Anyone else remove their loved one from life support?

[SDC]

My husband had an accident in April and he sustained skull fractures & brain damage. He was unconscious, put in an induced coma in the ER, and never woke up. I removed him from life support 8 days later and he died under 48 hours. I knew he never wanted to be kept alive by machines with brain damage and I have no issue with my decision. I did what he couldn't do for himself and I'd do it again next week. But, it is a heavy experience to carry. I feel connected to his death. I process those feelings and they diminish, but weeks later they come again. I've looked for resources to help--essays by people with similar experiences, etc--but can't find anything. I'm curious if any other members have a similar experience. 

[Maria_PI]

@SDCrowley I am so sorry you had to experience this! I can relate in a sense - my husband was taken to the ER for sepsis after battling AML, and after two days of pumping antibiotics and blood to try and keep his organs from failing completely, the doctor called me to ask me if I would agree to stop the treatment and move him to hospice (which meant keeping him sedated till his heart stopped - pretty much off life support). I was so upset I had to fight with the doctor over the phone because due to Covid they didn't even let me bring his clothes into the ER or the ICU, let alone see his condition or speak with him. I refused to give them a decision unless they let me in to see my husband. After two days of fighting they let me in so at least he was able to see my face one last time and know that I was there before they gave him so much morphine that he never woke up. If he didn't have the strongest heart ever for a 70 y.o. former marathon runner, he would have passed in the hospital, but he held for another 24 hours while the hospice took their time to organize his transfer home, so at least he passed in the privacy of our home. So yes, I have PTSD from this experience and for the first few months had to pretty much sedate myself in order to fend off these memories. Not that I would have decided differently, we both knew this day would come, and the doctor said in plain words that there was no coming back from that situation, but it was a very traumatic thing to go through with the love of my life.

The only thing I can do at this point is try to focus on the good memories, surround myself with his happy pictures and things that he loved, and try to forget that awful experience. But it is something I will have to live with for the rest of my life, there is no denying that.

[SDC]

3 hours ago, Maria_PI said:

@SDCrowley I am so sorry you had to experience this! I can relate in a sense - my husband was taken to the ER for sepsis after battling AML, and after two days of pumping antibiotics and blood to try and keep his organs from failing completely, the doctor called me to ask me if I would agree to stop the treatment and move him to hospice (which meant keeping him sedated till his heart stopped - pretty much off life support). I was so upset I had to fight with the doctor over the phone because due to Covid they didn't even let me bring his clothes into the ER or the ICU, let alone see his condition or speak with him. I refused to give them a decision unless they let me in to see my husband. After two days of fighting they let me in so at least he was able to see my face one last time and know that I was there before they gave him so much morphine that he never woke up. If he didn't have the strongest heart ever for a 70 y.o. former marathon runner, he would have passed in the hospital, but he held for another 24 hours while the hospice took their time to organize his transfer home, so at least he passed in the privacy of our home. So yes, I have PTSD from this experience and for the first few months had to pretty much sedate myself in order to fend off these memories. Not that I would have decided differently, we both knew this day would come, and the doctor said in plain words that there was no coming back from that situation, but it was a very traumatic thing to go through with the love of my life.

The only thing I can do at this point is try to focus on the good memories, surround myself with his happy pictures and things that he loved, and try to forget that awful experience. But it is something I will have to live with for the rest of my life, there is no denying that.

Thank you for your thoughtful reply. I'm sorry for your harrowing experience and COVID certainly made it more traumatic for you. All of us who lost a loved one during COVID lost all normalcy associated with hospitalizations and deaths---not being able to visit, communicating with medical staff via phone versus in person, not being able to receive comfort from loved ones while sitting in a hospital waiting room or next to a hospital bed, perhaps not being able to hold a service, etc. It's a lot of loss on top of the death of our loved one. It's good to remind ourselves of that truth.

Rationally I know I just need to live with the experience of taking him off life support and that time will lessen the complexity of my emotional response. Like you said, it's a traumatic thing to go through and it takes awhile for trauma to not feel fresh. Thanks again for sharing. 

[Gail 8588]

I also signed the DNR and the paperwork to have the life supports removed, 25 days after his stroke.

I knew it was time. There was no hope of recovery. Blood clots were everywhere, cutting off oxygen to his lungs, heart, brain all his organs. He had coded 3 times the night before.  He was on a ventilator, a feeding tube, IVs of all sorts.

The doctor waited for our eldest son to arrive so he could say goodbye to his father.  Our younger son played the guitar and sang to his dad the songs they had so often played and sung together. 

It was the hardest thing I have ever done, letting him go. It hurts now to describe it. 

There was no real choice.  Did I want his pain to continue or would I allow his pain to end? 

Gail

[SDC]

Thank you for sharing you story with me. It's good that your sons spent time with him before he died. 

It's a unique experience for the right thing also being the hardest thing you've ever done.  

 

[jwahlquist]

9 hours ago, SDCrowley said:

My husband had an accident in April and he sustained skull fractures & brain damage. He was unconscious, put in an induced coma in the ER, and never woke up. I removed him from life support 8 days later and he died under 48 hours. I knew he never wanted to be kept alive by machines with brain damage and I have no issue with my decision. I did what he couldn't do for himself and I'd do it again next week. But, it is a heavy experience to carry. I feel connected to his death. I process those feelings and they diminish, but weeks later they come again. I've looked for resources to help--essays by people with similar experiences, etc--but can't find anything. I'm curious if any other members have a similar experience. 

Yes and it was the worst experience by far in my life.  I would not wish having to make that decision on anyone.   I had to watch my husband die twice.  Once as he coded in the ER as they were kicking us out of the room.  Then again after removing him from life support because they brought him back and he was in ICU for 5-6 days before they told me that he had no brain function.   The guilt of having to make the decision still tears me apart regularly.  I would have given anything to not have to make that decision.  As it is there is no one to blame but myself. 
 

[jmmosley53]

SDCrowley,

I am so sorry for your loss.  I too had to make the same sad choice.  It is a huge burden to carry but I believe that my husband would have hated to linger attached to machines when he could have been at peace with God.  I do not know if you believe in an after life, I do, and at the time it seemed like the right most loving thing to do.

[Jttalways]

My husband was on life support for 1 1/2 days before he passed. His organs failed due to septic shock due to leukemia. I did not have to make the choice but I spent the 2 hours before his death being badgered by 2 ER nurses trying to convince me to take him off life support. The doctor and I had already discussed the situation and had come up with a plan and I was going to stick to it. My husband was only 35 years old. I wanted to give him a chance. 1 of the nurses was particularly cruel. She knew when my husband’s time was drawing near, but she didn’t tell me. She didn’t give me a heads up or warning. Nada. She didn’t want to tell me so I wouldn’t tell them to be ready to resuscitate him. Even though I was standing beside my husband’s side, I was speaking to a family member when he passed. I didn’t get the chance to speak to him, kiss him, or comfort him the moment he passed. I will never forgive the nurse for that. It haunts me to this day. 

[SDC]

9 hours ago, jwahlquist said:

Yes and it was the worst experience by far in my life.  I would not wish having to make that decision on anyone.   I had to watch my husband die twice.  Once as he coded in the ER as they were kicking us out of the room.  Then again after removing him from life support because they brought him back and he was in ICU for 5-6 days before they told me that he had no brain function.   The guilt of having to make the decision still tears me apart regularly.  I would have given anything to not have to make that decision.  As it is there is no one to blame but myself. 
 

Thank you for sharing with me. I'm sorry you feel guilty--that's a lot on top of grieving. I know it probably won't help, but you shouldn't feel guilty for making the decision for him. Being kept alive without brain function isn't much of a life. I doubt your husband wanted that for himself. I'm grateful that I don't feel guilty--I just wish I didn't feel connected to my spouse's death. Take good care. 

4 hours ago, Jttalways said:

My husband was on life support for 1 1/2 days before he passed. His organs failed due to septic shock due to leukemia. I did not have to make the choice but I spent the 2 hours before his death being badgered by 2 ER nurses trying to convince me to take him off life support. The doctor and I had already discussed the situation and had come up with a plan and I was going to stick to it. My husband was only 35 years old. I wanted to give him a chance. 1 of the nurses was particularly cruel. She knew when my husband’s time was drawing near, but she didn’t tell me. She didn’t give me a heads up or warning. Nada. She didn’t want to tell me so I wouldn’t tell them to be ready to resuscitate him. Even though I was standing beside my husband’s side, I was speaking to a family member when he passed. I didn’t get the chance to speak to him, kiss him, or comfort him the moment he passed. I will never forgive the nurse for that. It haunts me to this day. 

It's cruel that your husband died at 35 years old. I'm sorry you endured that unfairness. It's unforgivable that the nursing staff didn't treat you with kindness and patience. I hope you find peace. Thank you for sharing your story with me. 

[KayC]

My heart goes out to all of you posting here...having to remove from life support adds a whole other layer to grieviing, so unfair that anyone should have to go through this.  But there's no doubt in my mind that you all did what was best for your spouse even though you suffered for it.  I know proud is not the word but you all deserve to feel proud of yourselves even though that doesn't even seem to factor in.

[mademoisellebelle33]

My husband was in ICU at the facility I worked at (I'm an RN) for 67 days due to liver failure.  They told us he was dying 5 different times. It was absolute agony. The blessing was that after 3 weeks of him being in a medically induced coma, despite being on a ventilator, we were able to communicate.  Seeing him suffer like that after everything he had gone through in his short life (36 yrs old), was the hardest thing I've gone through, and I lost my mother and grandmother before this in traumatic situations. The final time they said he'd die, he was in DIC, a condition where your blood doesn't clot. He had yet another infection, this one was severe necrotizing fascitis, a specific kind called Fournier's gangrene.  The only hope was surgery, which he couldn't have because of the DIC. I had to make the excruciating decision to up his Fentynal and take him off his blood pressure medications that were keeping him alive. We never got to discuss beforehand what he wanted in this situation,  though during his illness,  he told me he was fighting for me and boy did he! On that last day, I explained what they were saying and he said he was ready and at peace and not afraid and that he loved me. I made sure to include his family in the decision and they could see he was suffering and they agreed.  At 2:15 am on Oct. 9, 2019, surrounded by so many loved ones, my soul mate drew his last breaths. As his vitals came close to zero, I swear on everything,  there was an electrical surge and every computer on the unit shut off. I took that as his final goodbye. I miss him more than words could ever describe. He was half my soul. Rip Cj Beaver, until we're together again. 

[Jttalways]

1 hour ago, mademoisellebelle33 said:

I explained what they were saying and he said he was ready and at peace and not afraid and that he loved me. I made sure to include his family in the decision and they could see he was suffering and they agreed.  At 2:15 am on Oct. 9, 2019, surrounded by so many loved ones, my soul mate drew his last breaths. As his vitals came close to zero, I swear on everything,  there was an electrical surge and every computer on the unit shut off. I took that as his final goodbye. I miss him more than words could ever describe. He was half my soul. Rip Cj Beaver, until we're together again. 

That is amazing that you were able to communicate. I would have given anything and everything to have had my husband awake. He was on fentanyl and heavily sedated. I would speak to him and his eyes would roll towards me and he would lift his arms, but i dont know. I would have given anything to have known for sure that he heard and understood what i was saying. Tomorrow will be 1 year since he passed. 

That electrical surge was definitely a sign.

[mademoisellebelle33]

He heard you. I'm sure of it. My husband,  at his worst would save his energy for when I was there. They'd tell me he wasn't as responsive that day, but even Connie, the environmental service lady could see it. He saved that energy to respond to me. One of those times when they said he'd die, I lost it as i was sitting next to him. He reached up, as out of it as he was, and grabbed me and held me so tight. It was like he was more worried about me than himself and he must have been scared. I put him on DNR at that point and when he got better, I explained it to him and asked if he wanted CPR and he mouthed yes. I asked if he understood and he did cpr motions with his hands.  I immediately called them in to put him back to full code. He fought so hard and so long and said it was just for me. I told him don't do that. If you're tired, you let me know when you're ready. I told him of course I wanted him here but he didn't have to suffer for me.  I know now that I was his everything.  But I always knew he was my everything.  I sent him out in style.  I loved him more than I'll ever love anyone. 

[SDC]

9 hours ago, mademoisellebelle33 said:

My husband was in ICU at the facility I worked at (I'm an RN) for 67 days due to liver failure.  They told us he was dying 5 different times. It was absolute agony. The blessing was that after 3 weeks of him being in a medically induced coma, despite being on a ventilator, we were able to communicate.  Seeing him suffer like that after everything he had gone through in his short life (36 yrs old), was the hardest thing I've gone through, and I lost my mother and grandmother before this in traumatic situations. The final time they said he'd die, he was in DIC, a condition where your blood doesn't clot. He had yet another infection, this one was severe necrotizing fascitis, a specific kind called Fournier's gangrene.  The only hope was surgery, which he couldn't have because of the DIC. I had to make the excruciating decision to up his Fentynal and take him off his blood pressure medications that were keeping him alive. We never got to discuss beforehand what he wanted in this situation,  though during his illness,  he told me he was fighting for me and boy did he! On that last day, I explained what they were saying and he said he was ready and at peace and not afraid and that he loved me. I made sure to include his family in the decision and they could see he was suffering and they agreed.  At 2:15 am on Oct. 9, 2019, surrounded by so many loved ones, my soul mate drew his last breaths. As his vitals came close to zero, I swear on everything,  there was an electrical surge and every computer on the unit shut off. I took that as his final goodbye. I miss him more than words could ever describe. He was half my soul. Rip Cj Beaver, until we're together again. 

Oh my gosh--what a drawn out, harrowing experience. I'm sorry. I'm glad you were able to communicate with him and be his advocate. Thank you for sharing your story. 

[SDC]

21 hours ago, jmmosley53 said:

SDCrowley,

I am so sorry for your loss.  I too had to make the same sad choice.  It is a huge burden to carry but I believe that my husband would have hated to linger attached to machines when he could have been at peace with God.  I do not know if you believe in an after life, I do, and at the time it seemed like the right most loving thing to do.

I'm sorry you had to make the same sad choice. Thank you for sharing with me. 

[KayC]

On 9/23/2020 at 10:14 AM, mademoisellebelle33 said:

My husband was in ICU at the facility I worked at (I'm an RN) for 67 days due to liver failure.  They told us he was dying 5 different times. It was absolute agony. The blessing was that after 3 weeks of him being in a medically induced coma, despite being on a ventilator, we were able to communicate.  Seeing him suffer like that after everything he had gone through in his short life (36 yrs old), was the hardest thing I've gone through, and I lost my mother and grandmother before this in traumatic situations. The final time they said he'd die, he was in DIC, a condition where your blood doesn't clot. He had yet another infection, this one was severe necrotizing fascitis, a specific kind called Fournier's gangrene.  The only hope was surgery, which he couldn't have because of the DIC. I had to make the excruciating decision to up his Fentynal and take him off his blood pressure medications that were keeping him alive. We never got to discuss beforehand what he wanted in this situation,  though during his illness,  he told me he was fighting for me and boy did he! On that last day, I explained what they were saying and he said he was ready and at peace and not afraid and that he loved me. I made sure to include his family in the decision and they could see he was suffering and they agreed.  At 2:15 am on Oct. 9, 2019, surrounded by so many loved ones, my soul mate drew his last breaths. As his vitals came close to zero, I swear on everything,  there was an electrical surge and every computer on the unit shut off. I took that as his final goodbye. I miss him more than words could ever describe. He was half my soul. Rip Cj Beaver, until we're together again. 

I am so sorry!  He's the same age as my son, I can't imagine.  My heart goes out to you.  

I know you've been at this nearly a year, but I wrote this article of the things I found helpful over the years and want to share it with you.  I realize some of these things you may already know and some may not seem applicable to you, but this journey is ever evolving and my hope is something will be of help to you.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.