Author mortensorchid Posted July 13, 2024 Author Posted July 13, 2024 Now on day 12 in thr ICU ... 3 spinal taps, he's awake but mumbles and makes goofy faces. He doesn't know ow me (my name or who I am to him). Everyday is a change. Baby steps...
Gaeta Posted July 13, 2024 Posted July 13, 2024 2 hours ago, mortensorchid said: Now on day 12 in thr ICU ... 3 spinal taps, he's awake but mumbles and makes goofy faces. He doesn't know ow me (my name or who I am to him). Everyday is a change. Baby steps... They still don't know what happenned to him? Is his family around?
Author mortensorchid Posted July 13, 2024 Author Posted July 13, 2024 14 hours ago, Gaeta said: They still don't know what happenned to him? Is his family around? On spinal tap #3 and they still don't know what's wrong with him. They narrowed down that he has cirrhosis at least. Yes, his family is around. His mom is in a nursing home with dementia for the last two years, his father is around but not as cognizant as he used to be. The only one is his brother who I am in contact with. Before then I had met the father 4x and the brother 3x, the brother didn't even know my last name but he got it from hospital records. I talk to him everyday. He will not see him even though he lives nearby, I asked why. He said it's because if he dies, he doesn't want his last image of him being that of like he had of his grandma's death (she had had a stroke, he face was sagged on one side, and she was trying to rip out the tubes from her IV). His words, not mine. You may draw your own conclusions from that. I saw him today. He is better-ish. He was awake, he speaks in whispers / mumbles now, he makes goofy faces and acts kind of silly. He knows who he is some days, others not. I asked him what he had for breakfast this morning, he said he went to grandma's house (he didn't eat breakfast, he has tubes in his nose feeding him). I asked who am I, am I a nurse? No. He said I am his girlfriend. I said that's good. I give him kisses good-bye, he likes that. Back tomorrow, now on day 13...
Lotsgoingon Posted July 14, 2024 Posted July 14, 2024 This guy has been disastrously distant and basically pushed you away. One of the traits we can encounter is people we like who make it super hard to help them. For whatever reason. You went far and above any moral requirement to check on him. But he hasn't been helpful. We actually need to be helpful when we are ill and and it's really hard for some people to let others come close when they aren't feeling well. This guy needs a bigger network than you.
Gaeta Posted July 14, 2024 Posted July 14, 2024 19 hours ago, mortensorchid said: He will not see him even though he lives nearby, I asked why. He said it's because if he dies, he doesn't want his last image of him being that of What a coward !! It is more his responsibility to be there than it is yours. 1
Gaeta Posted July 14, 2024 Posted July 14, 2024 19 hours ago, mortensorchid said: I saw him today. He is better-ish. He was awake, he speaks in whispers / mumbles now, he makes goofy faces and acts kind of silly. He knows who he is some days, others not. I asked him what he had for breakfast this morning, he said he went to grandma's house Did he have a brain scan? He acts like my aunt that has alzheimer. 1
Author mortensorchid Posted July 14, 2024 Author Posted July 14, 2024 10 hours ago, Gaeta said: Did he have a brain scan? He acts like my aunt that has alzheimer. He did have a brain scan, an MRI. There is nothing out of the ordinary but I think with a brain MRI they are looking for obvious signs of damage, which there does not seem to be. They are/were able to nail down that he has cirrhosis. They asked me if he drinks, I said yes he does quite a bit. As far as I know he never did any drugs (legal or illegal). He has IBS (irritable bowel syndrome). The next plan is for him to have his 3rd spinal tap this week, then he will be sent down to the main city campus hospital. They have a special ICU there for neurological problems. I happened to be chatting with a neighbor in my building who said she has IBS and some kind of autoimmune disease, she recommended this place at the city hospital for this. I am thinking it might be something along those lines. Another friend of mine said she has cirrhosis because she had an autoimmune disease as well (Type 1 diabetes) which I didn't know. He will be going to a long term care facility ... He's not going to come out of this, I just realized in the last few hours. I have not cried a single tear about this, I have never asked "Why me" the entire time. I am just in survival mode at the moment...
NuevoYorko Posted July 15, 2024 Posted July 15, 2024 Mortensorchid - over the years I have tried to engage with you on many of your threads and I don't remember you ever responding - and I don't know if you will now. But I have questions and don't feel bad about asking them because you are sharing freely. I have to say that it seems like you really don't know him very well, considering that you've been together for 2+ years. You had posted recently that he was neglecting his health and you as well. This whole situation seems to be taking place in a vacuum. Does /did he have a job? Friends? Any hobbies / pass times? Have you and he shared any of your lives together over the course of these past two years? It sounds like he was fading away to the point where you were sort of accepting that he was "ghosting" you and you let it remain like that for almost 2 weeks, until you evidently showed up and prevented him from simply dying on his own, by himself, in his apartment. And not a soul noticed he was missing? Is that a reasonable assessment? Who is making his medical decisions for him, since he's not communicating? Since you're known as "the girlfriend" I'm sure it can't be you. Does he have medical insurance, etc? What's going on with his apartment? Maybe all of this is none of my / our business but I actually am concerned. 4 2
Gaeta Posted July 15, 2024 Posted July 15, 2024 5 hours ago, NuevoYorko said: for almost 2 weeks In her last thread, she posted on June 14 that she had not gone seen him in weeks. There are so many things I don't understand in this relationship's dynamic. How do you not go see your boyfriend for weeks, on top of that when he's sick? Morten, you may not want to see it but l think your boyfriend was drinking himself to death. 1
Sony12 Posted July 15, 2024 Posted July 15, 2024 It's possible the relationship was more casual than she is letting on in this thread.
Author mortensorchid Posted July 15, 2024 Author Posted July 15, 2024 7 hours ago, NuevoYorko said: Mortensorchid - over the years I have tried to engage with you on many of your threads and I don't remember you ever responding - and I don't know if you will now. But I have questions and don't feel bad about asking them because you are sharing freely. I have to say that it seems like you really don't know him very well, considering that you've been together for 2+ years. You had posted recently that he was neglecting his health and you as well. This whole situation seems to be taking place in a vacuum. Does /did he have a job? Friends? Any hobbies / pass times? Have you and he shared any of your lives together over the course of these past two years? It sounds like he was fading away to the point where you were sort of accepting that he was "ghosting" you and you let it remain like that for almost 2 weeks, until you evidently showed up and prevented him from simply dying on his own, by himself, in his apartment. And not a soul noticed he was missing? Is that a reasonable assessment? Who is making his medical decisions for him, since he's not communicating? Since you're known as "the girlfriend" I'm sure it can't be you. Does he have medical insurance, etc? What's going on with his apartment? Maybe all of this is none of my / our business but I actually am concerned. 1) Knowing him - No, I don't. But some people are together for 25+ and you still don't truly know each other. 2) Vacuum - Yes. 3) Friends / job - Yes he does have a job - he is a college professor at a university in my city and he was on summer break. Friends? He has acquaintances not friends. I met one of them in the last two years. We have shared our lives together, yes. 4) Ghosting - Was it a reasonable assessment of you to say that I did prevent him from dying on his own, by himself in his apartment after almost 2 weeks had gone by? Yes, it is. I told myself not to bother him after a while, maybe he was angry at me for something. And no one came by to see him or even tried to contact him until I showed up. 5) Family - He has family in the area. Parents are divorced - Mom is in a nursing home with dementia for the last 2 years, Dad is nearby and is not as cognizant as he used to be. He also has a brother who lives with the father. The brother is seen as the one to make the decisions for him, obviously. The brother also is not seeing him because he doesn't want his last image of him to be of him dying. He said his last image of his grandma was when she was dying, she'd had a stroke and her face saged off to the side and she was pulling the tubes out of the IV pole. I am the only one who will see him in the hospital. He'd mentioned a few other relatives in passing conversations but I don't know them. 6) Health insurance - He has no health insurance. I told the hospital this and they are aware. 7) Apartment - I went to the apartment building and saw the same people in the manager's office that I saw the other week when he was taken away. I told them I don't know what his future will be. On top of that, I am also his girlfriend not his wife, plus I don't live in this building either and I don't have access to his financials so they can't be paid at the moment. Hope that answers your questions. 1
ShyViolet Posted July 15, 2024 Posted July 15, 2024 4 hours ago, mortensorchid said: 1) Knowing him - No, I don't. But some people are together for 25+ and you still don't truly know each other. What a strange thing to say about someone you were in a relationship with for two years. Something sounds deeply dysfunctional here. 2
Sony12 Posted July 15, 2024 Posted July 15, 2024 3 hours ago, ShyViolet said: What a strange thing to say about someone you were in a relationship with for two years. Something sounds deeply dysfunctional here. It may have been one of those relationships where you will occasionally call on a Friday or Saturday evening and say 'hey want to hang out'?
Author mortensorchid Posted July 15, 2024 Author Posted July 15, 2024 There is some good news today - after his 3rd spinal tap they were at last able to identify the cause of this mysterious state! He has an autoimmune disease Guillian-Barre Syndrome. They are starting him on medication for this condition tonight, this will take a few days and MAYBE he will wake up from this once they have isolated the problem at hand. There is also some very concerning news as well ... He probably won't be the same person he was before. And he probably won't be able to live by himself as he might be weak and helpless, and he might have to go to a LTC facility. 1
Gaeta Posted July 16, 2024 Posted July 16, 2024 20 minutes ago, mortensorchid said: here is also some very concerning news as well ... He probably won't be the same person he was before. And he probably won't be able to live by himself as he might be weak and helpless, and he might have to go to a LTC facility. Are they giving you the worse case scenario? I've read quickly about this, is it a classic case? They seem to say full recovery is acheived between 6 months to 2 years.
Sony12 Posted July 16, 2024 Posted July 16, 2024 (edited) Yes the Mayo Clinic website says most people are able to walk again six months after symptoms begin and often make a full recovery after a few years. Edited July 16, 2024 by Sony12
BaileyB Posted July 16, 2024 Posted July 16, 2024 Indeed, it is possible to recover from Guillian-Barre. I wouldn’t give up all hope just yet. He is relatively young, albeit with comorbid conditions. His age will be to his advantage.
Author mortensorchid Posted July 16, 2024 Author Posted July 16, 2024 I am sad knowing this ... I can't do anything about this... 1
OKtoday Posted July 16, 2024 Posted July 16, 2024 What’s your experience with his drinking and how much liver damage does he have? Did they say what stage his Cirrhosis is?
Gaeta Posted July 16, 2024 Posted July 16, 2024 11 hours ago, mortensorchid said: I am sad knowing this ... I can't do anything about this... His brother needs to seriously to get involved! 1
NuevoYorko Posted July 16, 2024 Posted July 16, 2024 2 hours ago, Gaeta said: His brother needs to seriously to get involved! It's mind boggling that the brother is comfortable just leaving this guy to perish miserably and alone to save himself from the discomfort of seeing his sibling in bad shape. I think it would feel a lot worse to just abandon the person and know that they'd experienced that at the end of their life. I hope that this sick man has a recovery from Guillian-Barre. At least if he's in a rehab type of facility his drinking will be controlled by his environment and maybe some other lifestyle issues, like diet, might be improved. 4
NuevoYorko Posted July 16, 2024 Posted July 16, 2024 On 7/15/2024 at 6:33 AM, mortensorchid said: 1) Knowing him - No, I don't. But some people are together for 25+ and you still don't truly know each other. On 7/15/2024 at 6:33 AM, mortensorchid said: 2) Vacuum - Yes. What stuck the two of you together? Yes, some people are together for years without knowing each other. Why did you choose that for yourself though? I am surely projecting but I don't understand how a relationship could really take root if the people don't know much about each other at all. Anyway, how are you doing. When you visit him do you feel that the two of you are connecting? Do you have some support from friends or family members of your own? 1
ShyViolet Posted July 16, 2024 Posted July 16, 2024 2 hours ago, NuevoYorko said: It's mind boggling that the brother is comfortable just leaving this guy to perish miserably and alone to save himself from the discomfort of seeing his sibling in bad shape. I think it would feel a lot worse to just abandon the person and know that they'd experienced that at the end of their life. We don't know the full backstory of the brother's relationship with him. I'm sure the reason he won't see him is more than "I don't want to see him like that." If it was a normal relationship, the brother would be there. But that is no one's decision but his. 2
Author mortensorchid Posted July 17, 2024 Author Posted July 17, 2024 10 hours ago, NuevoYorko said: What stuck the two of you together? Yes, some people are together for years without knowing each other. Why did you choose that for yourself though? I am surely projecting but I don't understand how a relationship could really take root if the people don't know much about each other at all. Anyway, how are you doing. When you visit him do you feel that the two of you are connecting? Do you have some support from friends or family members of your own? I am fine. Hard as a rock. Someone has to be.
Author mortensorchid Posted July 20, 2024 Author Posted July 20, 2024 I found out some things from a friend of his. She and I had met once or twice before, I reached out and told her about him yesterday. We met at the hospital, I showed her him in his hospital bed. He acts like a toddler at times, smiling and laughing and acting silly. He is in and out of restraints (he tries to pull the tubes out sometimes, other times he doesn't), his general health goes up and down (he could breath on his own for about 10-11 hours unassisted, but then started slowing down so they put him on a BiPap machine again). On the way out, she asked what they do / don't know about him. I told her about the cirrhosis, she said she was not surprised. The two of them shared an office at one point (they are teaching at a local university), she said he would come into work sometimes with alcohol on his breath. I was surprised to hear that. They asked me if he drinks, I said yes he does. I wouldn't call him an alcoholic, but he can and does put it away the times we were together. COming into work with alcohol on your breath is not good. So, like I said, do we truly know someone? No, we don't.
Recommended Posts