Is there anyone else caregiving for someone with macular degeneration?

deb, I am sorry for your loss. I did two blog posts about MD one recently and one awhile back. The earlier one was all about the Charles Bonnet syndrome. My mom had that alot in the early years of her MD but i never knew until we visited an eye specialist and she saw pictures on the wall the other MD patients drew, she said those are the things I see. Its facinating to read about the syndrome because it explains so much. My only fear now is that i may become a MD patient as both my mom and her sister had it. If anyone is dealing with this feel free to read at palcaregivers only hope my experiences help others on this journey. Ruth Anne

Ruth, maybe I didn't say it quite correctly; not sure mom so much had confusion as she was accused of having; what I did actually talk about in relation to her vision was her hallucinations, which of course she was going to definitely be accused of having dementia, for sure, but I'd read about something called Charles Bonnet's syndrome of people with macular degeneration but I just could never find anybody else who'd heard of it, so it was just somewhat dismissed; now, having said that, for all that, she not only "tried" still cooking but she was pretty much expected to still cook, at least in as much as she couldn't get by with them eating TV dinners; I really wish I had known about the home care we got later for dad when she was still around and that we could have gotten it then for her as well but I didn't; never dreamed it could be gotten; thankfully though she never got burned or anything, of course, it is true that maybe why she didn't is because she would go off and leave it then forget she'd put something on to cook so maybe there was more going on than her vision, something that also led to the dementia talk, and maybe there was in addition to the vision issues; now the other problem is that while we were attempting to deal with mom's vision issues it turned out that dad's were getting worse and turned out that he did hit someone with his car way before he was declared unfit to drive, just that his insurance company told him if it happened again they would cancel his insurance so I guess it's a good thing that her eye doctor in that next town dad was driving her to where it happened told her there was nothing else that could be done for her, so they could quit going over there. Of course that somewhat's what ended up killing her.

I had an elderly friend with macular degeneration among some other problems. He was definitely not safe to drive anymore, nor was he safe with a power chair or mobility scooter. Several times he was almost hit by a car on them, and he completely totaled his apartment with those items. It got so bad that he started having near misses with people. Dealing with someone who's going blind it's definitely not easy, especially when they are a danger to not only themselves but others. This is why they should never be given access to any power chair or mobility scooter. I actually saw the dangerous combination firsthand, and please believe me when I say that blindness and machinery just doesn't mix. I'm not the only one around here who ever dealt with the situation, several other people who knew the same person also dealt with this.
There are other areas and with my friend did not do well because of the macular degeneration. So he would try stuff such as cooking, he was really not safe around the stove since it was a safety risk in his particular situation. This is partly why he had home health care to come in and cook for him. That way, there would be no nasty accidents from burns and stuff. There are just some things that people with macular degeneration just should not be doing when their sight is no longer what it should be. In fact, I really wouldn't be a bit surprised if there have already been people who were very seriously hurt or even killed because they were doing things they should not have been doing and should have had help with. I also wouldn't be a bit surprised if my friend may have actually hit someone with his car before he was declared unfit to drive. Again, dealing with someone who's going blind is definitely not easy. There comes a time when they are a danger to themselves and others if given the wrong tools.

debdaughter, you mentioned you thought moms confusion may be more related to sight tgan dementia. Thats interesting because i have felt the same way with my mom. My mom has sever MD and bad hearing loss. The lack of sensory stimulation from sight and sound I believe had lead to her being more confused. She only picks up parts of conversations and cannot see well enough to fill in the gaps. I truly believe there is a link connecting it all.

so you and your dad live together? you're not much older than me, just wondered if you were already learning the braille, which is the incentive to go check my latest lesson I just could not figure out some of the latest stuff

sorry...gives me migraines) but he was adament he would never use them and I should just get used to it! Lindaz

Ps I offered to buy my dad a headset so that he could hear the tv better ( volume is often 30 or higher and g

Hi HelpmeLord, my dad is 86 and has wet macular degeneration, severe glaucoma and severe hearing loss and myasthenia gravis...yes he can be very cranky and often mis-interprets what he hears and it is ALWAYS a negative misinterpretation. I'm only 60, and I also have glaucoma, cataracts and the beginning of macular degeneration, but thankfully, can hear very well. I'm not sure if it's the hearing loss that makes him so angry ( he always assumes the worst) but I don't think it's the loss of his eyesight. As for me, I'm more than willing to learn braille if I lose MY eyesight but he certainly is not willing. Perhaps it's the age difference between he and I. He also is unwilling to admit that I (at 60) am losing my sight and I think it is because he has a narcisstic personality. After all, anything he has is WAY more important, worse etc...than I could possibly ever have. I'm reminded of a cartoon I once saw where 2 old women were standing next to a new grave and 1 old women said..."I have what he had but mine is much worse" Hahaha....sure he's dead but your's is worse! Give me a break! I really think it has to do with the personality type that you have. If everything revolves around you (i.e your dad) then everything is worse for him and he feels hhe has the right to take it out on you! Please remember his bad attitude is HIS problem not yours. Blessings to you, Lindaz.

Dear helpme, my mom has had MD for over 20 years. I recently wrote a story on my site about how we as a family cope with this and help her manage. She is a wonderful person and has maintained a positive spirit throughout. For a link to her story check my about me page. Hope reading it will help you too.Ruth

Wet Macular can be addressed with injections into the eyeball. It helps, but don't expect it to be the magic bullet.

Your answer is yes. Early onset MD (wet or dry) can occur. Hearing loss can happen early. I started wearing one aide at 57.

When the new low energy florescent lights came out years ago I did not like them as I could sense the flutter in the bulb similar to the flutter produced in the long tube florescent lights. There is a very small percentage of the population that can sense this, and sure enough I was thrown into that percentile :P

So I had stocked piled the old fashioned light bulbs, I have several large bins in the basement with all sizes of those bulbs. My electrician said he did the same thing as he didn't like the light from the new bulbs.

The newest cctv type devices are little hand held "mice" that you connect to your tv. You simply scroll the mouse over what you are reading and it is magnified onto the screen of your tv... this is handy for things like food labels and directions, but I'm not sure how easy it would be to follow a line of text to read. There are also hand held digital magnifiers now that look pretty cool, but I have not actually used one.
The high end magnifiers can enlarge up to 15X, but it is always best to go with the smallest you need. These lighted magnifiers cost several hundred $ each and the digital ones and cctvs can cost into the thousands, that is why it is best to get a low vision assessment so you don't spend your money on things that aren't suitable.

One simple trick that was really helpful was to use fabric paint, the kind that makes a raised pattern, to mark things like the start button on the microwave or washer. You don't need to use dots, a big old x will do.

FF, maybe I didn't say it right; dad was doing the new light bulb thing at all; we were; he was just not using what should have been; in particular in the kitchen they had a ceiling fan light fixture that was supposed to have 2 bulbs in it but he would only let one be put in, so the new kind we put in was brighter but either too bright for him so he thought it was using more energy - actually that's all I can think of because it shouldn't have gone out and needed to be replaced but he would take it out anyway and replace it with - again - only one of the older kind that would then be dimmer, making it so hard on mom, so I don't quite understand; your mom was having a harder time seeing with the new kind of bulbs? maybe because she was having the light she was supposed to have with the old ones?...and the heat wasn't a issue there; that was more from the way their vent was in their kitchen directing the air right at them not like in their old house but mom was the one who was getting more hot anyway where she'd always been the cold one and dad was the one getting colder where he was always the hot one but he wasn't about to turn the heat up - at least not yet, then he'd just put on a sweater.

Too, when I said earlier I bought one of those lamps it was the kind with the magnifier too but it was a table lamp rather than the floor one, not sure where or how she would have dealt with that either - or then maybe I do but not sure she would have either but then otoh I think maybe she would have; anyway, we put this one on the end table at the end of the couch, which wasn't normally where she sat but she started sitting there and reading and everything was fine until - not sure if something we should have thought of or if something happened - it seemed to bite into the table and get to where it wasn't stable, which I hated because it worked so well until then and she really appreciated it, should have done something about it but think those problems got overwhelmed by the later finding out about the other

And I still never heard anything about surgery - are you talking about the laser as well? And I, too, think the AREDS vitamins only slow things down, not stop or reverse it.

mom did have the lighted magnifier as well but it was heavy too so she didn't use hers very much either; wish we could have gotten into the whole prescription thing but not really sure how that worked; we found what were supposed to be low-vision optometrists locally but at least the one we went to didn't seem to anything prescription wise; he just had a box of devices to look through or maybe she just wouldn't actually do it; seems like maybe we didn't actually find out about him until, again, we had all these other issues. Was your mom's like those page magnifiers - my husband gets those - except it also had a light? So your mom knew about the CCTV - thanks, couldn't remember that term - wouldn't use it? why - same thing as the lamp? didn't fit the décor - how would you have gotten hers? seems I haven't seen anything about them lately - surely they still have them? I don't remember her ever having any problem with filling her glass - we thought that was my dad with his coffee cup and it did turn out that while we were dealing - or not - with mom's eye issues - he was getting severe cataracts - but I think they did try to get her - or maybe did and she didn't use it - a talking watch - I know they also tried the dots or something, maybe just marks on her washer as well to help her there, but beyond that was being able to tell about the clothes themselves.

The best organization to get current information on macular degeneration is the Foundation Fighting Blindness in Baltimore, MD. (www.blindness.org) It is the lead, perhaps still the only, research and educational non-profit totally dedicated to retinal diseases: macular degeneration, retinitis pigmentosa, usher's syndrome, etc. One of its key supporter is Steve Wynn, owner of the Wynn Hotel is Las Vegas, who has RP. Gordan Gund, former owner of the Cleveland Cavaliers pro basketball team started the foundation, recognized for its high percentage of dollars going straight to research and programs, NOT for administration. Been associated with them for years. Talk to their folks...there are chapters across the country.

My parents [90's] have been taking folic acid [Vit B] long before getting macular degeneration and have always ate healthy meals, walked 2 miles a day come rain or shine. The folic acid didn't stop them from getting this eye disease. Age did. They took folic acid because both had parents who had strokes.

Macular degeneration is a common age related issue according to the National Institute of Health and the Mayo Clinic, and can be inherited from a parent. Yikes, both my parents have AMD but chances are I won't live to see 80 or 90 anyway.

Macular degeneration is linked to poor nutrition. See WebMD for a description of Folic Acid and its role in prevention.

Thank you everyone for you most helpful answers. She is going to the Dr. in a matter of days. She has always been independent and I think this also is a problem. I am going to learn everything I can everyday and take very deep breaths.

Thanks Freqflyer. Don't like those odds, especially when there are always great possibilities for complications.

I just did a quick research on that laser surgery and the article said it is used for leaking blood vessels in the eye, depending on where said blood vessels are located when the patient has wet macular degeneration. The article said out of 100 patients who used the laser, it was only successful on 15 patients.

My Mom, aged 82, has the wet macular and she gets shots in her eyes. It was 1x/month and now it's like every 3 - 4 months. I am going to investigate this laser surgery "Wintersun" mentioned. Everyone is different but still....we should be given all the options from our doctors.

Good luck to everyone who is dealing with this personally and stay strong to all of us caretakers!

I'm pretty sure the AREDS formula is only supposed to slow the progression of those with early signs of AMD, not stop it.
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.

Oregongirl, when one gets older, it take a small army of people to help an elder age in place, and it becomes very exhausting and frustrating for the grown children.

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.

My Dad was also doing the new light bulbs thing to save energy and that created quite a problem with my Mom and her macular degeneration. I could not convince him that Mom was having quite an issue with seeing because of the type of light those new bulbs put out. Plus Dad had to crank up the heat in the house because Mom felt colder because the old bulbs use to produce heat. So Dad didn't save a dime :P

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.

lindaz, that is so cool that you're actually trying to learn braille; I'm actually taking the braille transcribing course right now so if I can be of any help, I'd love to

isn't it sad how 2 people can handle the same thing so differently; how I wish my mom could have been like your neighbor; mom was also so frustrated that nobody could "fix" her; she also talked about the glasses issue as well; seems like she actually lost hers at the doctor's office or maybe just thought she had but she had like a zillion other pairs at the house that she kept getting them all mixed up; wish I'd known more about or her eye doctors had had those donation boxes for us to get rid of them

I have had two different experiences with this. My dear neighbor had macular degeneration, and lived fairly well into his late 90's. He used a device from a low-vision store to help with reading. He learned to get around using his cane rather like a blind person does, tapping along, and feeling with his hands to find the post where his bird feeder hangs. He was out with his cane feeding the birds every morning, smiling and listening to the chirps. It was not until his wife became very disabled that they moved into AL.
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.

oh, pamelac, that is so wonderful! hurts my heart so bad I was never able to get her one, especially now; do you mind my asking how you were able to actually get the one for my mom; long story, but dad took all mom's money and put it in with his (course partially, in his mind, anyway, for her protection; she was somewhat bad to let it get away) and not entirely sure if she actually could get access to it, but even if so, it got to be issues between them but if I'd known more about these machines outside of just ads in magazines; not sure we actually made to an actual low-vision store? is that what you said? that actually had them - where did you find some place like that? but that is just so wonderful!

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

Debdaughter, the big magnifier screen is great! Some people even use it for knitting, point being that you can get it to lock focus on any distance you want. Mom sometimes turns the camera sideways to display people across the room, or facing herself to see how her hair looks. Being able to read is a very big deal, possibly the most stimulation she gets. And reading tiny instructions on OTC meds is pretty important, too.

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!

wintersun, I'm intrigued by your dad having laser surgery for his AMD? it gave him back his sight? could you tell more? thanks