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Kittykat59 Asked March 25, 2024

What do I do?

So my mom has been moved to a long term care facility, (nursing home).Shes 95.
so she has later stage dementia, and wet macular degeneration and glaucoma. For years she went to a specialist who would inject her one eye. Last 3 years the injection doesn’t do good and doesn’t do bad.
Here is my dilemma. Because of. Her dementia she thinks her vision improves or deteriorates in a weekly basis because her mind is going.
Should I just leave her be. Taking her stresses her out for two to three days after the appt. She has eye pain after and gets even more depressed. Please help me

MeDolly Mar 25, 2024
My mother is 99, has macular degeneration,, she is getting shots in one of her eyes, not sure this is working. I would leave her be.

Hothouseflower Mar 25, 2024
Your situation sounds a bit like mine. I'd suggest leaving it be. My father is 95. We stopped taking him for his AMD shots because they were no longer working. The shots had worked for a few years but then they no longer kept the condition from worsening.

The risk of his falling when traveling to and from the doctor was just not worth the useless doctor visits. So we stopped going.

He's visually impaired but he is not blind. He's now in a SNF.

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AlvaDeer Mar 25, 2024
I would leave her be. I think it unlikely her site would depreciate a whole lot further, but it is difficult to tell. I think the glaucoma I would still try to treat so long as they would prescribe the medications without exam. I wouldn't do the injections.
There IS risk to them, just so you know, of detached retina and etc. Wet AMD is a serious issue, but often it is doesn't cause blindness. Legal blindness, yes, but often not complete.

I would discuss with MD. At some point I would go palliative care. Not a lot of medications anymore, but just comfort care.

That's me.
I would get ALL THE FACTS online and from the treating docs before making this decision. Wet AMD causes central vision blindness, but the peripheral vision usually remains. Discuss with MD. As to her reported changes, I am with her. At 81 some days I can read out of an eye with serious scaring due to vitreous separation; some days I cannot. The eye doc says this is due to the eye being not nearly as good as the other eye, and the two eyes attempts constantly to adjust to what they see due to differences. Some days it is the BRAIN that isn't adjusting things as well. Go figure.

lealonnie1 Mar 25, 2024
When my mother with advanced dementia lived in Memory Care Assisted Living, I did the absolute least for her in the way of taking her out for medical appointments or procedures. Doing so stressed her out to the gills, which made it a nightmare for both of us. When she ran her eyeglasses over with her wheelchair, I called the Opthamologist to see if he'd make her a new set of glasses based on her last prescription a couple of years prior. He said sure. So that's what I did, and told her the glasses were free, that Medicare paid for them, which wasn't true, because she'd have had a total meltdown had she known the real price. It's called Keeping Them Calm At Any Cost.

As long as your mom's Opthamologist isn't telling you she'll go blind w/o these shots, I'd cancel them and tell her the condition is improving. Then let her live out what's left of her days in peace. To me, that's "doing the right thing" for your mom.

97yroldmom Mar 25, 2024
How often does she have the injections?
I would want to understand the doctors view of what she needs and the repercussions of your choices.

The information you shared gives no upside unless it is that her vision has not declined in the three years. Isn’t that a good thing?

In other words if her distress is a week once or twice a year, it might be worth continuing if it is maintaining her current level of vision.

I know it is draining to do these maintenance type appointments. I know I have to force myself to do what little I do at this stage and have been thinking of hiring someone to do them for me. My caregiver fatigue overcomes my responsibilities.

Our elders can live a long time past what we anticipate and being blind won’t make her die but would decrease her quality of life. I know my 97 yr old enjoys seeing beautiful things like flowers and trees and smiling faces. But I am not in your shoes and no judgment here. Just trying to give an opinion.

Please make sure her depression is being treated. Hugs to you both.
Kittykat59 Mar 25, 2024
Appts are mostly drops in eyes and check ups and they end doing nothing. I he too an aren’t often no and her mobility is bad too. The injections were done a couple times to see if there was improvement and there was none. No decline either. She can see although not well but I don’t think it’s good anymore. I just needed to see if I was totally wrong here. There’s other people wgete she is that have opted to stop
gpumg too and they are happier as they feel
they want quit y life over quantity
everything is just so hard
NeedHelpWithMom Mar 25, 2024
My godmother had advanced Alzheimer’s disease and macular degeneration. She was in a nursing home. She eventually lost all of her eyesight.

I would just let your mom be. It’s hard watching them grow old and have these issues.

Wishing you peace as you continue to be her advocate.

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