Visually Impaired Community
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75 year old father has lost his sight during the past year and I (35) daughter would like to help. (self.Blind)
submitted by snubnosedmotorboat
This is a long one so thank you for those that stick with it.
My dad has some kind of eye disease - I’m still trying to get clear answers from my family on what the exact diagnosis is- that has left him blind except for being able to establish light from dark.
He’s had treated glaucoma for decades, but also experienced detached retinas in both eyes. I know for a while he was getting monthly eye injections with a cancer drug used off-label to help slow the process.
He’s also had some heart issues and for the past year his medication has led to what we thought was dementia. After changing medication, he’s slowly regaining he’s cognitive abilities.
I can’t imagine what it would be like to lose your vision and cognition at the same time. I wanted to help, but because of Covid- and issues described below- I have been unable to do much except try to provide support to my mother taking care of him, while she is at the breaking point herself.
I have massive guilt because I’ve been battling depression, anxiety, and PTSD from childhood abuse. I’m getting great help- but completely unable to stay long in the household with the people who continue to cause issues if I’m not very, very careful myself.
We are all now fully vaccinated and my treatment team and I feel spending up to a day with them is safe for me as long as I have a way home.
My dad was a Psychology professor and an avid reader, news watcher, and loved the movies. Even though he’s on the way to getting his full intelligence back- he has always been awful with technology.
I know of a lot of thing such as speech to text and audio enhanced media he could use, but he’s unable to even make phone calls on his own despite coming back to one of the smartest people I know.
I would love to hook him up with some sort of therapy, support group, or volunteer service so he just has someone to talk to who understands. He won’t seek out regular therapy because as a “psychological professional” he won’t even give it a try.
Is there any advice for what I can do to help for either him and/or my mom? Anything I could do to make the most of the limited time I can spend with them? Any other advice?
Thank you so much.
My dad has some kind of eye disease - I’m still trying to get clear answers from my family on what the exact diagnosis is- that has left him blind except for being able to establish light from dark.
He’s had treated glaucoma for decades, but also experienced detached retinas in both eyes. I know for a while he was getting monthly eye injections with a cancer drug used off-label to help slow the process.
He’s also had some heart issues and for the past year his medication has led to what we thought was dementia. After changing medication, he’s slowly regaining he’s cognitive abilities.
I can’t imagine what it would be like to lose your vision and cognition at the same time. I wanted to help, but because of Covid- and issues described below- I have been unable to do much except try to provide support to my mother taking care of him, while she is at the breaking point herself.
I have massive guilt because I’ve been battling depression, anxiety, and PTSD from childhood abuse. I’m getting great help- but completely unable to stay long in the household with the people who continue to cause issues if I’m not very, very careful myself.
We are all now fully vaccinated and my treatment team and I feel spending up to a day with them is safe for me as long as I have a way home.
My dad was a Psychology professor and an avid reader, news watcher, and loved the movies. Even though he’s on the way to getting his full intelligence back- he has always been awful with technology.
I know of a lot of thing such as speech to text and audio enhanced media he could use, but he’s unable to even make phone calls on his own despite coming back to one of the smartest people I know.
I would love to hook him up with some sort of therapy, support group, or volunteer service so he just has someone to talk to who understands. He won’t seek out regular therapy because as a “psychological professional” he won’t even give it a try.
Is there any advice for what I can do to help for either him and/or my mom? Anything I could do to make the most of the limited time I can spend with them? Any other advice?
Thank you so much.
TheBlindCreative 3 points 2y ago
Hi. He might like an Alexa for playing music, podcasts, and Audible audio books. You could help him get registered with the NLS, which provides free audio books to the blind in the U.S.
Defenestrar1 2 points 2y ago
I agree with both, especially the NLS. The National Library Service offers the $1 (BARD for short). Their independent players are very easy to operate without having to learn computer or smartphone operation.
Also look up social services in your father's state (and possibly county). There is help available and your family is not alone. Both state and volunteer supported resources were invaluable for our family when my father was acutely blinded.
Also look up social services in your father's state (and possibly county). There is help available and your family is not alone. Both state and volunteer supported resources were invaluable for our family when my father was acutely blinded.
etalasi 3 points 2y ago
Is there a physical radio device with buttons or dials lying around the house that your father has experience with? Even if the radio would only be set to one constant station, he might still be able to press a button to turn the radio on and off.
snubnosedmotorboat [OP] 1 points 2y ago
My sincerest apologies for the delay- things got bumpy.
Thank you so much for your reply.
He has a lot of technology around- but I think you truly got to the core of the issue. Something he could do on his own without assistance would mean a lot to him.
I will pass this on and once we all are vaccinated, I will do my best to set up a simple system that he can do on his own.
Thank you again! I didn’t think of the process of autonomy. It was just about the end goal- but of course that is not the same.
Thank you with much gratitude
SNMB
Thank you so much for your reply.
He has a lot of technology around- but I think you truly got to the core of the issue. Something he could do on his own without assistance would mean a lot to him.
I will pass this on and once we all are vaccinated, I will do my best to set up a simple system that he can do on his own.
Thank you again! I didn’t think of the process of autonomy. It was just about the end goal- but of course that is not the same.
Thank you with much gratitude
SNMB
vip-sizzles 1 points 2y ago
It's probably best to give him some time to adapt & keep encouraging him he still can be independent. Let him know accessibility options are available & & you're willing to help him learn when he's ready.
snubnosedmotorboat [OP] 2 points 2y ago
My apologies for the late reply, thank you very much for your response.
I’m going slow and mostly just talking with him. I used to call once every other week- but realizing that his world is less visual and more auditory, I talk with him for at least just a bit every few days. Things are what they are but he likes to talk with me and so I will talk.
Thank you again for your help
I’m going slow and mostly just talking with him. I used to call once every other week- but realizing that his world is less visual and more auditory, I talk with him for at least just a bit every few days. Things are what they are but he likes to talk with me and so I will talk.
Thank you again for your help
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