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Mom saw eye doctor this week-long her vision has become really poor. They said it isn't her eyes at all. It's her brain's inability to process what the eyes are seeing. She is on risperidone and it has very common visual side effects- some that she is having. Anyone with any info on this and how to manage it? She has a farm, animals and is very active. Vision is so crucial to quality of life!

If anyone told me that, I'd be seeing my retinologist STAT.
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Reply to Llamalover47
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I found this Teepa Snow helpful as I noticed my husband losing peripheral vision https://m.youtube.com/watch?v=iaUsRa5kNyw
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There is a subset of Alzheimer’s Disease called Posterior Cortical Atrophy that significantly affects vision and the brain’s ability to interpret visual input. A good eye doctor, a OT or Neuropsychologist doing cognitive testing can often pick up on the visual field cuts and reading problems. It is hard because it doesn’t get better with therapy. The best thing is to put effort towards adaptations similar to what helps others with low vision.
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The occupational therapist who treated my mom after a hospital stay said she had no depth perception, and said that this is something common in the very elderly that an ophthalmologist doesn't test for. They can see the edge of a step, but not how far down it is to the next step - the edge could just be a line on a flat surface for all they can tell.
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I am a seasoned therapist and I have NEVER made a diagnosis about a patient's eyes! How about taking your mother to her PC for a complete annual checkup. And then you can also schedule an appt with a psychologist who you have seen before OR one that your mom's Dr Suggests, God's love & my prayers for you! Dr Jack Grenan
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discontinue the med.
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Dear EllenSW..
Yes w the cognitive diagnosis & eyesight..My father’s spatial awareness & depth perception were the first to be compromised..A bit later, he developed pinpoint-pupils, which narrowed sight even further..When the brain communication center changes, it affects many of the senses.😢

An unforgiving disease..Prayers to you & Mom..🙏🏻❤️
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Ellen, I don't have first hand knowledge of Alz & vision change, but I can tell you that you might want to look into vision therapy. I've been doing it for several mos (not related to Alz or dementia). It has helped me tremendously. My vision therapist told me we really do "see" more w/ our brains than our eyes. I never knew how much of a correlation there was. The eyes are really just the lens but what we see is processed in the brain.

The majority of her patients are children or stroke patients.
I don't fit into those categories, though. Part of my situation was hereditary. It manifested differently in me (some tendencies to going cross eyed, eyes not moving together, esp when tired) than your mom.

So depending on what is up w/ your mom, it may be worth at least looking into.
Treatment in my case involved weekly visits and vision exercise homework 6 days a wk. I am "graduating" treatment and am seeing now how I do w/ 4 days a wk.

I live in So CA, and even here there are not a lot of qualified Vision Therapists. It's still considered kind of "new" for people like me and as such, insurance didn't cover my treatment, but maybe your mom would fare differently. The industry is trying to get it accepted by more by insurance.

Best of luck to you and your mom!
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If you feel she needs to be seen by a specialist, an opthamologist or a retinologist may be the choice. But the doctor on this thread offers valid, expert advice - Dr. Benshir.
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I strongly urge you to get your mother off of the risperidone as quickly as possible. Your mother may not be able to adequately express herself, but I suspect that the side effects of the medication are much worse than the initial vision problem.  And FYI, the elderly should not be given haloperidol, as it is not well tolerated.  Studies have shown that anti-psychotic medications substantially increase early death in elderly patients.
For visual disturbances, have your mother look directly at the delusional image.  It will probably disappear. She should sleep with a low wattage light on.  This will help decrease visual disturbances.  Make sure she gets adequate sleep and is well hydrated at all times. Good luck to you both.  I'm so sorry you have to deal with this.
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EllenSW, I am a neuro-optometrist by profession. I specialize in vision rehabilitation for patients with neurological disorders. There are very few of us, but those of us in this field can restore vision loss to Alzheimers and other dementias, strokes, double vision from Parkinsons and other neurodegenerative disorders. For patients who are unable to participate in a full rehabilitation program, there are compensatory treatments as well to maintain visually guided functions.

I agree that you have to ask the doctors what caused the loss of sight. Saying it is cognitive is meaningless. If it is a medication side effect that must be addressed ASAP. The longer her vision degenerates the more difficult it can be to treat successfully. Where there is a problem there is a cause, and that leads to better diagnosis and more effective treatment.

Most optometrists and ophthalmologist don't know how to diagnose much less treat these types of disorders successfully. Go to noravisionrehab.org to find a specialist near you. Not everyone who is a member of NORA is trained or certified in this specialty, so call and ask the doctor about their training and level of certification. Feel free to pm me with questions.
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This is how our Mom started out. We had her tested with a psychiatrist for cognitive testing. It took a couple of years to get her diagnosed correctly with a compitant neurologist. Read up about Lewy Body Dementia, have the Dr prescribe Home Health and be prepared for hallucinations to come soon. All family members need to agree to a care plan. (My brother and Dad thought my Mom could still drive a car!) Be your Mom's advocate for her health care no one else will be there for her except her loved ones. Question every medication and side affects and don't let them over medicate her. Teepa Snow is an excellent teacher for caregiver, family or assisted living center. Google her and watch and learn!!! Prayers for you and your family!
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The most detailed information I have ever found is Oliver Sacks’ last book ‘The Minds Eye’. It may not answer your question, but it’s a great read and probably the clearest way to understand the neurology of eye-to-brain.
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That drug is an antipsychotic and has several possible side effects. Ask the doc if the dose can be adjusted or if another medication could be used. Meanwhile, get her some help on the farm.
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I don't have any advise, I'm afraid, but I've read this topic with interest. My mom has glaucoma and has had cataract surgery 2 years ago. She just had another follow up and her eye sight was still the same as last year. Lo and behold, 2 weeks after her check up, she starts complaining about her left eye being blurry off and on - that's the one she takes glaucoma drops for. Tomorrow she is seeing the ophthalmologist who is her surgeon's back up and I will be certain to ask about this. My mom is an avid reader, voracious actually. I can't imagine her not being able to read!
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JohnnyJ Jan 15, 2020
Hi Kirahfaye,

There now is a treatment for glaucoma--a laser treatment to the white of the eye. It keeps the eye from producing too much fluid so drops are no longer needed. My friend, for whom I am POA, had each eye done and now no more drops are needed. He couldn't remember to do them and is now in a memory care apartment and has perfect vision--doesn't even need glasses at age 93. It is a relatively new procedure that the eye doctor was just learning about 3 years ago.
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This topic is very interesting to me. We recently called the eye doctor for my FIL after frequent complaints of not being able see and his glasses not working. I didn’t put together that he was only complaining of these things when he was looking for objects until reading this! The eye doctor did change his prescription, but I’m curious now to get the new glasses and see if they “work” or not.
Also, I’m incredibly grateful that this community exists and I have a place to share thoughts and feelings. So thank you all!
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Reply to Brandy260
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My father had Parkinson's with (quite severe) dementia and had this problem. It made him very agitated. He even had cataract surgery about five years go (he passed away this past March) which seemed to improve things for a couple of months but then it was like he never had it. My advice, if you don't get help with these other suggestions, is to accept that this is happening and might get worse, try to get her to do activities that don't rely as much on great vision, and try to calm her if she is agitated about this. If she blames you and it starts to affect you negatively, take a break from the entire situation and return when you are stronger. My father was a professor for forty years and an artist. Your heart will break for what is lost, but eventually it must be. I hope you are not at that point yet. Hang in there!
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I am most sure this is the issue with my mother, who it seems has hearing issues that are cognitive. I always say, the information from the ear doesn’t get to the brain correctly.
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Brandy260 Jan 14, 2020
My FIL, I feel, experiences this too. He can hear me whisper when he’s “tuned in”, but other times will have the tv so loud we hear it on another level of the house and say he can’t hear it. He refuses to wear hearing aids because “they are too loud”. His PCP told me this is part of the decline, but he’s now experiencing it with sight as well. Especially when looking for an item - a glass from the cabinet, remote or phone from the table, etc.
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In the latter stage of his dementia, my father was also diagnosed with having cognitive interference of his eyesight. His eyes were fine but the brain wasn't processing it as well. Before that the same thing occurred with his hearing. He just didn't recognize the words he was hearing when they tested his hearing. We did not have him on medication. Despite these things, he still participated. The changes were subtle.
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My mom seemed to have visual perception problems once she got Alzheimer's. For instance, if she had to walk down just 2 shallow steps to get out of the house, to her, it was like going down a steep slope. I only learned recently that vision issues are somewhat common with Alzheimer's. I wrote a book about our travails taking care of her: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale," but I didn't include the vision issues, because I thought it was just her. Now I know better.
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Brandy260 Jan 14, 2020
Side note - the title! Feel like it’s describing my life right now. Lol❤️
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I dont have an answer except my own experience which unfortunately wont explain things ...

i still work ... im almost 80 ... and so cant figure out if what i call a grey veil ... is caused by glare at work or home or sunshine or ??? but it isnt continual.

it can happen at work or outside or just right now as i sit here.

and a weird feeling of feeling like its difficult to see and that i have to concentrate accompanies it.

my eye doc ... an opthamologist ... says no problem but since its happened for several years and is annoying i finally went to a neurologist who had an mri done that shows nothing except mild central and cortical volume loss and low-grade leukoaraiosis ... which may mean binswangers disease ...loss of white matter ...someday.

so i guess what im saying is not to give up but an answer unfortunately may not be an answer after all.
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Invisible Jan 14, 2020
Betsysue2002, I have a veil over my eye which they promised would go away. It's like a very fine net and it is annoying. This is what my eye doctor told me: Over time, the vitreous gel that fills the eye becomes liquid and condenses (shrinks) due to age and normal wear and tear. ... Clear vitreous fluid fills the space between the condensed vitreous gel and the retina. If a PVD progresses gently, gradually, and uniformly, the symptoms are typically mild. It's called Posterior Vitreous Detachment. Is it possible you are experiencing this?
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Some thoughts: see someone who is a geriatric specialist (or do a consult over the phone or something) to get her off the risperidone and onto something else if need be to see if that is the whole problem.

Get a second eye opinion. Some of the computerized equipment they have these days is so great it can do an Rx without the "which is better a or b" routine...but of course they may agree with the first person.

I know there is someone in the Cleveland area, an eye person, who was doing a study or had concluded the importance of dealing with cataracts in people with dementia. Though I know you don't mention that as a problem.

Is she having some sort of hallucination? Would it be a possible onset of Lewy Body? Just wondering...
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Assuming the eye doc is an ophthalmologist, not just an optometrist - if not, it might be better to consult with one or even if it is, consult with another. While it is possible what they tell you is true, it can't hurt to have another opinion.

Being unfamiliar with risperidone, I did a lookup. I would ask her docs about trying to get her off this medication - the huge list of side-effects, including impact on vision, was scary! Once off this med, reassess her vision, assuming any changes/impacts from the medication are not permanent. If her vision improves, stay away from that med.

Despite going to ophthalmologists vs optometrists most of her adult life, mom was let down by one. She cut a trip to FL short due to vision issues. She went for an exam and this doc told her she was fine. She wasn't and knew it. She called to ask for another appt. She was told by the person on the phone that she was fine and couldn't get appt with this doc - she told them she didn't WANT that doc. The one she did get to see at the second appt examined her and said 'Oh my, follow me', and took her to a retina specialist they have on site. Long story short, she had macular degeneration. She has been getting treatments ever since. That first one, because it wasn't identified soon enough, has lost vision (impacts central vision), but now, despite dementia and living in MC, I insist we continue treatments. Her hearing is really bad (none on the right side, limited even with hearing aid on the left.) If she were to lose her eyesight, what would be left for her?

Sounds like your mother is still very active with the farm. If there is any way to protect her eyesight, go for it!
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robinsoul Jan 14, 2020
Hi. I found that many of my mom's symptoms would be related to side effects of the medication yet the medical team would say, she has dementia or fill in the blank.
I found speaking with pharmacists was the most helpful. They are more aware of side effects than doctors.
Always trust your gut over what any "Professional" dogmatically tells you.
Take Care hope her vision clears up soon
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In my husband's case, though it wasn't called cognitive, the optometrist said there was nothing that could be done for the vision loss in his left eye.Since he had cataract surgery a few years before we went to his ophthalmologist and he said not problem, used a laser there in the office and took off the cloudy area.
So, anyway, always get a second opinion.
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disgustedtoo Jan 26, 2020
An optometrist might be okay for testing your vision and prescribing glasses, but we have always gone to ophthalmologists, since I was a kid! The only time I went to one (free exam via the medical plans we had), he was perplexed at my results to one test - the test he was using isn't good for someone with "lazy eye". I have the same problem with anything that divides my vision, such as the eye test machines they used in school, binoculars, dual microscope, those viewmaster things we had as kids and most 3d images. He had no clue. An optometrist is not the person to go to for anything other than glasses!

But, as I noted in my post, even the ophthalmologists can make boo-boos. In mom's case, it could have cost her all the vision in that eye. The damage that was done can't be undone. What vision was lost is permanent. We keep the treatments going, thorough tests/treatment every 4 months, to help protect the other eye.
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My wife has dementia and has lost all but 30 degrees of her peripheral vision over the last 5 years. Normal vision is about 180 degrees.  If she is watching tv she can't see me enter the room and it scares her when she does notice me.
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texasrdr22 Jan 14, 2020
Interesting. I had never considered that Mom's peripheral vision might be declining. She jumps every time I approach her from the side. This might be an explanation as to why she reacts that way.
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My mother has macular degeneration which affects central vision as well as vascular dementia which affects peripheral vision. So yes , cognitive conditions definitely affect vision. I think any neurological condition is capable of that defending on where the CNS is affected
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You don't mention if your mother has dementia or alzheimer's. My mother (whose mental abilities are declining) is experiencing the same thing. I noticed that she wasn't able to interpret what she was seeing. She couldn't follow the instructions at the eye doctor. It has gotten worse over time, and now she sits with her eyes closed much of the time. Check with your doctor, but I just read that risperidone is not recommended for people with dementia. We put my mother in hospice-type care so that she doesn't have to visit doctors for check-ups. The ophthalmologist has kindly agreed to renew her glaucoma prescriptions, to preserve her sight as much as possible. I, too, am hoping that she doesn't lose her sight.
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disgustedtoo Jan 26, 2020
OP's profile does mention dementia, along with other conditions.

There can be other reasons causing someone with dementia to be unable to follow instructions (doctor, eye exams, dentist, etc.) For our mother, it is mostly a hearing issue (she has dementia too, several possibly 6+ years now.) Often if we can pantomime what to do or give a visual direction, she can do it. The macular degeneration was unfortunate for mom, but the initial incident was long before the dementia crept in. We are keeping her treatments for that going to preserve her remaining eyesight. I know she can see me from across the room! If I stop to talk with someone, I'll see her waving her arms at me!

I looked up that drug - I would ditch that asap myself, dementia or not!
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One more thought about the farm animals. I wonder if she could “mentor” a student or two from 4-H or FFA (Future Farmers of America). That way, they could help her with the labor and she could feel like she was the person doing the helping. Maybe check with your local schools to see if they could help facilitate something like this. Keeping her and you in my thoughts.
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disgustedtoo Jan 26, 2020
This would be a great idea on many levels! Keeps her socialized, brings in the young'uns (many older people enjoy having young people around!), she gets some help and can help the kids by teaching them too!
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I’m thinking an occupational therapist might have some suggestions for you about how to help her cope with this. Even if your mother will not go, they may be able to give you some suggestions. And if you are fortunate enough to find one that specializes in geriatric patients, so much the better. If not an occupational therapist, perhaps an Activities of Daily Living specialist (ADL Specialist). I’m not 100% certain that ADL Specialists still exist. My mother did this back in the 70’s. She is now an Alzheimer’s patient. I’ve been fortunate in that my folks have always been rule-followers, and what the docs say is gospel. So when the eye doc said there is nothing more they can do with her glasses to make her vision better, she accepted that. Of course I have to remind her of that, but she accepts it each time. So sometimes I’ll read to her. If you struggle to find an Occupational therapist, you might try finding a hospital or care facility based support group. Wishing you the best. It is a difficult journey, but you will find good company and support here.
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My husband has the same problem. We took him to eye doctors, and they kept saying his eyes was fine. I googled and came up with PCA dementia. This was one of the symptoms. His peripheral vision is really bad. I don’t think there is anything that can be done, if you find one, please let me know.
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