Rapid decrease in mom’s vision- what now?

[Anonymous]

My mother has macular degeneration and was getting the shots and at this point is nearly blind. They maintain the peripheral vision is my understanding.

I hate to say this but some crisis (or more than one) will occur and then decisions will need to be made. She will fall down. Something. Make sure she has one of those services in place where if they fall in the home they can call out verbally and reach the service. Start looking into options in her area or your area and get a handle on her finance and what she can afford.

You just have to let it play out. It's all you can do.

My mother had the crisis and ended up in a nursing home and is now doing fine.

[Anonymous]

Make sure she wears an Apple watch. The watch will detect a fall and ask if you are OK. If you don't respond or say no, the watch will call 911. It's much better than any other sort of elderly alert thing. It's a watch too, and you can get voice mail and verbal texts (or whatever they're called) right on your wrist. It can literally be a lifesaver. Ask her to wear it 24/7.

When I got older, I'm definitely going to get an Apple watch for this reason alone.

[Anonymous]

Anonymous wrote: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.

I agree with this 100% and I can speak to it personally. I am younger but I have macular degeneration and have dealt with a somewhat rapid decline in vision myself. There are providers who specialize in low vision aids. She can take an Uber/Lyft since driving is out of the question. It may seem really bleak but there are so many tools and options for the visually impaired these days. It’s kind of shocking to face it at first - believe me - but her life is not over nor does she necessarily need to be helped/cared for like someone with a different conditions would be.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

I agree with this 100% and I can speak to it personally. I am younger but I have macular degeneration and have dealt with a somewhat rapid decline in vision myself. There are providers who specialize in low vision aids. She can take an Uber/Lyft since driving is out of the question. It may seem really bleak but there are so many tools and options for the visually impaired these days. It’s kind of shocking to face it at first - believe me - but her life is not over nor does she necessarily need to be helped/cared for like someone with a different conditions would be.

Thank you for this. I’m the OP and I am waiting on my genetic testing results and part of me is very worried about how I will handle macular degeneration should I have it in the future. You give me a lot of hope.

I think the big problem with my mom will be less the loss of vision than the concurrent decline of her physical/mental health in general. The fact that she has been so secretive about this for so long and lied about a bunch of other stuff tells me that there is some mental stuff bubbling up that is making it harder for her to be independent.

[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.

+1

MIL is finally thinking about giving up her car keys in her 90's with severe macular degeneration, OP. She has no business being on the road, and SIL actually took MIL to renew her license a short time ago when the macular degeneration had already increased considerably. I am glad your mom no longer drives, for her sake, and the sake of the young families on the road. I agree that the rest will play out, and she may concede - IF she is not overly stubborn. MIL is overly stubborn, so getting her to do anything is impossible. If your mom has common sense, she will come around before too long.

Will your mom be able to live with/near you, or does she have a promising set up for old age? MIL has a great set up (better than most retired people), due to FIL, so that has worked out. If only she knew how lucky she really was/is. I am sure your mother will be grateful, when changes are needed.

There is ALWAYS one relative sabotaging eldercare. Always. It was my SIL, too.

[Anonymous]

The Apple Watch is a great suggestion and I would also get her something like a nest or Google home that will respond to voice commands. She can even use that to listen to podcasts and audiobooks. Actually I would get the FaceTime thing that allows you to see into her home.
There are definitely services that will come by to help her — her doctor should be able to give referral. If she is Catholic the church will send someone to visit with Eucharist — my mom used to do that and it was a lot of chatting and praying with people that couldn’t get out much. Other religions might have something similar. Even something like meals on wheels would get someone in to the house.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

I agree with this 100% and I can speak to it personally. I am younger but I have macular degeneration and have dealt with a somewhat rapid decline in vision myself. There are providers who specialize in low vision aids. She can take an Uber/Lyft since driving is out of the question. It may seem really bleak but there are so many tools and options for the visually impaired these days. It’s kind of shocking to face it at first - believe me - but her life is not over nor does she necessarily need to be helped/cared for like someone with a different conditions would be.

Thank you for this. I’m the OP and I am waiting on my genetic testing results and part of me is very worried about how I will handle macular degeneration should I have it in the future. You give me a lot of hope.

I think the big problem with my mom will be less the loss of vision than the concurrent decline of her physical/mental health in general. The fact that she has been so secretive about this for so long and lied about a bunch of other stuff tells me that there is some mental stuff bubbling up that is making it harder for her to be independent.

I’m the PP and I have macular degeneration that is hereditary but not age-related. For me, it started in my late 30s and declined pretty rapidly from there, so it’s a bit different from your mom because cognitively I am still 100% there. For me, the biggest loss of my independence is that I’m limited in driving. I rely heavily on my spouse and Uber/Lyft to get around. Otherwise, like I said, the accessibility tools are great and your mom should look into getting bigger screens/monitors and using the settings that invert colors. It helps a ton. I also have an Apple Watch and that is a great tool like another poster mentioned. I would maybe also get her an iPad if she doesn’t already have one. I

Getting the genetic testing and being aware of changes in your vision is really smart. If I can give you any advice - wear sunglasses religiously outdoors and do not smoke. Those two things are huge for preserving your vision.

Wrt your mom’s secrecy, on the vision loss alone j can somewhat understand. It’s almost embarrassing (if that makes sense) to admit that you can’t see. So much of the world is visual. I do almost feel like a little kid sometimes having to ask for assistance to read menus and the like, but I think once she can adapt to the new normal and actually accept it she may come around. It’s basically a grieving process for the life you once had. But again, I think she can live quite independently if she can use the options at her disposal to make daily life easier.

I wish you all the best!

[Anonymous]

Anonymous wrote:

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.

OP here. Yes, I’m terrified about falls on ice/snow especially because she has a long pattern of downplaying mishaps at home since my dad died 15 years ago. I usually only find out the truth when she’s been discharged from her latest PT cycle. I’ve tried over the years to put together an actual plan beyond medical POA and a living will and some other legal stuff, but my mom insists that the social worker calling from the ER is a perfectly good plan. In fact she even said “when it comes to that point, it’ll be your problem, not mine.” I could cry but I feel emptied out inside.

I am concerned about the budget issue. Real estate here (and presumably assisted living) are 3x the cost of her area. I have several tours of local places by me schedule for January. It’s all made more complicated because my mom lived in an apartment possibly for 2 years and 60 years ago and insists she won’t live anywhere with shared walls, floors or ceilings and that it just be walkable.

Is an independent living facility with other increased care opportunities a possibility - near where your mother lives? It can be pricey here. (I am the PP who stated MIL has a nice set up because of FIL). In this area, the real estate prices drive the prices of the independent living units.

[Anonymous]

You could be describing my mom. She eventually connected with a vision support organization (Helen Keller) where she lived - they send a "vision consultant" who sits with the client, learns about their lifestyle, and shares pointers and great AL devices. Mom resisted HUGELY me taking over her paperwork/bills, but finally relented because she just couldn't manage. She allowed me to do PeaPod shopping for her; she used the town senior/disabled transportation service, as well as one provided by the church. When Covid hit, and local people were reluctant to go to visit her, as they didn't want to possibly get her sick, she got hurt several times at home, and then I had to have the "come to Jesus talk" with her. She moved into AL near us, as there was just no way she - or I- could find homecare options for her.

It was a constant battle, and she was resentful and reluctant to lose her independence, and sometimes really mean to me, even though I tried not to push, and let her lead as much as possible.

It sucked and it was hard to manage balance between worry over mom, work, and taking care of my own child.

Great resources I found while she was still in her own home: church outreach (they had a meal delivery service as well as people who would drive to doctors appointments); the assisted living aid company MaxiAids (bump dots & velcro were lifesavers when it came to marking buttons on the microwave and helping with switches, etc.); the doctor's office (they were often the Voice of Reason, as the doctors were always listened to); sharing stories about a friend's mom, who experienced... (It was easier bringing up topics with mom that way & she was more willing to listen.).

I would say that the one wish I had was that mom had been willing to move sooner, as she would have been able to use her remaining sight to get to know the new place better, rather than after she lost most of it.