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Incredibly Frustrated



Dan's still in the hospital and not much has changed. We're in the middle of an ice storm so I didn't make it to the hospital today and probably won't tomorrow.


The GI doc yesterday said Dan has Toxic Megacolon. I googled it and it kind of scared me. Basically it means that the colon is distended and nothing can pass. It can be life threatening and frequently results in a permanent colostomy. When I called Dan he said the doc had been in to see him. He said she told him they didn't know what to do and that he was depressed and needed some Prozac. Duh...he's in a hospital and doesn't understand what's going on other than he doesn't feel any better than he did when he went there. He told her he doesn't want Prozac, forget the fact that he's already taking Prozac and never remembers he's taking it. Well, I lost it. I left a message with the nursing desk that I wanted to talk to the doctor. Heard nothing for an hour and called back, really angry. When I get angry I cry, I HATE that in myself, but I've been that way all my life. The nurse called back and said nothing had changed and she didn't understand why I was so upset. I insisted on speaking to the doctor.


The doctor's nurse called me back. I told her I was incredibly frustrated. I get one story from the aides, one from the nurse, and a different one from the doc. She said the doctor should be my point of contact not the nurse or the aides. Well, I lost it again. I've left numerous messages for this doctor to call me and, to date, have never received a call from her; therefore, how can the doctor be my point of contact??? I explained that, because of Dan's stroke he sometimes has the mind of a 65 year old and sometimes the mind of a 4 year old. Her response was that the doctors always talk to the patient and that Dan didn't seem confused. Well, I lost it yet again. He doesn't seem confused but he can't remember what he had for breakfast an hour ago or if he had any BMs today or, well, you get the idea. I was finally told that she would leave a message for the doctor to call me tomorrow.


I don't think I'm being unreasonable. I know I sound like a hysterical lunatic, but all I want to know is how is he doing and what is their plan. I'm very concerned that since he's been in the hospital almost 3 weeks they'll send him to a nursing facility.


I saw our new family doc yesterday. I really like him, he spent almost an hour with me, reviewed my meds and medical history. We discussed Dan a little and, emotional wreck that I am, I cried. He asked me if the Zoloft was helping me. Through my tears I said yes, then caught the irony of the conversation and the point he was making. He doubled my Zoloft and said he wants ME to feel better and good about MYSELF. He doesn't want me relaxed so much that I don't care about anything, but I need to stop crying at the drop of a hat. I'm usually better than I have been this week. I think Dan's hospital stay is upsetting me more than I realized. He also asked me if I felt guilty that Dan is in the hospital. I can honestly say that I don't feel guilty. I feel bad for him, but I don't feel guilty that I'm here and he's there.


On the up side of all of this, I am getting a lot of rest. I've actually sat down and watched TV and read my book without any interruptions. I've even slept through the night several nights in a row. All that said, I'm still incredibly tired.


I am rambling now so it must be time to "Say goodnight, Gracie". For you young folks out there, the 1950's George Burns TV show always ended with George saying "Say goodnight, Gracie" and his wife, Gracie, always replied "Goodnight".

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Mary Jo: you are frustrated and confused and anyone in your place would feel the same way. we cargivers know the importance of talking to the doctors every day and micro-managing our survivor's care. You are stranded at home, the weather is an issue, you can't get a straight answer and the doctor won't call you back. The new HIPPA regulations require the Clinicians to talk to Dan unless he is deemed incompetent, which is not the case and you can be sure he is just as frustrated in not having the right answers for you and is probably missing you.


Take a bath, pour a glass of wine, comfy PJs and relax a bit. Nothing will be done without your approval and Dan is not in any dire danger at this point. If you absolutely must get to him, just call the State Police and they will arrange to get you there, but for now, write out your questions for the doctor tomorrow and try to let it go. You will have to be on deck inthe upcoming days and need to relax and rest in order to focus.


Know you are in my prayers-Debbie

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