My Boyfriend's Stroke, Autism And Interrelated Topics

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littlebee
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09 Feb 2019, 11:26 am

I am not really ready to start my own thread here, but I need to talk about this and do not want to derail people engaged in inquiry on other topics. Warning: A possibly uncomfortable topic or topics, so proceed with caution.This will be an inquiry thread but also to receive and give some support, and hopefully the beginning of weaving a carpet or blanket, To AsPartOFMe who commented and comforted me on another thread--"What is Asperger’s Syndrome?"--thank you so very much! I will describe what is going on with me, but will also try to interconnect my experience with other topics of interest. After I wrote the message last night. on the above mentioned thread. describing what I am going through, things went from bad to very worse. The bad part was talking to so many people for so many hours and trying to do something I could not do and unearth simple very important information people did not want or care to give me about my bf being moved to a nursing home. No matter how articulate and good at this kind of communication I am (actually very good), my blood pressure, which is fortunately generally low, went up thirty points. I felt extreme anger toward this one social worker. I do not usually measure it, but I had my bf's blood pressure thing here and could feel mine had shot up. so was concerned. It is slightly better this morning but can already feel it starting to rise again.

Anyway, last night my already bad psychological condition extremely deteriorted I researched the nursing home where they are trying to put my bf, and I saw it got VERY bad reviews. Shocking and terrifying. VERY freaky bad place. I was wailing out loud and crying, but do not have much if even any control over this. To AsPartOfMe, thanks again for what you wrote, but probably my response and the difficulty I am having is not in this instance exactly because I am autistic. Am not sure. Many other people are going through this same experience, too, as I read shocking and saddening reviews of mistreatment at this home. Then it occurred to me to also search the hospital where my bf is right now, which is a teaching hospital, and this place got extremely bad reviews, but this time from hundreds of people, not so much for the quality of their treatment though many bad reviews for that, but for the bad quality of their social services and billing practice, which are cold, dishonest and immoral. What people and their loved ones went through there, presumably most of them not autistic, is really heartbreaking. If people want to comment on this topic and share their own experiences with hospitals or anything that comes up here, feel free.

One thing that interests me is that there are good people in both of these hospitals, really good, generative and compassionate, and also people who are mixed--good but can only do so much because they know they have no control past a certain level and have to accept that, but don't tell you what is happening; it is covert which is, I suppose, kind of selling out because of fear or whatever--much more to say about this-- and also there are people who are literally out and out pretending to be good, lying and play acting to cover their own hostility and aggression . This is the biggest trigger for me.



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09 Feb 2019, 4:25 pm

Im not sure how to reply, you have a lot going on and will likely be in a tough situation for the medium-long term. I guess as you say talking about it is a good step to take...
I think your point about the reviews being disturbing reading would have me worrying frantically, though to balance that out I often think that people are most motivated to post reviews when angry/other negative emotion.



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09 Feb 2019, 5:49 pm

Yes, a tough situation in the medium-long term. Thanks for not minimalizing my experience. Yes, agreed, people are more motivated to post these one star reviews when they have had a negative experience. This said, when it is a relatively large staff, actually even just a few, and everyone with different home ip locations, it is probably much more likely to have fake five stars. A lot of them really do sound contrived, whereas the details and writing styles in the one stars sound unique in each message. Observed this on other yelp messages, too, on entirely different kinds of businesses. I have never left a yelp review, but if it were my business and I received some bad ones I considered to be unfair, do not know what I would do.

I have more stuff to share, but too weak and upset to do so now. What really bothers me is that I have a lot of expertise in getting along with people while at the same time getting information, and what I had pull off in order to get the few crumbs I have received--at times almost reverting to begging like a little dog, really infuriates me. Most people, autistic or otherwise, imo, could not do it, and so they are subject to the ignorance, lies, convenience and contrivance of either muddled thinkers or corrupt people with limited conscience. This while their loved ones are maybe dying and callously allowed to die when they could be saved or even almost out and out being killed, if you look at it this way. And such is going on all over the world, and not just in hospitals. My bf was a liar and a contriver,, too, by the way, and probably still is in that he still has working brain function. He is also a sweet person in many ways and I do love him. The doctor I talked to about an hour ago said, when pressed by me as to how severe his stroke was on a scale of one to ten, and I really had to press to get this out of her, said "seven."



Last edited by littlebee on 09 Feb 2019, 6:30 pm, edited 1 time in total.

jimmy m
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09 Feb 2019, 6:19 pm

My mother was in a nursing home for several years. Initially she broke her hip bone and had it replaced. She was in the nursing home for a month to recuperate from the surgery and then we brought her home. Over the next few years she was in and out of nursing homes. Eventually she reached the point where a single person could not help her get up out of bed. It took 2 people to do that. At that point she went in the last time.

There are good and bad nursing homes. Most patients tend to rate all nursing homes as bad because they view it through the eyes of wanting to be in their own homes. They are in a nursing home because they can no longer take care of themselves.

Most nursing homes allow and almost encourage visitors. So by all means visit your friend.

Your friend will be able to leave the nursing home, if they can recover from the effects of the stroke. There are a lot of physical training tools and coaches in a nursing home. If your friend really wants to return home, they should focus on these tools.



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09 Feb 2019, 11:03 pm

I'm sorry about the news. Sweet Pea hugs.


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ASPartOfMe
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10 Feb 2019, 4:56 am

They should tell you what is going on but unfortunately because you are not immediate family or married to him they are not required to involve you.

One piece of good news or more accurately not so bad news is he is able to talk with you. Many stroke victims have facial paralysis and thus can’t talk. Some advice that you can communicate with him is try and get friendly with the nursing home staff. He needs to learn the difference between who is an aide and who is a nurse. An aide can clean, help him to the bathroom but can not dispense medicine. If he needs medical treatment aides will call the nurse and this can take time. If he has needs that can wait he should wait for the more regular/non weekend staff.

Having someone you care for have a stroke is a shock no matter what your neurology for the reasons I mentioned in the other post. Caregiver burnout and stress is real and something that all caregivers need be mindful of. I just feel being autistic makes it harder for those reasons.


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10 Feb 2019, 9:28 am

(Qualifier and hello-o: What I am writing may be kind of mundane reading in the beginning days, but, if the thread continues, will probably be more interesting later if I delve deeply into certain idea content relating to autism.

Thanks to everyone! To Jimmy, that must have been hard to go through with you mother. Actually I do not know if my bf will ever to be able to leave the nursing home. He had a massive stroke and his right side is paralyzed.. He is wearing a diaper and needs two people to move him so he can sit in a special chair. He was not able to swallow and could only suck on ice chips. Now he has regained swallow function to some degree and is able to eat thin mashed potatoes and liquid pureed chicken. Maybe after six months, speculating positive, he will be able to walk if he actively embraces therapy, which I'm not sure he is the kind of person to do.. I doubt he will be able to ever drive again. He would need to drive to be able to function from his rent controlled apartment, as it is not near public transit or any stores. ((Editing this message now for typos, and about to cry as I reread this.))

To Cockney Rebel, thanks for the sweet pea hug. Very adorable. I made mushroom barely soup last night with a split pea base. Not sure how this correlates:-)

To AsPartOfMe, thanks. They are treating me as his family, kind of. I am getting the same info a member of his family would, probably, even more so, as I am very adept at getting info. This hospital has extremely bad ratings for the way they work with people and also because of billing practices. There is something wrong from that end. This maybe is a little boring, but someone may be interested: They were trying to get him admitted to three homes. One of them, the best, has a three and one half star rating and is nearer to my home, possible to get there by bus, though still difficult and a long trip, maybe two hours. Two of them have a two and one half star rating, which is very bad, considering that the some of the five star ratings that brought it up to two and one half stars were very probably written by staff, so their rating is actually lower, plus yelp mechanically omitted some of the one star reviews that were too long or used extremely inarticulate spelling and english or were too aggressive in tone. You can see them, but they are not factored into the rating. Well, the social worker only told me about the worst home, which home would probably be glad to take him, as they would grab anyone.The way I found out about the other two, yesterday, was that I begged his nurse to look at his chart and she found the other two homes mentioned there. I never would have known. Then I literally brow beat the weekend social worker to contact the good (better) home of the three by telling her I am an accomplished writer (kind of true) and was considering documenting this whole experience and it would be published in their local paper (and maybe a lengthy article in the New Yorker Magazine ha ha). But I still do not know if that nursing home will accept him. They do not want to get stuck with the wrong person, this meaning, I think, a lot of insurance hassles, as he is not on medi-cal, only on medicare at the present time.

Meanwhile, I am a healer and basically a good person, but I am doing this for a man I was in a very dysfunctional relationship with and was thinking of leaving but was basically stuck with for a while longer because he deliberately made me dependent in a certain way (his idea from the beginning, not mine, but I was complicit, obviously). Really tough situation. Now that is over and I, due to being a good person, am in the position of being a care taker when I am not able to take care of myself. VERY STRESSFUL. Whoops, finger slipped. Genuinely did not mean to use caps, plus I am struggling with this exotic screaming impulse which is very scary.

However this is not a yes-but thread, as I am hopefully eventually going somewhere with it.

What is interesting to me is the subject of story. We all have our own story about what is happening. It fascinates me that no one really knows what I am going through and also I do not really know what anyone else is going through. We can kind of extrapolate about another person's experience. So what is the common ground? How to find that. I think doing something together and that is happening on this forum, but what is it?

I am going through an experience really quite disorienting and terrible. No one knows until right now that my grandson had to kick in my bf's door. The story is worse than this, though, but will not go into it right now. The real estate agency has replaced the door but will not give us a key to go in and get my bf's checkbook so he can pay the rent. I have to get a signed letter from my bf and he is far away. Only my grandson can take me there but he has to work and get money to pay his parking tickets. Blah blah blah. Plus we do not even know where my bf will be as they are going to transfer him anytime to God knows where at the drop of a dime. I am afraid he will lose everything he owns--a lot of anxiety about that. This is just part of it. I am dealing with human hostility and my own, plus I have to do my taxes and get them to the tax guy FAST. He left town three years ago, so this is done by email and US mail, plus I do not know if he will even take me this year. Before him many years ago the other guy did a bad job and I had to refile. No reason why he wouldn't take me, but when he left town right before tax time he did not tell any of his clients, and only by miracle did I get the last available appointment before he left.. Now it just started to rain really heavily. Beautiful sound though.

Re these two bad nursing homes--they were and presumably still are literally killing some people by overt neglect, meaning wrong medication, no doctor contact, letting people's feet rot, not sending to the emergency room when they should have. You think this does not happen? I read the reviews. Some of the stuff very shocking. A person who lost a loved one in these circumstances could go crazy from anger and grief. Very heartbreaking to read this stuff. By the way, as previously written, most if not all of these people whose loved ones were treated cruelly before they died were what some called nt's. You think they do not suffer, too? End of rant.



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10 Feb 2019, 11:41 am

littlebee wrote:
(Qualifier and hello-o: What I am writing may be kind of mundane reading in the beginning days, but, if the thread continues, will probably be more interesting later if I delve deeply into certain idea content relating to autism.

Thanks to everyone! To Jimmy, that must have been hard to go through with you mother. Actually I do not know if my bf will ever to be able to leave the nursing home. He had a massive stroke and his right side is paralyzed.. He is wearing a diaper and needs two people to move him so he can sit in a special chair. He was not able to swallow and could only suck on ice chips. Now he has regained swallow function to some degree and is able to eat thin mashed potatoes and liquid pureed chicken. Maybe after six months, speculating positive, he will be able to walk if he actively embraces therapy, which I'm not sure he is the kind of person to do.. I doubt he will be able to ever drive again. He would need to drive to be able to function from his rent controlled apartment, as it is not near public transit or any stores. ((Editing this message now for typos, and about to cry as I reread this.))

To Cockney Rebel, thanks for the sweet pea hug. Very adorable. I made mushroom barely soup last night with a split pea base. Not sure how this correlates:-)

To AsPartOfMe, thanks. They are treating me as his family, kind of. I am getting the same info a member of his family would, probably, even more so, as I am very adept at getting info. This hospital has extremely bad ratings for the way they work with people and also because of billing practices. There is something wrong from that end. This maybe is a little boring, but someone may be interested: They were trying to get him admitted to three homes. One of them, the best, has a three and one half star rating and is nearer to my home, possible to get there by bus, though still difficult and a long trip, maybe two hours. Two of them have a two and one half star rating, which is very bad, considering that the some of the five star ratings that brought it up to two and one half stars were very probably written by staff, so their rating is actually lower, plus yelp mechanically omitted some of the one star reviews that were too long or used extremely inarticulate spelling and english or were too aggressive in tone. You can see them, but they are not factored into the rating. Well, the social worker only told me about the worst home, which home would probably be glad to take him, as they would grab anyone.The way I found out about the other two, yesterday, was that I begged his nurse to look at his chart and she found the other two homes mentioned there. I never would have known. Then I literally brow beat the weekend social worker to contact the good (better) home of the three by telling her I am an accomplished writer (kind of true) and was considering documenting this whole experience and it would be published in their local paper (and maybe a lengthy article in the New Yorker Magazine ha ha). But I still do not know if that nursing home will accept him. They do not want to get stuck with the wrong person, this meaning, I think, a lot of insurance hassles, as he is not on medi-cal, only on medicare at the present time.

Meanwhile, I am a healer and basically a good person, but I am doing this for a man I was in a very dysfunctional relationship with and was thinking of leaving but was basically stuck with for a while longer because he deliberately made me dependent in a certain way (his idea from the beginning, not mine, but I was complicit, obviously). Really tough situation. Now that is over and I, due to being a good person, am in the position of being a care taker when I am not able to take care of myself. VERY STRESSFUL. Whoops, finger slipped. Genuinely did not mean to use caps, plus I am struggling with this exotic screaming impulse which is very scary.

However this is not a yes-but thread, as I am hopefully eventually going somewhere with it.

What is interesting to me is the subject of story. We all have our own story about what is happening. It fascinates me that no one really knows what I am going through and also I do not really know what anyone else is going through. We can kind of extrapolate about another person's experience. So what is the common ground? How to find that. I think doing something together and that is happening on this forum, but what is it?

I am going through an experience really quite disorienting and terrible. No one knows until right now that my grandson had to kick in my bf's door. The story is worse than this, though, but will not go into it right now. The real estate agency has replaced the door but will not give us a key to go in and get my bf's checkbook so he can pay the rent. I have to get a signed letter from my bf and he is far away. Only my grandson can take me there but he has to work and get money to pay his parking tickets. Blah blah blah. Plus we do not even know where my bf will be as they are going to transfer him anytime to God knows where at the drop of a dime. I am afraid he will lose everything he owns--a lot of anxiety about that. This is just part of it. I am dealing with human hostility and my own, plus I have to do my taxes and get them to the tax guy FAST. He left town three years ago, so this is done by email and US mail, plus I do not know if he will even take me this year. Before him many years ago the other guy did a bad job and I had to refile. No reason why he wouldn't take me, but when he left town right before tax time he did not tell any of his clients, and only by miracle did I get the last available appointment before he left.. Now it just started to rain really heavily. Beautiful sound though.

Re these two bad nursing homes--they were and presumably still are literally killing some people by overt neglect, meaning wrong medication, no doctor contact, letting people's feet rot, not sending to the emergency room when they should have. You think this does not happen? I read the reviews. Some of the stuff very shocking. A person who lost a loved one in these circumstances could go crazy from anger and grief. Very heartbreaking to read this stuff. By the way, as previously written, most if not all of these people whose loved ones were treated cruelly before they died were what some called nt's. You think they do not suffer, too? End of rant.


Two pieces of good news in all that bad news.

Functions are returning. I lost swallow ability not from my stroke but from my tongue replacement operations. I am eating, pureed food, baby food but I still use a peg tube for some feeding and medication. He will need a lot of work with a speech pathologist to regain swallowing function

The worst of the nursing home horror stories do happen but usually to patients they know have been abandoned. In bf case they know people are watching them.

Insurence issues are the bane of everybody causing so many obstacles.


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12 Feb 2019, 4:16 am

Thanks everyone and AsPartOfMe... What you went through must have been very difficult and I'm so glad you are recovering. Thanks for the positive insight, but with my bf it may not be like this, exactly. First, he has backslid in some ways. They are taking him off pureed food again as the nurse said he started to choke. Second, I thought he had full use of his left hand, but I had the nurse in the hospital before he left there do a writing test, and he can barely sign his name in a way that is legible. Did not previously realize that. Today I went through hell, but am feeling better now. Must have had maybe thirty or forty phone convos, a small percentage of them comforting, but all to no avail. He was moved at 4 pm to the worst reviewed nursing home,.the one I was from the beginning desperately fighting for him not to be moved to. Secondly I found about I was given wrong info about the deadline for paying his rent, and he was about to be evicted and lose everything he owns. This experience and the people I talked to about it is worse then I can describe. Finally I got a cashier's check and my Grandson drove me to another city and I payed his rent with my own money. My hands were shaking when I did it. The facility he is in now is so far away I cannot visit him there---ever--unless my Grandson takes off from work and drives me. No easy public trans. None of this describes the stress and actual horrific-ness of what I have been through today. Also, I will have to get a lawyer and be made power of attorney in order to even go inside his place and get his glasses for him and his bills to pay etc. Both his bank and the real estate company told me to do that. First I though it would not be so bad, but now I am realizing that it will be even more time consuming and a big responsibilities as I will have to file his taxes and oversee his ira and get his place cleaned up. The firemen had to wear a mask to go in there.

***All this said, it is the probably one of the best learning experiences of my entire life, as finally I learned,once and for all, without any doubt or question in my mind, how unconscious, reactive, petty and in short, asleep,--oh, and liars, so many people are. This sounds negative I realize, but actually because of it my heart is filled with compassion for suffering human beings, mainly the aggressed upon, I acknowledge, but am also beginning to feel for the aggressors, too, my whole perspective being changed. I am seeing through something into a place that is clearer.

The good part---I had a wonderful time talking with my grandson when we were driving there and back. Very relaxing, Unusual dark clouds, actually one gigantic cloud, the whole length of the sky ,almost, with a few brilliant bright strips on the edges or underneath. I never saw anything like it before. My grandson said he has seen that kind of thing many times.



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20 Feb 2019, 1:35 pm

This is to give an update and also continue in the line of inquiry. I will put a star before some of the inquiry parts or bold certain lines if you want to skip some mundane details. The situation has gone from bad to worse. I do not know if he will ever recover, and that is sad. I genuinely love him, but our relationship was very dysfunctional, and he was not a person I ever intended to be with forever Well now I am free of this relationship, but not my responsibility, as I was with him and he gave me a lot in many ways, and I am a person of conscience. I am having great difficulty as I cannot get into his apartment to get his checkbook and driver's license until the nursing home sends an email from the doctor. Sounds easy but very complex for many reasons, and it feels next to impossible to ever achieve this. I have been on the phone talking to many people trying to get help for him probably an average of eight hours a day since this started. It is too complex to describe what is going on. I was up at four in the morning yesterday trying to prepare a pdf file so they can print up a form for him to sign and then for the doctor to sign and then scan it into the hospital and send to the real estate agent, who is hostile, not just to me, but to everyone. That company was picketed by fifty people.I am dealing with some cold, often emotionally cut off, frequently inarticulate (and English is often not the first language and they pretend to understand what they really do not) people, most of whom are stressed and having to work very fast and push themselves beyond their natural capacity, most of them people of some, but limited, conscience, expertise and general understanding about much of anything. Some of the people are genuinely kind, and I think it is possible to interact in such a way as to tap that kindness in oneself and interconnect it with the kindness in others in such a way to amplify it IF there is time and if it is with people who are not too cut off, the latter of which some people are.Actually this probably describes many people in this world. To make things even worse, and this is hard for me to believe, but it did happen--and I suppose on one level kind of funny--ha ha?. A person he knew (whom I finally contacted in case we cannot get his driver's license and have to get two people to meet us there in the nursing facility, a place far away from all of us, and show their driver's license to the notary so she can verify my bf is who he says he is) actually without telling me called his stalker ex-wife he divorced ten years ago because of whom mybf already lost one relationship with someone he cared very much about because of and she has arrived from Slovenia! Ha ha? I mean, come-on, ha ha-- on some level this is kind of funny!

So the above is in no way all of the details, just a small percentage of what is happening. My bf still cannot drink water as he chokes but can have pureed foods and thickened juice. He is having trouble breathing at times. A serge of sensation went through the arm on his paralyzed side for five minutes the other day and yesterday a tremor went through his paralyzed foot for a few seconds. Do not know if the latter is good or bad, but the sensation through the arm was good.

*****, do you see, we all have these kinds of situations, some of it very complex with all kinds of subtleties and implications, most of which anyone we try to share with probably cannot ever grasp the emotional nuance of, let alone the facts, and how these two interconnect to cause in some a great despair. * This is written with love for you. I think of some autistic people who are in a helpless vulnerable frustrating and sometimes terrifying position/situation, including many high functioning autistics and people in general, so called n-t's, also. There is no way for anyone to possibly understand even if they could be presented with the complex details and had the time and interest to wade into a sea of information where ultimately a tide can engulf and turn into anger, confusion and overwhelming frustration and despair. Kindness makes a big difference, but as it is said, love is not enough.



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21 Feb 2019, 2:41 pm

Soon I will get to autistic brain function, but first, this message: My ordeal has ended, as his ex wife who he wanted nothing to do with and who drove him crazy with anger, who had to go back to her native country because she could not afford to live here, arrived on the scene three days ago and has taken over (in a very aggressive, dishonest way as they did not tell me this was happening, so I was still on the phone desperately trying to make contacts, find out information, drafting a document, trying to make a pdf, trying to find a nursing home twenty-four seven for about two extra days, but its all ok as I am now free:-) and wants to live in his (literally very) crappy studio apartment when he is in a nursing home and then after that take care of him. Actually she used to be an in home care provider, but had to stop as she is too old for the job. This is his wish and now I am completely free of any kind of obligation. I never had the experience in my entire life of being under very horrible stress, both outer and inner and then having it all in one moment completely lifted with basically no residue. Incredible experience. A complete change of affect.

***Now the facts of anything I write here are completely true, though my subjective interpretations may be skewed. Life is so rich and interesting, at least for me, that I do not need to make up a story, and we can also use one thing to say more then one thing. I do think a person can become so caught up in his own story that he cannot see the forest through the trees.



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21 Feb 2019, 2:54 pm

That sounds like best for all concerned. His ex gets to live here. He gets care. And you get to move on with your life.



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21 Feb 2019, 3:42 pm

I know it is good for me, but probably not good for her, except financially, plus she is a depressed person who gets something to do, to mother and almost surely not good for him. (Will get to this in a future message). The inclination to tie the story up in a very neat way is understandable, but there are many dark nights, even 1001 of them:-) If you tie the story up too soon, you die. Then how can you help your brother?



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25 Feb 2019, 1:49 pm

BTDT wrote:
That sounds like best for all concerned. His ex gets to live here. He gets care. And you get to move on with your life.


To BTDT--I think I may have discounted your message, and I'm sorry. The solution to this particular problem and perhaps any problem needs to be simple within oneself or else a person just gets more and more caught up in it, and this is what has started ti happen this morning over a struggle for the power of attorney which is going down tonight, and in a last ditch effort because he says he really wants me to be have power of attorney, last night and this morning I was starting to get caught up in the big very unpleasant drama of it all over again, and then I remembered what you wrote. It is helpful to me now. My grandson said my bf is changing his mind back and forth depending upon whom he talks to, and I had my grandson talk to my bf on a three-way call, and then I talked to my bf again afterwards, and it really is true.

I was in a dysfunctional relationship, my choice, complicit, the dynamics of which I have yet to write about but will, and the dysfunction if that it is all playing out now, not because iof other people but because it is inside me. I can step away and be free, but then I have to face and live with the hole in myself which this relationship did in some way seem to on some level fill.

The story telling still goes on, but as in 1001 nights, it cannot just be the same story or then the person gets their head chopped off. I just do not know how to take the next step in data processing within myself, but maybe I will figure it out.