May 08, 2007


I've awakened two mornings in a row cranky and irritable, not wanting to get up or see anyone, let alone "do for" anyone, including Joe. I've had one snapping bout after another at Karen, all started by me, and none really deserved except that I am at the end of my rope in terms of the stress I can take and the amount of people contact I can tolerate.

Yesterday, I suggested that instead of my going with him, Joe could see his internist by himself if we simply wrote out "speeches" on his computer for his "voice" to explain his various needs. He does that for his therapist after all, and he also knows that his doctor ignores me completely, does not so much as acknowledge my presence in the room...and I do not have the assertiveness to force Dr I to do so the way Karen does. But no, Karen decreed that Joe was too confused by medical matters, he NEEDED my presence there, there was too much to tell the doctor for him to handle. Joe, by the way, is only 7 years old?

Well, that was the last straw. I raced down to Joe's and started typing in his NextUp Talker program. I wrote out a speech that enumerated briefly all the points that he needed to make, with all the details necessary yet put succinctly and clearly, without unnecessary verbiage. I played it for Joe. "Do you want me to add anything?"

He beckoned me to hand over the computer and started typing a bit, using the index finger of his weak right hand and the full complement on his left. Then he played it. Something came out wrong, a glitch, a misspelling. He fixed it and pushed the Speak button.

"Hand it over," I said. And added something myself, then played it again. Joe nodded, then held out his hands. I put the laptop in them, as close to his body as I could so he wouldn't have far to lift it.

That way we managed to get the speech the way he wanted it, most of it my work, but a few tweaks added by him. During this process we also talked, Joe in his garbled, nearly unintelligible way and I, trying to figure it out, repeating what I thought he said for corroboration before answering. I must have mentioned that I was awfully tired, because when I asked if he could go to Dr I's alone, he slowly typed, You are tired? Yes, I said. I'm pretty tired. Then he nodded that he could go alone. (It turned out that just as I suspected, the visit went fine and he got all that he needed -- all the records were sent that needed to be sent, all forms signed and all prescriptions written, thanks to the "speech". The real problem was not that he couldn't go alone but that he was afraid to go because he was leaving Dr I. He needs a more local one and Dr I is not nearby nor available enough and Joe was fearful of telling him.)

I felt like I'd won a battle but committed war crimes in order to do so. Why didn't I simply go with him? Because he has kept this doctor for years, despite the fact that every appointment is for 4:00pm yet no one is taken in before 5:00pm when the doctor actually arrives and Joe usually isn't seen until 6:00pm, at which time Dr I gives him 5 minutes tops. This even after he developed ALS! I was disgusted by this sort of treatment and said so, but Joe did nothing about it and kept going, largely because he doesn't want to change anything or rock anyone's boat. As if this would rock Dr I's boat! But Karen, of course, managed to talk him into changing doctors, since she has some influence over him, where I do not and never have (he never pays any attention to what I suggest, as I have long lamented). And so, by a roundabout route, he now just happens to have MY internist, known apparently for his caring and lengthy appointments (unknown to me), with an office right next door.

Where was I? I was speaking of my bad mood. Of the war crimes I committed in not going with him. Of how I felt worse when I didn't go than if I'd simply accompanied him. I didn't get anything done instead anyway. Didn't accomplish a thing all day, except for later helping Joe empty several bins of old books and papers, in preparation for getting his living room ready for delivery of a hospital bed in the next week or so.

Then Karen informs me that Tuesday is "our day of the week together" when Joe, Karen and I are supposed to do something fun, like taking a trip somewhere and eating a meal in a decent restaurant...WHAT???!!!! If I could have, I'd have hit the roof. That was fun??? For whom? For Karen, presumably. Joe can't eat, obviously. Though he can have thick smooth soups and eat mashed potatoes, he gets his daily calories through the g-tube (the feeding tube or gastrostomy tube). And I do not enjoy fine restaurant meals at all, hating to waste food as I am inevitably forced to do if I have to order an entree. I bring home whatever is leftover, but usually can't eat it all before it goes bad even then...So why bother? Still, it makes me feel really bad. But more than that, I had had enough of being with THEM and wanted a free day to myself, to solitude, to NOT helping anyone! I wanted one day of letting Joe do it all for himself, which he is still capable of doing, actually, much as he has acted like he can't.

He lets us do too much for him, and today proved it by clearing the living room of his junk and throwing away and sorting out the rest of the stuff he never could part with before. Lo and behold, Joe suddenly becomes capable of doing something when he doesn't have someone to do it for him...Maybe I should have refused to do something with or for him earlier, despite Karen's demands. Maybe Karen ought to lay off and stop doing everything but phone calls for him. Of course, she never did do the dirty work, but laid all that on me!

But my bad mood continues. I gained a couple of pounds -- I am ashamed even to admit it -- eating almost nothing and so I feel HORRIBLE. I feel evil and obtrusive and that I take up too much room on this planet and that I suck up too much air. I don't feel capable of taking any more stress or confusion of messages from people. I didn't sign up for "this" you know...I never claimed to be a saint, far from it, as you know. And I didn't marry -- Joe or anyone else. We were always JUST friends. Karen may -- does -- have no life of her own, she needs to be with someone all the time too much to have developed one. So she may glom onto "Caregiver" as a life-giving identity and be able to give her all to the job (and make me feel guilty for not doing so, not even wanting to do so). But I am/was just beginning to develop a life I enjoyed, a full life, a real life not based in and on hospital stays, when this happened and took it all away. How long will it last? Well, Joe plans to get a vent, a ventilator, and if all goes well, he could live for years! Am I expected to give up my life for his for all those years? Despite my love for him, he is/was never in fact the Love of My Life. He has too much the touch of Asperger's (very high functioning autism) to be that. That is to say, he is too lacking in empathy, through no fault of his own, but nonetheless lacking in it, for me to feel understood by him. And to not feel understood by someone is for me the worst thing in the world: why else would I take such care with language and my writing if I didn't want to be understood? And why would I fear psychosis so much but for its incomprehensibility?

Be that as it may, just because I am here and a friend am I obligated to give my life to Joe? If I were a true Christian, I know I would. I have tried to act like a Christian, unlike most Christians actually do, being selfless and giving up what I want for what Joe needs. I know I should continue to do so, and that even asking these desperate questions is impure and a sign of sin and lack of virtue...I should in fact be helping Joe out of the goodness of my heart, and not as it is beginning to be, unwillingly and partly resentfully, or at least, I dunno, angrily in the sense that I don't like Karen's demanding that I do this or that, while she takes over and decides what she wants to do. And I don't like the fact that he always defers to her. F--K it! I am ANGRY! I may be paranoid about Karen, god knows. I don't seem to have any objectivity about her whatsoever, and so I have to tell you NOT to judge her on what I say about her, or to take it with several grains of salt. She happens to be marvellous with Joe, and terrific in getting him what he needs, and in knowing the sorts of things and services he could use. After all, she was around her mother over the two long years it took to die, all in her care, and she has been in and out of hospitals for juvenile arthritis as a child and a couple of joint replacements as an adult and utilizes the health care system to the max as it is. She knows her way around and gets the best of the best care every time. So she obviously can help Joe out. She is also sociable to the max and while overly assertive and too willing to use her own questionable physical disability to get advantages, she also uses this assertiveness to cut through red tape on behalf of Joe, and outright manipulativeness when that doesn't do the trick.

The point being that my problems with her, which may be more me than her, and the reality of the situation are two different matters.

I am tired. I am tired. I am tired. And the work and commitment has only just begun. What happens when Joe is really and truly disabled? What happpens when he needs suctioning several times a day and care for his vent 24 hours a day? (An aide 24 hours a day employed at $8/hour costs approximately $60,000 a year.) As it is, the sound of his coughing, just the sound, is nearly unbearable to me. Coughing has for years been a sound that is nearly intolerable to me, almost to the point of making me sick to my stomach it is so upsetting. And the sound of suctioning is that much worse. But I bear it, and give no clue to my feelings. If I have to gag or retch I conceal it from everyone, what else can I do?

I don't know what to do. I'm NOT a saint. I'm the opposite, though I wish I could be a saint or behave like one in atonement for what my being, my essence is. I'd like to sacrifice with better grace; at the same time, I don't want to sacrifice the life I only just started to have...But I HAVE TO. No two ways about it. If anyone has any advice or suggestions for me, I'd dearly love to hear from you.

Posted by pamwagg at May 8, 2007 07:28 PM


Hello Pam,

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 Pam,

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

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