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Caregiving for Elderly, Blind Narcissist Father -- At wits end..Help! (self.Blind)
submitted by Trekkie_on_the_Net
My father is mostly blind, and so i am caregiving for him, but that's not a problem, other than trying to find some basic answers on how extremely low vision affects the elderly. But there's more to his story. Any advice anyone can give would be helpful. This is long, and i apologize, but if anyone takes the time to read and reply, i would be very appreciative.
About 2 months ago, i moved in with my 87 year-old blind father in Chicago to help take care of him on nights and weekends, when his caregiver is not present. Prior to that, for the last 4 years, i have spent about 25% of my year in Chicago, visiting him and helping out, before he had a daytime caregiver, when he was a bit more able. His blindness has been a slow process over the past 6-7 years due to glaucoma, retina detachment, etc.
The real problem that is affecting my care for him is that he's a narcissist, which affects how he deals with his loss of vision. If you've never known a narcissist, being around them can be infuriating. They don't often listen to you. When they do, they twist what you say to their advantage, or to make you look bad. They are the most important person, their problems dwarf anything you are suffering, and your own pain, struggles and emotions are irrelevant to them. My father has always been abusive in subtle ways, and occasionally not-so-subtle ways. Never physically violent, but the emotional scars on me, my siblings and my now-deceased mother are all there.
When it comes to his vision, he often gaslights his level of confusion due to his lack of eyesight. I've caught him countless times finding his way easily, as well as doing basic tasks (getting coffee, food, going to the bathroom, showering) all on his own, when he thought no one was around. Once i make my presence known, either on purpose or accidentally (because a board creaks while spying on him), he will freeze in his tracks, and then suddenly say he doesn't know where he is and needs help. This type of behavior has played out for a long time in other ways, long before he had eye problems. I have installed a couple cameras and motion detectors so i can monitor what he's doing. He does not know they are there.
I know many people at his age have some form of dementia, and may experience "sundowning," however, he doesn't sundown. His confusion seems completely random. More often than not, he is very clear throughout the night when no one is around. Or when i go the store, or pretend to walk the dog, but hide and observe him for a few minutes. He's usually the most "confused" during the day when his caregiver and i are both around and active, and he is suddenly at a level of incompetence so extreme, an outsider would think he has severe dementia.
About 5 days ago, i blew up at him, and asked him why he was so good at getting around at night when everyone is asleep, and only seems confused when he has an audience. Well, guess what happened? After weeks of doing great at night, he has suddenly been confused every night (and making a lot of noise) since i called him out. Coincidence?
Beyond that, there is (i think) some genuine confusion, likely due to the normal loss of memory suffered by older people coupled with the eyesight loss, which has gone away very slowly over many years. But when you're the boy that cries wolf, no one wants to believe you when you're actually telling the truth. Yes, i know its probably a call for attention, made worse by the attention and control a narcissist needs, but it makes it really difficult to want to help him when all i want to do is strangle him.
Ever since my mom died in 2017, he has really wanted me to move in with him (giving up my entire life in DC, with no concern for me). I get it. He's lonely, and it may explain his prior gaslighting. But now i'm here. I've moved in. I've given up everything to take care of him. I have tried to warn him that if his confusion is this bad, it is beyond my help, and i will leave, and he will need to go to a nursing home. I've even faked calls to my sister (his POA) to talk about a nursing home, in hopes it would scare him into being honest. Nothing changes.
Still, i do my best to help, but i get to the point when i don't know what's real anymore. Is it real when there is a pair of shoes sitting next to the bed where he sleeps, and he has apparently gotten up, put on one of those shoes, and then made his way down the hall to a closet, grabbed a single shoe from another pair, made his way back to his bedroom, sat down and put that shoe on (both left shoes), and when asked about it, he claims he did it because he can't see? Is that what blind people do? Or is he trying to look pathetic to get my attention?
He blames everything on his eyesight. He will reach for things in the complete opposite direction, or for doorknobs at knee-level. He will be sitting at his desk, in his chair, and say he needs to find the desk, while his arm is resting on it. He recently claimed that he needed to be spoon-fed because his vision is so low, he won't be able to use a spoon or "find the bowl" even if you put it directly in his hand. Mind you, he's in the house that he's lived in for 40 years, and knows where everything is, and his vision has decreased very slowly, over a long period of time.
I tried putting a tie around my eyes so my vision would be ZERO. Lower than his. I did it immediately after i woke up. I managed to go to the bathroom, find my way to the kitchen, make coffee, make a sandwich and more. Sure, it took me a lot longer. I would misjudge distances by a few inches, or even a couple feet sometimes. But i never went completely in the wrong direction. I never reached a foot above my head for a light switch. I always knew whether i was walking on carpet or a hard floor. I knew if i was sitting on a chair or on the bed. These are all things he has claimed he doesn't know because he "can't see." And it's not even consistent.
Through blood tests, CT scans of his brain, and doctor consultations, those doctors claim he doesn't have markers for dementia, and there have been no underlying infections either. And when he does speak to doctors and such, his confusion is mostly gone, so they don't understand why there's confusion. It's almost like my father turns on the disability when it would be beneficial to him. Or, at least, when he thinks it would be beneficial to him.
So, how do i proceed? I know there's no easy answer here, but how do i proceed with someone who can't be honest, and can't seem to even make a decision that benefits him (like avoiding a nursing home)? Are there things i can do to make him more functional with limited vision? Do people with vision loss get bouts of complete disassociation of where they are and what to do? Can that come on randomly for only 5 or 10 minutes? He already has PT and OT, and does fairly well with them, but it all disappears once they are out of the house. Years of frustration are taking a toll on me. Thanks so much to anyone who read all this.
About 2 months ago, i moved in with my 87 year-old blind father in Chicago to help take care of him on nights and weekends, when his caregiver is not present. Prior to that, for the last 4 years, i have spent about 25% of my year in Chicago, visiting him and helping out, before he had a daytime caregiver, when he was a bit more able. His blindness has been a slow process over the past 6-7 years due to glaucoma, retina detachment, etc.
The real problem that is affecting my care for him is that he's a narcissist, which affects how he deals with his loss of vision. If you've never known a narcissist, being around them can be infuriating. They don't often listen to you. When they do, they twist what you say to their advantage, or to make you look bad. They are the most important person, their problems dwarf anything you are suffering, and your own pain, struggles and emotions are irrelevant to them. My father has always been abusive in subtle ways, and occasionally not-so-subtle ways. Never physically violent, but the emotional scars on me, my siblings and my now-deceased mother are all there.
When it comes to his vision, he often gaslights his level of confusion due to his lack of eyesight. I've caught him countless times finding his way easily, as well as doing basic tasks (getting coffee, food, going to the bathroom, showering) all on his own, when he thought no one was around. Once i make my presence known, either on purpose or accidentally (because a board creaks while spying on him), he will freeze in his tracks, and then suddenly say he doesn't know where he is and needs help. This type of behavior has played out for a long time in other ways, long before he had eye problems. I have installed a couple cameras and motion detectors so i can monitor what he's doing. He does not know they are there.
I know many people at his age have some form of dementia, and may experience "sundowning," however, he doesn't sundown. His confusion seems completely random. More often than not, he is very clear throughout the night when no one is around. Or when i go the store, or pretend to walk the dog, but hide and observe him for a few minutes. He's usually the most "confused" during the day when his caregiver and i are both around and active, and he is suddenly at a level of incompetence so extreme, an outsider would think he has severe dementia.
About 5 days ago, i blew up at him, and asked him why he was so good at getting around at night when everyone is asleep, and only seems confused when he has an audience. Well, guess what happened? After weeks of doing great at night, he has suddenly been confused every night (and making a lot of noise) since i called him out. Coincidence?
Beyond that, there is (i think) some genuine confusion, likely due to the normal loss of memory suffered by older people coupled with the eyesight loss, which has gone away very slowly over many years. But when you're the boy that cries wolf, no one wants to believe you when you're actually telling the truth. Yes, i know its probably a call for attention, made worse by the attention and control a narcissist needs, but it makes it really difficult to want to help him when all i want to do is strangle him.
Ever since my mom died in 2017, he has really wanted me to move in with him (giving up my entire life in DC, with no concern for me). I get it. He's lonely, and it may explain his prior gaslighting. But now i'm here. I've moved in. I've given up everything to take care of him. I have tried to warn him that if his confusion is this bad, it is beyond my help, and i will leave, and he will need to go to a nursing home. I've even faked calls to my sister (his POA) to talk about a nursing home, in hopes it would scare him into being honest. Nothing changes.
Still, i do my best to help, but i get to the point when i don't know what's real anymore. Is it real when there is a pair of shoes sitting next to the bed where he sleeps, and he has apparently gotten up, put on one of those shoes, and then made his way down the hall to a closet, grabbed a single shoe from another pair, made his way back to his bedroom, sat down and put that shoe on (both left shoes), and when asked about it, he claims he did it because he can't see? Is that what blind people do? Or is he trying to look pathetic to get my attention?
He blames everything on his eyesight. He will reach for things in the complete opposite direction, or for doorknobs at knee-level. He will be sitting at his desk, in his chair, and say he needs to find the desk, while his arm is resting on it. He recently claimed that he needed to be spoon-fed because his vision is so low, he won't be able to use a spoon or "find the bowl" even if you put it directly in his hand. Mind you, he's in the house that he's lived in for 40 years, and knows where everything is, and his vision has decreased very slowly, over a long period of time.
I tried putting a tie around my eyes so my vision would be ZERO. Lower than his. I did it immediately after i woke up. I managed to go to the bathroom, find my way to the kitchen, make coffee, make a sandwich and more. Sure, it took me a lot longer. I would misjudge distances by a few inches, or even a couple feet sometimes. But i never went completely in the wrong direction. I never reached a foot above my head for a light switch. I always knew whether i was walking on carpet or a hard floor. I knew if i was sitting on a chair or on the bed. These are all things he has claimed he doesn't know because he "can't see." And it's not even consistent.
Through blood tests, CT scans of his brain, and doctor consultations, those doctors claim he doesn't have markers for dementia, and there have been no underlying infections either. And when he does speak to doctors and such, his confusion is mostly gone, so they don't understand why there's confusion. It's almost like my father turns on the disability when it would be beneficial to him. Or, at least, when he thinks it would be beneficial to him.
So, how do i proceed? I know there's no easy answer here, but how do i proceed with someone who can't be honest, and can't seem to even make a decision that benefits him (like avoiding a nursing home)? Are there things i can do to make him more functional with limited vision? Do people with vision loss get bouts of complete disassociation of where they are and what to do? Can that come on randomly for only 5 or 10 minutes? He already has PT and OT, and does fairly well with them, but it all disappears once they are out of the house. Years of frustration are taking a toll on me. Thanks so much to anyone who read all this.
complex-blobfish 3 points 1y ago
the problems you describe are not blind problems. they sound more like confusion (if they are real problems that is) the shoe...no. we know when we are wearing shoes obviously and one shoe is even more obvious because we would be walking slanted.
has he been through any rehabilitation?
his vision fading slowly doesn't really make a difference. going from 100% to 99% vision will not be noticeable. however going from 9% to 8% vision can change your whole world by a lot.
if you are standing somewhere, you can get disorientated, even in your own home, but usually your furniture will be set up in a way that you can feel around to guide you. like if i feel a dining room chair i must be in the dining room sort of thing.
if the doctors say he is not confused then i would take it with a grain of salt, he could still be confused. but from how you have explained this, it is unlikely.
he sounds like an asshole TBH. blind or not.
i have found that some older blind people (usually those who have spent their lives being ableist and thinking disabled people are lesser) get quite angry and bitter after they go blind and don't want to learn how to do things "the blind way". it is not by any means all, just a very small amount of people do and i think he may be one of them. or he is just always has and always will be like this.
i personally would get out. he has a carer and you are not obligated to stay with him.
also if you are looking for lots of opinions on this, you might want to post it elsewhere too because this is a small group and many will pass this post by because of the title. and the way you said "combined with his eyesight, he is also a narc." as this makes it seem that you think him being blind is just as bad as him being a narcissist. which even offended me a little at first ( i think you didn't mean it like that, you are probably just writing angrily and it comes through, but that is how it came across.)
has he been through any rehabilitation?
his vision fading slowly doesn't really make a difference. going from 100% to 99% vision will not be noticeable. however going from 9% to 8% vision can change your whole world by a lot.
if you are standing somewhere, you can get disorientated, even in your own home, but usually your furniture will be set up in a way that you can feel around to guide you. like if i feel a dining room chair i must be in the dining room sort of thing.
if the doctors say he is not confused then i would take it with a grain of salt, he could still be confused. but from how you have explained this, it is unlikely.
he sounds like an asshole TBH. blind or not.
i have found that some older blind people (usually those who have spent their lives being ableist and thinking disabled people are lesser) get quite angry and bitter after they go blind and don't want to learn how to do things "the blind way". it is not by any means all, just a very small amount of people do and i think he may be one of them. or he is just always has and always will be like this.
i personally would get out. he has a carer and you are not obligated to stay with him.
also if you are looking for lots of opinions on this, you might want to post it elsewhere too because this is a small group and many will pass this post by because of the title. and the way you said "combined with his eyesight, he is also a narc." as this makes it seem that you think him being blind is just as bad as him being a narcissist. which even offended me a little at first ( i think you didn't mean it like that, you are probably just writing angrily and it comes through, but that is how it came across.)
MilkbottleF 1 points 1y ago
> the problems you describe are not blind problems… (if they are real problems that is)
Yes, the behaviour in the OP frankly feels like a caricature of how a shitty old man thinks blind people are supposed to act. Whether it's put on for sympathy/manipulation or he is genuinely going senile I couldn't say without knowing him, but this stuff is just abnormal if you are paying attention to any aspect of your environment. When you hear something or detect its presence on your left, there is no reason for you to reach off to the right when looking for it. Wearing the wrong shoes on your feet is ungainly and painful, you know you've made a mistake after one step. I have touched millions of doorknobs in my life, zero of them were at knee-level, so again, even if I was old and debilitated I would never reach AAAALLLLL THE WAY DOWN the door to find a knob, it would feel silly and wrong. I assume it's the same for sighted people, don't you have muscle memory?
The "basic tasks" you mention can all be accomplished with no sight, blind children teach themselves to do these things in the course of daily living, and adults can be quickly trained (according to your comment history, he already has been._ He should not be getting disoriented in the house he's lived in for four decades, if he is mentally sharp it should be the exact opposite, this would be the place he knows better than any other. Forty years is literally longer than I've been alive, I have lived in close to fifteen different homes, and I cannot imagine getting lost or not knowing what room I'm in the way you've described here. If he's blaming bad eyesight for his inability to feed himself with a spoon, take showers and get his own coffee, there's either another problem going on and he's too embarrassed to admit it, or he's using blindness as a free pass to make sighted people do things for him out of ignorance and pity.
Could be time for a serious talk, give him an ultimatum or start the distancing process: he's already got a caregiver to handle his menial tasks and yet he continues to make your existence harder for no perceptible reason after getting you to uproot your life for him? If he is acting this way at age eighty-seven and he is a lifelong narcissist, there is little you can do to change his attitudes and behaviour, miracles can happen but from how it sounds I think he's just going to stay this way indefinitely.
Yes, the behaviour in the OP frankly feels like a caricature of how a shitty old man thinks blind people are supposed to act. Whether it's put on for sympathy/manipulation or he is genuinely going senile I couldn't say without knowing him, but this stuff is just abnormal if you are paying attention to any aspect of your environment. When you hear something or detect its presence on your left, there is no reason for you to reach off to the right when looking for it. Wearing the wrong shoes on your feet is ungainly and painful, you know you've made a mistake after one step. I have touched millions of doorknobs in my life, zero of them were at knee-level, so again, even if I was old and debilitated I would never reach AAAALLLLL THE WAY DOWN the door to find a knob, it would feel silly and wrong. I assume it's the same for sighted people, don't you have muscle memory?
The "basic tasks" you mention can all be accomplished with no sight, blind children teach themselves to do these things in the course of daily living, and adults can be quickly trained (according to your comment history, he already has been._ He should not be getting disoriented in the house he's lived in for four decades, if he is mentally sharp it should be the exact opposite, this would be the place he knows better than any other. Forty years is literally longer than I've been alive, I have lived in close to fifteen different homes, and I cannot imagine getting lost or not knowing what room I'm in the way you've described here. If he's blaming bad eyesight for his inability to feed himself with a spoon, take showers and get his own coffee, there's either another problem going on and he's too embarrassed to admit it, or he's using blindness as a free pass to make sighted people do things for him out of ignorance and pity.
Could be time for a serious talk, give him an ultimatum or start the distancing process: he's already got a caregiver to handle his menial tasks and yet he continues to make your existence harder for no perceptible reason after getting you to uproot your life for him? If he is acting this way at age eighty-seven and he is a lifelong narcissist, there is little you can do to change his attitudes and behaviour, miracles can happen but from how it sounds I think he's just going to stay this way indefinitely.
complex-blobfish 1 points 1y ago
i think he is playing it. but i wanted to give benefit of the doubt just in case he really is confused. but yh this is a big caricature. i missed the part saying he lived there 40 years, that should be solid memory then which would not be affected by dementia till the later stages, because dementia attacks time backwards. so he should remember that house till he is very obviously confused, to the doctors.
TK_Sleepytime 2 points 1y ago
I don't have specific advice on how to proceed but by pretending to call about nursing homes and pretending to go for a walk but watching him you're doing the exact same shit. Neither of you is fooling the other one. Be frank. Follow through. Quit trying to manipulate him into behaving the way you want the way he tries to manipulate you into doing what he wants.
Trekkie_on_the_Net [OP] 1 points 1y ago
I appreciate your reply. I don't see how testing him is manipulating him. If i am to be a caregiver for him, i need an honest assessment for what his level of ability is, and what i need to prepare for...whether i can leave the house for a couple hours, or whether he might walk out into traffic while i am gone. And if i feel he's manipulating me, i need to know that. Caregiving for him is difficult, and i think its 100% appropriate to find where his baseline is, since there is evidence he's not telling me what it actually is.
Oh, and i'm clearly fooling him when i try, because i've caught him in the act the times he's manipulated me, and i was "trying to fool him." That gives me data i can use to assess him.
As far as the nursing home thing...it was said out of frustration. Yes, i was hoping to scare him into telling me the truth, but if that had worked in order for me to figure out how to care for him, it would make us BOTH better off. Unfortunately, it didn't work, so if i say it again, it will because he is being horrible enough that i just lose it. My next tactic will likely be to try to distance myself emotionally, and just be there to watch out for him, and leave him alone most of the time. I will get a couple extra cameras so i can monitor him from other rooms, and separate myself. If i am upset with him, it makes both of our lives worse.
Oh, and i'm clearly fooling him when i try, because i've caught him in the act the times he's manipulated me, and i was "trying to fool him." That gives me data i can use to assess him.
As far as the nursing home thing...it was said out of frustration. Yes, i was hoping to scare him into telling me the truth, but if that had worked in order for me to figure out how to care for him, it would make us BOTH better off. Unfortunately, it didn't work, so if i say it again, it will because he is being horrible enough that i just lose it. My next tactic will likely be to try to distance myself emotionally, and just be there to watch out for him, and leave him alone most of the time. I will get a couple extra cameras so i can monitor him from other rooms, and separate myself. If i am upset with him, it makes both of our lives worse.
niamhweking 1 points 1y ago
Gosh, that's alot for you to take on. I know of a man in the last few years who is much younger than your dad but has become a self pitying child since loosing his sight. Gets his elderly parents to come 3 times a day to make him food. Wants everyone to do everything for him. He'd be capable if he just tried.
The only thing I can think of is to ensure your dad gets O&M training and daily living skills training cos then he has no excuses.
I'd move out too if possible, for your own sanity and for his independence. If he's lonely does he not have friends, acquaintances, neighbours, parish priest or anyone other than you and the carer to make him less lonely
Are there day centres, AOP activity groups etc he could link up with.
It's a huge ask of you to be his everything
The only thing I can think of is to ensure your dad gets O&M training and daily living skills training cos then he has no excuses.
I'd move out too if possible, for your own sanity and for his independence. If he's lonely does he not have friends, acquaintances, neighbours, parish priest or anyone other than you and the carer to make him less lonely
Are there day centres, AOP activity groups etc he could link up with.
It's a huge ask of you to be his everything
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