I know there are a couple of threads regarding end of life and letting the patient go. I'm on the other side of that coin at this time. Tomorrow we are turning off the vent that supports my mom's respirations. She is 75, has Parkinson's and went in the hospital about 4 weeks ago with a perforated ulcer. Long story short, she got peritonitus, sepsis and is now starting that final decline. The surgeon has said all along that she wouldn't make it out of the hospital, and was looking at months of being in the hospital. She has had episodes of spiked temps, low BPs, and then episodes of seemingly starting to begin a slow climb toward getting better. I was down last week because Dad kept telling me that her lungs were congested. I knew from experience what that meant; she was going into CHF. At that time she would open her eyes and try to mouth words. They increased her diuretic and she seem to improve, so I went home. Well, this past week, my dad called me and read me off her lab latest lab values. Knowing too much the way I do, I knew that her condition was rapidly worsening. A call from her surgeon a couple of days later confirmed my worst fears, telling me that it was time to talk about letting her go; so here I am. Seven hundred miles from home. Yesterday when I got here and went to see her, I knew by looking at her that, as my brother put it, the clock was running out. She's jaundiced, swollen, and, to me, has a farway stare. She will react to some stimuli, when the surgeon took the vent off to see if she was breathing on her own, he told her to take a deep breath, she did; and she seems to respond sometimes when dad talks to her. But, we did "the whole nine yards" with her; let the surgeon trach her, put her on the vent and let the surgeon put a NJ tube in her for feeding. As long as she was able to look at me and try and mouth words, I was ok with that, feeling that she wasn't "gone" yet. When I saw her yesterday morning, for the first time I felt like she was already "gone." Dad told me that the kidney doctor wanted to start dialysis on her which would have required placing a shunt. As soon as I saw her I knew that didn't need to happen, it would be too much to put her through, and wouldn't help anyway. So I convinced my dad not to do that, and when her surgeon came in later, he told dad the same thing and explained to him that she was declining and wasn't going to come out of it, so we needed to seriously consider letting her go. If I had not been there, dad wouldn't have been able to make that decision, but I helped him see that it was for the best. We had them dc the IVs, change her meds to pain and anxiety control only and Friday we are going to have them convert the vent to just a trach mask and let her slip away. My brothers can't get here until then. I feel like I killed my mom making that decision. I know it's right, my head knows it's right, but my heart......what if she is still alert in her mind. What if she is in there screaming at me for letting her die? I guess the moral to this story, don't be too harsh on families that won't let go, or take every little good sign as a sign the patient is improving drastically. After my dad had told me about her declining lab values and I called my brothers to tell them that to start preparing for her death, my dad called me the next night and told me that had opened her eyes and looked at him! So of course, he took this as a hopeful sign and called one of my brothers to share the good news. When I called that same brother and told him that the surgeon had called and what he had said and that I was going down, he was devastated. He couldn't believe that she wasn't getting better since she "responded" to dad. So, sometimes when families don't undertstand medical things, even if the nurses and doctors are telling them that things are grim, sometimes they take the smallest good sign and make it into a hope for recovery. Don't be too hard on them. Sometimes it is lack of knowlege that keeps them from thinking that their family member won't experience a medical miracle. In my case, knowlege felt like a bad thing. Dad could tell me that mom was responding all he wanted, but I knew from the labs, xrays and reports from her nurse (God bless them all) that, in her surgeons word, the dominoes were falling. I hated knowing what test results meant. I hated not being able to share my dad and brother's enthusiam for her chances at recovering. Well now there will be no more lab tests, no more sticking her. She still has a gaping wound in her abdomen and there will be no more painful dressing changes. My head said that it's the right thing to do; my heart is breaking over it. I need my boyfriend here to hold me close but he is taking care of my son 700 miles away. I took off this weekend to be down here, so consequently I am going to be in the hole on my next check because I have no PTO time. I am on weekend option and have already used the few hours I have accured a couple of weeks ago when I was sick. I don't even know when I will get to go home, depends on when she does pass away, and what arrangements are made after that. I am so sorry this is so long. If you recognize my mom as someone on your floor or as your patient, I just want to say thank you for taking such good care of her. Thank you for being patient with me for asking a million questions that most families never ask, and thank you for answering my millions off questions. I feel a kinship with you for sharing information with me, that probably according to HIPPA you might not should have, but it did help me help dad make the right decision. My mom isn't in an ICU, but in an advanced care hospital which is actually just around the corner from ICU in this hospital, so thank you to the nurses, RTs, aides, techs, and anyone else that took care of her from both units. I really feel comforted knowing my mom was taken care of by such wonderful, caring people. I'm sure it was comforting to my mom hearing those soothing southern accents coming from the people that were taking care of her. Again, sorry this is so long.
