My 92 year old Mom is in NH with probably mid-late stage dementia. She has had very poor vision in her Right eye for years after shingles on her face 40 years ago. Her vision was very blurry and not correctable, but she lived with it fine and left eye was good. Last August she got shingles again on her face. (Make sure you all get your shingles vaccine!) At that point she could still read the eye chart at her private pay eye Drs office. On and off after that she suffered from what I called either “visual disturbances” or down-right hallucinations due to UTIs and med side effects. We have since gotten past these. In January the NH eye doctor told me very matter of factly that she had “sometime lately” had an optic nerve stroke in the previously good Left eye and probably couldn’t see anything out of it. It could have been caused by the shingles infection, but who knows. She sometimes now tells me it’s “dark in here” or “I wish I could see your face”. I try to humor her by saying I’ll open up the shades, or console her with I know you can’t see very well, and put her hand on my face. Then that’s the end of it. And all her aides now know that she can’t see who’s talking to her, or where she is, or where they’re taking her, and she is much more dependent than before this vision loss. So they have to explain things in detail. Again. And Again.
2 questions:
Is anyone here familiar with an optic nerve stoke and could there be any vision left in the eye?
How/ what to say to Mom so she doesn’t freak out, when she says things like I wish I could see you. I don’t want to depress her, since she seems to have taken this in stride and doesn’t really complain about it other than the few random comments. Is there something else I could say to her? I cannot imagine her confusion. Yet she’s still singing and happy, and I’m trying to keep it that way.
You might want to research to find either a vision clinic associated with a teaching hospital, or a top notch, well respected doctor who treats issues with vision. In my area, there's an institute affiliated with a teaching hospital and university; that kind of facility would be the kind I'd be looking for.
Mayo or Cleveland Clinic are the high level types of facilities I'd contact, but also ask the private and NH doctors if they have any recommendations for vision specialists, especially with optic nerve issues.
They could address the optic nerve stroke issue.
As to interaction, I honestly can't think of anything right now other than what you're doing, and consciously avoid discussing the issue of vision. Maybe later I'll can be of help but right now I'm just overwhelmed with what you and she are facing.
Sending at least a lot of good thoughts to you and your mother.....
I feel so badly for her, it’s heartbreaking. And she is the only person in the NH who has such vision problems, so I’ve had to make sure the staff is aware of it so they can address this appropriately and with sensitivity. The other day in her room one of the best aides forgot and asked her “Ella, what are you looking at?” She just said “Oh just the blue sky”. Sigh.
I’m not sure what we could gain by putting her through an exam, but he might have some ideas if there’s anything that could be done to improve her right eye which might improve her comfort.
Thanks!
Your mom has really had an unfortunate series of events with her poor eyes. I don’t have a solution but to suggest you take your cue from your mom who seems to be adjusting well. I’m not sure what I would do in your place. Sometimes hearing that we have a condition is very hard to accept. She has had a good long while to adjust to diminished vision in the one eye.
Thankfully you don’t mention her having difficulty hearing as vision is so important for lip reading and visual clues. The repeating requirement might be contributed to her dementia as much as to her loss of sight. I imagine her eyes told her certain things intuitively just as any sighted person experiences. I’m wondering if the repeating is a symptom of her trying to reason, to put together what she is being told that prior to her loss of vision would have been easier to understand?
My late FIL had shingles on his face. It was awful for him. He suffered nerve damage and was always sensitive to the slightest breeze.
Thankfully my FIL did not lose his vision but he suffered with the after affects of the shingles the rest of his life. He was basically deaf. I’m not sure he could have handled losing both his sight and his hearing.
My uncle (82) had an optical stroke last year. He had been hit in the face a few months earlier by debris from an 18 wheeler accident. He was stopped at a red light and the object came flying through his windshield, shattering his windshield and giving him a horrible black eye. He got into an altercation with a young female police officer who was ordering him to go with EMS and leave his car etc. He had already called his son to come pick up his car and the officer was trying to make him leave his car with a wrecker driver. He was understandably upset but did not want to go with EMS or surrender his car. He drove the car off the street and she told him she was going to handcuff him. Thankfully the son arrived with help and they resolved the issue with the officer and the wrecker. My uncle, who is well over six foot with beautiful white hair and now a bloody face was so upset that he was being discriminated against due to his age when he was perfectly fine (not).
I can just imagine the scene. He refused medical treatment. Later he was taken to his ophthalmologist where he had shards of glass removed from his eye and face. He seemed to heal fine but a few months later he was found in a woods near his home completely disoriented as to direction. They soon determined that he had suffered a stroke and he was hospitalized. His vision is so poor that he lost the ability to drive, to use his cell phone or read. He was big on texting and googling and since he also is practically deaf it makes communication harder.
He will hold the newspaper or a magazine up to read and it’s upside down. But he is still engaged in life and never mentions the accident or other problems.
My cousin now has her mother who is on hospice with Parkinson’s and her dad with his loss of vision and mild dementia. She has been told there is nothing the doctors can do to improve his vision and that the trauma of the accident most likely contributed to the stroke.
I’m glad your mom has such a sweet disposition. That makes life better for the both of you. The phone call to her doctor certainly wouldn’t hurt.
One last incident is inspiring to me. My aunt (91) has a little dog (15) who had a cataract removed about 6 years ago on one eye. He did great with it. Slowly as he has aged he has lost his vision in both eyes, his hearing and has two teeth left. At first I thought he was developing dementia before I figured out his handicaps. He was in a state of confusion for about a year. He was always a very smart little dog and I thought he was really done for. Now he has figured out how to navigate his world and seems more himself. He is still loved and still gives love.
Our vision is a gift but of course we are more than our vision. Your mom is still showing you how to accept certain things in life as they are. And it’s wonderful that she still sees “blue sky”.
I wish I had some good suggestions; it sounds like you're on top of the issue and are searching for possibilities while offering comfort to your mother.
Your post is a reminder how much we value our sight, and how life can change when what we've taken for granted suddenly becomes threatened.
“Your mom is still showing you how to accept certain things in life as they are.”
Thank you for those lovely words! She is so peaceful and happy, I don’t know how she manages and I look forward to spending time with her each day. I do agree that her repetition & increasing confusion are probably as much vision related as dementia. It’s all one big chicken/egg problem. I just want her to remain as happy and healthy as possible for her remaining time. She is such a blessing, especially when I read the posts from other daughters whose moms have become so mean and abusive and hard to be around and I feel so bad for them. I feel guilty even posting about our small issues sometimes. But I appreciate everyone’s responses and I have learned so much. I will call her eye dr this week to see if he has any ideas.