Help/resources for a person newly blind at age 91

In My Humble Opinion
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A dear friend—actually, she has been my unofficial adopted mother the last 50 years—due to something like a stroke about six weeks ago is now totally blind. I say totally—she can see a little bit of light/dark contrast at the far edge of the field of vision in one eye. I don’t have all the medical info, but the doctors have told her it’s permanent. It happened over a period of about a week.

“Mary Lou” is 91, and she is bright and beautiful and possibly the best human being I know. She’s married (widowed in 1985 and remarried about 25 years ago), and her husband is 91, too. She and her first husband (a CPA) ran a bookkeeping business, which she continued after his death. She did my taxes for 40 years, right up until last year! She’s pretty tech savvy, her husband less so, but she has brought him along. She has been the “strong one” in their marriage, and now the tables have turned. He adores her and is utterly devoted, but feels devastated and completely helpless.

She has found help in the home—a family of women who have home health training and also do some cooking and light cleaning. Right now needs help with everything from bathing to finding her way to the bathroom. She dreads being a “burden” to anyone and determinedly displays as much good cheer as she can muster most of the time. That has got to be exhausting for her, on top of everything else.

She has three grown children, and her son (my ex from the 1970s—that’s how I met her) who lives on the east coast is here for a week. He is devastated as she has always been the Rock in the family. He is taking her to the Apple store to get the best iPhone for her. She has one, but has been told she needs an upgrade. We’re hoping to find someone at the Apple store who is knowledgeable about the adaptive features. Her other son lives out west; daughter in Washington, D.C. Long stories, both.

What I’d like to find for her is some local resource(s) that can help her with adaptive things, especially in the home. Maybe some classes, or a tutor, or social worker or something to teach her skills so she will feel more capable in this New Land. Other people have trod this path, and she shouldn’t have to (and indeed can’t) reinvent the wheel. I’ve been looking for organizations online, and would like any suggestions.

But even more importantly, there’s the catastrophic loss on the emotional side. The magnitude of this is on a par with losing her first husband, which also happened very suddenly. In 1985, she was 60-ish, kids grown, and his death left her with an uninsured business and massive debt—the next few years were very rough, and she was resilient. But to cope with this enormous derailment of her life at this point in her life! I know she doesn’t want to dump on her husband, the kids, grandkids (also grown), or me, and even though we can be loving and supportive, it’s she who is in the trenches, struggling to get her bearings in ways we can’t comprehend. From my own experience, I know it helps to share with someone who has been through the kind of loss you have.

I’d be interested in any comments, life experiences, suggestions, or stuff along those lines.

I’m not “official” family–I’m usually on the sidelines, although because I’m the one in town I see more of Mary Lou than any of her children. And because I’m unofficial, Mary Lou can gossip to me about the kids in a way that she can’t with them. (That part is fun.)

With this new disaster, the ambiguity of my role is thrown even more into relief. TBH, I’m glad I don’t have the level of responsibility I would if she were my actual mom, but I do want to be as helpful as I can from where I stand. (I hope some of you understand what I mean by that weird statement.)

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I do~I had a foster mother, acquired the same way, who filled the same role for me long after her son and I split up.

Try looking for the Commission of the Blind in your state. It’s a state agency, often affiliated with Vocational Rehab, who will be the repository for resources, support and extensive training for independent living in spite of blindness other late onset. They teach white cane walking, braille, etc as well as hooking people up with needed adaptive equipment, like talk to text phones or adaptive home modifications.

I think this is your commission:

https://dsb.wa.gov/our-services/independent-living

Your local Area Agency on Aging would also be a resource as well. Many of them are a resource facilitator for all kinds of disabilities, both in services and access to equipment and transportation.

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In addition to government agencies, senior citizen’s centers may be a resource. Some of them are social groups that meet once a week and go on outings and they may not be able to help much - but the senior citizen center on my corner is a different type. It’s open 8 hours a day , five days a week , run by Catholic Charities and funded by the Department for the Aging. There are others run by different non-profit social service agencies and as far as I can tell, all of them offer at least referrals for services they don’t provide, but some of them provide services for the visually handicapped either at the senior center itself or through the agency that operates the center.

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My mother went blind slowly from retinitis pigmentosa. Here’s a few links you might helpful:

Accessibility Support Phone Lines You Should Know - OE Patients (ophthalmicedge.org) - this is a list of numerous companies that have support services for customers with vision loss. They can help with getting devices set up right to accommodate a customer’s needs.

This article explains the new accessibility features in iOS16, which may help when you go to the Apple Store.

Here’s a list of support groups of all kinds

The Blind and Vision Impaired Support Network on Facebook

A local low-vision clinic or low-vision rehabilitation center in your area may also be able to point you toward (or host themselves) smaller support groups.

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I think you’re in Texas, @ThelmaLou, as am I, and this page looks helpful. My mother-in-law made use of them in a couple of different Texas cities and they were really very helpful. Good luck to you and to Mary Lou.

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Yes, Mary Lou found this and is waiting on a letter from her doc confirming that she is blind and thus eligible for these services.

Thank you ALL so much for this info and these links! Dopers always come through.

7

Well, duh, @ThelmaLou, I don’t know why I thought you were in Washington state. Color me embarrassed.

Here’s the Texas version:

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Mary Lou is hoping to get hooked up with them as soon as she gets documentation from her doctor. Thanks!

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I’m so sorry! Check your local library and see what help they have for visually impaired clients. When my elderly not-by-blood great aunt started losing her vision, she got signed up for the library’s large print book by mail program. That was in the 90s. Now audio books are a possibility, among other services.

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My niece’s ex-wife’s father is visually impaired, and he goes through the local state department for the blind and they provide an easy-to-use phone app and free access to any audio book held by the Library of Congress. You have to be certified unable to read, or in need of assistance. Your local public library probably also has free downloads of audio books.
StG

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Talking Book Program - Texas State Library

The Talking Book Program (TBP) provides free library services to qualifying Texans with visual, physical, or reading disabilities. TBP is part of the National Library Service to the Blind and Print Disabled, a program administered by the Library of Congress. The TBP collection consists of more than 100,000 titles, including hundreds of titles in Spanish, and some in French, German, Russian, and other languages.

StG

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This site is based in Houston and does live reading of things like magazines and newspapers.

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Thanks, y’all. I’m touched by the support and suggestions. :kissing_heart:

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Years ago I interviewed an architect who suddenly lost his sight mid-career. He had a lot of interesting things to say about adaptation. He was not 91. But he really didn’t let it stop him from continuing his design practice. He started designing for sight-impaired people, printed his floor plans on a Braille plotter, and had a lot of things to say about way-finding. The other thing was he had a lot of support from his family particularly his wife.

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That sounds great for down the road…a bit idyllic for this early stage. She’s still trying to learn how to go to the bathroom on her own.

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That’s the sort of small thing that I’d be concerned about. Given her age, a fall can be really bad news. Can someone work with her to teach her how to walk to the bathroom (get off bed, turn to the side, so many steps forward, turn again, so many steps, etc.)? And of course the room should be cleared of any small obstructions, like tables or ottomans.

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That will need to happen, for sure, and the sooner the better. Apparently, someone from Lighthouse for the Blind will come out to the house and teach her these things, but someone in her household needs to make the calls and the appointments. Mary Lou needs help and support, but effective help and support.

Mostly, she needs to connect with the state program ASAP and she knows this. But she’s the one having to make the phone calls and follow up with the doc’s office. The family isn’t stepping up to the plate the way I want them to. Her 91 year old hubby is devoted but he’s reeling from this almost as much as she is.

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One question; I assume she was in a hospital after the stroke; did the case/care management people make any arrangements for after discharge?

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I don’t know. And I do know it wasn’t exactly a stroke. I said that in my post as shorthand for what it really was… which I don’t know exactly. It’s some kind of disease affecting the optic nerve that came on suddenly and there may have been small stroke involved that triggered everything.

I’m a very detail-oriented person. I want to know the names of things (particularly medical things) and what the acronyms stand for. I want to know what the numbers are and what they mean. Most people I know aren’t like that-- they’re happy with whatever vague thing “the doctor said,” and this family is typical. They aren’t detail-oriented at all and I get wobbly answers to my specific questions that often change in the retelling.

I know from multiple hospitalizations that I’ve been a party to first with my late husband and also with other men in my life, that the hospital social worker/case management person can be your best friend. They know everything and they can help you with whatever you need–and they want to help. As for Mary Lou’s interaction with anyone like that-- I dunno. :woman_shrugging:t4:

Please excuse me in advance and allow me to indulge in a mini-rant: If she were my mother, I’d have interrogated her doctors thoroughly, and all the external support stuff that needs to be happening would be happening. I don’t have that license, and (if the truth be known) I’m not ready to take on the responsibility. I had to do it when my own mother needed me to step in, move her across the country to assisted living, manage her medical stuff, keep a close eye on her, arrange her cremation, and dispose of all her worldly goods (there weren’t many). I’m an only child, so it all fell on me. Mary Lou has three smart, well-educated, capable, adult children (ages 60s and 70s), grown grandchildren, beaucoups of nieces, and a husband. They are intelligent, competent human beings, and they need to be arranging for her to get what she needs. I love her like a mother, but she’s NOT my mother. On those occasions over the last 50 years when I’ve allowed myself to tentatively consider myself family I found out quickly that blood is way thicker than water. Thank you for letting me get that off my chest.

I’m going to see her and everyone tomorrow. Her older son, my ex from 44 years ago, is in town. He’s been married for decades and has grandchildren. I haven’t had an in-person conversation with him in almost 40 years. Should be interesting. Might have to pop a .25 mg xanax before I go.

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I hate to say this, but…

Ageism is a thing, and you have to watch out for people who don’t think a 91 year old woman is worth bothering about. Which is another reason she needs people to help advocate for herself.