My Dad is Legally Blind

Last spring my Dad chopped up a tree in his backyard and hauled some pretty heavy logs around.  He got quite a workout. Then a few days after that he woke up with some incredibly blurry vision in his right eye.  My 78 year old Dad has glaucoma and for the past several years the vision in his left eye has been diminished enough that he had mostly given up driving except for very short distance trips.  He has been relying on the vision in his right eye to see.  He called the Wilmer Eye Institute where he goes for his glaucoma visits and was told to come in.  He had suffered a retinal vein occlusion.

If you've never been to the Wilmer Eye Institute at Johns Hopkins I can tell you that the majority of people sitting in it's waiting rooms are seniors.  All of them are waiting for someone to stick a needle in their eye.  They're the ones who must not have been paying attention to the oath we all took in elementary school when we promised not to lie "Cross my heart, hope to die, stick a needle in my eye....".

This was not the first time my Dad had required an injection to his eye and it hasn't been the last.  The injection worked immediately and my Dad's vision was restored.  For about two weeks when it diminished again.  The best way to explain what had happened to his eye is that he had suffered an eye stroke, and not just one.  The loss of blood and oxygen had caused part of his retina, the part he uses to focus, to die.  The injection merely cleared away leaking fluid and as his retina died, my Dad's vision was lost.  He can sense light which makes his eyes very sensitive and so he wears dark glasses quite a bit.  He is considered legally blind.

My Dad is a voracious reader.  He has spent a good deal of his life buried in a book.  His mother used to have to kick him outside to play because he spent so much time indoors reading.  The other thing my Dad finds great enjoyment in is his computer.  Finally, gardening has been another interest of his. When I realized that his vision would not be restored, I began searching for a stem cell study that might regrow the veins and retina that were lost.  There is no such study.  At least, none that I could find.  There is no treatment or reversal for this condition.  Fluid continues to leak out, slower now than initially, which further impairs my Dad's vision until he gets another injection to clear it away.  Hopefully that will cease after more time has passed and the frustration of further vision loss will go away.

My Dad's regular physician has been zealous in treating his high blood pressure which was the cause of the vein occlusion.  While no one wants to lose their vision, I think it could have been more serious.

One of the things that concerned me most was how my Dad would respond emotionally to what had happened.  I think at first he believed, especially after that first injection, that his vision would be restored.  When the final diagnosis came back the following month my Mom described it as "a bummer".  Yes, definitely a bummer.  However, my Dad has been in great spirits throughout this experience giving me one more reason to admire a Dad I already hold in high esteem.  I would say the same about my Mom in this situation.  She too could be angry and frustrated - my Dad has become not quite wholly dependent on her.  She drives him to all of his Doctor's visits and anywhere else he needs to go as he can no longer drive himself.   She doesn't have the time to herself that she once enjoyed and worries a lot about my Dad.  Yet, she's been in good spirits throughout.

My Dad's new vision status has been a learning experience for all of us.  Other than the medical side of things, how could my Dad retain his independence and still enjoy books and his computer?  My Dad can see well enough to walk the dog and so he's continued to do this.  Every afternoon you'll see him out walking with Mickey for about 45 minutes.  He can't cross the street any longer because he can't see whether or not a car is coming so his route is a little different but he's out there.  He can see well enough to still pick up after his dog.  In the kitchen, he is still able to cook and he makes dinner regularly.  Last summer when we went to the ocean, he still got in and went for a swim.  Luckily it was a very calm ocean while we were there because he told my nephew "All the waves look giant to me!".

Reading was the biggest loss for my Dad.  A lifelong learner he does not seem interested so far in learning to read Braille.  Initially I did a lot of research and found that his Kindle could read to him.  He has one of the earliest models that had some experimental technology included that is not available on newer models.  It reads in a monotone, but it was a good stop gap while we learned what else was out there.  Audio books abound these days with actors doing excellent jobs telling the story or reading the information.  However, it's not as easy as just handing a device to someone and then off they go.  My Dad can't write down instructions and then read them later.  He has to memorize all the steps that need to be followed.  Also, my Mom is not the technical one in the family.  She loves her iPad and she uses email but that's where it stops.  She too has to learn whatever I'm teaching my Dad because I'm not always available to answer his questions.  There are things that you and I would never think about when listening to audio books.  Can you pause the book?  Can you start right back where you left off?  For example, a book on CD is fine, but you can't always pause it where you want and then start back up.  My Dad would need to find the track he's on and figure things out that are much more difficult for him.

Understanding what resources are available to someone with my Dad's status has been critical to ensuring my Dad stays independent and can engage in activities that he loves.  When you are legally blind, you are eligible for free services and tools that you would not be if you were simply low vision.  My Mom and Dad attend the "Low Vision Support Group" at the Bain 50+ Center every Tuesday morning where they've found out a lot of information.  My Dad is a US Veteran as well, so he gets additional services and tools.  One of the first things we received was a book reader with cassettes from the Library of Congress.   While the Kindle got us to a certain point, the book reader is so much better.  Its simply audio books in a different format using a device that my Dad can operate.  While my Dad can't read to himself, he does like listening to all the books.  He receives 5-10 books in the mail and then as he finishes we drop them back in the mail again to return them.  You can choose the books you want to read or you can just choose categories and the library will choose for you.

The computer has been a little more challenging than the books.  My Dad had just purchased a new all in one MAC with the big retina display when he lost his vision.  Now we know all about the accessibility features on that computer and he's had several tutoring sessions from people at the VA who came to his house.  The other night I noticed my Dad is getting much better at using his computer.  The computer will take longer to get used to than the books, but I think eventually my Dad will use it for all the same things he did before.

We're all getting used to the fact now that my Dad is legally blind.  Sometimes we can be a little over protective, "Dad, watch out, there's a step here, can you see it?" because we want him to be safe.  When we're out and about I notice that someone turns around to make sure my Dad is still with us as he has to follow someone when we go someplace new.  When they shop my Dad used to head off in one direction and my Mom in another to meet up in another location in the store or at the cash register.  My Dad doesn't like to do this any longer because he feels that he'll get lost.  I'm hoping he and my Mom will make the move to new cell phones that include apps for blind people that would help my Dad navigate around stores and other places.  Also, if he got lost he could just call my Mom and say "Come get me, I'm lost."

It's pointless to wish my Dad could have his vision back.  Instead I hope every day that it doesn't get worse, but if it does we're prepared.  We're in a good place right now and slowly but surely my Dad is adapting to all the new devices and the new world he exists in.  Physically and mentally my Mom and Dad are in great shape and have been enjoying a wonderful retirement.  As we age we all get to deal with something that throws us for a bit of a loop and this was my Dad's loop.