Blind and Visually Impaired Community
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Mom has RP and wants to hide it from the world (self.Blind)
submitted by swissy23
My mom found out she has RP around 2004 and her eyesight has been slowly declining ever since. She functions well at home but going out we can tell that she struggles more and more everyday. My mom has been very self conscious of this and has always tried to make it unnoticeable. Like if we are walking outside she will hold my hand but if see someone we know she immediately let's go. Me and my siblings have left for college and moved out and so she is becoming more and more isolated. She only goes out to see friends when one of us is home and can walk in the house with her. I know if she told her friends they would accept her and even help her get seated and chat. I have brought up the idea of her being more honest but she refuses to talk about it. Any advice or similar experiences would be appropriated.
Sommiel 16 points 4y ago
She is isolating and it's depression.
You need to find your closest blind education center. There will be several things that she needs to learn there. Places like the Braille Institute. Many towns have smaller places connected to Departments of Rehabilitation.
When I started to lose my vision, for the first year and a half as it gradually progressed... I was suicidal. I had a bottle of oxy waiting for the day that I could not read a book any more. That was the day I was going to do it.
I went to a blindness support place and my perception totally changed.
I learned braille, how to use the technology, I can get around with a cane and I have a full time job. I can even joke about it now. I learned life skills and put the combination of that together to volunteer to teach a safe and healthy cooking class. I can navigate anywhere on the bus, use a smart phone for orienteering. It took a while, but I met some of the trainers that were profoundly blind and they were inspirational to me.
I asked one of my trainers about getting a cane when I started walking into posts. I was afraid that it would make me a target, like a perpetual victim. He told me, "my cane is a weapon." I swallowed the weirdness and learned to use it.
I am older and it was a huge adjustment for me to make. But my kids are grown and there is no one around to help out much. I have to survive. Everyone goes on and on about my being so brave, but to hell with that. I do what I have to do.
There are a LOT of older people losing their vision now, mostly to diabetic retinopathy. This isolation thing is very common among them, I met some of them in the weekly group they had at the center where we discussed what we were going through.
She can't discuss it with her kids and I get that. You don't want your kids to see you as weak or a burden. It's a pride thing and nothing you do or say is going to change that.
What you have to do is close to an intervention. You take her to the center and you help her get the help and you don't take no for an answer.
You need to find your closest blind education center. There will be several things that she needs to learn there. Places like the Braille Institute. Many towns have smaller places connected to Departments of Rehabilitation.
When I started to lose my vision, for the first year and a half as it gradually progressed... I was suicidal. I had a bottle of oxy waiting for the day that I could not read a book any more. That was the day I was going to do it.
I went to a blindness support place and my perception totally changed.
I learned braille, how to use the technology, I can get around with a cane and I have a full time job. I can even joke about it now. I learned life skills and put the combination of that together to volunteer to teach a safe and healthy cooking class. I can navigate anywhere on the bus, use a smart phone for orienteering. It took a while, but I met some of the trainers that were profoundly blind and they were inspirational to me.
I asked one of my trainers about getting a cane when I started walking into posts. I was afraid that it would make me a target, like a perpetual victim. He told me, "my cane is a weapon." I swallowed the weirdness and learned to use it.
I am older and it was a huge adjustment for me to make. But my kids are grown and there is no one around to help out much. I have to survive. Everyone goes on and on about my being so brave, but to hell with that. I do what I have to do.
There are a LOT of older people losing their vision now, mostly to diabetic retinopathy. This isolation thing is very common among them, I met some of them in the weekly group they had at the center where we discussed what we were going through.
She can't discuss it with her kids and I get that. You don't want your kids to see you as weak or a burden. It's a pride thing and nothing you do or say is going to change that.
What you have to do is close to an intervention. You take her to the center and you help her get the help and you don't take no for an answer.
blind_devotion08 6 points 4y ago
I would like to add that seeing a therapist/councilor is something I highly recommend.
I was diagnosed with RP when I was 11, and didn't get help with the mental/emotional aspect of it until I was well into my twenties. Don't get me wrong, learning life skills and adjusting to a functional and happy life without eyesight is a great plan, but the teachers there are more likely to be equipped to help deal with the practical side, not the emotional side. I know there's a stigma against therapy in general, but if your mother had lost a limb after an accident or become unable to walk after a major surgery, a lot of doctors would recommend therapy to help with the adjusting process. I'm of the opinion that losing your sight is no different, and even just a few visits can be a big help.
It's clear your mom thinks her disability is something to be ashamed of, and I can't stress enough how much therapy has helped me accept the differences my sight makes in my life and help give me the courage to say that having a disability isn't anything to be ashamed of.
u/Sommiel already touched on how your mom probably doesn't want to seem lesser or be a burden, but if you go with the idea of a sort of "intervention", I sincerely hope mental health is part of any plan your mom makes to help improve her situation.
Best wishes, and good luck, OP
I was diagnosed with RP when I was 11, and didn't get help with the mental/emotional aspect of it until I was well into my twenties. Don't get me wrong, learning life skills and adjusting to a functional and happy life without eyesight is a great plan, but the teachers there are more likely to be equipped to help deal with the practical side, not the emotional side. I know there's a stigma against therapy in general, but if your mother had lost a limb after an accident or become unable to walk after a major surgery, a lot of doctors would recommend therapy to help with the adjusting process. I'm of the opinion that losing your sight is no different, and even just a few visits can be a big help.
It's clear your mom thinks her disability is something to be ashamed of, and I can't stress enough how much therapy has helped me accept the differences my sight makes in my life and help give me the courage to say that having a disability isn't anything to be ashamed of.
u/Sommiel already touched on how your mom probably doesn't want to seem lesser or be a burden, but if you go with the idea of a sort of "intervention", I sincerely hope mental health is part of any plan your mom makes to help improve her situation.
Best wishes, and good luck, OP
MasterSpectacleMaker 6 points 4y ago
I’m sorry to hear your mother is struggling coming to terms with her conditions. Sight loss is a huge deal to the vast majority of people and some people take many years to accept they need help.
A good start would perhaps to find a local support group, or an online support group so she can speak to people in her situation.
As much as friends and family try and help, and are sympathetic, unless you have sight loss you will never be able to give first-hand advice. Sometimes this is the only advice people in such a difficult situation will listen to. They need another person’s personal experiences to understand how to cope with their situation and how to get through the difficult times.
I hope your mother is able to get through this difficult period and learn how to live a great life with sight loss.
A good start would perhaps to find a local support group, or an online support group so she can speak to people in her situation.
As much as friends and family try and help, and are sympathetic, unless you have sight loss you will never be able to give first-hand advice. Sometimes this is the only advice people in such a difficult situation will listen to. They need another person’s personal experiences to understand how to cope with their situation and how to get through the difficult times.
I hope your mother is able to get through this difficult period and learn how to live a great life with sight loss.
swissy23 [OP] 1 points 4y ago
She once went to a clinical trial and met others with RP and actually had a great time. She didn't have to hide it be self conscious of her blindness so i think this is a great idea. In your experience, are the support groups usually run by the state of just informal get togethers?
MasterSpectacleMaker 1 points 4y ago
I’m based in the UK and most groups are usually run by charities or volunteers.
I hope you find somewhere!
I hope you find somewhere!
Myntrith 5 points 4y ago
My mom was the same way, and it frustrated me to no end. Everyone knew she had RP. That wasn't the issue. She still felt self-conscious, though. She didn't want to eat in front of people in case she made a mess. She didn't want to be a bother to others. I kept wanting to get her out of the house. Or at least invite her friends over for dinner or something. I never found a good solution, but I can relate.
swissy23 [OP] 1 points 4y ago
I'm sorry that you had a similar experience. It's really hard seeing someone you love go through that but also seeing themselves hold themselves back.
matt_may 2 points 4y ago
The five stages of grief - she's stuck in denial. I was there for a while. I eventually got O&M (cane training). It took me years to use the cane at work. Now I won't leave the house without it and my life is easier. It's worth getting over but hard. Good luck.
swissy23 [OP] 1 points 4y ago
Thank you! I think my mom would benefit greatly from a cane since even in our own house she is constantly running into things. We all run around picking up stuff in front of her to make sure she doesn't trip.
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