Advice for Dealing with Parent Going Blind

Updated on September 01, 2013
S.D. asks from Essex Junction, VT
13 answers

Hi ladies! I just got back from an opthalmology appointment with my mother and was just looking for some advice or support. She has macular degeneration and has known that for a year or more. She just went to see a new opthalmologist a month ago and then we went back today because she has had a drastic change in her vision over the past month. One month ago, she could read a book (with plenty of bright light), enter things in her checkbook and use the phone (see the numbers). Now she can't do any of that. The Dr. today told her that yes, it has gotten worse and unfortunately there's nothing he can do about it. She's taking these lutein vitamins he recommended last time but that's the only trick he has up his sleeve at this point. He did say that she won't go blind, per se, but that her vision will get blurrier and she will have to (and already does) have to see using her periferal vision, rather than straight ahead. She was told by the opthalmologist and an optometrist that she shouldn't drive and today she handed her keys over to me. We both knew this was coming and is for the best and we've been telling her she shouldn't drive for a while now (both for vision reasons as well as her awareness and reactions). She's been realistic enough to know her driving days were numbered but it was so hard for her to do. My guts are in knots dealling with what she's going through. We've talked about doing things in her house like getting her a large-button phone and putting a bulletin board on the wall with commonly used phone numbers printed in a large font for her to read, so she can make phone calls. I'll be taking over her bills so she won't have to read her check book or the computer. I'm just wondering if any of you have had to deal with this and have any suggestions for making her life a little easier. She lives in an independant living facility now but is scared they'll make her move over to the assisted living part.

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So What Happened?

Thank you everyone for your awesome ideas and support! I really appreciate it! Just to clarify, the opthalmologist she's seeing is a retinal specialist - one of only 4 in my state. I think she had wet and it has now progressed to dry (or is it the other way around?) so the injections are not an option for her. She has another appt with them so they can inject a dye in her arm and see the blood vessels in her eye better, just to rule out anything else. Being hereditary, I also have an appt with them to get myself checked, just in case. I went over this weekend and helped her pay her bills and balance her checkbook. I will look into all these suggestions and do what I can to make her life easier, from products to support groups. Thanks again for the support and kind words.

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M.C.

answers from Washington DC on

So sorry.
My mom also has Macular Degeneration (wet). She started seeing a retna specialist about 6 years ago when it was diagnosed. She gets injections in her eyes every 6 - 8 weeks of a medicine called Eyelia. There was another one called Lutine or something similar, but they switched.

My mom's eyes aren't perfect. She doesn't drive anymore, and she has to use large print items, and has trouble differentiating between black/gray/dark items, but she can still see.

Sending hugs.

3 moms found this helpful

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C.O.

answers from Washington DC on

Verado:

I'm truly sorry about this.

My dad is, for all intents and purposes, blind in his right eye. He is 78 years young.

My dad still drives. However, he no longer drives in the early morning or towards dark as he has no depth perception any more.

He has changed his driving habits as well - considering he still drives a 40' motor home - I'd say he's doing well - however - my mom stays in the front with him. They added a dashboard camera as well.

His left eye is good. He does have Glaucoma and they did a minor surgery last month that released some of the pressure build up. So far - since his left eye is good - the doctor is telling him he can continue to drive. He has to take a driving test every year now - and he's fine with that.

can the doctor prescribe a lens for her?
can he perform laser surgery to help with anything?

I like the idea of large pad phone for her.
Set up her home/apartment so that she can navigate without issue.

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C.B.

answers from Boston on

I would google "low vision aids". Here is one:

http://www.enhancedvision.com/low-vision-info/living-with...

Here is the site from the American Society for the Blind:
http://www.afb.org/section.aspx?SectionID=26&TopicID=144

My grandma had it and had an alarm clock she could touch and it would speak the time. She received books on tape. My daughter has a product called "Dragon Naturally Speaking" that let's you speak to control your computer and type. There are computers that have a "speak out loud" feature that will read the information on the page to you. There are smart phones (Apple has Siri and Android has Google Speak which is excellent) that will let you speak into the device to search. There are probably all kinds of new products. There are also support groups for her. I would do some online research and let her know life will be different, but she can still enjoy it.

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S.H.

answers from Honolulu on

My late Dad, had that.
He was seeing a Retina Specialist/Surgeon.
Not just an Opthalmologist.

Anyway, per your city, you NEED to look for any "association for the blind/visually impaired." Because... they will have resources and/or information for you and your Mom.
Here is a link per the State you said you live in:
http://www.vabvi.org/
Click through all the links, to look for resources.

My Dad could not drive either. Nor work. Of course. Because he couldn't see. His vision was very poor. To say the least.
We, had to all do it for him and drive him and do care-taking of him. He also had other health issues etc.

YES, it is very hard, for the person to adjust to.

Your Mom lives in an assisted living facility. That is good.
But like any "elderly" person, they may feel very apprehensive about it. Their whole life, is different now.
So try to understand it from her point of view and feelings.
Allow her to talk about it etc. and be a comfort for her.
My late Dad would say, that I was the only one... that he felt most comfortable with, even if he had all these health issues. Because, I still treated him, as a person. And still allowed him to be himself. Instead of treating him like a "handicapped" person. And I didn't talk "at" him.

I would also HIGHLY recommend, that you get your Mom a medical bracelet. So that, others will know she has a medical issue. Her eyes or whatever else she may have.

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S.N.

answers from Chicago on

Haven't read all the responses. My mom has the same thing and is going to an appt at a "low vision" clinic. They meet with an occupational therapist for a couple hours and learn about devices and technics to cope with low vision. Ask her doctor for a referral and it will be covered by Medicare.

2 moms found this helpful
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R.M.

answers from San Francisco on

Yes, my mother dealing with the same thing. I don't live near my mother, however, so there's nothing I can do.

Her vision has gotten a lot worse over the past year, so she has others read things for her, as yours does. She also had to give up driving.

I'm still not sure how things are going to go, I'm just scared her vision will seriously decline. As of right now she can see, but things are blurry. I really don't have any suggestions, just empathizing.

She did join a vision impaired group, and some of the women were way worse than she is. I don't know if she's still going to the group. Maybe you can suggest joining a group to your mother.

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C.S.

answers from Jacksonville on

There are also Magnifying screens that can be used in conjunction with a computer or tv, among the several things already mentioned in previous posts. There is also a handheld GPS just for people who want to get out and walk but, aren't able to see. I learned about several things when my dad lost his eyesight to diabetes, shadows was all he could see for the most part the last 10 years of his life. BE ENCOURAGING AND POSITIVE IT WILL RUB OFF ! C. S.

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L.C.

answers from Washington DC on

I think a trip to Massacusetts Eye and Ear is in order.
My grandmother had macular degeneration and the docs there were the best. They did what they could, which back in the day doesn't compare to what is available now. They sent her to classes to learn how to live with low vision.
Go to Mass Eye and let them help you.

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R.M.

answers from Cumberland on

Contact your local Lion's Club and see what resources they have to offer-and best of luck

1 mom found this helpful

A.G.

answers from Dallas on

My step-father (now divorced from my mom) has been blind in one eye for 20 years because of failed surgeries after having a detached retina, and then 3 years ago he had an accident and lost vision in his other eye. He is now completely blind. He also has MS, and has difficulty walking, so that complicates matters as well.

He lives in an assisted living facility and does remarkably well. We put stickers on his TV remote and on his phone so that he can feel which buttons are which. He can walk with his walker as long as someone guides him, and he has a friend in an electric wheelchair. He can hang on to the back of the wheelchair and walk behind her. In his room, he has learned his way around, and can maneuver without help quite well. I buy him snacks and drinks for him to keep in his room each week, and he is able to fix those for himself.

We were very worried about him when he first had his accident, but he has adapted much better than we ever could have imagined. My brother and I take care of his finances medical needs, and we visit him all the time. He is really quite happy. I hope your mom does well, too.

1 mom found this helpful

J.E.

answers from Minneapolis on

She needs to find a new doctor ASAP. My dad is the youngest diagnosed case of wet Macular Degeneration. Initially basically everyone told him there was nothing they could do. He went to a lot of different doctors including Mayo Clinic. He finally went to the University of MN and found a doctor doing a new study and got in on that. It's been 15 years and he can still see. He has little sight in one eye, but they've been able to stop the deterioration and actually some minimal reversal.
Find a new doctor and keep going until you find someone who will do something.

Also, its hereditary, get checked yourself. There's a test an opthamologist can do to look for the precursors. Take very good care of your eyes. Always wear sunglasses, get the grid test and stay on top of it.

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M.B.

answers from Austin on

What type of Macular Degeneration does she have? Is it the wet, or dry?

My mother has Macular Degeneration, (wet type) and takes injections (in her eye) that have GREATLY slowed down the vision loss. She did lose vision in one eye before these new treatments, but it has at least stabilized the loss in the other eye.

She has done several different treatments over the last 10 years, but the latest ones are Lucentis, and Eylea. Both greatly slowed the loss of vision. She needs these injections very 6 weeks or so to maintain the vision she still has.

She can still read with magnification, which helps. This also has helped her to stay more independent, too.

I would suggest finding a GOOD ophthalmologist if yours doesn't know about any of this..... if his only "trick" is lutein, then he is severely behind the times.

ETA... just read the other responses... yes, the retina specialist is the one you need to be seeing...... there are lots of other "tricks" they can do. And...there are other good ideas, as well.

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E.S.

answers from Boston on

Hi! Been there, done that with my mom. I have lots of practical advise but first find a specialist to check her out, there are new things happening everyday. A specialist can also point you in the direction of practical help for her getting around. Definitely get her a big button phone. Get a good one that you can program numbers in to so she only has to remember that you are #1,her best friend is #2, etc. and fire, ambulance, etc are on top and in different colors. Lay in a good supply of Sharpies, it will make it easier for her to see what she writes and what is written to her. Remember--- write LARGE.My mom had a phone book where each name and number was on an individual index card, written in Sharpie, in alphabetical order. We hole punched the corner of each card so they would all be together but easily flippable. There are machines that are giant electronic magnifiers she can get to read with. I warn you they do take some getting used to but they can make life so much easier. Take a red Sharpie and mark 350 on her oven dial for her or glue something on it. If she knows where 350 is she can use it to judge if she wants the oven higher or lower. Marking or gluing can work with any number of things. My mom hated the touchpad microwave we bought her when hers died so we had to seek out one with a dial. Put a clip on her keys so she can clip them to her purse so she doesn't have to struggle looking for them. Radio Shack sells watches that say the time. The state will send audio books and the machine to run them, ask the librarian, they have so many now too. She can talk to a computer, it can talk to her. It will become very important for her to be consistent about where she puts things and anyone visiting has to be mindful of putting things back. Then there are the other things--- when you go to the bathroom take the opportunity to swipe something. Pick up the little bits of stuff on the floor when she's not looking. Use a tissue to dust a bit. My mom would have been horrified had she actually been able to see the dirt and dust so we (the kids and I) always tried to do things while we were there without her knowing what was happening. My kids even endured getting yelled at for using too much toilet paper or paper towel. I don't think she ever knew what they were being used for... There are lots of people out there to help you. Start with your Dr. office, your senior center, the state health dept., whomever you need to to get some answers to your questions of how to get along. I know there is lots more, I'm just too brain dead tonight to think. Give your mom a hug for me---

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