When you are close to someone losing sight, especially if you live together, the shock and grief for you at first can be almost as great as for the person losing vision…And you aren’t getting the special attention or professional care that may be offered to your partner, (parent, brother, or best friend.)
You will be the one holding everything together but having no time for your own life.
If you can get your loved one services and training in vision rehabilitation you will begin to get some time for yourself. It will not be the same as before, but with care and compassion on both sides – you and your partner, friend or parent can have a loving, balanced relationship.
At first reaching out for vision rehab services seems to stretch you even more, adding to everything you are already doing. But it will be worth it! Everyone needs time apart. Personalities rubbing against each other with no respite can take a big toll.
Finding good resources in your city and nation-wide will get your partner or parent back to more independence and adult competence.
Here are ways to contact organizations for resources that can help. They are all non-profit and well-regarded by people who live with low vision or blindness as well as by professionals in the field of vision rehabilitation.
Below these national phone numbers, websites, and email addresses you will find links to useful posts and to my book and contact information for audio libraries.
Finding vision rehabilitation services in your state and city
Services for people losing vision or living with blindness are provided by the state where the person resides. These services vary widely from state to State. This is an important point though it’s hard to take in at first.
States offer more services to people of working age, and most of all to students. (More at end of post.)
APH Connect Center (American Printing House for the Blind) with AFB (American Foundation for the Blind) have a good front desk which can assist you to find local services.
Call: 800.232.5463, Mon-Fri 8:00AM-8:00PM ET
Email: connectcenter@aph.org
Link to Home – ConnectCenter (aphconnectcenter.org)
You can also get to the Connect Center through
VisionAware, a website for older people losing vision and their families, which has a tab on the home page to take you to the Connect Center.
The VisionAware home page has links to information on low vision exams, services and benefits, as well as a “Getting Started” brochure available in many formats including large print, video, accessible text and in Spanish.
VisionAware also has good information for families
Link to VisionAware families and friends
Hadley Institute
The Hadley Institute offers information for people new to vision loss and has numerous workshops and groups. There is no charge.
Some courses are available by phone, with more online, in large print, in braille and on digital audio cartridges compatible with the book player from NLS Talking Books. (More below.)
Hadley is designed for the person losing sight or living with blindness, but anyone interested can also take the workshops or join a group to learn more about blindness and low vision.
Call: (800) 323-4238
Link to the Hadley Welcome Page
Link to Hadley Workshops https://hadley.edu/learn
My award-winning book When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery by Hannah Fairbairn, Charles C. Thomas Publisher (2019). This is the most up-to-date book available for people new to vision loss and their families.
The book walks you through the stages of vision loss including shock, denial, anger, and grief that most people experience.
The second half of the book has lots of personal stories and tips for recovering self-esteem and confidence. At the back of the book is a list of good resources (which are also cited within the chapters).
link to the book page of my blog
My blog offers videos and posts about all aspects of vision loss. Some videos are practical “How To’s,” some talk about grief and loss, and some describe my book.
Link to my blog Vision Loss and Personal Recovery.
Here is a link to the partners section of Vision Loss and Personal Recovery.
Links to specific posts
There have been almost 80 comments on the post Link to Dealing with vision loss in your partner, parent, or best friend.
Some of the comments as well as the post itself may mirror your own experience as your partner or best friend is consumed by their loss.
2 more posts for partners:
Link to The Team approach to sight loss in your partner
It’s the first intense months or year when you need the practical support from one or two family members or old friends. We all want to hide our pain but the endless effort and stress becomes more manageable if there is even one person to help.
The Challenges of Care-Giving, Guest Post by Audrey Demmitt RN.
Family and friends posts on VisionAware
What Family Members Need to Know about Vision Loss and Its Impact – VisionAware,
A Guide to Vision Loss for Family and Friends “Emotional Adjustment to Vision Loss: It’s a Family Matter.”
Steps to Take to Get Help for You and Your Family Member – VisionAware
Libraries: Access to Audio Books and Magazines
Anyone with significant vision loss or other disability which makes print difficult or impossible to read can apply to these 2 organizations.
Library of Congress Talking Books, known as NLS, National Library Service for the Blind and Print Disabled.
Thousands and thousands of titles can be borrowed from Regional Talking book Libraries. All the books and magazines are read aloud by mostly professional readers.
Here’s the llink to NLS Talking Books:
Call: 8886577323 to find which Talking Book Library serves your region.
Your partner doesn’t have to be legally blind to qualify for this excellent service. You do need a letter from a doctor or ophthalmologist. After signing up your partner will receive a book player on permanent loan. Then choose magazines and books which will arrive through the mail. There is no charge.
If your partner can use a smartphone, laptop, or tablet there is a free app called BARD which you can set up to get your partner the same magazines and books with the same readers on their computer or smartphone.
Bookshare is another platform for people who have vision loss or other print disabilities. There is an $80 annual fee unless you are a student. Taking workshops at Hadley or working with a vision rehab instructor would qualify your partner for free service.
Bookshare books are digital and only available through a computer, smartphone, or tablet. The voice is electronic and it is combined with highlighted large print text.
Bookshare’s range of books is enormous often including many editions of the same book.
Newspapers: Access to daily newspapers, (as well as Magazines)
the National Federation of the Blind., NFB, has an excellent daily newspaper service available by phone or on the NEWSLINE app:
NFB-NEWSLINE
Hundreds of daily and weekly newspapers and magazines can be read using electronic speech such as VoiceOver on Apple products, or NFB’s electronic speech with a choice of male and female voices on a landline.
To sign up, call your regional talking book library or
NFB: 866-504-7300:
Audible is part of Amazon, but separate from Kindle. The books are read by often excellent readers. There is a free trial after which you pay $7.95 per month for borrowing a selection of books, or $14.95per month to borrow the full range of their books. You can listen to the books on Alexa, the Amazon smart speaker as well as on a smartphone, tablet, or laptop
Google Home and Nest provide access to audio books including your Google Play Books library, and older books out of copyright. There is no charge. The books are not read by a reader but use electronic speech.
State Services for Vision Rehab
There are great differences in what states offer people losing their sight especially older people. Some people even consider moving. Of course this would be a huge upheaval but might be worth it in certain circumstances. For instance New Hampshire is a low tax state which can offer little, But move across the state line to Massachusetts and your partner or parent would receive some of the best vision rehab services available. Which states offer more or less can be a surprise and it’s important to check.