My brother doesn't want to go to eye doc for macular degeneration

OK2try

My brother, who lives alone but I care for, has macular degeneration which is getting worse. Before the pandemic, he went to an eye doctor who proposed some kind of treatment which he rejected because it was too invasive. I made an appointment to go back with him this week to find out if there was anything else that might slow the disease's progression. 

Yesterday he asked me to cancel the appointment because he doesn't feel up to it, and still doesn't want an invasive treatment. Instead, he wants to go to his optometrist to get new glasses, because his declining vision is distressing to him. I tried to explain to him that we had just gone to the optometrist 6 months ago, where he did get new glasses but was told there's not much they would do for him because of his macular degeneration.

Of course, he did not understand or like my explanations. All he knows is that he has a lot of trouble seeing, wants new glasses, and doesn't want to go to the doctor that might help him.

I'm unsure whether I should just cancel his appointment or somehow try to trick him into going, and whether to take him to the optometrist, to be told again that new glasses won't help him. There's not much reasoning with him.

Any suggestions out there?

Quilting brings calm

It is my understanding that there are two types  of macular degeneration: wet and dry.   The treatment for wet is a periodic shot in the eyeball that helps dry up the fluid involved.  There is no treatment for dry ( although one may be coming if FDA approves it).  They also recommend  AREDS2 eye vitamins, such as Preservision.  

My spouse has dry macular degeneration.  His left eye is stable( but not 20/20 with glasses)  with it, his right eye is 20/200 or worse as a result of it.   He has however had shots in his eyeball for diabetic retinopathy in the past.  He said they do not hurt.  It’s the uncomfortable feeling and anxiety of someone being that close to your eye that the problem. 

I’ve been in the room for those and it’s similar to when the eye doctor does the pen pressure reading and just as quick.  Then you are done until the next time. 

Your best argument is to tell him that he will be unable to live alone soon if he doesn’t go get the treatments, and that it will be too late at that time to prevent it getting worse, 

harshedbuzz

OK2try-

In looking at your profile, you note that your brother's dementia is moderate-severe and at the time was in a rehab after hospitalization. Is he home now and still living alone? Is he safe to continue to do so? IME, most people need 24/7 supervision- if not care- by the later middle stages. 

Stages of Dementia Dr. Tam Cummings

To your concern about what to do vis a vis his AMD- there are a lot of moving parts to this.

Does he have AMD that has moved into wet macular degeneration? Was the ophthalmologist suggesting injections to preserve vision? There's a lot of AMD in my family- mom and 3 of her sibs (there were 9 kids), all of the still-living blue-eyed cousins except me, plus my late father.

My surviving aunt gets injections which she describes as "not painful, just sort of creepy"- the others are still in the dry version stage. The injections have preserved her vision considerably which has enabled her to live alone at 86 and driving short and familiar distances. I am a back-up POA for her and she has drilled me on the contents of her Advanced Directive/MOLST which states her wish to not be hand-fed but continue with treatment to preserve vision. 

Since it's been at least 2 years since his last exam, it is possible that there has been some progression and vision loss which is a shame as it doesn't sound as if your brother has the executive function and cognition to understand how his choice is impacting him. 

What is your role as caregiver? Are you a weekly drop-by with groceries? Or do you have the legal wherewithal and responsibility for his welfare as his POA for medical decisions? 

I feel like, if he named you POA for his medical decisions than this is strictly your choice to make much as a parent decides whether a kid takes a medication even if it is yucky. Would the pre-dementia version of your brother pass on treatment to preserve some of his vision? 

If he is as progressed in the disease as you say, I wonder if you could get him to the ophthalmologist for treatment using some ruse and a short acting benzo to reduce his anxiety. If you are on the HIPAA forms you could contact the doctor and make arrangements without ramping up his anxiety ahead of time. 

That said, at a certain point, visual processing can be impacted by the progression of the dementia. When my dad got to that point, we stopped the routine 6 month checks with the retinal specialist which were very unpleasant for him. 

For the optometry appointment, I would create a fiblet about why an appointment can't be scheduled until several weeks out- then rinse and repeat.  

HB

jfkoc

I think it would be helpful for you to find out exactly what is wrong, what is the treatment and what would be the future without the treatment.

Dawn0633

My mom has lived with macular for years.  She gets the injections regularly which has helped in the past.  Currently her eye sight has deteriorated and with the added dementia she no longer can stay at my home alone.  I have had to move her to an assistive living place.  Her retina doctor did refer us to a Low Vision Specialist which did help with letting us know how to maximize what she has.  I would continue to try to get him into the Retina Specialist just to at least inform you both on if his eyes can benefit from injections.  If not, try to find a Low Vision Specialist in your area.  We live in Las Vegas but I am sure they have them in other cities as well.

I must say that having the loss of site along with the loss of memory is extremely hard for my mom and me.  She seems to tie them together as 1 thing.  

OK2try

Thanks so much for your detailed reply. 
Now that my brother is back at his own apartment, many of the very alarming cognitive symptoms have vanished, such as his disconnect from reality that led him to think he was living inside a video game. Apparently, they were a product of finding himself in a strange place and perhaps of the inappropriate medications they were giving him. (against my specific instruction, by the way.) I thought that when I moved him back home I would have to hire an aide to make sure he ate his Meals-on-Wheels, and to help with meal preparation. As it happens, he is still capable of microwaving prepared foods, making sandwiches, and preparing a bowl of cereal, which is a good thing since there is a 1-year wait list for home aides that accept the Medicaid pay scale. He doesn't want any help from strangers anyway, and doesn't even like speaking with them.
I do not know which type of macular degeneration he has, as I was not involved in his health care before the pandemic, which is when he last visited the eye specialist. At that time, which was before his dementia was noticeable to anyone, he refused the treatment. He also refused treatment or even follow-up for a developing blood cancer and a growth on his kidney. He has actually been this way his entire life: hostile in general to modern medicine.
I stopped in the optometrist's place, because my brother does know and trust him and I thought I'd get the optometrist to explain to him in no uncertain terms that he must see the specialist if he doesn't want to lose his vision. Alas, I found that the optometry place, which is part of a big chain, no longer employs optometrists in person but does the appointments remotely, with low-wage assistants taking the measurements. Modern medicine!
I did cancel tomorrow's appointment, because I can't see that taking him against his will would do much for the trust he has in me. All I can do is do my best to convince him that if he wants to live independently, he'll have to do it whether he likes it or not. 
He has been  taking the Preservision for several years