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.
I just wanted to tell you I am so sorry for what you and your family are going through. Its very hard to let go I know. I have had you and your family on my mind since last week and I just want you to know that you are all in my prayers. Please know you can come here for support or just to vent.
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?
Oh (((Pam))), You didn't kill your mom making that decision, you eased her passing into the next world. She is not screaming at you for letting her die, she is probably relieved & comforted beyond belief that you are letting her die.
Sometimes those dearest to us have such a difficult death because they just can't let go. They feel so responsible for the family all gathered around them cheering them on encouraging them to live because they can't accept the dying process... dying is a natural part of life & it's so wonderfully kind & compassionate of you & your family to let your mother pass comfortably instead of fighting it. She'll always be with you & watching over you... your a wonderful daughter.
My best to you, your family & your dad. I pray that your mom has a comfortable & peaceful passage & that you all are able to comfort each other through this difficult time & realize what a precious gift you are giving to your mom..
My thoughts and prayers are with you and your family. Have you had a chaplain involved with your family? Usually the hospital has a chaplain. Please have the unit call the chaplain so they can be with you.
When you look back one day on your decision, you will feel good about it. Your under alot of stress right now and your feeling torn, thats a normal reaction. But down deep in your heart you are making the decision that you know is right. Any dialysis , as you know, would never benefit her now.I have been there with patients in that condition when dialysis was started, and it never helped. If anything it made things worse.You be strong now cause your doing whats best for your mom :)
We took mom off the vent Friday and Dcd the feeding and do you know that as of this post she is still hanging in there?!?! She is pretty comatose, opens her eyes but doesn't focus and her BP is in the 80s but she is still with us. Well, her body is still with us, I feel like she was gone for a while. Somehow I feel more comforted knowing that now it is in God's hands when she dies. We aren't just keeping her alive anymore. Somehow, dumb as it sounds, that makes me feel better. Course, now I am paraniod about the fact that we Dcd the tube feedings too. I don't want to feel like we are starving her to death. But her nurse said that she wouldn't be feeling hunger, and if they restarted TPN then they would have to go back to blood tests and finger sticks. I don't think she will survive to the end of the week. I had to come back home because I have my 11 year old son to take care of. My brother went home yesterday too. My dad still has his two sisters there who will help him, so he won't be alone. Do you think it is ok to leave her off of the tube feedings? Her urine is rust colored but is still coming as of this post. Mom is still really yellow though. My brother kept asking me when it would happen, but I don't have the answer to that. It's frustrating, but medicine isn't an exact science so there is no way to tell when it will happen. I am glad to be home. I missed work over the weekend and because mom didn't pass away, I guess it will not be considered excused. I guess I am too weary right now to care though. Thanks again so much for all the support and comfort I have recieve from everyone here. It helps so much to feel like I did the right thing, even though it hurt so much. I'll let you all know when mom passes away. Thanks so much for your prayers and thoughts. I know you don't know my dad, but send a prayer his way too, he is taking this really hard. Being married for 55 years, it's so hard for him to think of facing life alone. It really kills me to see him cry.
It is very hard to see someone we love cry. And harder still to let someone go that we love.
Of course you feel better, Pam, that's not dumb at all. Medicine is wonderful if there is hope for a decent physical life. But medicine is horrible when there is not that hope.
It does sound like your Mom is working very hard. Married 55 years, raised some kids, saw a lot of changes in the world in her life--she is no stranger to hard work. But this doesn't mean she is fighting anything. It means that she is doing dying the best she can. It seems right to me, when I read your posts, that you have helped do that as cleanly as possible.
A deacon I knew once said that in birth, no baby slides right out with his mother not knowing it. It takes a lot of work, and that baby almost seems to fight coming. Who wouldn't? The baby doesn't know what's out there--it's reasonable not to be in a great hurry to get there. And so it is with dying. We really don't know, regardless of our faith or belief, what's out there in the next place. And so we are afraid, and we fight it, and we work hard against it. But, like birth, death is inevitable. What we forget is that, like birth, death is the entrance into a new understanding, a new place, with all the potential for joy that this one had.
I don't want to intrude with my own philosophy here, but sometimes I am comforted in loss by the belief that it is the beginning of a temporary separation.
Pam thank you for choosing to share yourself and your family with us. I know you know you are loved and cared about.
As to the job situation, tell 'em and let it go. If they cannot understand this, then when things settle down maybe it's time to look around and see what else is out there. But for now, maybe the safest, best thing for you is to smile, nod and get on with work and the day. I don't know about you, but I never fight a very good fight with one emotional arm tied around my back.
Pam, my husband died last week from cancer, so I fully understand how difficult this is. He developed pneumonia at the end, and when he could no longer swallow, the doctor refused to put him on IV antibiotics. Despite all my palliative care training, I had a very, very hard time with this. Later, I realized just how right a decision it had been. He died that very same day.
Hugs to you and your family at this difficult time!
(((((((((((((((((((((((Big hugs to you too Jay Jay))))))))))))))))))))))
My mother passed quietly away this morning. My dad had been staying with her all night every night and had just fallen asleep when her nurse woke him up and told him that she had passed away. She had been steadily declining all week and last night her pulse was down to 36 by doppler. My aunt called me and told me; you would think I would be expecting it, but I guess it still hit me between the eyes. I don't have a mom anymore. I called the nurse's station and spoke to mom's nurse to see how my dad was doing, and she said he was doing ok. She asked me if I wanted to talk to him, but I told her that I better not, since I was a total mess. I didn't want to upset him any more than he probably already was. He called me later today and told me that he was handling it ok, but still had periods of breakdown. The funeral is going to be next Tuesday so everyone that is coming from out of town will have time to get there. I have to work this weekend anyway, cause I can't afford not to, so I will go down Monday. My boyfriend is going with me and so is at least two of my sons. I don't know about the oldest, he may have finals that he can't get out of. Sorry to be rambling. I just wanted to thank everyone who has been so caring and supportive of me. You will never know how much your kind words meant to me. Hugs to you all!
moonchild20002000
288 Posts
I just wanted to tell you I am so sorry for what you and your family are going through. Its very hard to let go I know. I have had you and your family on my mind since last week and I just want you to know that you are all in my prayers. Please know you can come here for support or just to vent.