How do you cope with a diagnosis of Geographic Atrophy (aka blindness)?

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MattyWelch Asked August 2023

How do you cope with a diagnosis of Geographic Atrophy (aka blindness)?

My 99-year-old mother has just been diagnosed with a recurrence of macular degeneration. Her symptoms are pointing to Geographic Atrophy and ultimate blindness. Needless to say she didn’t take it well, and is basically in denial. She still lives completely alone. My 60-year-old brother is her “caretaker”, but frankly just does as she tells him. He wouldn’t think of planning ahead for this in any way. That’s my rant coming out. Anyway, what have others done to prepare for an elderly person about to lose their sight?

Living Independently Vision Loss

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score 0 · Answer 1

I am with MsLavender. She can be taught how to live with it and should do it now. I knew a woman who was given too much oxygen at birth. Yes she was born blind but it never stopped her. She went to college. Married and had children. Ran a Daycare. DHs Uncle gets shots for MG. Would they not help Mom?

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My Mom lost her sight. She moved in with me many years ago. Check with her state about training for the blind. My Mom was able to go on a bus free from our house to a local training facility. They taught her ways to cook, how to walk with a cane, how to use appliances, etc while being blind.

I wound up buying lots of Velcro dots and putting them on her CD player controls, the TV remote, and on the Microwave. She was able to feel the dots to control the items. They taught her how to do this at the school.

The state assigned her a Caseworker. The Caseworker was able to sign her up for The National Library for the Blind and she received digital books in the mail along with a digital book reader for free.

We lived in a few different states while this was all going on. Each state provided some type of support for the blind. (Not financial or money to her, as she was not on Medicaid - but services - like talking clocks, a talking scale, a very large cooking timer, etc.)

I had to do most things for her, but the school's training provided her with some independence which made her happy. My Mom could never live alone due to her extreme low vision and other medical problems. She eventually had strokes, etc and wound up bed bound. But, that was unrelated to her vision problems. She is gone now, but I still use her talking alarm clock everyday.

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Being 99, she’s not going to learn anything new. She was never one to learn new things, never take classes, never ask anyone else for advice on how to do something. I think it scares her to show people that she doesn’t know everything. At this point I’m just hoping she can accept meals on wheels and/or other in-home help. She’s never owned a microwave, and she’s not going to learn how to use one now, although that would’ve been helpful. I live several states away, and she doesn’t even like to talk to me on the phone because I want to fix things rather than just listen to her litany of complaints. She doesn’t want to be “talked at” by an audiobook, she doesn’t have Internet, so she can’t listen to things like podcasts. She has no friends, Only a rather elderly handyman that helps her with a few things, but certainly can’t drop everything to be there when she rings, even though she starting to expect that of him. My brother has had to get out of work several times for her so-called emergencies that turned out to be nothing. I think we’re just going to have to wait it out, she’ll never listen to me about putting dots on things or planning for the future of less independent living.

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score 1 · Answer 3

Well obviously she can no longer live alone and unless you or your brother are willing to take her in, you will need to start looking into the appropriate facility for her to be placed in.
Wishing you well in finding the right facility for her.

And I'm guessing that her eye sight is already pretty poor, so she will gradually adjust as she loses more and more of her sight.

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How do you cope with a diagnosis of Geographic Atrophy (aka blindness)?

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