Is there anyone else caregiving for someone with macular degeneration?

oh, pamelac, that is so wonderful that you were able to get your mom one of those; that's what I was talking about that I wished I'd gotten for my mom; how is it working out for her? I'd love to know; I never really knew anybody that had one, just saw the ads in the magazines.
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

getnstrong, they somewhat said my mom got dementia as well but I wondered how much of it was actually related to her vision loss, though I never got any of that from any of her doctors but she definitely began having distortion, seeing people; when her and dad would be watching TV, it was on their front outside wall with windows on either side and she would say there would be people on their porch, would really upset dad - maybe he was just scared, don't think ever brought that up with the counselor - but did do some internet research and found something called Charles Bonnet syndrome related to the ARMD where they would see things/people like that but her eye doctor had never heard of it; there was some of the other on the part of both her and my grandmother; well, just several people and I've often thought it but have never quite heard the explanation you gave; like that though; it's hard.
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

First, you need to gather some support from the folks here to deal with your mom's meanness. She's dealing with a lot of loss, too, and apparently not very well. Try to be kind to yourself as well as her, and read the messages of encouragement here.

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!

oregongirl, I seriously hope you will reconsider your decision; when things got like that with my mom between her eyes and hip, she really wanted to move closer to me and dad was like you; he just wouldn't consider it, until it ended up being that she ended up leaving him alone, something he never expected; he did say at that point that he wished we had gotten them some place to live closer to me and then he would have sold his home - could that be your situation? - but by then he still wouldn't consider that, although he did start talking about selling the house to move into assisted living, like some of his neighbors but I do understand about putting yourself in that situation - he was a veteran so we did work on getting something through that that would have allowed him to go there without having to sell his house but had a hard time getting that done and didn't even know about it until after mom was gone, which I don't like but did allow him to stay at home - however, he had earlier wanted he and mom to move into a senior apartment complex that they could have done without having to sell their home but mom didn't want to do that at the time; it was done with an old hospital in town so only had the parking lot and no yard and she wasn't ready to give that up yet at that time, but looking back I think she somewhat wished she had; wish we'd checked into it more since she ended up not being able to work in her yard or enjoy it anyway.

The BVA people did get mom a lighted magnifier, which did help, plus I got her one of those natural light lamps and we kept trying to put brighter lights in her ceiling light - but dad would keep taking them out to "save on the power bill", so that's was an issue we kept having. They also brought out raised dots for her stove but she had a hard time adjusting to using things like that. Would have liked to have gotten her one of those magnifying machine things that you can lay your stuff flat on and it magnifies it on a screen since she wasn't much of a book reader but more magazines and she still tried to read the newspaper, maybe just the headlines; never could get her that but want to think it would have made a big difference, and she did still try to watch TV; they also brought her a white tipped cane and tried to teach her some mobility stuff but forgot she was also going through hip issues and the same time so that didn't help much. Since, somewhat because of that as well as not driving, she didn't get out much anymore - another issue with dad; he'd do anything "for" her, such as getting anything she needed or wanted from the store but didn't so much do "with" her such as taking her, which is what she really wanted, or at least to get and go somewhere; still remember taking her out to where her grandparents used to live and how much she enjoyed it, showing me the houses (large objects), etc. but she lost opportunity and experience in signing checks because of that; she finally did fall and fracture her hip, leading to her finally having to have or at least having hip replacement surgery but then of course the PT to get her back going after that was exacerbated by her vision issues, which had gotten worse by that point.
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 mother had the dry kind of macular degeneration, while her friends had the wet kind; she was so frustrated that they could go get shots while she couldn't; she was around 75 and was diagnosed when she was sent to the retinal specialist by her opthalmologist to be checked in preparation for cataract surgery; she was supposed to go back afterward but she didn't realize it, so ended up not getting back in there until after she started having problems from the surgery, so I'm not sure if I really know how things would have been with only the ARMD, since it seemed to turn out that she had other issues from the surgery that we didn't know for a long time, thought we were dealing with just the macular issues. But she did have hearing issues as well that were never dealt with; they were "old school" so didn't believe in debt and not sure you could get aids on installment plan then like seeing now but sure wish I'd seen about it and gotten some for her. She depended on my dad a lot - as he did her - so I'm not sure how much either of that contributed to both of their issues, as looking back after she ended up passing away, it somewhat seems as if they were both doing worse than we realized but were able to somewhat hide it as long as they had each other. I am glad I found out about the low vision world, though I wish her eye doctor had mentioned it instead of me having to bring it up to him but at least when I did he referred her to the state Dept. of the Blind and Visually Impaired. She had quit driving although it was never a legal thing - (somewhat unlike my dad later who got glaucoma) - actually I was told that with training someone with AMD could still drive, but mom was scared to try and then also not sure that's all she had but also was scared something would happen to dad and she wouldn't have him anymore and was taking that out on him; it was the BVA counselor who explained all that to me; dad just kinda ignored it, which upset her.

Don't ever give them access to a power chair or scooter because if I can't see well enough to operate it, they will be a danger to themselves and others. I know what I'm talking about because I clearly saw this happen and I was one of the unlucky ones who was almost hit by this person. This was going on for quite some time because the right people who could've done something to stop it didn't, Which led to an answer that that could've caused a fire at a big apartment complex after this person took out an electrical socket with his power chair. He was always banging into stuff and totally ruined his apartment. If someone with macular degeneration cannot see well enough to legally drive, then they should not have access to power chair of or scooters either. I saw the negative consequences of these tools being given to a blind person with almost fatal consequences more than once. If a person needs a wheelchair at all, it should definitely be a manual one but a caregiver should be the one to push that chair.

I actually watched someone going through much like you're describing. One thing I can warn you of from what I observed is to never give them access to a power chair or scooter. If they can't legally drive, then they shouldn't even have access to a power chair or scooter either and I'll explain why:

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.

My mom was about 76 when she was first diagnosed with AMD. Before she got to see a specialist she had a massive bleed that destroyed most of the vision in one eye, and the sight in the other eye has continued to worsen over time. She had needed a hearing aid for one ear before this and eventually got a second one. Despite this she functioned very well with home care once a week and lived on her own for another 15 years.
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.

I'm living with my dad (86) who has wet macular degeneration, myasthenia gravis, severe glaucoma and hearing loss. He, like your mom, can get really cranky. Thankfully, his mind is intact (we cared for my mom who died of Alz. this past January) but because of his meds, and general nature, he can be really cranky. It is hard to interact with because his hearing is so poor (and often does not where his hearing aids) and his eyesight has diminished so much. He's scared because his worst fear is of going blind, maybe that is true for your mom also. Because of this fear he often takes it out on me....which seems to be happening to you also. I've started to just ignore his mean (he calls them blunt and honest) comments and refuse to be baited into an argument, it stops the whole thing if I just decide to agree with him....of course he continues to pick at me and I smile and nod at him....maybe this is a passive aggressive approach on my part,m but I really want to stay out of a 'stupid' argument just because he wants to fight, find fault and be angry. I should tell you that I was also recently diagnosed with macular degeneration and I'm only 60. I've started looking into learning how to read braille. I don't want to go blind either, but I also don't want to take it out on others like he does. My blessings to you, Lindaz

My dad (101) has both forms of macular degeneration (dry in one eye and wet in the other). His sight has been declining for about 15 years. He is now legally blind. We do see a retina specialist on an annual basis to evaluate the health of his eyes otherwise.. Research is continuing to be done in this field, and maybe something for your mother will become available - but not for my dad. He is too old for the doctor to try anything new.

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.

Wow getnstong. It is difficult when we see the handwriting on the wall. I feel so bad for you. Do everything you can to avoid loosing your sight. Read, Study, take vitamins, eat healthy. After my parents passed, I knew I was the eldest sibbling, then recently, My Love passed. With each event, I am getting older. I am older than my sibblings, but in better shape than they are. But, life moves forward so fast. I hate the thought that I might possibly need my children someday to care for me. I am fighting it and refuse to move closer to them and sell my home. I see so many who move into AL, sold there home and have no choice but to stay where they are in AL. I WILL NOT put myself in that position. I wish people would not sell their home until they have spent a year in AL. I would venture to say, about 50% would move back home where the memories are.

My mother also has AMD and at 94 is nearly blind. Complicated by hearing loss, which is getting worse, this condition has contributed to dementia which our MD says is related to her vision loss. When she began having distorted vision, she insisted that people were changing things in and around her apartment. She has created a complex delusion in which she swears a relative(who lives thosands of miles away) is sneaking into her apartment and hiding things or taking things. I looked it up on the internet, and it stated that people do this because they can't cope with the reality that it is THEM doing the hiding (or misplacing). This has led to all kinds of issues in her ALF, as she swears the maintenance man has "changed" her thermostat, the controls on the elevator, etc. Latest thing is that someone came in and took a favorite pillow, and switched it with a lesser pillow. It is the same pillow she has had for years, but became enraged and aggressive when anyone tried to tell her that, so we have found it is just best to agree with her and say what a shame it is that someone would do that.
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.

Lots of great answers here. "she is 72, so what can I expect". WOW, 72 is not old anymore. However, I can see where someone would be very depressed over the issues with her eyesight. She is unable to read or watch TV without have spots on her eyes. That would make me a nervous wreak. I had a friend (recently passed away) and she could barely see. She was living in AL and going to meals on her own and just working through her dim sight. She was determined not to allow her eyesight to stop her. And add to this, your mom lost her husband. That is something that is very personal. Each of us have a different level of closeness to our spouse. Your mom may be suffering from her loss. But, get a physical done on her right away. If nothing is wrong, lift her spirits somehow. She probably has years to live.

My 96 year old mother has suffered from macular degeneration and other eye problems for years. She's almost blind now and has dementia. I believe the eye problems have exacerbated the dementia because not seeing or being as mobile cuts down on the stimulus we all need to stay involved. Now, instead of reading, bird watching, TV, cooking, etc. she is dependent on others. She isn't even sure whether someone is talking to her unless they are quite close or say her name. She is now in an assisted living facility and pretty well-adjusted. She comes to my house for holidays and many weekends. She loves music and short stories on tape. She still loves good food. In good weather she loves sitting on the deck, she enjoys short rides in the car... For a long time she manipulated "Tangles" (look on Amazon) but has lost interest now.

Here's an article about helping people live with vision problems. That's obviously not the only issue here but it may give your some ideas:
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

My father had macular degeneration. He couldn't see even with his glasses and a magnifying glass wouldn't work. So I took him to the eye Dr. They did laser surgery, and he could see again. He was 85, so IT was age related. Also perservision (vit A mostly) helps.

It seems that the problem is that your mom has become " mean and hateful" meaning ABUSIVE to you. Do you think this has something to do with the macular degeneration ? I would get a UTI ruled out and then take her to a geriatric psychiatrist to see about her mental health, her mood and her agitation.

Macular degeneration and a macular hole leading to retinal detachment are two different conditions. Macular degeneration occurs when deteriorating tissue causes deposits called drusen to accumulate and forms blind spots in vision.
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.

My MIL had macular pucker that became a hole and the retinal repair was not successful. She would tell me there were ants all over.... they were little specks or floaters from the retinal damage. It was easier to tell her I would take care of the bugs than try to convince her they weren't there.