I am very upset. is in a place called Trump Pavilion in Jamaica, Queens. The stroke was severe and I heard from my brother, an attorney who has power of attorney and proxy status that she has had very little improvement over the course of her therapy. She can't move her leg, let alone walk or stand, and her arm is totally paralyzed. I am going crazy not seeing her or speaking with her.
The picture you've painted of your mother is of a determined and loving woman. As you say, the stroke was a terrible thing that happened to her. But she is, little by little, getting better. That's good news. If you allow her to rest and regain her strength, with any luck she will go on getting better. That's what is most important.
I also get a picture of a community around you that understands better than you realise what is going on with you. Nobody is trying to hurt you by stopping you seeing your mother, or refusing to interfere in her care. The doorman wanted to go and see her because he likes her and cares about her and her family. I expect he gave her news of you, probably that you're missing her a great deal but that you're okay and people are paying attention to you.
The nurse practitioner has your notes, and she will have read them. You have a very long history, haven't you? So she doesn't need to ask you a whole load of intrusive question to know something about your health. She wants you to take your medication because she believes it will make you feel better. It's her job to help you, isn't it? The medication is designed to help you think more clearly and to feel less upset and anxious. If you take it properly, over time you will find it easier to decide what to do next and you will feel less afraid of all the changes that are going on. You'll be able to cope better with important decisions like sorting out your own place to live and maybe taking your job further.
But all of this takes time, and I'm pretty sure I'm not telling you anything new. A little while back you said that the clinic doesn't help you. That isn't the whole truth, though, is it? You wouldn't let the clinic help you - you left before they could. What made you want to leave the clinic before they had a chance to look after you?
I do understand that this is a frightening and upsetting time for you, and that it is going on for a long time which is very difficult for you to manage. But I feel reassured because the people around you are talking to you and supporting you. The doorman's wife answered when you knocked and they told you news about your mother. The social worker at the nursing home, too; she was happy to have a long talk with you. All of these people do care about you and believe that you are important. They are helping you.
I agree that it is very worrying when you don't know what's going to happen. Everybody feels like that about uncertainty. Sometimes it can be exciting, but more often, especially when it's about basic things like where we're going to live or what will happen to people we love, it is stressful and frightening. I'm afraid, though, that nobody has the answer to that. None of us can see the future.
What you have to do instead is make the best use you can of your time right now. Be reassured that your mother is safe, she is being well looked after and she is beginning to get slowly better. Let your own mental health team help you by listening to their advice and following it. Sometimes they won't be able to answer every question you have because, as I'm sure you know, the way medications work is extremely complex and hard to explain. But they know what they're doing, and if you let them help you will get better.
It must be hard to trust people when it feels as though they're not listening to you and don't understand you. The trouble is that when someone asks you the same question over and over again, and there is no answer to that question, it becomes difficult to know what to say to him. I think that might be why you feel that the clinic doesn't want to help you. They do, but there are some things - such as knowing what will happen in the future, or exactly how fast the medication will start to work - that they just can't answer.
You say the doorman's wife told you your mother said you need to get help. Well, I think that's very important, that message from your mother, so I'll say it again: if you really want to help your mother, concentrate on getting well. She will feel much better if she knows that you're letting people help you.
That was a very lengthy response. Also no, no one wants to talk to me. The doorman doesn't anymore; he wouldn't come to the door and his wife answered, because the police came to the building after the social worker at the clinic called 911 and told him that they thought I had taken an overdose. He does not even really give me much time at all now. he no longer answers his cell phone when I call him. I was never really that friendly with him, but he was initially very nice to me, he knew my mother for 21 years so he goes to see her a lot. I don't even know the social worker and the nurse practitioner. I really don't, and they aren't helping me. Before my mother's stroke I had only gone to this clinic a handful of times. I was ready to stop going. I felt it wasn't helping me.
I just now went over to the nursing home and dropped off a card and some flowers. I get really depressed just going out. It's winter time, I keep thinking about my mother. I'm sorry, I can't stop thinking about her.
I could have a heart attack and have been lying here dead for the past two months. I have absolutely no human contact. None whatsoever. I don't know what to do. I keep saying that, I don't know what to do.
The Samaritans emailed me again. I have emailed them so many times since October 5th when my mother had the stroke. They thought my mother was talking to me at last. Any volunteer from 200 branches can answer your email, and I have had a lot of emails, one time I think I sent at least 10 in one day. It takes 12 hours to respond.
I hate typing into this little box; I can't see what I wrote more than a few lines up.
My mother won't see me because of my brother. That's it. Please help me;. I can't take not talking to her. I can't take not talking to anybody. I could be dead on the floor for months. No one is here. There is no community. I am going crazy. My brother is controlling my mother. She's too sick to make a decision for herself about me.
I am not saying that there is nothing wrong with me, not that at all. I just don't know if I need to take antipsychotic medication. If she would see me and she wanted me to, I would. I would do anything for her.
No relative has visited, no friend has visited in this apartment since October 4th when my mother had a stroke. I have not turned on the tv or radio or read a paper or book or listened to music or gone out of the apartment. I think I did my laundry one time. I didn't try calling the nurses station at all today. I am going to try calling again. I don't know what else to do.
The telephone has not rung in months. It does not ring anymore. What do I do? I sleep as much as I can. I write letter after letter to my mother. I don't know what else to do. I don't send them. I am going crazy. I am going literally crazy. The first few days I spent so much time in the hospital. I was so very tired. Then my brother stepped in, and before I knew it they wouldn't let me in the door at Jamaica Hosptial and then when she was transferred across the street the same thing happened.
I am sorry she gets upset when I go, or got upset that one time. I haven't had a haircut in 2 months. I don't go out to do laundry or buy food. I can't believe this is happening. Why won't she talk to me? I think she told me I had something to do with her having the stroke. I caused her blood pressure to rise and that made her have the stroke.
I don't want mental health housing. The case worker from the clinic called. I don't want to talk to my brother. I'll go into a shelter. That's it. I don't care anymore. I want to see my mother and he is keeping me from seeing her. it's as simple as that. I don't care what happened in the past. I could play for you the message she recorded right before she went to the hosptial for the stroke. She wanted me to come pick her up. I could play it. I could give you my telephone number and you could hear it.
I might as well just turn off the phone. My mother is never going to call, and I don't want to talk to anyone. My brother said I'm putting you out, let him put me out. He has the keys, I left them in my mother's jacket when I brought it back to the hospital.
Sorry for the long email. It was depressing going to the hospital, walking past the front of Jamaica Hospital where she walked out after that first night. I went over there by subway to see her all that first week when she was in the hospital. And then my brother had a visitor list left at the security office and I couldn't go up. They don't even have me down as one of her relatives. If something happened to her I would not be notified. I just found that out yesterday, when I called the social service office at the nursing home since the social worker was out. The director wasn't familiar with my mother's case, and looked at the file I suppose, and told me my name wasn't on the cover sheet. He's taken over. He threatened to call the police on me when I went to the comprehensive care meeting which I received a notice in the mail about, he claimed I was harassing him by calling him too much on the telephone.
Thank you for getting back to me. And maybe this clinic isn't so great. And I can't afford to go anywhere else. My brother said that I can't support myself on what I make at this job. So what am I supposed to do.
You need to go back to the clinic, for your mom's sake.
I can understand that it must have been depressing going out and walking to the hospital and not being able to visit your mother. The situation you're in is sad, and it must be very upsetting. The question is, how can you make it better? No one wants you to give up. The social worker from the clinic called you because they want to help. You say you don't want to talk to your brother: has he tried to contact you, then? The Samaritans emailed you: what did they advise you to do? Most important of all, don't forget, your mother wants you to get help.
This is where it ends up. There are lots of people who are standing by ready to help you as soon as you agree to it. So. You ask what you're supposed to do? That's what you should do. Go back to the clinic and ask them to help you, starting with a care plan.
You probably know there is no cure or treatment for Aspergers BUT the things that go along with it like anxiety and depression can be treated so you can enjoy a more peaceful life. These medications take several weeks to be effective so you need to give them time and maybe try several before you find a good fit. By any change did you get divorced 17 years ago when you came to live with mother. If there are any children and you have contact with them advise their mother to have them tested for Asbergers. I don't know you or how you sick you are but you are obviously not able to function without supervision so a gruup home may be the best permanent solution for you. Your brother is a well paid lawyer and highly intellegent as you are but sees you as a looser hence telling you "It's over" he thinks the stress of managing your care has contributed to her illness and he wants to protect her so she can get well. It is not your fault it is the disease and the only way to move forward is to let others help you. We do understand your predicament but also know the stress of caring for someone like you puts so much stress on the caregiver. So please get the help that is out there for you. Understand people here do understand and have given you all the advice we have now you are the one to take the next step. once you let someone else take charge it will be a great relief. once your mother and brother see you behaving calmly and being supervised they may relent and allow you to contact your mother. You have had inpatient care before so you know what it will be like so accept the restrictions of a mental hospital and let them take charge and play your part to get better just like your Mom is doing. She is working her heart out in rehab and following all the instructions she is given. now is the time to show her you love her enough to do what you need to get well and become independent. this is the greatest gift you can give her right now. the first step is the hardest but relieving Mom of the worry about you will help her get better a lot faster.
Thank you all for your sympathy.
I hope you are not having any expectations that your mother will come back to the apartment and/or that you will be able to help her once she is released. I don't think that is going to happen, Scott, as much as I am sure you would like it to. Your brother is much more likely to allow you to see your mother if he sees you not upset, and building your own life - doing a good job of looking after yourself. You can't look after someone else until you can look after yourself.
People here do care. Hope you have a good night.
Thinking more generally, and sorry to ask repeatedly but it is important, when are you next due to go to your clinic appointment? I'm not generally a big fan of talking therapies, but given what you're going through, which is quite like a bereavement, I think you should ask to see a therapist for regular sessions. That's not instead of antidepressants, it's as well as antidepressants. Are those the only medications you've been prescribed, by the way? Why did you stop taking them? Is it because you didn't find them helpful, or do you have any other worries about taking them?
It's very nice of the doorman to agree that you could go with him and wait downstairs while he visits your mother. But I wonder whether, instead, it would be better to ask him to take her a card from you, and wait at home. Maybe he'd be happy to come to see you when he gets back from the visit to tell you how your mother is getting on. I just wonder if you would feel even more upset if you'd walked all that way to see her and still couldn't go in or speak to her. If you wait at home instead, she will still get news of you but there won't be any possibility that the visit could go wrong.
Anyway, I hope you'll hear good reports of how she's doing. Keep checking in here because we do care what's happening to you.
It's important for you to work, to eat regularly, get haircuts and other boring things like showers and toothbrushing.
As important as all those things are, taking care of our mental health is important too. You want to be able to stay on an even keel so that you can eventually go visit your mom calmly and without undue upset to either of you.
Sometimes, we are not the best judge of our own mental health. Those of us responding to you here have a lot of life experience, and we are ALL telling you that from the tone and content of your posts that you need to go back and be seen in your mental health clinic. As CM says, you may need some talk therapy in addition to medication right now. Please go there and advocate for yourself.
PS The doorman is right - your mother does care about you. She'll feel better if she knows you're taking care of yourself.
Do any of you know about the medication that could have been given in the er? Its called tpa, and it is also known as a clot buster drug. It has in a lot of cases reversed things like paralysis, which according to the social worker my mother may now always have.
My brother called twice and didn't leave a message. Why doesn't he ever leave a message? The phone never rings, no one except him calls now.
Well I just called the room phone and a mans voice answered and I hung up. I was afraid it was my brother.
The past is over and no amount of hindsight is going to change your mom's condition
You can't talk to your mom right now because of the precarious condition of her health. She needs all of her energy to focus on recovery. She has no energy left to explain things to you or to reassure you.
Your brother may well be trying to contact you. your case worker is trying to contact you. You need to accept help right now from sources other than your mom. She cannot help you now; she needs help herself and nothing anyone can do will change that. You need to look forward and not back.
Call your caseworker tomorrow and get started on the process of figuring out how to manage this crisis.
It isn't, either, that anybody would think you might intend to upset or tire her. Of course you wouldn't. But because you find stressful situations very hard to deal with, that stress would get passed on to her even if you didn't mean that to happen. I'm sorry for how hard it is on you. The only good that can come of it is if you use this horrible experience to improve your own independence. I think that if you reach out and ask for help, you could do that. You're already keeping a job. You have been managing - not easily, I know - on your own for two months. You can do this. I'm just sorry it's so hard for you.
Don't you want to know what your brother wants to say? He's a bright man (you can always ask him not to patronise you, please, if he does) and he might have some useful information for you. Next time he calls, just answer. You can always hang up if you don't like what he's saying.
And as you accept it, realize that your "madness" is part of grieving. You have lost the one person you could count on to take an interest in you, you provide you companionship, to take care of you. Your mother is no longer able to fill those roles for you. I sincerely join you in hoping that she improves a lot. But she will never play those roles for you again. That is sad. That is a tremendous loss. Since your mother has not died, others may not recognize what you are going through. One therapist calls it "ambiguous loss" -- when a person has not died but has stopped being the same person because of things like stroke or dementia. Loved ones definitely go through mourning, but may not get the social support that loved ones get after a funeral. It is hard. There is no shame in getting some help from professionals.
The people on this site who have been responding to you do understand your loss. You know who else would understand it? The social worker. PLEASE do not avoid the few people who have insight into your situation and are willing and equipped to help you.
This fall I went on a bus tour of the type my husband and I went on together several times. It was a great tour as always. But my husband died two years ago and it was sad to remember doing things with him that I was now doing alone. I can understand that it is painful to see the residents gathered for the tree lighting and your mom not there. I can really relate to that pain. You need someone on your side, who understands what you are going through and how painful it is, to support you.
And in your case you also need practical and immediate help to find a good place to live, and to reorganize your life and your care without your mother in the picture. Ordinarily a person in mourning has some time to grieve before needing to get on with the practical matters of your life. Unfortunately you don't have that luxury. I am very sorry about that. But you HAVE to find a suitable place to live.
I hope your next post will tell us you have talked again to the social worker. We can only sympathize and encourage from afar. You also need someone nearby to help you. Please start with the social worker.
My cousin called yesterday. She's very upset that I kept calling my aunt. She's 82 years old and wears a pacemaker. I go to this job and try to call her, my aunt, my mother's friend. The social worker at the nursing home. Everyone will put blocks on their phones. My mother I won't even ever be able to see. Or know where she is. I don't want to leave here. I am avoiding any other thought. I don't want to be taken care of by the state. I wish there was a computer at work I could use to talk to people on this board. My father gave me everything. he gave me an apartment for over 3 years. A studio in forest hills. I could go on and on with all the things he did and gave me. How much money he spent on me. My brother could tell you, or my mother.
I have to leave now. This is so upsetting. I have no one to talk to. My brother won't let me talk to my mother. He lies and says she doens't want to speak to me. It's because of him. I can't even remember what she said 2 months ago it was so long ago. Or how she looked.