Is continued treatment for Macular Degeneration important for my mother who is under the care of Hospice and has dementia?

MD runs on both sides of my family. All I can do is relate that when the elders in my family totally lost their sight, they lost their will to live and declined rapidly. It was for them, the final nail in the coffin, they just gave up.

Sending support your way!

My MIL was same age as your mother. She had injections for probably 15 years despite having pain for days after a shot. She really fought to save her vision. But as her dementia progressed, it became really difficult to get her to the doctor once a month for this. She had stopped reading due to dementia, and really could no longer consent. FIL stopped driving and also had dementia so I started going to doctor with them. She had been stable and had not had a shot in 18 months so it was just monthly exams. When she moved to memory care, I just stopped taking her. They don’t go bling with AMD. They lose the center of their field of vision. She did not read or even watch TV due to dementia. There seems to be a point when the AMD stabilizes. While a bleed could happen at any time according to her doctor, she was at the point that we would not have agreed to any more shots anyway so no point in the exams. I would stop with your mother.

It's hard. In order to decide you will need to get a realistic understanding of how long she may live and weigh that against how quickly her eyes are likely to deteriorate, unless she has an unlucky bleed the loss will likely be gradual. As I picture the way my mother was in her final years I don't think I would opt for having the injections, she slept most of the time and often kept her eyes closed even when she was awake. At that point I'm not sure that better hearing and vision would have really made any difference to her QOL.

I was in the same boat in October with my father. His ophthalmologist was over an hour away and the trips were getting harder and harder for him, sometimes taking several days to recover physically and mentally from being taken out of his al and having to be in the car and then wait in the waiting room 2-4 hours. After much anguish over this, I couldn’t bear the thought of dad being confused AND blind, I called his optometrist who had treated dad for many years. ( The ophthalmologist couldn’t find time to speak with me.)

Since reading is no longer an option with his dementia, Dads optometrist suggested that I remain watchful at meals to see if dad could recognize the foods he was eating and if he could see where he was going in his walker. He explained that with dads case, he wouldn’t go completely dark but would have foggy spots. this advice has been so helpful. I have not taken dad back for another shot and he seems to be seeing what he needs to see. Since every case is different, please reach out to your moms eye care doc to see what he/she suggests.

How much discomfort does it cause for her to continue? That is what I always ask myself about my 95 yr old dad’s issues.

As long as she's ambulatory and cooperative, why not continue treating her eyes. Don't you think going blind would cause problems? I took my mom to the dentist as long as I could, and got her eyes checked yearly--even with end stage Alzheimer's.

Is she in pain if she does not get the injections?
Is she is pain when she gets the injection?
Is it safe and easy to transport her to the doctor to get the injection?
Is she compliant at the doctors office or is it a struggle to get her to cooperate?

Is this for both eyes? If not how is the vision in her other eye? Could she manage as she is now with reduced vision or vision in 1 eye?

I think the answers to these questions might make answering your question easier.
She may live another year even on Hospice will she and you be able to manage with the loss of vision in that eye (or both if it is effecting both eyes)
If getting the injections improve or stabilize the quality of her life I would continue, if they don't I would discontinue. But given my points above if it is no longer safe to transport her or if she is not compliant I would discontinue. Getting to the pain issue, pain can be managed either way you decide to go.

Grandma 1954 has some very good questions to help a decision. As someone who has lost eyesight at one time or another and had surgery to restore it, I can attest that it can be terrifying to lose one of your senses. It depends on how much eye sight will be lost and if pain is involved or difficulty in transport. I would use these questions as a guide.

I would ask her Dr if not taking any more shots for a year decline your mom's eyesight so much she would be blind. If not then stop the Injections.

My Father is 95 and several years ago he had the series of injections once a month.
I believe he had a total of 10.
Anyway, after that he didnt go back and he can see enough to tell who you are and watch TV and even tell if the light is red or green.

Time for some tough talks with your mom's eye doctor. Since she has had a stroke, her vision should be tested to see if it has been impacted. If her vison is unchanged, her usual treatment would preserve the vision she has. If her vision has worsened, you need to know from the doctor what changes should be made for her eye care.

There are many great recommendations in this thread. I would also add that discussing this with the Hospice Care team may be very beneficial. If they are involved in your Mom’s daily care, they will be able to weigh in on how she does day-by-day and whether continued shots will help her in the scheme of things.

As others said, it's a tough decision. You'll have to base it on a number of questions and her condition/prognosis.

Our mother (now 96) has been getting these shots to preserve as much eyesight as possible for a long time. She cut a trip to FL short many years ago, knowing something was wrong. Unfortunately the ophthalmologist who did examine her when she got back missed the problem, and she lost some sight in that eye, even though she requested another exam right away. She's been going every 4 months for retest and treatment of the other eye. Since starting dementia, because her hearing is SO bad, I plan to continue treatments to preserve as much eyesight as possible, so we are continuing treatments. If she can't really hear and loses her sight, what's left?

It's unfortunate that the move to MC closer to me resulted in a long drive to the doc's, but her only remaining activity is reading - newspapers, magazines and in particular, her favorite hobby is checking all the sales flyers in the Sunday paper. She was doing this when living alone and continues now. While she has regressed in time (40+ years) and more recently has a fear of falling so she relies on a wheelchair pushed by aides, and repeats herself all the time, she's still somewhat in the here and now, so the plan is to continue treatment.

If she were to have a stroke, I think the decision would have to fall on those questions:

Does she still read?
If not, what can she still see?
If she can still see, is it enough for her?
Can she cope with the trip to the doctor's office?
Can she get through all the testing done?
Can she tolerate the shots?
Consult with the doc might help too. They can sum up what they feel is/was her current ability and what might occur if treatments stop. The worst case seems to be some loss of central vision. Mom continued driving even after loss of full vision in that eye (we had to stop the driving when dementia came on board.)

One of the docs treating mom (was only our 1st or 2nd visit with him) questioned if we really felt it should continue! Given what I said above, I said yes. That was several years ago. He asked this because I related her hearing loss and dementia, but that shouldn't be the deciding factor - dementia has MANY levels and some can still function, albeit at a lower level, for a long time! This is the problem with many docs, PCPs and others - if they don't have experience with dementia, esp first hand with a relative of their own, they haven't got a clue! Even experience with one person isn't enough, as each person has their own path to follow!

For others regarding pain - I know mom seems to feel pain when they inject, and sometimes the next day (not always), so I generally take Extra Strength Tylenol with us and have her take it there, to try to ward off any pain afterwards. Generally she is fine the next day. Once or twice she complained of spots, but those are common and go away in a short time. I was unsure about pain caused by MD if not treated. I didn't think pain was involved, like say glaucoma, so I looked it up:

"Pain is not typically a symptom of macular degeneration. Most commonly people experience blurry or distorted central vision. ... No, age-related macular degeneration, or AMD, is a painless disease associated with aging and vision problems."

So, OP's mom should not need pain meds for this. It all comes down to how well she can still/might continue to see, or if she even needs to see. No idea how badly the stroke has impacted her. Consider her abilities (including whether she could cope with the testing/treatments), what she might like to do (reading, watching TV), what the doc says about current and future (pro/con). I do believe you can continue current treatments when going to hospice, as they are "maintenance". You'd only have to suspend hospice if something new (more serious than UTI or flu shots) came up that you want treated - they can advise you about that.

If she can still be still when given the injection in the eye, I would say yes. My Mom had to be sedated to even have a tooth pulled because she was crying “where am I” and confused. So yes, I would continue but ONLY if she can be still in the chair. Talk with her doctor regardless.

I would say yes if it was my mother and they were able to do the injections. It's sad enough to have dementia, but to lose ability to see would be more confusing than ever.

Since she's on hospice, I would lean towards not continuing.

Continue with the eye injections, but make sure that your mother is NOT injected too many times into her eyes. My mother's retinologist caused her eyes to scar badly from too many injections.

While looking for something else regarding MD, I found this:

"Macular degeneration only affects the macula. So, your peripheral vision will remain intact. Meaning, you will not go completely blind, but if your macular degeneration gets acutely worse, you will fall under the 'legally blind' category."

I would think this would make reading and TV difficult, but not impossible. So, it would all come down to will she tolerate the testing and treatment and will it help at all (does she still actively read and/or watch TV?)

I remember arguing with one brother (the other was pretty much in the same camp) about being legally blind. Basically mom's vision was not correctable in the "bad" eye to better than 20/200, so she was LEGALLY blind in that one eye. Their interpretation of the term was that she WAS blind. BTW, the IRS/legal definition also doesn't allow you to claim blindness if only one eye is affected! While trying to explain this to him on the phone and driving, at night, I said hey, my "bad" eye is 20/60 (about the same as mom's "good" eye at the time), so let me take the glasses off and close my good eye - HEY, look, I'm still driving, I can still see and I haven't hit anything! I made my point to him.

My mom had that problem for many year, and the doctor gives to her was Icap vitamin she was check every year the retina. Thank God she never got blink even though she was diabetic.

If your mother still engages in activities that require her vision (watching tv, reading), or if her having more impaired vision impacts her ability to get optimal care, but the treatments are not painful or distressing to her, and she can afford the treatments, I'd continue. Also if her other senses, like hearing, are declined to the point of being a problem then maybe her vision becomes more useful, and I would continue treatment. But if she's in a very inactive state and doesn't know who you are, etc. I would stop treating it.

disgusted: My late mother's retina specialist was a criminally minded doctor. True. He funneled $800,000.00 into a faux fund and he was caught. Went to Federal prison. So he was racking up eye injections.

Talk with your doctor about it or get a second opinion? In late stage dementia, the doctor said my father's vision hadn't changed but his brain's ability to interpret had.

Invisible: I do not know. I do not live in that particular state any longer and my attorney brother did not care to sue him.