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 read this thread in its' entirety for the first time and felt myself going along this heart-wrenching journey with you.
every single decision you made, was made out of the purest of love and the most comforting intentions.
no matter what the relationship, no matter the age, it just pains you to see mom go.
so please accept my sincere condolences of your beloved mother and take comfort in knowing that everything you did was with a gentle, compassionate heart.
I was on the same side of the coin as you just two weeks ago. I received a call that my grandmother (whom I called my nana) was on a vent after surgery for an obstructed bowel. Here bowel was perforated and part of it was gangrenous. The circumstances sound very similar to yours--she had sepsis and peritonitus, and was approaching renal failure. I agree that knowing too much can be a bad thing--I'm still doing pre-reqs for nursing, but I've taken patho and so could understand the doctor's explanation of what was happening, at least better than my family could.
We took her off of the vent and she hung on for about thirty minutes--I can't be sure, it's still a blur. We were in the room when she died. I've never experienced anything like that. It was wonderful and awful, and a privilege, and still a little too much to think about too deeply. I miss her terribly, but I am glad for our decision to remove her from the vent. I'm still in shock, to tell you the truth. Being around the holidays doesn't help.
My thoughts and prayers are with you. The most important thing is to take care of yourself and your father. Be kind to yourselves, experience your grief, and do your best to keep in mind all of the wonderful memories that you have of your mother. Our loved ones are immortal in that they live on through us, at least when we're at our best.
"I don't have a mom anymore." I'm so sorry for your loss, Pam. No matter how much one can rationalize something such as what you've gone through, there is no way that anyone can ever really be ready for it or easily accept the death of a person who means more than the world to you.
I wish for you and your family the strength in the coming days, weeks, and months to face and live with the loss of your mom. In a way, even though it's over, it's really just the beginning of a journey of grieving and healing now for you and your family. May you all find the peace and comfort you need at this time of deep sorrow.
May God be with you and your family. I just got done going thru this with my Mother. Had brain cancer, astrocytoma. She had surgery a year ago April, and fought it very well for 19 months (which I'm told is a record for this type of tumor). We kept her at home and had Visiting Nurses, and after she was done with the last ditch series of whole brain radiation, she really started to decline fast. I hated that I new from the first day they diagnosed her, that she was going to die in a short while. I used to work Neuro ICU, and Burn/Trauma ICU. I too took time off work even though I had next to nothing in paid time off left. I went FMLA after I used the hours up. I know that she was not suffering the day she started the agonal breathing. I kept her throat suctioned when it got really bad. I kept the morphine level high enough to keep here from suffering. She was only 59. My kids are just devastated. She helped me raise my oldest (14) daughter. I worked days, my ex-wife works 7P-7A. My wife and I just had a baby boy, and she got to hold him an love him for 3 months. But, he will never know how wonderful his grama was, and that really makes me sad. I miss her. My Dad and Sister are handling it ok. We are close, and this has just brought us even closer. But, just for a kick in the a#$, her Dad (my grampa) had died a week and a half before she did. And 3 weeks to the day after she died my Dad's Dad (grampa) died of rectal cancer.
I'm hoping that's it. The last 2 months have just been a blur. I'm so down and depressed I had a conversation with Mom the day before she died, as best we could with her aphasia, and I asked her if she was scared. She said no. She also had told her sister later that day that she knew Jesus was going take her, and she was ready to go.
Sorry if this is rambling and all a mess, but it's kinda hard typing when I can't see thru my tears.
My point to all of this is, that we get knocked down, and stomped into the ground, but we get up and life goes on. Live every day as if it were your last. Because you just never know when it's going to be your time, or someone close to you, to go.
You are in my prayers. It is really the best thing I could do for Mom. I bathed her, I suctioned her, I fed her, I hugged her and told her I loved her every time I could. Just before she died, I helped give her a bed bath with aide from Hospice. We got her all spruced up. I made sure she was medicated, and I suctioned the crap out of her throat. She had been unresponsive sive very early that morning. I was praying for that. Wel, since I had gotten her all taken care of and she seemed to be resting peacefully, I left to get my youngest daughter (now the middle child, and happy to be "big" sister) from school. I wasn't gone but 10 minutes and my sister called me frantic. She said her breathing was get worse, and her color was getting very pale.
She waited until I left to die. I dropped my daughter off to my sister's mother in law, and went back as fast as I could, but she was already gone before I got there.
I know she was at peace, and painfree, and she was ready to go. I am glad that I could make her passing as good as it could be.
I did the same thing for Dad's Dad, grampa 3 weeks later. I made sure that his nurse keft up the MS, and suctioning, since in the hospital setting I obviously couldn't do it myself. I was there when he died, and he just simply took his last breath and let it out and passed on. I kissed him on the forehead, as I had done with Mom, and asked him to say Hi to Mom when he got there.
Thanks for letting me get this all out. I really have been trying to suppress this crap. But I know it's not healthy, and I am a little apprehensive talking about it with Dad and my Sister. I have, and we all just end up blubbering. (like I am now)
Thanks again,
Bob
I really appreciate the words of support. Her BUN is something like 4 times what it is supposed to be and her creatinine is extremely high too, so I hope that means she is blessedly mentally clouded. Sometimes she furrows her brow like she is trying hard to think of something, but her eyes, when they are open, always stare into space. Since they dcd the IV fluids the swelling has gone down in her hands. I hope that means she is more comfortable without so much fluid hanging out in her third spaces. Thanks for all the prayers, thoughts and kind words. I love coming here because we have such a great community of fellowship and support. I love you guys!! :) I do feel better about my decision from hearing from all of you. Again, thank you, thank you, thank you!
How sad for you and your dear family. There are no words to say how my heart goes out to you. My mother died of cancer a few years ago. I had quit my full time job to help care for her because she lived in a different state. I went prn and flew back and forth every 2 weeks or so for several months so I could help and then would fly back to work for a few days, see my husband and sons and fly back again. In spite of all my effort, I was not there when she died. When my sisters called to tell me, it felt like someone hit me. Even though I knew she was dying I just still couldn't believe she died.
And I did not have a mom and I wanted a mom and I still want a mom.
My thoughts and prayers are with you. and I cry with you.
My grandmother had a heart attack and was on a ventilator for a couple months and then she set up sepsis...she got better and got off the vent..she could mouth words to us..she couldnt talk because she had a trache but she try to talk...we thought for sure she was going to pull through and we was going to take her home in a few days..but two days before we was going to bring her home she ended up aspirating because of her tube feedings and it caused her to quit breathing..she had quit breathing and her heart had stopped for about 10 minutes before they got her back.when me and mom my got the the hospital they had put her one life support..my mom was the power of the attorney so she made the decision of taking her off..I just want to say that my heart goes out to you....I knew how hard this was for my mom and I wish no one had to go through what she did....this was about 4 months ago and she lost her dad monday...my thoughts are with you and your family through this hard time...
i'm sitting here trying to reationalize why your situation is different from some of those in the original thread. there doesn't need to be this rationalization, but i have come up with a few things.
1) this only began four weeks ago. it has to be much harder to deal with these things when it comes on suddenly, and the condition radidly deteriorates. i work in mostly chronic care (long term peds and peds oncology). i've always rationalized (in oncology) that at least families (whether they admit it or not) can mentally prepare themselves, and begin spending as much 'quality' time with their loved ones, while they are awake and alert. i've also worked in picu, where kids have come in comatose (mvas and head injuries). i've thought, wow, that's it. they'll proably never talk to their child again. don't get me wrong, i'm not choosing cancer over a head injury, it's just different.
3) she was alert, and responding to you. she took a deep breath when told to. if there was a negative eeg, posturing, or no signs of life (like many in the other thread), then it would be a little different, i would imagine.
2) it's your mommy. there's nothing anyone can say to make it easier. your life is probably flashing before you, all the memories. something that the nurses cannot appreciate. we can try to empathize (if that were my mom...). that's basically how i rationalize my job. every once in a while a certain kid or situation really hits me over the head, and i think "if this were my child, i wouldn't be giving up so soon either.
recently a dear uncle of mine died. wasn't even a blood relative, a family friend i've known my whole life. within eight hrs of the initial insult he was gone. i was with my aunt when they took him in the ambulance. when the er doc came out to speak to the family, i was there. i knew it was bad. my aunt wanted everything done. could i blame her? this came on so suddenly, she was called home from work to find him dying. i called my father (a paramedic) and told him the best case scenerio was intubated in the icu, that's even if they stabilize him to get upstairs. my mom is a lay person, but knows enough from us to understand what that meant. he never made it upstairs. but i kept thinking, if he did, how ling would he have lingered on?
it's a whole different ballgame when it hits home, no matter how it happens.
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.
Pam
Four years ago my family had to make a similar decision when it became clear my father was not going to recover from a protracted illness. We had made plans for everyone to be together in the am to "unplug" the vent, but he spared us following through on that decision and died during the night.
Now, I have been a nurse for many years, both in ICU and hospice settings. I have seen dozens of people die. I know the drill. Yet, I didn't see it in my own father until a kind physician and nurse sat us down and helped us through it. I have never since made a judgment against a family struggling with this-even when to the "trained" eye, all seems lost-and am very quick to put in their place any self-righteous, know-it-all nurse (who may have only worked one shift with the patient) who does. I tell them my story and it shuts them up quick. There is nothing more personal than this, and the avenues people take to come to their decisions need to be respected.
Traumamamma, I cant even begin to imagine the pain you are going through. You have got to be one of the strongest selfless people I have "met".. YOu and your family will be in my thoughts and I hope your find comfort in knowing your mother will have an end to suffering..
Thank you for being the kind of daughter we all want to be. For being totally selfless and caring. I know the stress of being the nurse in the family, you would be inhuman if you didn't second guess such a decision.
When you read all the replies you are receiving I hope you can exhale and know you are not alone.
We had my mother's funeral Tuesday and then she is being cremated(sic?). It was a very emotionally draining time for me. I came home last night and everything hit me again and I really let loose. I know she is in a better place, and she isn't in pain any longer, but I guess you get used to someone always being there, and it hurts to think they aren't there anymore. Then I started thinking about the fact that they are going to wrap her up in a shroud and burn her body. I know it doesn't hurt, and I know we all return to ashes someday, but somehow, that just bothered me last night. I don't know why. Course, it didn't help that when I got home there was a mailbox full of sympathy cards, which I read as I sat and cried on the couch.
I had written a letter of thanks to the CEO of the hospital where mom spent her last days, and I got a reply from him yesterday too. I know how much it means to us to be thanked so I made sure that I did that. But somehow, that made me cry too. I guess it's because that's the hospital where mom spent her last days. Sorry to be rambling.
Just wanted to say thanks again for all the support, caring, and love I recieved from all of you. It helped so much to have so many people reassuring me that I helped dad make the right decisions, even though it was painful.
I had a conversation with Mom the day before she died, as best we could with her aphasia, and I asked her if she was scared. She said no. She also had told her sister later that day that she knew Jesus was going take her, and she was ready to go.
leslie :-D
11,191 Posts
oh trauma....
i just read this thread in its' entirety for the first time and felt myself going along this heart-wrenching journey with you.
every single decision you made, was made out of the purest of love and the most comforting intentions.
no matter what the relationship, no matter the age, it just pains you to see mom go.
so please accept my sincere condolences of your beloved mother and take comfort in knowing that everything you did was with a gentle, compassionate heart.
with love and peace,
leslie xo