Geographic Atrophy: Caring for a Loved One Losing Their Sight

By Linda Chernek Moore, arsenic told to Keri Wiginton

Whether you unrecorded pinch personification aliases not, nan domiciled of caregiver tin beryllium all-consuming. But for illustration they opportunity earlier takeoff: Put your oxygen disguise connected first. In different words, you can’t attraction for others if you don’t attraction for yourself.

I besides be aware group astir being chopper caregivers. Instead, if your loved 1 has imagination loss, thief them find solutions to beryllium arsenic independent arsenic they want. 

I wish I’d known much astir really to thief my begetter aft he was diagnosed pinch geographic atrophy (GA). That led maine to commencement Our Macular Degeneration Journey connected Facebook a fewer years aft he died. My extremity past and now is to thief caregivers and folks pinch immoderate shape of age-related macular degeneration (AMD) find accusation and support. 

If your caregiver acquisition is thing for illustration mine, you whitethorn not study everything you request to cognize astatine nan doctor’s office. 

Let Me Tell You About My Dad

I’m 70 now and cared for my begetter earlier he passed distant successful 2012. I’m not judge precisely erstwhile he was diagnosed pinch GA, though his show became spotty astir 7 years earlier he died.

He and my mother, who had Alzheimer’s disease, were successful their mid-80s. They lived successful Pennsylvania, but my hubby and I were 700 miles distant successful Georgia. And it was reliable trying to negociate their attraction from afar.

It besides didn’t thief that my dada was not a very unfastened person. We didn’t cognize he was having imagination problems until we saw him wearing acheronian sunglasses and complaining that he couldn’t spot definite things. 

GA is an precocious shape of barren AMD, and it causes varying degrees of imagination loss. Your loved one's acquisition whitethorn disagree from my dad's.

In nan early stages of his imagination loss, he told maine he would dangle connected my mom to show him what colour nan postulation lights were. At nan time, we didn’t deliberation it was a large woody that he couldn’t place nan red, yellow, and greenish lights. Of course, now I cognize that was an early motion of AMD.

I yet sewage him to his optometrist, though it took a while. And it was difficult to get long-distance accusation from nan doctor. My caregiver days started 15 years ago, truthful we faxed and emailed backmost and forth. They didn't return our telephone calls, astatine slightest not regularly.

I had to portion together really to negociate his imagination loss. And my dada was a very proud personification who refused to judge thief astir of nan time. 

When you talk to group pinch AMD, you’ll often perceive them opportunity 1 of their worst fears is simply a nonaccomplishment of independence, particularly pinch driving. What besides comes up a lot, which I heard from my dad, was not to worry: I’m conscionable driving locally, he assured me.

Unfortunately, personification pinch GA whitethorn person 1 aliases much unsighted spots. And, yes, he still had his peripheral vision. But what we tin spot pinch our broadside show isn’t arsenic elaborate arsenic nan cardinal imagination we usage erstwhile we look straight astatine things. 

That intends if you person GA, and you thrust and look consecutive ahead, sometimes you can’t show if thing disconnected to nan broadside is simply a mailbox, a bicycle, aliases a person. The thought of my dada hurting himself, my mom, aliases personification other frightened nan daylights retired of me.

Now, I impulse different group pinch GA to usage be aware erstwhile driving and to drawback a thrust pinch personification other if you cognize your show is failing. If you don’t want to dangle connected friends and family for a lift, location are a batch of section rideshare services and moreover apps to thief get you wherever you’re going. Ask your oculus expert if it’s still safe for you to drive.

Long-Distance Caregiving 

We tried to move person to my folks but couldn’t negociate it.

One of nan things I did regularly was talk to my parent’s friends and different family members. I would ask: How are mom and dada doing? And I’d often get much accusation astir my parents that measurement than from talking to my dada directly.

We besides traveled to Pennsylvania arsenic overmuch arsenic we could and would ever inquire my dada really he managed regular things, including my mom’s medication. That worried maine because she had different aesculapian problems, including Alzheimer’s. 

My hubby is simply a retired occupational therapist. His specialty was seniors and Alzheimer’s. You tin ideate he was a awesome thief to some of my parents. 

We went to nan drugstore to get him tons of magnifiers. We put them successful nan bath and each complete nan house. And we created a makeshift strategy truthful he could still negociate mom’s medication. 

But I could footwear myself now because my hubby and I could person done a amended job, we think, successful helping my parents if we’d conscionable known astir each nan low-vision adaptive devices and techniques we could’ve tried.

How Caregivers Can Help Loved Ones With Vision Loss

My dada was slow to judge our support, though he was thankful erstwhile we sat pinch him successful personification and figured retired ways to make his life easier. 

But alternatively of telling you what helped pinch my dada – since we didn’t cognize overmuch astir low-vision immunodeficiency astatine nan clip -- I deliberation it’s amended to spell complete what I cognize is disposable now that I wish I could’ve suggested to him backmost then. 

I decidedly would’ve taken him to a low-vision optometrist and a low-vision occupational therapist. 

Low imagination specialists cognize to inquire things like: What do you want to do and can’t? Do you request to make a market list, but you can’t spot what you write? Well, here’s insubstantial pinch lines connected it and achromatic markers. 

My dada told america he couldn’t spot nan TV surface clearly. Now I cognize location are typical telescopic glasses to thief pinch issues for illustration that. Also, we would’ve invested successful amended magnifiers for group pinch GA. There are truthful galore of them now. 

Some group usage video magnifiers, aliases CCTVs, to publication nan newspaper, mail, a book, aliases thing printed. You tin moreover usage them for grooming aliases arts and crafts. You tin constituent nan video camera astatine thing you want to spot larger and successful much detail.

If your loved 1 isn’t that tech-savvy, return them to a low-vision specialist. A master will return nan clip to thatch them each astir really adaptive devices activity and which devices whitethorn thief them nan most. 

How to Know What Your Loved One Sees

Caregivers should effort to understand really nan world looks to personification pinch GA. Get a newspaper aliases constitute down a mates of lines of words and inquire your loved 1 what they see. Do definite letters aliases words disappear?

You tin besides get an old-fashioned timepiece pinch numbers connected it. Ask your loved 1 pinch GA to look astatine nan halfway dot. They whitethorn show you they don’t spot nan number 2 aliases nan number 6. Some group whitethorn not beryllium capable to spot nan halfway dot. 

If possible, spell to appointments pinch your loved 1 and talk to nan expert astir what their tests mean. Remember that immoderate group pinch GA do good connected acuity tests, and immoderate don’t. But really good personification sees an oculus floor plan doesn’t opportunity overmuch astir really they spot retired successful nan existent world. 

Ask your loved 1 to picture really their imagination nonaccomplishment affects them. Try to get them to springiness you circumstantial examples of areas wherever they whitethorn request help. 

My Best Advice for Caregivers

You mightiness find it challenging to prioritize your needs. But a patient diet, exercise, and accent guidance are critical. And a beardown support web is captious for everyone involved. Reach retired to friends and family, online groups, aliases meet others successful your community. 

Learn nan facts astir GA. Find retired really nan information changes complete time. Then look for debased imagination aids, services, aliases specialists to thief your friend aliases family personnel unrecorded their champion life contempt this disease. 

I consciousness for illustration I’m a caregiver of sorts to nan group successful my Facebook community. And galore of nan recently diagnosed who travel to our group are scared. How do you conflict fear? We do it pinch information.

Photo Credit: SetsukoN / Getty Images

SOURCE:

Linda Chernek Moore, age-related macular degeneration advocate, Acworth, GA.