Advice for dealing with mom's vision loss?

shamboJune 24, 2007

My mom is 92 years old. About four years ago, according to her ophthalmologist, she had a stroke in her left optic nerve. That, coupled with her pre-existing macular degeneration, left her without much vision in her left eye. Then about two years ago, she developed wet macular degeneration in her right eye. She was immediately refered to a retinal specialist and has been seeing him regularly ever since. For a while, her right eye was stable, but about a year ago, she started the bleeding again. She's had a couple of shots that have stopped the bleeding and lessened the swelling. However, her vision has worsened.

Since she was diagnosed with the wet macular degeneration, I've done my best to help her. I've bought her a special, high-powered adjustable reading lamp & an adjustable reading table. I've gotten her an assortment of different sized & shaped magnifiers. I've also gotten her several 6X magnification reading glasses. I've ordered several large print magazines for her to read. I type up important information for her using 36 point font.

I don't know what else to do for her. Yesterday I called her and she complained about how she can't see anything anymore or even read the paper any more. However, every time I go over to her apartment, I see articles, coupons, & recipes that she has clipped from the newspaper & magazines. How does she do this if she can't see or read anything at all? She said she wished she could find a doctor who could help her. But I honestly think her specialist is giving her the best care possible.

She lives in an assisted living facility with lots of help available. She doesn't try to watch TV any longer, doesn't listen to the radio, doesn't try to listen to the sermon CDs her church sends her weekly. I'm not sure if those things would even make a difference because she falls asleep all the time now, even in the middle of conversations with me or my family.

She doesn't have the mental capacity any longer to handle any kind of technology that could help her. She is barley able to use her microwave & answering machine; I've had to label the buttons with different colored Sharpie pens. She no longer can figure out how to use her CD player.

Also, she isn't able to describe what's happening with her vision either, and she gets confused easily. Yesterday on the phone, she connected wanting to find another eye doctor with also wanting help with telemarketer phone calls.

She's got an appointment with her specialist this week. I'll bring up her complaints, but I'm afraid there isn't much that can be done. Wet macular degeneration is almost impossible to improve. Any ideas on how I can handle this situation? Thanks for your help.

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Something more than poor vision is going on. She's slipping in her cognitive functions, but I can only guess a few of the many potential reasons why. Sometimes a UTI can cause it, sometimes other factors. I'd have her in to see her internist.

My mother started slipping like this --- no interest in anything --- in the last year of her life. I couldn't seem to think of anything that would give her any pleasure at all. Mother was 95 at that time.

If you get her into seeing the specialist and an internist, there is not much more you can do. You've already been doing a wonderful job. Sometimes, making another person enjoy life is simply beyond our ability.

Hugs to you.

    Bookmark   June 24, 2007 at 4:21PM
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She is also probably somewhat depressed over her eyesight. That could affect her general well-being. It's not likely that anything is really going to help her much. Her time is running out. But as Fairegold suggested, get a good check up, there may be something like UTI that could be helped.

    Bookmark   June 24, 2007 at 5:51PM
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Thanks for your suggestions. She's due for a doctor appointment next month, so I'll bring up some of my concerns.

I saw her today, and she expressed again her desire to find a doctor who could help her more and tell her that she isn't going blind. It was hard for me to be blunt, but I told her that no doctor could guarantee her continued eyesight. And I told her that her doctor was using the newest treatments available.

I reminded her that she if she put her magazines & newspaper on the reading table,it would be easier to position her magnifiers. Right now she uses it for holding plants & snacks.

We discussed the TV and moving it closer to her couch. I tried that once, but she wanted the couch back against the wall. Then she complained about how much work was involved in using the remote, even though she's had the same TV & remote for ten years. I told her that there are large button remotes available.

Part of me wants to buy a new, clearer TV for her; get a large button remote; get a new TV stand to put just a few feet from the couch; and put her reading table back, next to her chair. The other part of me doesn't want to do anything because, in the past, she's never taken advantage of anything I've gotten for her or done for her. I'm convinced it would all be an exercise in futility.

    Bookmark   June 25, 2007 at 7:37PM
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This is so hard for you both! I don't have any suggestions other that what you've already done. When you see the dr(s) mention her going to sleep in the middle of conversations. My mom is recovering from severe pnuemonia, & the home health nurse said she sleeps so much as her body's way of continued healing. She probably sleeps 19 hrs of the day & maybe more. But it sounds like your mom's sleep problem is entirely different. Meds? Mini-strokes? These could be causing the confusion, too (unable to use familiar remote for example). Sure hope he/she can help! It's not easy, I know.

    Bookmark   June 26, 2007 at 12:42PM
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Sounds to me as if you've got two different things going on. The vision thing plus the mental thing. In terms of behavior, they all get mixed up.

Macular degeneration can be really interesting. The joke around our house is that mom can't see an elephant in the kitchen but she can see a molecule soiling her floor. The macula is in the middle. Areas of peripheral -- "averted vision", some call it -- can remain acute. As blind as she is, mom has learned to use the technique with my telescopes to see various objects quite well. She does have to work at it, however, and the effort is really annoying for her. (In her favor, she does WANT to see and is willing to work at it.) This, while she can't read books or newspapers or see the dial-indicators on the stove. It sounds to me as if your mom may be in the earlier stages of learning what to do with her remaining vision. It's quite annoying to her, I'm sure, because she probably well-remembers what it was like to see clearly at all times -- which wasn't all that long ago. MD isn't like total blindness. Thing's don't go blank, they just get harder and harder to distinguish. And learning to use the peripheral vision can be difficult and annoying for many.

It's a time of life for "adjustments". Hope yours may go more smoothly in the future. I know its rough.

    Bookmark   June 26, 2007 at 8:10PM
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My mom had her latest appointment with the eye specialist this last Thursday. She had some leakage in her right eye, so he gave her another injection. However, the combination of the various drops, the numbing agent, the exams, the pictures, the injection, etc. traumatized her to the point that she now says she can't see at all. In fact, she had one of her aides call me yesterday and she was hysterical. My husband and I went over to her assisted living apartment and spent over an hour with her just trying to calm her down. She was convinced that the doctor burned her eyes and she was totally blind now. She wanted me to find another doctor for her.

The last time she had the injection, she complained for a week about the burning from the drops given to dilate her eyes. And she complained about seeing a "bug" in her vision all the time. Eventually the burning went away and so did the "bug." But I think that her ability to recover from medical procedures of any kind has diminished even more in the last few months. I'm going to call her eye doctor today and try to get a follow up appointment.

Her vision may normalize (normal for wet macular degeneration) in the next week as her eye recuperates from the trauma of the doctor appointment. But her extreme reaction makes me hesitant to ever agree to another injection.

I'll see what the doctor says and keep you posted.

    Bookmark   July 2, 2007 at 10:42AM
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Oh, the poor dear! And how hard it is on you and your DH.

Her extreme reaction is a hint that her capacity to deal with stress/change/problems is at an all-time low. And she may not improve on this score, either. She might recover, but she's probably in a state of real despair, and for most of us, just the very lack of control in our lives is enough to drive us to the brink. For your sake, I hope that she does recover. But.... there's always the chance that she may not.

How about talking to the doctor and stating that your mother is reacting in an extreme fashion, and would another doctor perhaps be better for her, or better for her mental state and not for her vision? She's already got so much resistance to this particular doctor, you're pushing it to continue taking her there. At this point, I'd take a doctor with lesser skills and a great bedside manner, know what I mean?

You are an angel to take such good care of her. It's hard on you, so I hope that you are taking care if yourself in the midst of all this.

    Bookmark   July 3, 2007 at 12:10PM
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Fairegold, you hit the nail on the head. Her ability to deal with any kind of problem is so low now as to be non-existent. This had been happening gradually, but it really accelerated after she broke her hip last year and had to have surgery followed by a month-long stay in a convalescent hospital.

I remember you once saying that dealing with an elderly loved one is mainly going from one crisis to the next, some of them real & some of them not. Settling fear & soothing them is almost as important, maybe more important, than dealing with physical issues. I understand what you're saying about finding another doctor with a better bedside manner.

When my husband & I went to calm my mother down, I put some moisturizing drops in her eyes. Even though both the doctor & I have told her numerous times to use the drops, especially after the injections, she never has bothered. But, apparently, they really helped her. When I called the next day to tell her I had made an emergency appointment for her, she told me she felt 100% better; her eyes didn't hurt anymore. I had asked her over & over the night before about pain & irritation in her eyes, but she assured me that there was no pain only vision loss. And, of course, once the irritation was gone, her vision seemed to improve too (to her way of thinking).

So this crisis has passed, but I know there's another one just lurking around the corner. Her tolerance for pain has diminished so much that I don't think another injection, no matter how helpful it may be, is an option any longer.

Thanks for your encouragement & advice. I'll be back when the next crisis, real or imagined, happens.


    Bookmark   July 3, 2007 at 1:37PM
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Fairegold has some good advice there. At her age, there is little chance that anyone can improve her vision much, if any. Someone with a great bedside manner might help her adjust to it better, even if he wasn't an eye doctor. I'd even opt for someone that gave her dummy pills if it helped her feel better about it.

I know you feel so helpless. It seems as if everything you try to do makes her feel worse about it.
Take care of yourself!

    Bookmark   July 3, 2007 at 1:38PM
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