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Blind and Visually Impaired Community

Full History - 2021 - 08 - 24 - ID#pakmud
13
My mother (50) losing her vision slowly (self.Blind)
submitted by littletomato93
Hello everyone,

My mother been complaining about her eye sight, and after all the tests they found out she has macular degeneration. They said it’s not treatable and she will lose her eyesight slowly. She now has a 10% vision loss but no one knows how fast it will progress. And it’s not like her vision is blurry or anything, when she looks at something, some part is just black like it doesn’t exist, she said it’s scary.

And news devastated her. For a while she was very angry but it seems now she gotten use to it.

Unfortunately due to my work I’m living in a different country. (My older sister lives with my parents though) Even if it’s not much, I want to make her life easier. My questions are:

1. Do you have any suggestions what can I do to make her life easier? Are there any stuff that I can buy?
2. How can I support her psychologically? I suggested a therapist but she didn’t wanted that. I sometimes ask her if her vision gotten worse and she casually answers. Is it okay to talk about it, or should I just not mention it?

I’m very sorry if my questions are ignorant. I’m also flustered and don’t know what to do. Thank you in advance for your kindness.
JaymeJammer 5 points 1y ago
Hi there, that is really hard. I'm sorry your mother is facing this, but it is great that you and your sister are caring and involved.

You are right to recognize both the logistical and psychological/emotional aspects. Losing sight is a traumatic experience, but there are some community resources available, so you don't have to figure everything out by yourself the hard way.

In my part of the US there is an agency called Lighthouse for the Blind ($1) and they are amazing. There are a small number of similar agencies across the US, and I know similar support is available in other countries as well.

These are the so-called "blind schools" you might have heard about. They help people learn how to deal with the world as a person with limited or no sight. They typically have good info on their websites and they are the specialists.

Wherever you might be, I bet the folks at Lighthouse can help you find the closest similar resource for your location.

In terms of coping with the emotional side, don't push your mother, but definitely educate yourself. There is an amazing amount of perspective and understanding about disability and blindness that most people never develop until it happens to them.

Perhaps the first thing I would encourage is to not see people who are blind or visually impaired as "tragic" or objects of pity.

More so, I encourage you to find some sort of disability counselor who is trained and able to help address the different concerns. Even if your mother doesn't want to go, it is a great source of education and getting connected to resources. Have your sister go if mother wont'. Many times the social worker who is responsible for these things is called a counselor, but they are also intake specialists who help navigate the bureaucracy of services (if they are good at their jobs).

Finally, if your mother is in the US, find the contact info for her local Department of Rehabilitation ($1 ). They are focused on helping people find ways to earn a living while disabled and connecting you to other resources and support.

The offices in each region of the US are different in how they are administered, but it is not uncommon for the Department of Rehab to pay for services, assistive technology, and tuition for college or retraining in new careers. So after your mother is less shaken about her future, the Department of Rehab might be able to help her keep on going with her life. They are usually a good starting point for getting more help.

I've worked in disability services for a couple of decades, and the one common thing that I hear from people with all sorts of disabilities is that learning patience is the hardest part. Whether they are blind, in a wheelchair, deaf, or otherwise disabled, the patience which is required to deal with the word as an individual with a disability is the biggest challenge.

So kind understanding is the best thing you can provide, and just don't give up. It takes a long time to get used to losing your sight. She will likely need and appreciate you more than she can express.

My last thing to share is a blog post from someone I admire, who lost her sight from diabetes. I'm sorry in advance if it makes you cry, but it has a good ending and is worth reading: $1

I hope this helps, good luck to you and your mother!
littletomato93 [OP] 2 points 1y ago
Thank you so much for your insight. I’ve never seen so detailed and thoughtful reply in my life and I’m honestly crying right now. Unfortunately my family doesn’t live in the US and not from a country which is good at social services, but I will definitely look up government services for starters. I will also definitely educate myself, I think I’m gonna search up for online family member groups so I will understand the situation better. Again, thank you for your reply, you are a very kind person.
MoxyJen 3 points 1y ago
Hi, I'm in a similar position. If you ever want to chat about it, do message me. I'm very anxious about the future. My Mum is a bit older (73). She has every eye issue going - wet macular degeneration, recent retinal detachment in one eye that couldn't be repaired so she's blind already in that one, severe blepharitis, a nasty chalazion on the eyelid, floaters.. Charles Bonnet syndrome. That's it mainly.

It's only a matter of time till she's completely blind. They might be able to go on treating the macular issue but I think that can make it even likelier her other retina will detach as its so weak. She tries not to think about it because it makes her too fearful. When her retina detached it happened in a few seconds when she was out walking and was very traumatic. I know the next time will be worse but she will get support and will adjust to some degree. She has been glad to have counselling to deal with the grief and a buddy for support too. Maybe your Mum isn't ready for that as it's early days. It might be helpful when she's further along.

In the UK there is help available I think. So far my Mum has been given magnifying aids but we are learning there are so many products that can help with every task imaginable. Got her hooked up with Alexa in every room and Audible. Like you I don't live close enough to visit regularly but wish I did. I think she will need lots of people to visit to keep her mind alert and help keep her spirits up. Obviously depression is a big risk. My Mum had the retinal detachment just when lockdown started which did not help at all!
achillessong 2 points 1y ago
I have a parent in a similar position and keen to hear from people who have lost their sight and how they dealt with the transition , or from people who supported a parent through the sudden or slow loss of sight . What were the biggest difficulties or hurdles adapting to the loss of sight and how did you over come them ?
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