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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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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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I would go with her or avoid outside appointments unless absolutely needed. In old age many appointments are not “needed”.
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Reply to Sadinroanokeva
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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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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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Reply to funkygrandma59
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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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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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Reply to Geaton777
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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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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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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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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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