Blind and Visually Impaired Community
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Visually Impaired Father, soon to be fully Blind (self.Blind)
submitted by BeefyFartz
This is my first time reaching out to this community. I apologize for using the incorrect terminology and I apologize for not reaching out sooner.
For the past 30 years, my father has had a tumor in his head, wrapped around his optic nerve. He has slowly lost his eyesight over that time, as the tumor grows, is removed, and grows back again. About 15 years ago his vision became impaired enough that he was classified as legally blind and I began driving him to work (we lived in the countryside where not many services are available).
Now, he is retired early on disability. The tumor is nearly inoperable at this point and he may go completely blind in the next few years. He has not taken many, if any, steps to begin living with his impairment. It's like he doesn't want to admit that it is happening. It is already dangerous for him to walk around. He still insists on riding his bike, which he has crashed a couple times. He relies on his family and friends to tell him when to step over curbs and dips. Or he moves slowly and feels with his foot.
He has talked about getting a guide dog. But honestly he doesn't treat dogs well. He would probably feed it beer or something. I have insisted that he start learning to use a cane, not only so that he can gain some independence in his life, but also to relieve some of the burden on my step-mother.
My brother and I have grown up to be very independent people. We want my father to live his best life with all the tools at his disposal. Is this something that he must come to terms with on his own? Or is there some things we can say that will help him along? I get the feeling that he thinks his world is closing in around him and this gives him a lot of existential dread.
Thank you for any advice.
For the past 30 years, my father has had a tumor in his head, wrapped around his optic nerve. He has slowly lost his eyesight over that time, as the tumor grows, is removed, and grows back again. About 15 years ago his vision became impaired enough that he was classified as legally blind and I began driving him to work (we lived in the countryside where not many services are available).
Now, he is retired early on disability. The tumor is nearly inoperable at this point and he may go completely blind in the next few years. He has not taken many, if any, steps to begin living with his impairment. It's like he doesn't want to admit that it is happening. It is already dangerous for him to walk around. He still insists on riding his bike, which he has crashed a couple times. He relies on his family and friends to tell him when to step over curbs and dips. Or he moves slowly and feels with his foot.
He has talked about getting a guide dog. But honestly he doesn't treat dogs well. He would probably feed it beer or something. I have insisted that he start learning to use a cane, not only so that he can gain some independence in his life, but also to relieve some of the burden on my step-mother.
My brother and I have grown up to be very independent people. We want my father to live his best life with all the tools at his disposal. Is this something that he must come to terms with on his own? Or is there some things we can say that will help him along? I get the feeling that he thinks his world is closing in around him and this gives him a lot of existential dread.
Thank you for any advice.
KillerLag 5 points 4y ago
Most schools require basic orientation and mobility skills before even accepting into a guide dog school. If he doesn't currently use a cane, they would likely want him to get training for one.
It sounds like he hasn't accepted his vision loss yet. That often leads to resistance to getting rehabilitation training, because they don't believe they need it. And in some cases, they may only accept training when they get injured (I had a client finally accept training after falling down a set of stairs and breaking bones).
Would he be receptive to getting an assessment? That may help to speak to someone, and they may be able to convince him rehabilitation training is helpful.
It sounds like he hasn't accepted his vision loss yet. That often leads to resistance to getting rehabilitation training, because they don't believe they need it. And in some cases, they may only accept training when they get injured (I had a client finally accept training after falling down a set of stairs and breaking bones).
Would he be receptive to getting an assessment? That may help to speak to someone, and they may be able to convince him rehabilitation training is helpful.
FrankenGretchen 2 points 4y ago
This is hard to hear but it's fundamental to dealing with other people. He is his own person. You can't make him do anything. Until he decides to suck it up and deal with his situation, he's stuck. Anyone he uses to get around being responsible for his own life has made a decision as well. Perhaps it's time for his 'helpful' people to change their decisions, too?
Any VI person choosing to live where services aren't available isn't in touch with reality or can't move for reasons outside their control but I'll be frank there, too. If he's not in a place where he can navigate independently and have access to public transit, a guide dog is pretty much wasted on him. There are waiting lists with students or people with jobs or careers or families who NEED the assistance on them. They're extremely careful about compatibility and handler suitability, too. Sounds like your dad would have a hard time passing that part. These dogs can cost up to 70k for their training/etc. No snap decisions happen in that process.
He's gonna have to really step it up before he gets to guide dog level functionality. All his choice. All his doing. Let go of any thought you have anything to do in this situation unless he's using you to keep from making any crucial decisions for himself.
Suggest to your step mom that she look into a support group for caregivers. It would help you, too.
Suggest an eval for depression for your dad. O/M, OT, a visit from an independent living specialist, an appt. with voc rehab (which would start the rest, actually) would be ideal and are long overdue. Again, he's heard ALL this from experts over the years. Nobody with a recurring progressive condition like his has escaped post op PT/OT or referrals for services.
If nothing else, this is your opportunity to learn what NOT to do if ever you're in this or similar situation. Sometimes that's the most blessing we can wring out of a really bad situation.
Any VI person choosing to live where services aren't available isn't in touch with reality or can't move for reasons outside their control but I'll be frank there, too. If he's not in a place where he can navigate independently and have access to public transit, a guide dog is pretty much wasted on him. There are waiting lists with students or people with jobs or careers or families who NEED the assistance on them. They're extremely careful about compatibility and handler suitability, too. Sounds like your dad would have a hard time passing that part. These dogs can cost up to 70k for their training/etc. No snap decisions happen in that process.
He's gonna have to really step it up before he gets to guide dog level functionality. All his choice. All his doing. Let go of any thought you have anything to do in this situation unless he's using you to keep from making any crucial decisions for himself.
Suggest to your step mom that she look into a support group for caregivers. It would help you, too.
Suggest an eval for depression for your dad. O/M, OT, a visit from an independent living specialist, an appt. with voc rehab (which would start the rest, actually) would be ideal and are long overdue. Again, he's heard ALL this from experts over the years. Nobody with a recurring progressive condition like his has escaped post op PT/OT or referrals for services.
If nothing else, this is your opportunity to learn what NOT to do if ever you're in this or similar situation. Sometimes that's the most blessing we can wring out of a really bad situation.
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