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My mom is in a secured dementia facility, but her eye doctor wants to see her in his office. She has been clear she will run away if given half the chance due to her paranoid delusions. How do you handle this? My mom does not have memory issues and is focused on escape. The care home said they will transport the patient, but my fear is mom will play along until she gets done and refuse to go back. She likes the facility, the staff, the food, her room, her roommate, but her delusions are very strong that something bad is going to happen to her there. She had the same delusions at home and at the hospital. The doctor is highly sought after and top in his field. I very seriously doubt he will do a house call because he needs his large machines to check her eye health.

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She will have to be accompanied. It will not be without cost. I don't know that I would do this appt unless absolutely crucial no matter WHAT the doctor wants. You can hire someone; will be costly. I would check on Care.Com or with her facility if they know an agency they trust.
At some point we will outlive our eye health or not, and all the stuff they can do for us is almost without meaning. I don't know your Mom's age or overall eye health, but it would be unlikely she would be addressing wet AMD with injections into the eyes or doing cataracts? Am I correct?

When was the last time he saw her eyes and what specifically other than overall eye health is he worried about? Does she have complaints about her eyes?
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Unless it is an infection or something really serious I wouldn’t bring her. Too much anxiety for her and you.
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Igloocar Feb 12, 2024
Loss of vision, especially in the presence of the eye diseases the OP has discussed, is very serious--and her mother is complaining about it!
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Is your Mom currently on any meds for anxiety or the delusions? If not, is this a possibility? Have you ever talked to her doctor about this?

What is the eye appointment for? MD? Cataracts? Glaucoma? It would be helpful to know this information.

If you get her to the eye appointment, will she be compliant with the instructions given to her and give accurate responses? If not, this may be wasting everyone's time. I remember when my Mom had cataract surgery in her early 90s. I helped her with the complicated eye drop regimen post-op. There's no way someone who isn't compliant will make it easy to do something like this. (Also, my Mom coughed during the procedure which caused a problem that we were thankfully able to fix but not without a lot of other appointments and another procedure).
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Your post says “HER eye doctor”, so she has seen this doctor before and you should know a bit about her problem and why she needs to go again. Could you tell us? I have had a detached retina, my DH has a wet macula, and after many many visits we both know our hospital eye clinic, its staff, its large machines and most eye problems pretty well. If you can tell us why your mother is being called in for an appointment, we (and other posters) would stand a better chance of commenting helpfully on whether this is a serious ‘need’ or whether it could be skipped.
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cover9339 Feb 2, 2024
🙏🏾 to both of you.
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First I will say that I hope that your moms doctor has her on some medications for her delusions, and if not, that would be my first plan of action.
Then second I will say that unless this eye appointment is a life or death situation, I would just leave well enough alone and cancel it.
Your profile says that your mom is 83 and has dementia(even though in your post you say that your mom "does not have memory issues")so you know that she will only get worse as her dementia worsens, and there will come a point where taking her to any appointments will be pretty much useless, as nothing will stop the inevitable.
I would just concentrate on keeping her as comfortable as possible(with whatever medications needed to help with her delusions)and let her enjoy and live out the rest of her days in a place that you yourself say that she likes.
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You say "My mom does not have memory issues and is focused on escape."

If she has dementia, she has plenty of issues. She needs calming meds from her PCP before even considering this doctor appt. You already are concerned it could easily go bad, despite supervised transport to and from the eye doctor's office.

Does she have a serious eye condition requiring possible surgery, or is this a basic checkup for glasses? Is this eye doctor aware of her current dementia, paranoia, delusions, or her focus on escape?

It all sounds really bad, so I would cancel and let it go.

Doesn't matter how "great" this eye doctor is. What if she uses this chance to escape, or has a meltdown trying to escape? Not worth the worry!!
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Honestly, unless mom has an eyeball hanging on by a thread, I'd not risk taking her out. When I worked in a Memory Care Assisted Living facility, a resident fixated on escape hid behind 2 visitors leaving the MC. When they knocked on the reception door to be let out into the lobby, the receptionist did not see the resident hiding on the camera. She was tiny and very thin. When the door was buzzed open, out came the resident running at top speed, right out the front doors to the street! The receptionist, in her 60s, took off after her immediately. The resident ran over a MILE down the main street before the receptionist could catch up with her. When she finally did, the resident refused to return to the MC with the receptionist. She started running again. This went on for over an hour before Deborah was finally able to convince the resident to go back to the facility with her. I think she lost 10 years off her life that night, running like a madwoman in the dark, cold night.

The set up at this particular MC was not well thought out and not secure enough for residents sly enough to outsmart others.

I don't care how this AL plans to get your mom to this eye doctor, it'd be a hard no for me. If she's wanting to run off badly enough, she WILL. Having dementia doesn't mean she doesn't have enough intelligence about her to run off if she's feeling paranoid. You need to speak to her doctor about calming meds to help her, too. Nobody should live in a constant state of fear. Ativan helped my mother a lot with her agitation and anxiety from advanced dementia.

Best of luck to you.
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cover9339 Feb 2, 2024
Lol so close yet so far.
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Thank you all for your insight. Mom is on week five I believe of meds for paranoid delusions. She is also on a calming med. She has seen multiple psychiatrists in the last four weeks. Nothing so far has helped. She called me tonight and said she is agitated and described her delusions of today (which she thinks are real occurrences), but she is sure they will give her some meds to help her sleep. The doctor at the facility just upped her meds last week, but no improvement. Mom has macular degeneration, and underwent eye injections. They did not seem to be working from what I understand so he stopped them. She also had cataract surgery in the last three years. The eye doctor wants to see her as he said her eyesight is still not that bad and he would hate for her to worsen. She last saw this doctor about a year ago, but stopped going. She was prescribed eye drops which she still uses daily. I informed the doctor of her paranoia, delusions and flight risk, as he was unaware of it. Due to paranoia mom doesn't share her delusions with doctors, etc. usually. Her physical health is actually quite good considering her age and that she has diabetes. Her lungs, heart, etc. are fine and other than being hospitalized with delusions last month she had never been hospitalized before. Her mother lived to be 92 I think and her dad to be 87. Her main joys are reading, playing solitaire, painting and needlework, all of which need good eyesight. I think that's what has me the most torn on this.
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MJ1929 Feb 8, 2024
I understand the agony of this as my mother -- an artist and a librarian -- had macular degeneration, too. She had multiple rounds of shots, and they also didn't help. Her vision loss eventually plateaued, and stayed at one place.

Honestly, I'd be surprised if the doctor woud do anything other than do another round of shots, and that means visits every few weeks. Is that something you'd want to risk? Also, if he hasn't seen her for a year, he has no idea whether her vision is worse or not. My mother never went a year between visits to her retinologist.
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Do you have an air pod or can you borrow one from a friend who you can contact if you do need to find her on the app, and slip it on her somewhere?
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Cheslra Feb 8, 2024
I think you mean “air tag”?
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So some stuff about eye problems. There are two sorts of macula issues: Age Related Macula degeneration is incurable, so M probably has the other sort, a wet macula. The ‘wet’ is blood leakage. The big machines can 'see' right to the back of the eye socket. A wet macula usually occurs in only one eyeball, and is treated by injections through the eyeball to the macula, right at the back of the eye socket, close to the nerve that goes to the brain. The injections are painful (so is the anesthetic injection before-hand), and usually have to be quite regular. Eye drops can help a bit by keeping the eyeball moist, but don’t do all that much good.

M’s wet macula may have got much worse in a year. You can do a ‘home test’ by getting her to look at something with a squares or a vertical line down it, covering one eye at a time. The wet macula causes the straight lines to have a bend or a wiggle in them. This will tell you which eye has the wet macula, how bad it is – and also if both eyes are affected. You can do it regularly to see if it’s getting worse – my husband does it looking at the calendar boxes, conveniently at eye level.

This is quite separate from cataract problems. If M has one ‘good’ eye, she should still be able to read. There are a lot of people who cope well with one functional eye.

My DH’s eye clinic doctor also says that his eyesight is not that bad and he would hate for it to worsen – that’s their job, and their challenge! You need to work out if it’s the worst challenge for M - that's your job.

Best wishes, and I hope this helps a bit. Yours, Margaret
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I would go with her or avoid outside appointments unless absolutely needed. In old age many appointments are not “needed”.
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https://www.agingcare.com/questions/83-year-old-mom-with-npd-is-having-hallucinations-paranoia-major-anxiety-nothing-is-working-now-in-a-485407.htm

Seems from your last post things have gone quickly since she now is in a facility. I can't see where you don't live close by. I will assume you can be there for her at the doctor's but even then I would pay to have some with you. Does the MC have a doctor associated with it? If so, I would see if he and the eye doctor can work together. Maybe the eye doctor could check on her every so often and if he feels she has a problem then transport her. My Opthamologist has Optometrists in his office who do the everyday care but if serious u see the Opthamologist.
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I really do this stuff about wet macula eye problems. I'm surprised that there is no response about my post.
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Igloocar Feb 17, 2024
Margaret, as far as I can understand, we don't know the nature of the vision problems that the OP's mother is having. That's what the exam would help to determine. No need yet to postulate macular degeneration or glaucoma if she can go to the ophthalmologist.
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Is your mom seeing a Dr. to treat her delusions? There are meds to tone down this challenge and it would make her more comfortable. To the question at hand I always take my father to his Dr. appointments for the same reason, wants to go "back home" 1800 miles away with no money or CC, and needs a walker. If you cannot go with her, do you have a friend or family to go with her. Another option would be to get a church volunteer or hire a caregiver or companion to go with her. My pet sitter took my father to an emergency appointment when I was traveling for work.

Best wishes
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One of the hardest things is placing a loved one in a facility to keep them safe and even harder is admitting they have issues . Mine is 69 with a post tbi that has now due to moderate brain tissue loss has end stage Alzheimer’s . After a case of Covid it has gotten worse and he on his “journey” … to make things easier for him we use the doctors that cover the facility and make rounds. Our eye dr told me that he doesn’t need to see her because he can’t tell her accurately tell her what he sees but we do make sure he wears his glasses because of the prism in the lens for double vision. Likewise I talked to the dentist and other than brushing and special fluoride toothpaste not much to do unless infection. They do have traveling dentist that can come to the facility if needed but cooperation may not be easy with patient. As a healthcare professional I see the importance of treatments as needed BUT as the family member I also know that we feel guilty if we don’t continue with doing all we can. What ever spin we put on a diagnosis the decline can not be stopped and eventually our loved one will pass. The Book Finding Grace in the Face of Dementia is one every family should read. The hardest decision for me was the DNR , admitting that nothing could be done to change the situation and all of his doctors did not sugar coat what’s going on. All those with dementia symptom do have memory issues whether we want to admit it or not . I think his cardiologist put it best… is this the life he wanted.. no . Can anything stop or reverse it.. No. if he “coded” did I want them to try everything they can knowing nothing at that point will change things .. no. He told me at that point I would have only 5 min to decide what to do or all stops would be pulled and it’s harder after all being done to stop… The point of this is if they require to be where they are let them live out the rest of their lives being comfortable fed and cared for and visit them as you feel the need. I see mine 1-2 times a week and try to take care of me too. That’s important as we are so use to putting our loved one first that we forget to breathe too. Mine doesn’t know me most time and as soon as he gets up to walk around doesn’t remember I’m even there. I’m getting counseling for me too because this is not the life we planned but before it advanced this far we had this discussion and he said he knew he’d be fine but to take care of me…
do what you feel you truly need to do but don’t feel guilty if that is do nothing at all . We are on this journey with them 🙏🏻
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Will she be compliant if you get her in there? If she thinks they are going to say, blind her, she could become hysterical and break the machines in his office. You have no idea how strong someone with delusions can be. I wouldn't do it.
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My kneejerk reaction is to put a tracker on her so that if she does escape, she can be found. Secondly, I would be at the doctors office to me her transport, & I would not leave her side until she is safely back in the transport. I would be armed with any/all paperwork that confirms her disabilities and thereby she could not refuse to return to her care facility. I have to wonder, at this stage in her life & care, why she needs to have her vision evaluated. If she sees well enough to walk around, eat, watch tv, etc I think I'd let simmer. Just my 2 cents worth after having cared for 5 oldsters in my family.
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Igloocar Feb 12, 2024
Her mother wants to be able to see to read! And if she has glaucoma or macular degeneration, she will need treatment to keep her from becoming blind! This is a different level of decision than the decision as to whether to take an elderly person with dementia to have her teeth cleaned every 3 months!
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Hire an ambulette service for transport back and forth and an aide to accompany her on the ride and in the exam room . Or if you think the facility transporting her and hiring an aide to go along would be enough that’s an option .

You can meet her at the doctor’s office if you want to be there to hear what the doctor says.
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waytomisery Feb 8, 2024
Btw , have they tried any meds for her anxiety and delusions ?
For what it’s worth , there comes a time also when it’s not worth taking them out from a facility anymore .
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Thank you all! I spoke with her new doctor yesterday and there is hope a new med can reduce her anxiety and paranoia. I do live close and visit twice a week, but it took three of us to get her from the hospital to the care center. We knew if it was just one or two of us she would make a break for it maybe. If her mental symptoms do stabilize I think the center will feel fine taking her to and from eye appointments. She is also starting to see a therapist this month.

Mom complains bitterly that her eyesight is getting much worse. I agree she cannot see far away well. However, she just colored a pretty picture this past week and she stayed in every line and it looked perfect. She also writes me notes that she can see to write, but says she cannot see to read. She stays on the lines and the words are well written.
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waytomisery Feb 8, 2024
She may (also) have trouble understanding what she reads due to dementia . She may think it’s (only ) an eyesight issue .
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JustAnon: Use a medical transport service and alert them of the high flight risk probability.
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Eye doctors can only do thorough eye exams in their offices. Talk to her medical doctor about a medication mom can take 1 hour before her appointment that can last until she gets back to her home - needs to last a couple of hours.
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Geaton777 Feb 12, 2024
This medical adventure is not just about getting the LO there and keeping her from escaping... if the LO cannot accurately answer the many many questions she will be asked by the eye doctor, this will impact the qualify of the procedure and outcome. No one will be able to answer those questions for her... she will be looking into machines and being asked things that only she can see. Many people with dementia struggle to process what their body signals or make accurate judgments. I was with my Mom as she went through a battery of tests for her eye procedures. The outcome will only be as good as the input.
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Update on Mom 2/18/2024: Today Mom said she refuses to leave the facility to see an eye doctor, but has requested to see a new eye doctor at the care home. This is at least a start. She is now refusing her meds so her behavior is much worse and she is still plotting to escape.
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Llamalover47 Feb 19, 2024
JustAnon: Thank you for your update.
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