Rapid decrease in mom’s vision- what now?

[Anonymous]

There are services that help people with low vision adjust to their declining condition. Im sure her providers have referred her. Life will look different for her due to this decline. But depending on how she adjusts, she may be able to stay put. If she’s open to discussing, I’d be asking about this so you can ease your mind.

I have a nephew and a SIL who have low vision which continues to decline. Driving is out of the question and they don’t live in a metropolitan area with good public transportation. It’s impressive to watch them learn to navigate their ever changing reality. I also have a colleague who lost his vision gradually over a period of about a decade. He lives in this area. I will say it is much easier for him because of services like metro access. He continued to work long after his vision deteriorated to the point of not being able to drive. My point is that many people remain functional and that might be where you want to focus some energy.

[Anonymous]

Sorry, that’s tough. I agree with the advice to just let it play out. Over time she will realize that you aren’t moving back.

How are her finances? Can she hire help? Can you Contact local resources for the blind in her area for ideas? Many blind people do live alone, and it sounds like she’s not there, yet.

[Anonymous]

Many blind people live alone. There are resources for the hearing impaired.

[Anonymous]

Anonymous wrote:Would she balk at an independent living facility? She also needs OT to help her figure out how to do things without vision.

Maybe not?! I had a check-in call for her today and she asked a random question about an activity near my house and said “maybe I could do that if I lived there.”

The weather is especially bad where she is today and it seems to be nibbling away at her resolve. Unfortunately she refuses OT and other services for low vision because she sees them as for people who have “actual” low vision and not “people like me”. I think she is working through her own long-held prejudices about disabilities, hired help, etc. in real-time and it’s a struggle. Unfortunately stories about people who have low or no vision and are living independently are lost on her because she is trying to keep up a facade of being fully sighted for many, many years while hiding her vision loss from family and friends.

[Anonymous]

This sounds like macular degeneration linked to age (my grandma has this). Anyway, there are shots that might help slow it down…but it might also be too late. In my family, my dad flew out and helped get things set up for her. Good luck.

[Anonymous]

For your own sake, start taking Lutine supplements, get ultra red light therapy for your eyes.

[Anonymous]

1) go tour CCRC in your area. She could possibly be okay in IL with some support. The IL places we toured are built with very thick walls. No sound bled into the other apartments.

2) if you are worried about her safety now, call Adult Protective Services in her area. They will send someone out to assess her safety. Also, get in touch with the Department of Aging in her area. They can tell you what resources are available to her.

3) take a week off now and go out. Start to prepare the house for moving/selling. Whether she stays there until she dies or moved closer to you, you’ll have to do this. So start to declutter. Get a home inspection to see what needs to be done to the house prior to selling. (It was a huge surprise to my Dad when he had to put on a new roof before selling).
Check here for people in your area that can help with downsizing, even if she doesn’t move. If they have the certification, they understand how to work with seniors.

https://www.nasmm.org/find-a-move-manager/

4) Plan for what you Will do if she has a health emergency and can no longer live by herself.

Good luck! Dealing with parents who don’t realize their new limits is very frustrating.

[Anonymous]

I'd start by seeing if you can get a nurse or companion who can come 2-3 a week and take her on errands. This will be more affordable than assisted living safer than lyfts.

[Anonymous]

She does not want to move, even locally to independent or assisted living

Too bad. Sorry Mom, you don't always get what you want.
You have the tough talk. Her Doctor has the tough talk.

[Anonymous]

Anonymous wrote:Many blind people live alone. There are resources for the hearing impaired.

Of course, the resources for the hearing impaired won’t be very helpful for low vision people.

[Anonymous]

Anonymous wrote:This sounds like macular degeneration linked to age (my grandma has this). Anyway, there are shots that might help slow it down…but it might also be too late. In my family, my dad flew out and helped get things set up for her. Good luck.

Yes, is MD and she has had the injections for many years, including some experimental ones when the original ones began to fail. Now none are working and the doctors don’t know if that will always be the case or if there will be a worse state that might plateau with different injections.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This sounds like macular degeneration linked to age (my grandma has this). Anyway, there are shots that might help slow it down…but it might also be too late. In my family, my dad flew out and helped get things set up for her. Good luck.

Yes, is MD and she has had the injections for many years, including some experimental ones when the original ones began to fail. Now none are working and the doctors don’t know if that will always be the case or if there will be a worse state that might plateau with different injections.

Yes, what my grandmother was told was that at some point they don’t work anymore…it stinks. She went from basically being completely independent (she’s lived in the same small town for 30 years), where it was an easy drive to the store, or to see a friend, to blind. All in less than a month. She can’t use her stove anymore because she can’t see the buttons to turn it on. Someone comes 3-4/week to cook/deliver groceries etc. But it’s hard…she says she’d rather die than go to a facility (she’s 95) but her health is otherwise great…and for now she manages like this, but it may not.

[Anonymous]

My dad has macular degeneration and lives alone. It sucks. He just stopped driving in the spring. I’m guessing your mom has the “wet” type if it responded to medication. My dad’s is the “dry” type, so there was nothing to do at all, just…wait for the decline.

For now, he still lives independently in a smallish house. He downsized after my mom died, but is not located neither either me or my sibling (10+ hour drive for both).

His vision is “good” enough that he can function pretty normally. Reading is difficult, but he has a 36” tv monitor as a computer screen. Apple products are particularly good about accessibility and we switched him over to everything apple. He reads on his ipad with a massive font and a magnifier.

He has a network of friends where he lives and they check in on each other every day. He’s able to see well enough to use a city shuttle service (like a reduced cost uber carpool for the elderly) to run errands on his own, and he’s mastered ordering from Amazon Fresh and Instacart.

I was going to eye appointments with my dad until recently and it helped both of us to be able to talk to the doctor and ask questions. I’m grateful he didn’t hide it from me. If you can, I’d schedule an appointment you can either be at in person or do a video call to see what the future likely holds. My dad’s biggest fear was that he would be truly blind and living in darkness, and once several different doctors reassured him that wasn’t going to happen, it was a huge relief. So just knowing what the worst case scenario looks like can be helpful.

I’m rambling here, but I’m in a very similar boat, OP. My heart goes out to you, because it’s a lot – and to have it sprung on you is a real shock.

So far, a move to a facility is not needed for my dad, so I have no advice on that front.

[Anonymous]

Anonymous wrote:My dad has macular degeneration and lives alone. It sucks. He just stopped driving in the spring. I’m guessing your mom has the “wet” type if it responded to medication. My dad’s is the “dry” type, so there was nothing to do at all, just…wait for the decline.

For now, he still lives independently in a smallish house. He downsized after my mom died, but is not located neither either me or my sibling (10+ hour drive for both).

His vision is “good” enough that he can function pretty normally. Reading is difficult, but he has a 36” tv monitor as a computer screen. Apple products are particularly good about accessibility and we switched him over to everything apple. He reads on his ipad with a massive font and a magnifier.

He has a network of friends where he lives and they check in on each other every day. He’s able to see well enough to use a city shuttle service (like a reduced cost uber carpool for the elderly) to run errands on his own, and he’s mastered ordering from Amazon Fresh and Instacart.

I was going to eye appointments with my dad until recently and it helped both of us to be able to talk to the doctor and ask questions. I’m grateful he didn’t hide it from me. If you can, I’d schedule an appointment you can either be at in person or do a video call to see what the future likely holds. My dad’s biggest fear was that he would be truly blind and living in darkness, and once several different doctors reassured him that wasn’t going to happen, it was a huge relief. So just knowing what the worst case scenario looks like can be helpful.

I’m rambling here, but I’m in a very similar boat, OP. My heart goes out to you, because it’s a lot – and to have it sprung on you is a real shock.

So far, a move to a facility is not needed for my dad, so I have no advice on that front.

Thank you, this is validating even if your situation is different- it helps to hear of someone coping well. My mom has not downsized and lives in my childhood house, which is over 100 years old and has a host of ongoing work to be done. She is managing to work, but it’s a lot on top of the rest. There isn’t a shuttle service in her town. She likes meeting various Lyft drivers but is self-conscious about how much she brings home on errands. She is very reluctant to use instacart or any other delivery services and is weird about “people touching her food”, but we managed to get her to do Amazon for paper towels, laundry soap, and other basics. She won’t accept takeout delivery nor someone cooking in her kitchen. I think not having friends and having hobbies that are all based on fine motor skills and eyesight is the worst. She usually spends her time reading, doing calligraphy, doing embroidery, and painting. She can’t do any of those anymore and TV is apparently wobbly and hard to follow visually. Based on some other stuff, I believe that my mom may have some long-undiagnosed auditory processing issues which are the reason she doesn’t enjoy audiobooks or podcasts.

I need to get to her house ASAP to figure out what her everyday life looks like, but I also have a little kid who deserves a normal holiday and a husband who travels 3-4x/month for work and has a new boss as of two days ago. It’s a mess and I’m scared for what I’m facing. My mom won’t provide me with any doctor/medical info and won’t let me accompany her to future appointments if I’m in town. She says it’s her private business.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:And I know you didn’t ask for it, but the reality is that eventually she’ll realize you’re serious and then she will agree to move closer to you. Even in an assisted care place so you ca visit her often.

This. You just have to let things play out. Give her a very boring winter and she may come around. It takes a while for reality to get through wishful thinking.

Thank you. My DH said something similar and I think this is the correct/only approach. She lives in the Upper Midwest and winter will certainly be dull and restrictive.

I would also let it play out but know that chances are there will be a big event (fall or accident being most likely) that will change the circumstances significantly and with little warning. I would start looking at assisted living places near you and go on some tours. Figure out which one is best and fits your Mom's potential budget and what the wait list situation might be. Keep reminding your Mother that you will not be moving and she needs to think about her next steps.

+1 THIS. And, honestly, I'd be trying to insist that she move near you.