helpmeLord Asked December 2015
Is there anyone else caregiving for someone with macular degeneration?
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I believe she is losing her hearing and suffering memory loss, way more than you would expect at 72. I took care if my father for the last 2 years of his cancer, but whatever mom is going through, she has turned it on me. I was just wonderng if someone might help me understand it better.
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A macular hole is something that occurs in the back of the eye where the fluid in the eye basically leaks out and the retina then detaches.
I just had surgery for a macular hole in which they insert a gas bubble in the eye and it is absorbed within 6-8 weeks and something called a scleral buckle to attach my retina. I am only in my 50s and otherwise healthy, but this can happen to very nearsighted people, which I am, and those that have had lasic surgery to improve vision without the use of glasses, which I never had. It takes a long time for this gas bubble to absorb and with retinal problems there are lots of little black floaters. I often have the sensation of a fly buzzing around. The floaters have lessened a bit as I recover from the surgery. The tough part now is the waiting and I am still caring for my bedridden 93 yr. old Mom. I am so glad for this surgery as the retinal detachment and subsequent blindness were extremely scary. There is so much they can do and I would talk to your Mom's eye doctor to see if there is anything they can do.
https://www.agingcare.com/articles/living-with-vision-problems-177792.htm
Other issues should be checked out, too. A complete checkup to rule out a UTI or other infection (gums, etc.), a hearing check, and of course a visit to a neurologist if needed.
Good luck,
Carol
I am hoping there will be progress in treating this, as I also have both AMD and Glaucoma, and see the writing on the wall.
He has coped over time by using various aids: a magnifier with a light that would fit in his pocket ($10 at Office Depot), an atomic talking watch ($59 from a low vision catalog), a guide for writing his signature. He no longer writes his name. His biggest fear is falling. He used to walk with his walker, but now the only time he stands up is to transfer from his wheelchair to another chair. He does live in an ALF with my mother and their cat. Not all facilities allow pets, but he finds the petting of the cat to be very comforting. He can no longer do anything to help with the care of the cat (nor can my mother), but the caregivers are happy to oblige (for an additional fee of course).
There are low vision stores or do a search of low vision devices on the Internet. There are a lot of items out there. If you go to a low vision store, someone there will take the time with your mother to find out what would be useful for her now and down the road. Talking books were of no interest to my dad, as his preferred reading has always been science and other technical books that require drawings to make them meaningful. He does enjoy television programming that is geared toward science and history. He also likes to go for a ride. He can still see large objects and describes what he sees. It continues to amaze us how much he can still pick out.
One other thing to know. This is a condition that can be inherited. I had genetic testing done because I have the very beginning of macular degeneration, but it is not progressing any further. The results were that I do not have the gene that will cause MD to develop further. What a huge relief that is. But it's something you might want to consider for yourself.
You can get more information at https://www.macular.org/what-macular-degeneration. When I have had questions, they have been helpful. Good luck to you and your mother. This is a challenging journey. The suggestions that she get an overall and a neuropsych evaluation are good ones.
She may have some cognitive decline, but she may just be missing verbal and visual cues. (I encourage you to get a good pair of ear plugs and put on a pair of sunglasses with part of the lens completely obscured and try to function in her world) I think it is only natural to become more isolated and dependent when you lose both eyes and ears, but there is something that can be done about it. Have her ears tested and get hearing aids. Have a low vision assessment and training. And encourage her to get out and interact with the outside world.
My elderly friend had macular degeneration and he was going to progressively blind, which clearly explains why he couldn't legally drive. When he got access to power chairs and scooters, he not only in danger to himself by nearly getting hit by a car at least four times, but he also had some very near misses with pedestrians, and that's not all. He was always banging into stuff and he totally ruined his apartment. He actually took out an electrical socket with that power chair, and the low position electrical socket had to be removed because of him. He lived in another house across town, and that house actually burned down at some point. He tried to accuse his son of arson, but when I saw how careless he was with a power chair and scooter, I started to suspect he may have actually said that fire because he had been using power chairs and scooters for about seven years. After seeing what he did to his apartment and the electrical socket in his last apartment, I put the pieces together and realized his son probably never set the house on fire after all but perhaps my friend did it with his power chair or scooter. Furthermore, he also ruined his power chairs and scooters when he was constantly banging into stuff. When my friend was finally put in a nursing home by the right people, his power chair and scooters were all taken from him and he was made to start using a walker. His power chair was returned to the VA since it was a VA owned chair, and his scooter was most likely sold. These items had to be removed from him because he couldn't see well enough to operate them safely, which is exactly why he was careless with those items. No blind person should ever be given access to these specific types of items because just like a car, they too are also weapons when placed into the wrong hands. I know what I'm talking about because I saw this happen and I was one of the pedestrians who was almost hit by me this same person. This has been going on for quite some time until someone had to do something, and taking the right action was long overdue.
I have told my eye doctor about it and she sent me to a retinal specialist and I do have some drusen and not quite 60 but it's not a problem yet but I might ask about the genetic testing; I have an appointment coming up. thanks
My mom (92) has wet MD in one eye and dry in the other. She is also hard of hearing and has some dementia. She does eye drops (diclofenac sod.) for inflammation 4x/day and takes Preservision AREDS 2 2x/day. I take her to the eye doctor every 6 weeks, where they take color pics of her eyes to check for inflammation. I think it's the wet MD eye that gets inflamed sometimes, and then the doc does an injection in that eye. That's several times a year, but it varies with the patient.
I bought mom a magnifier with a screen about 14" from a low-vision store that sells used and new devices. This one was used, $2000 at half price. But it takes up little space on the table, no more than a picture frame. The camera attached to the top focuses on the page (or even hands) below it. It can zoom in so big you could read a single letter at a time if you wanted, and it can do B&W or color.
I also got a headset from Radio Shack that mom uses for TV. It recharges from a stand and is cordless when in use.
The last tool I'll mention is humor. When things get misplaced, forgotten, or otherwise go wrong, we kid that the "gremlins" snuck out to do mischief. I started this, but mom's picked up on it and loves to blame them. We can then laugh and move on with nobody feeling blamed. Good luck!
Mom always had problems with depression anyway as well as being a nervous type person and the issues with her eyesight certainly didn't help things any, as well as dad handling it the way he did; also something I ran across seemed to indicate it was actually worse her having it mostly in just one eye because of the adjustment issues then between the two of them; it said she probably would have been better off had she been willing to wear a patch over one eye but couldn't even get her to quite do that; she just wasn't willing really to make the adjustments that would have helped; she couldn't accept that there wasn't really anything that could be done; we tried to get to accept and enjoy what she could but she just wasn't really willing to do that; she kept wanting something "done" so in some ways it was good that we found that she actually did have other causes to her vision problem than the AMD
and what was the reason for getting the headset for the TV?
and how is she doing with her wet eye; even though mom didn't understand, the eye doc actually told me that it's actually the worse kind
The doc said he can only control inflammation with drops and injections in one eye, but I forget if it's the wet or dry. But he did an injection 7 weeks ago, and last week mom's vision actually improved from 20/40 to 20/30! Overall, I'd say it's pretty stable.
The TV headset is for her hearing problem. It's so much clearer when the sound goes directly into your ears instead of across the room, where you can get other noise from air conditioners, fans, etc. And yes, she can still hear the phone ring.
So glad my post helped!
yes, the doc said the drops/injections, etc. were only for wet kind, that mom didn't have, so frustrating. But now, whoa, ok, they were saying at first that mom's vision was 20/40 - better than mine! certainly not bad enough to not drive; they just couldn't understand why she didn't feel she could, but this wasn't the retinal specialist; do you supposed they just didn't really understand that it was because of AMD? because then much later after all this other stuff when they did extensive testing - finally - and seemingly only because all this other had happened, though maybe little confused, maybe not because, maybe just because that's what finally got her back in there, because that's when we found out she was actually supposed to have gone back after her cataract surgery; anyway, when they did that testing it came back more with something like 20/800! so you think maybe she really was actually a whole lot worse than your mom? but also they always said the stuff for the wet wouldn't actually improve vision just keep it from getting worse, so that's great re your mom!
and, ok, could see that re the TV - think maybe she got to where she just didn't really hear what they were actually saying, just saw what she could but could see where that could have been such a help as well; just wish had thought more about all that at the time, think was just wishing could get her hearing aids, goes back in a way to the other - but also looking back, even though mom was the one who was said to have the dementia, thinking might have even been more dad than realized or maybe he was just stubborn, anyway couldn't hardly get him to come off that money to get her anything; hate it so bad
Then there is my dear Father. The loss of vision with macular degeneration began to show up as his moods began to change. Very moody, losing memory, seeing things that were not there, The combination of the onset of mild dementia and the vision loss was (and is) difficult. Despite being seen by the very best specialists, he remained in denial, and angry that no one could make 'the right' glasses for him. Things became dangerous for him at his home rather quickly, between some very bad falls and some home accidents, it was not too long before he required 24/7 care.
You need an eye specialist to do a thorough exam and begin treatments to at least slow down the degeneration, there are once per month shots that at least hold it at bay somewhat. It is understandable to be upset at losing one's vision, however if the mood swings are really out of character, get an evaluation for onset of some form of dementia. Unlike my neighbor, due to the combination of both illnesses, it was not long before my Dad really needed Assisted Living.
To read my Mom has to hold a small very bright flashlight and a magnifying glass. She could use a magnifying glass with a light, as it was too heavy for her and the light wasn't bright enough.
I had bought my parents one of those floor lamps that has a magnifier in it, but Mom didn't like it as it messed up the decor in her living room.... [sigh]
For those not familiar with what someone sees with macular degeneration is it like a grey haze that starts in the middle of the eye, and over the years it grows larger and larger to a point where one can only see out of the corner of their eye.
There is no cure for macular degeneration at the moment but science is working on using stem cell to help with this medical problem. There is surgery to slow down the progress but it doesn't cure it. And my parents were taking the special eye vitamins but it didn't help.
Yeah, those fun memories have been replaced with bad memories of falling parents, trips to the ER, stubborn parents, parents who refused outside help, the whole nine yards.
The multitude of assistive devices available for low vision is pretty amazing. It sounds like the little lighted magnifier your mom used was not prescription grade FF, my mom's had an adjustable light and was designed to rest on the page. I used to wish for a CCTV system for my mom, but she wasn't willing to consider it. I expect that the technology has advanced greatly in the last 10 years since I last researched it.
Even the little things like a small gadget to help tell when your glass is full or a talking clock can ease things considerably. I encourage anyone dealing with this to do a little online research, you might be surprised at what is available.
Good luck to everyone who is dealing with this personally and stay strong to all of us caretakers!