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I have been asked to respond to the recent comments I have gotten on my blog entries, so I will do so here.
Comments: Moody MAY 8 2007
You are NOT required to be a full time nurse for Joe. He needs outside help. It's just a fact. What are his finances like? Has he prepared somehow for this? Are any of his family helping with the cost of his care? My God, Pam, I'm amazed by all you do for him. I couldn't do it. I'm thinking about volunteering to help a disabled person in my area, but that would be ONE day a week not seven days! And you DO suffer from schizophrenia. It's not like you're all hale and hearty yourself. You NEED time to yourself to relax and to work on your writing. And I do miss your poetry! You have every right to be angry. If Karen is so willing to help Joe, then let her. She doesn't suffer from mental illness that I know of. I think you've been doing so well for many many months now, no hospital. So don't jeopardise your health for Joe's. I can't believe he would want that anyway. Being a caretaker is incredibly draining on anyone. I remember being with Brendan while he was so sick physically and emotionally all the time. It was a nightmare. You absolutely must demand a large chunk of time to yourself every day. I'm glad you told Joe you couldn't go with him to his doctor's appointment. He has to take responsibility for getting the care he needs without using his friends. I think it's time for you to write out a Bill of Rights stating what you're willing to do and what you are NOT willing to do in the months ahead. Once you've made it clear to yourself then read it to Joe or give him a copy. It's writing that makes you most happy. Writing every day is necessary therapy I believe and shouldn't be shirked. Why can't Joe and Karen respect the fact that you are a writer??
Posted by Kate K. at May 9, 2007 01:25 PM
I agree with Kate.
Do you have your own therapist? Or just Dr. O? I don't seem to remember you talking about a therapist in here. How often do you see Dr. O? I feel you may benefit from therapy, just a thought.
Have a good night and be well.
Posted by Christina Bruni at May 10, 2007 07:22 PM
Dear Kate and Christina, and everyone else who reads this blog,
Thank you for your comments. THey do help and in fact I print them out and paste them into my journal each night, so do not think they go unheeded! Joe's finances are quite good, he has a large special needs trust to draw upon and his mother who freely administers it at 87, gives him whatever he needs, though he bears her such animosity that he yields her no credit for this and is certain she might take it away at any time. To explain, she was poorly equipped to be anyone's mother, but least of all of a possibly Asperger's syndrome child. She seems to have been largely neglectful and did the bare minimum necessary for him, though he also resents her for things that had to do with the fact that they lived on $35 a week of child support and couldn't be helped. These days though, she continues to be oblivious to his illness and it is hard to tell why. She insists on visiting without any warning, which infuriates him, and she fills his refrigerator with food for him, even though she has been told he cannot eat and has seen him with the g-tube in his stomach and the kangaroo pump feeding him through it. I wonder if she isn't a little senile, but he says she just finds it convenient to forget what she doesn't want to acknowledge...I dunno about that. But I no longer argue, it's of no use. Joe won't listen to reason about his mother. I have never met anyone so impervious over the decades to changing his thinking about his parents, so relentlessly unable to move on or forgive or understand or at least accept their foibles...But he is who he is and I can't change him so I don't try to change his mind anymore.
Anyhow, he has quite a bit of money, but is also very frugal, not to say stingy, and doesn't like to spend it, though has to now that he has medical expenses that are not covered by Medicare. Not as many as you'd think, though. So far, he is only using the interest on the total amount of the trust!
As for family, he is an only child and his father, long-divorced from his mother, is dead. He has many, many cousins and uncles and aunts (the latter in their 80s) but they do not freely or willingly come to him and pitch in. They may offer their help, from a distance, but Joe tends to turn them down, not wanting to discommode those who have responsibilities already or families they must see to first. I tried telling him that whole families can get involved, but no, he won't even call his favorite cousin, also "Joe", though he and his wife have offered to help. And even they don't call him often or in any active way, except to take him out to dinner once in a rare while. Cousin Joe may offer his services then, vaguely, I dunno, but if he does, Joe always turns them down. I don't know why, but apparently he either thinks he doesn't need any help or that Karen and I can do it and we do not have the responsibilities that his relatives do...
Karen supposedly has bipolar disorder, though she herself has told us that in getting social security disability she was informed that she'd not get it for her mental illness, it was too mild, only for "physical disability" -- so take that as you will. I myself have seen no signs of anything but a somewhat demanding, hyper-assertive very competent and capable woman in Karen, no indication of either mania or depression, so far at any rate. She says that she hasn't experienced either in years anyway. So, so much for that. I do know that when, the few times it came to pass, she was hospitalized, the nurses always told her it was unnecessary, that she should not be there, that she didn't need it. But Karen is somewhat dramatic too, so I think that plays a bit of a role, perhaps due to manic tendencies?
Chris, I meant to tell you that Dr O, despite being a psychiatrist, is my therapist. My twin sister, a psychiatrist herself, wants me to see an MD for therapy and so she pays her fee and I see Dr O once a week for an hour (such as a therapeutic "hour" is). If anyone is worth the money, she is. As a "double major" i.e. with both MD and PhD and a second specialty in Sleep Medicine, I couldn't have found a better psychiatrist/therapist in theory, and in practice I have found her to be the most compassionate and smartest doc I have ever been treated by. She seems as trustworthy as can be, though I have trouble trusting anyone, including her. Also she is one who doesn't transgress boundaries, which I have had problems with doctors and therapists doing, always always always to my detriment because I end up taking care of them! That's why I am wary about getting personal information from or about any therapist or psychiatrist. To my great relief, she doesn't share more than is necessary or than I absolutely want to know. We don't do a lot of digging up the past or figuring out where "things came from." Rather, we talk about what has happened during the week, my state of mind, what I've accomplished, concrete things, as well as how I am feeling and doing. Often she explains the brain to me, and tells me what symptoms are and where in the brain and why they occur, both psychologically and physically (an approach I instinctively appreciate as it doesn't blame anyone). And she reiterates it patiently and without annoyance when a symptom comes up, repeating the shorthand I remember but only sometimes understand: The feeling is primary. I keep misunderstanding that, or forgetting it, and even now I am just repeating meaningless words, but at least I know the mantra and can ask her next Wednesday what it means. Does it apply to the stolen lemon curd and soynut butter (which was taken by that abusive alcoholic ex-friend I'm pretty certain, cuz she can see my window at night and knows how zonked I am on Xyrem and would do something like that if she were hungry and not tell me...I barred my door last night with the laundry cart and rigged up an "alarm" -- did I write this already? -- with pots and pans balanced just so. If anyone so much as put a key in the lock, the pots and pans would fall with a crash and wake me instantly. And in fact, they did! At around 5am. You say it might have been the cat? No. It was NOT the cat. I remember distinctly that the cat was sleeping with me. As I flew out of bed to the bedroom doorway and looked out, I Eems stood right next to me, her back arched! But the lock was still turned the right way. And no one was inside, no one was at the fridge. No one was even turning the lock or coming in. I think the intruder ran away when she heard the commotion. So the alarm worked! So Chris, I got off track there, but I hope I've answered that question. I know you have more so I'll go paste those here and answer them too.
omments: Sacrifices MAY 9 2007
Please please consider that what you've written is not reality. You are not evil, and you have written in previous posts that you understand and accept that you are not evil. You are just going through a difficult, stressful time now which is distorting your thoughts. Pam, I am so afraid you're going to end up in hospital again if you don't create some boudaries. And, think about this...if you go in hospital, you can't help Joe at ALL.
Much love, Elizabeth
Posted by Elizabeth Grace at May 9, 2007 04:05 PM
Pamela! Elizabeth is very right, what you're experiencing now is not reality. Think about it, a part of you knows that you can not take care of Joe the way you would like, NOT because you are evil (you make me crazy when you say that!) but because you are human and you suffer from a serious mental illness. I know you love Joe and you don't want him to keep getting more ill, don't want him to die but his illness has NOTHING to do with you. Your illness is just telling you that you've got to make some changes, i.e. take care of yourself first either that or you are heading back into a deep psychosis and back into the hospital. The symptoms you're experiencing: feeling like you're evil and have to become a saint to atone and the mystery of the missing lemon curd, are classic symptoms of schizophrenia. You are one smart woman, infuse reasonable doubt into your psychosis and you can find a way out of the maze. I know you can do this. I care about you Pam. My eyes are tearing. You think you're evil and I think you're not only smart and talented but a good, kind, considerate person. You have to tell Joe that your schizophrenia is flaring up due to the stress. It's not your fault. It's not anyone's fault. It's the nature of the illness. Schizophrenia and stress do NOT go together. So, practically speaking, what can you do to start lessening the stress as opposed to increasing it? For one, you should see Dr. O as soon as you can. Good for you for sending her that letter. And keep posting! I'll be checking in each day. My love to you.
Posted by Kate K. at May 10, 2007 01:36 AM
I TRY to consider that possibility, Elizabeth, but now KAREN is sick too! Doesn't that prove I am evil and infect everyone close to me??? She may have a blood clot in her leg and is being admitted to the hospital even as we speak. At least, Joe and she rushed off, without even taking my cell phone, saying they were going to Admitting, not to the ER. So I assume she will spend the night in the hospital at the very least. I don't know exactly what a blood clot means in terms of consequences or dangers, but I know that Lynnie worried about Joe on the airplane getting a blood clot in his leg and having it cause pulmonary thrombosis, a life threatening condition. As I asked yesterday, Will I ever stop causing harm to people?????! What to do? What to do?!
Kate, I immediately took your advice and wrote Joe a brief email, telling him I was in trouble, relapsing, even though I try to put on a good front and not let him or Karen know. He usually doesn't open email until Saturday, as he hates the stuff, finds it overwhelming, but either he opened it early or he picked up on something this morning as, as soon as I came downstairs -- we were all going to his new neurologist's appointment and then Karen and I would wait while he saw S, his therapist in the same hospital building -- he asked, not typical of him, How are you feeling? I said, Fine. But didn't look at him (I can't look at anyone right now, too scary: I might cause damage and they might read my mind) only at his mouth in order to try and understand what he said out loud. Karen came in then and told me to move over on the sofa as she couldn't get to the other side, there was too much of Joe's stuff blocking the way. I moved. Joe continued, not letting the subject drop, You look drawn. I didn't understand him, but Karen did and repeated it for me. I'm okay, I said.
"Have you been sleeping?"
"I'm still worried about who took my lemon curd. I can't get that off my mind. It is --"
Joe smiled a bit, but not meanly. "I know, I'll buy you a new jar, so you can start with a full jar and won't have to worry about a half eaten one. Soy nut butter too."
"Joe, it isn't the lemon curd per se. It isn't the food. It's the, what's the word?"
Karen spoke up. "The violation."
"Yes, the violation."
I wasn't sure Joe understood that, but he kept at me, wanting to know what was wrong and if I would be okay. I frankly couldn't talk much, not in front of Karen and felt too confronted. Taken by storm. Didn't know where it was coming from, Joe or my e-mail. So I was glad when Karen interrupted and said we had to talk about questions we wanted to ask the neurologist before we got there, did anyone have suggestions?
Later on, after we got home (we'd made a mistake, or Karen had, the appointment was for JUNE 11! And Joe's therapy appointment had been cancelled, so we went there, a half hour trip, for nothing) Joe called, asked me to come visit him. We had just started talking about getting a real, professional door alarm for me, when Karen burst in the door and said, I have a problem...and that was when she told us about suspecting she had a blood clot. I wanted to reassure her, knowing something about what to look for, and asked her symptoms. But she only snapped, "Oh Pam, I don't have time! C'mon Joe, we've got to hurry!" I felt hurt by this but knew I deserved it, having caused it, so I went sadly upstairs and called Joe, after I knew they'd left. I left a message asking him to call me when he got home, tell me what transpired, how Karen was, what was wrong, what they'd found etc. Anyhow, to make that above story succinct: Yes, Kate, I did tell Joe, who I imagine will tell Karen. I don't know that Karen will care, though, or be anything but annoyed. It's Joe she looks out for and is committed to, not me. Now, though, all bets are off as to her reaction to me in general. If I made her have pulmonary thrombosis, which is more than likely, given my ill will towards her, all bets are off as to whether she will even speak to me! Who can blame her????
May 11th Exchanges plus Later Addendum
Thanks for posting today. Please keep posting each day. Okay, stick to the basics: take the meds (including the Haldol), it's VERY important that you get plenty of sleep, try to keep eating, don't isolate, tell Joe and Karen that you are relapsing due to stress and that you need their support, make an emergency visit to Dr O., keep writing, keep making jewelry. I hope you've had your lock changed and please do keep your door locked Pam. As best you can, try to feel safe--listen to relaxing music, watch an upbeat movie. This may sound silly but make a gratitude list when you feel most oppressed or frightened--food, shelter, clothes, Eemie, your writing, your jewelry, a hot cup of tea anything and everything you can think of. If you practice this it will help to change the balance from negative to positive. I know you're unhappy right now but this is temporary. Believe it. And attack the problem of fear and guilt with positive behaviors and thoughts and attitudes. Don't give into a negative world view. It's an illusion no matter how real it feels.
I will email you tomorrow. But remember, keep posting!
Posted by: Kate K. at May 11, 2007 01:29 AM
Please know that we care about you. I hope you feel protected with us and are able to just read our words and consider them.
At this point, it doesn't matter what exactly happened to the lemon curd, who did what or who didn't. What's more important is your response to it, and if you are still at the point where you can choose your response, I want you to let it go because it would benefit you to let it go and not keep the upsetment in your body and brain.
Pam, I care deeply about you, and about everyone living with schizophrenia, so much so that when I retire at 55, I'm getting a job as a peer advocate or job coach.
It could benefit you to rest and relax. I feel things have become triggering for you. You have done too much for too many people without getting much of anything in return.
I feel you could use the support of a therapist to set some goals for yourself and plan simple objectives for the day, week or year. One good plan is always to try to stay out of the hospital.
We care about you. I care about everyone haunted by this disease. I feel you need to see a therapist. I would like to see you write a response to our comments and let us know that you will at least consider them. Certain times of the year could be triggering for you and I hope you will at least consider our suggestions.
Posted by: Christina at May 11, 2007 03:43 PM
I do take your advice and suggestions seriously. Not all of them work for me, but I think about each one. I think it is important to find out who stole/ate the lemon curd in order to get it off my mind. I don't see how I can without that happening. I believe it was M--- but I need to know for certain! I may wait up tonight to see if she tries to get in again, let her actually get in, without the "alarm" set, then confront her with what I know. It may be the only way!
I set daily goals or at least make out a schedule with Lisa, the morning med nurse, and she and the night nurse Ana have decided to have me eat something while they are there, to make sure I get something in, though it might be only a yogurt each time. I'm eating some baby carrots as we speak and I had some black olives in oil and frozen red grapes earlier. I took both doses of Xyrem last night, but unfortunately only slept from 2:45 until 8:00 am with a waking in the middle when the pots and pans crashed to the floor. I dunno what else I can do, frankly. I try not to obsess on my essential (as in my essence, my soul's) evil, but it is hard not to think about it when it's overwhelming me and things are happening like Joe's possible bladder cancer and Karen's blood clot...God, what more harm can I do than I have already done???? Plenty, there are too many people around me to make sick! I should stay away from everyone! Instead I am going to see my mother on Mother's Day, not a good thing to do, except that not knowing or understanding why, she would be upset with me if I didn't come, so I'm damned if I do and damned if I don't. Since I deserve to be damned, I fully deserve that state of affairs!
Posted by pamwagg at May 11, 2007 02:36 PM
I think I missed a whole lot of comments, since I know there was one by dfinn somewhere (Sorry sorry sorry, Debbie) and another from Kate, but I can't seem to figure out where. Anyhow, I'm tired and need to rest and want to write in my journal and want to go see if Joe and Karen or at least Joe is home to tell me what was wrong with Karen, so I'm going to stop here.