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helpmeLord Asked December 2015

Is there anyone else caregiving for someone with macular degeneration?

I believe she is losing her hearing and suffering memory loss, way more than you would expect at 72. I took care if my father for the last 2 years of his cancer, but whatever mom is going through, she has turned it on me. I was just wonderng if someone might help me understand it better.

EXPERT Carol Bradley Bursack, CDSGF Dec 2015
Here's an article about helping people live with vision problems. That's obviously not the only issue here but it may give your some ideas:
https://www.agingcare.com/articles/living-with-vision-problems-177792.htm

Other issues should be checked out, too. A complete checkup to rule out a UTI or other infection (gums, etc.), a hearing check, and of course a visit to a neurologist if needed.

Good luck,
Carol

Jnelson Dec 2015
My 96 year old mother has suffered from macular degeneration and other eye problems for years. She's almost blind now and has dementia. I believe the eye problems have exacerbated the dementia because not seeing or being as mobile cuts down on the stimulus we all need to stay involved. Now, instead of reading, bird watching, TV, cooking, etc. she is dependent on others. She isn't even sure whether someone is talking to her unless they are quite close or say her name. She is now in an assisted living facility and pretty well-adjusted. She comes to my house for holidays and many weekends. She loves music and short stories on tape. She still loves good food. In good weather she loves sitting on the deck, she enjoys short rides in the car... For a long time she manipulated "Tangles" (look on Amazon) but has lost interest now.

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BarbBrooklyn Dec 2015
It seems that the problem is that your mom has become " mean and hateful" meaning ABUSIVE to you. Do you think this has something to do with the macular degeneration ? I would get a UTI ruled out and then take her to a geriatric psychiatrist to see about her mental health, her mood and her agitation.

debdaughter Dec 2015
wintersun, I'm intrigued by your dad having laser surgery for his AMD? it gave him back his sight? could you tell more? thanks

getnstrong Dec 2015
My mother also has AMD and at 94 is nearly blind. Complicated by hearing loss, which is getting worse, this condition has contributed to dementia which our MD says is related to her vision loss. When she began having distorted vision, she insisted that people were changing things in and around her apartment. She has created a complex delusion in which she swears a relative(who lives thosands of miles away) is sneaking into her apartment and hiding things or taking things. I looked it up on the internet, and it stated that people do this because they can't cope with the reality that it is THEM doing the hiding (or misplacing). This has led to all kinds of issues in her ALF, as she swears the maintenance man has "changed" her thermostat, the controls on the elevator, etc. Latest thing is that someone came in and took a favorite pillow, and switched it with a lesser pillow. It is the same pillow she has had for years, but became enraged and aggressive when anyone tried to tell her that, so we have found it is just best to agree with her and say what a shame it is that someone would do that.
I am hoping there will be progress in treating this, as I also have both AMD and Glaucoma, and see the writing on the wall.

freqflyer Dec 2015
I just did a quick research on that laser surgery and the article said it is used for leaking blood vessels in the eye, depending on where said blood vessels are located when the patient has wet macular degeneration. The article said out of 100 patients who used the laser, it was only successful on 15 patients.

ramiller Dec 2015
debdaughter, you mentioned you thought moms confusion may be more related to sight tgan dementia. Thats interesting because i have felt the same way with my mom. My mom has sever MD and bad hearing loss. The lack of sensory stimulation from sight and sound I believe had lead to her being more confused. She only picks up parts of conversations and cannot see well enough to fill in the gaps. I truly believe there is a link connecting it all.

lindaz Dec 2015
sorry...gives me migraines) but he was adament he would never use them and I should just get used to it! Lindaz

Dad_Was_Robbed Dec 2015
I had an elderly friend with macular degeneration among some other problems. He was definitely not safe to drive anymore, nor was he safe with a power chair or mobility scooter. Several times he was almost hit by a car on them, and he completely totaled his apartment with those items. It got so bad that he started having near misses with people. Dealing with someone who's going blind it's definitely not easy, especially when they are a danger to not only themselves but others. This is why they should never be given access to any power chair or mobility scooter. I actually saw the dangerous combination firsthand, and please believe me when I say that blindness and machinery just doesn't mix. I'm not the only one around here who ever dealt with the situation, several other people who knew the same person also dealt with this.
There are other areas and with my friend did not do well because of the macular degeneration. So he would try stuff such as cooking, he was really not safe around the stove since it was a safety risk in his particular situation. This is partly why he had home health care to come in and cook for him. That way, there would be no nasty accidents from burns and stuff. There are just some things that people with macular degeneration just should not be doing when their sight is no longer what it should be. In fact, I really wouldn't be a bit surprised if there have already been people who were very seriously hurt or even killed because they were doing things they should not have been doing and should have had help with. I also wouldn't be a bit surprised if my friend may have actually hit someone with his car before he was declared unfit to drive. Again, dealing with someone who's going blind is definitely not easy. There comes a time when they are a danger to themselves and others if given the wrong tools.

debdaughter Dec 2015
Ruth, maybe I didn't say it quite correctly; not sure mom so much had confusion as she was accused of having; what I did actually talk about in relation to her vision was her hallucinations, which of course she was going to definitely be accused of having dementia, for sure, but I'd read about something called Charles Bonnet's syndrome of people with macular degeneration but I just could never find anybody else who'd heard of it, so it was just somewhat dismissed; now, having said that, for all that, she not only "tried" still cooking but she was pretty much expected to still cook, at least in as much as she couldn't get by with them eating TV dinners; I really wish I had known about the home care we got later for dad when she was still around and that we could have gotten it then for her as well but I didn't; never dreamed it could be gotten; thankfully though she never got burned or anything, of course, it is true that maybe why she didn't is because she would go off and leave it then forget she'd put something on to cook so maybe there was more going on than her vision, something that also led to the dementia talk, and maybe there was in addition to the vision issues; now the other problem is that while we were attempting to deal with mom's vision issues it turned out that dad's were getting worse and turned out that he did hit someone with his car way before he was declared unfit to drive, just that his insurance company told him if it happened again they would cancel his insurance so I guess it's a good thing that her eye doctor in that next town dad was driving her to where it happened told her there was nothing else that could be done for her, so they could quit going over there. Of course that somewhat's what ended up killing her.

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