I remember leaving the hospital room, hoping that Dear Son wouldn’t die. I was leaving because they needed to do the suctioning to save his life. Dad would have to be here for that, because I failed to allow them to do it, after they bloodied up his nose. I told Dad he would have to be there indefinitely, until that was over, so Dear Son wouldn’t die alone.
It bothered me to think, that Dear Son might die when I wasn’t there. After eighteen years, and being with him on every hospital visit, it was hard to think I wouldn’t be there at the end. I had loved him and cared for him deeply his entire life. I had always assumed I would be there at the end. I had never thought for a moment, that I wouldn’t be there to say good-bye. It had never even entered my head. And yet, that night, it was a real possibility. It took everything I had to leave. I had never felt such pain.
I must say I was almost angry at that thought, although angry isn’t really the right word. I think it was just plain unimaginable that his life would end any other way than with me by his side. It was like watching a really good movie and then suddenly, it had a crappy ending. It was the kind where you would ask yourself why they put all of the time and energy into the movie only to have it end so poorly.
I remembered earlier in the hospitalization when he was on the vent. He was lying in the hospital bed, unconscious, tubing taped to his mouth. For the first time, I thought about it not working out. I mean, it almost didn’t work out in 2006, when he nearly died on Mother’s Day. He was on the vent then and without a blood transfusion, that would have been it. But this time, wow, I thought about what might happen if he died.
Dad was there back then, in 2006, when they removed the vent tubing. He said it was really hard to watch. The doctors and staff all stood around Dear Son as they removed the tubing, then they basically stood back and waited for him to gasp for his breath, hoping he’d breathe again. He said he never wanted to watch that again. I left the room for that kind of stuff. I know I can’t watch that.
But this time in the ICU, that night he was on the vent, I thought about that moment. I thought, what if it didn’t work out? What if I didn’t get to say good-bye? What if Dear Son suffered? What if he looked around for his Mommy and she wasn’t there? What good would it have been if I had done everything else in his life if I wasn’t there at the end when he needed me the most? The guilt of leaving the hospital that night was going to kill me and yet, I knew if that if suctioning was required or he would die, then I would have to leave.
I remember asking the nurse for a few minutes to tell Dear Son good-bye. He couldn’t even close the door and give me a few minutes of privacy. I’ll never forget that. His name was Richard. So much for compassion. I’ll also remember the look in Dear Son’s eyes, when I told him I couldn’t stay. I told him I couldn’t stay when they wanted to put that tube up his nose, because I can’t watch him in pain. I told him his Daddy would be with him and that I was sorry. I told him that they thought that would help him. I told him I loved him then kissed him on his cheek. I’ll never forget the look on his face when I told him that. As sick as he was, suddenly his eyes opened wide, as if someone had just tossed cold water on his face and he was suddenly awake. He had this terrified look on his face. I knew he didn’t want me to leave. But I had to. I felt terrible.
Fortunately, he recovered, or rather, is still recovering. That night though, leaving for the suctioning, made me think about the ending. It was all I could think about as I drove home. Coming home to an empty apartment, and seeing his empty bed, made me think about what it would be like if things didn’t work out. It was awfully quiet.
If there were two things that I knew for sure, up to this point, was that I would never do a “Do Not Resusitate” order and I would never do a trach. The first one, because I would feel like a traitor to Dear Son. Granted, I am pro-life but aside from that, I could never do that order because I would feel like it would be a lie. I mean, how could I possibly do everything I can for him his entire life and then choose at the end, not to do everything to save him. I couldn’t fathom that. And yes, I know that some people don’t view it that way but this is my son. I am speaking only for myself.
As for the trach, well, I’d never do that to him. I mean, here is a young man who lived his entire life wanting to run and do things like other boys. He lived his entire life as an active boy stuck in a disabled boy’s body. To cut a hole in his throat, I think, would send him over the edge. It would totally break his spirit. I don’t think he could handle that. I also think it’s an easy answer sometimes for physicians to remove body parts; it’s a whole different ballgame to live with it. I learned that with the g-tube. It took me two years to get over the fact that he could never eat again. I still despise that thing.
The night in the ICU when he lie on the vent, challenged that belief for the first time. I thought about what might happen if it didn’t work out. What if they removed the vent, with the doctors and everyone standing around, and he gasped, suffered and then died. How could I help him? And when would I get to say good-bye? He’d be dead by then and they’d leave the room and take him away. And even if they let me talk to him, he’d be dead. There wouldn’t have been any mother there helping him at the end, holding his hand, kissing his cheek or looking in his eyes telling him I loved him. And how many times would I replay that ending over the rest of my life?
But would this be for me or for him? How important is it to say good-bye?
I thought about Dear Son a lot that night and when I went home. I also thought about it some more after we got out of the hospital. When things weren’t going well at home, and I thought death was imminent, I thought, well, if I call 911 or go to the hospital, we may have to do this again. Am I ready to vent him again even though he was just vented ten days ago? If so, how many times in his life am I willing to do that? Will I vent him and make him go through every life saving effort until I’ve got every last drop of life out of him? What is the right answer?
I pulled away and tried to take myself out of the equation. I tried to look at what would be best for Dear Son. It was hard though, knowing what would be best for him. In the end, I am just a mother who loves her son. I don’t want to have to make these decisions. I can’t ever sign that “Do Not Resusitate” but how many times am I willing to vent him?
I know for myself, that I never want to be vented. Not once, not ever. I may not even have trouble signing a DNR for myself, since I don’t ever want to step foot in a hospital again after all of these years. But I don’t like being in the position to have to make these decisions for someone else. And especially not for my Dear Son.
As I thought about this issue some more, I realized that what I wanted was peace. I wanted the ending to be peaceful and loving. I want to be able to say good-bye. I want to look in his eyes, tell him I love him, tell him what a wonderful kid he was and support him in his death. I wanted to hold him, to keep him from suffering. I wanted death to be loving, as was his life. I decided then to think about what would be the ideal for him and ideal for me.
In the end, I thought that the ideal situation was for him to die at home with me, holding his hand, looking in his eyes and telling him I love him. Then I thought about the next best, to have him die in his sleep. In any case, I’d want him to die without any pain or suffering.
I also thought about the worst case scenarios. That he would die alone in the hospital with no one there. Or that he might choke on his vomit and die or die gasping for air as they removed the tube, looking right at me for him to help him. Pretty much, all of the worst case scenarios involved pain and suffering and me not there to help him.
Essentially, I would want his death to be a reflection of his life-that he would know all of the love that I had for him and that other people had for him. Isn’t that what we all want at the end, to know that we are loved, to not die in pain and to have people we love around us?
I haven’t made any decisions yet, but just thinking about what would be an ideal death versus signing a “Do Not Resusitate” helped. Shortly thereafter, I had to take him back to the emergency room, just three days after we were discharged. When I got there, they asked me all of the questions again: “Did I want to save him at all costs? Did I understand that meant venting him if needed, etc.?” I said "yes" to all of those questions once again. It was too soon though to have him back at the hospital. I wondered how many times they were going to ask me that again. I mean, how do you know when to save him and when it is too much for him?
I found myself longing for the days past, when people just died instead of having to agonize over these decisions. I am just a regular mother who loves her child. I don’t ever want to make any of these decisions. I just want my son to live, to be happy and feel loved. And that smile, yes, I want to see that smile. I want to see it again and again and again.
It bothered me to think, that Dear Son might die when I wasn’t there. After eighteen years, and being with him on every hospital visit, it was hard to think I wouldn’t be there at the end. I had loved him and cared for him deeply his entire life. I had always assumed I would be there at the end. I had never thought for a moment, that I wouldn’t be there to say good-bye. It had never even entered my head. And yet, that night, it was a real possibility. It took everything I had to leave. I had never felt such pain.
I must say I was almost angry at that thought, although angry isn’t really the right word. I think it was just plain unimaginable that his life would end any other way than with me by his side. It was like watching a really good movie and then suddenly, it had a crappy ending. It was the kind where you would ask yourself why they put all of the time and energy into the movie only to have it end so poorly.
I remembered earlier in the hospitalization when he was on the vent. He was lying in the hospital bed, unconscious, tubing taped to his mouth. For the first time, I thought about it not working out. I mean, it almost didn’t work out in 2006, when he nearly died on Mother’s Day. He was on the vent then and without a blood transfusion, that would have been it. But this time, wow, I thought about what might happen if he died.
Dad was there back then, in 2006, when they removed the vent tubing. He said it was really hard to watch. The doctors and staff all stood around Dear Son as they removed the tubing, then they basically stood back and waited for him to gasp for his breath, hoping he’d breathe again. He said he never wanted to watch that again. I left the room for that kind of stuff. I know I can’t watch that.
But this time in the ICU, that night he was on the vent, I thought about that moment. I thought, what if it didn’t work out? What if I didn’t get to say good-bye? What if Dear Son suffered? What if he looked around for his Mommy and she wasn’t there? What good would it have been if I had done everything else in his life if I wasn’t there at the end when he needed me the most? The guilt of leaving the hospital that night was going to kill me and yet, I knew if that if suctioning was required or he would die, then I would have to leave.
I remember asking the nurse for a few minutes to tell Dear Son good-bye. He couldn’t even close the door and give me a few minutes of privacy. I’ll never forget that. His name was Richard. So much for compassion. I’ll also remember the look in Dear Son’s eyes, when I told him I couldn’t stay. I told him I couldn’t stay when they wanted to put that tube up his nose, because I can’t watch him in pain. I told him his Daddy would be with him and that I was sorry. I told him that they thought that would help him. I told him I loved him then kissed him on his cheek. I’ll never forget the look on his face when I told him that. As sick as he was, suddenly his eyes opened wide, as if someone had just tossed cold water on his face and he was suddenly awake. He had this terrified look on his face. I knew he didn’t want me to leave. But I had to. I felt terrible.
Fortunately, he recovered, or rather, is still recovering. That night though, leaving for the suctioning, made me think about the ending. It was all I could think about as I drove home. Coming home to an empty apartment, and seeing his empty bed, made me think about what it would be like if things didn’t work out. It was awfully quiet.
If there were two things that I knew for sure, up to this point, was that I would never do a “Do Not Resusitate” order and I would never do a trach. The first one, because I would feel like a traitor to Dear Son. Granted, I am pro-life but aside from that, I could never do that order because I would feel like it would be a lie. I mean, how could I possibly do everything I can for him his entire life and then choose at the end, not to do everything to save him. I couldn’t fathom that. And yes, I know that some people don’t view it that way but this is my son. I am speaking only for myself.
As for the trach, well, I’d never do that to him. I mean, here is a young man who lived his entire life wanting to run and do things like other boys. He lived his entire life as an active boy stuck in a disabled boy’s body. To cut a hole in his throat, I think, would send him over the edge. It would totally break his spirit. I don’t think he could handle that. I also think it’s an easy answer sometimes for physicians to remove body parts; it’s a whole different ballgame to live with it. I learned that with the g-tube. It took me two years to get over the fact that he could never eat again. I still despise that thing.
The night in the ICU when he lie on the vent, challenged that belief for the first time. I thought about what might happen if it didn’t work out. What if they removed the vent, with the doctors and everyone standing around, and he gasped, suffered and then died. How could I help him? And when would I get to say good-bye? He’d be dead by then and they’d leave the room and take him away. And even if they let me talk to him, he’d be dead. There wouldn’t have been any mother there helping him at the end, holding his hand, kissing his cheek or looking in his eyes telling him I loved him. And how many times would I replay that ending over the rest of my life?
But would this be for me or for him? How important is it to say good-bye?
I thought about Dear Son a lot that night and when I went home. I also thought about it some more after we got out of the hospital. When things weren’t going well at home, and I thought death was imminent, I thought, well, if I call 911 or go to the hospital, we may have to do this again. Am I ready to vent him again even though he was just vented ten days ago? If so, how many times in his life am I willing to do that? Will I vent him and make him go through every life saving effort until I’ve got every last drop of life out of him? What is the right answer?
I pulled away and tried to take myself out of the equation. I tried to look at what would be best for Dear Son. It was hard though, knowing what would be best for him. In the end, I am just a mother who loves her son. I don’t want to have to make these decisions. I can’t ever sign that “Do Not Resusitate” but how many times am I willing to vent him?
I know for myself, that I never want to be vented. Not once, not ever. I may not even have trouble signing a DNR for myself, since I don’t ever want to step foot in a hospital again after all of these years. But I don’t like being in the position to have to make these decisions for someone else. And especially not for my Dear Son.
As I thought about this issue some more, I realized that what I wanted was peace. I wanted the ending to be peaceful and loving. I want to be able to say good-bye. I want to look in his eyes, tell him I love him, tell him what a wonderful kid he was and support him in his death. I wanted to hold him, to keep him from suffering. I wanted death to be loving, as was his life. I decided then to think about what would be the ideal for him and ideal for me.
In the end, I thought that the ideal situation was for him to die at home with me, holding his hand, looking in his eyes and telling him I love him. Then I thought about the next best, to have him die in his sleep. In any case, I’d want him to die without any pain or suffering.
I also thought about the worst case scenarios. That he would die alone in the hospital with no one there. Or that he might choke on his vomit and die or die gasping for air as they removed the tube, looking right at me for him to help him. Pretty much, all of the worst case scenarios involved pain and suffering and me not there to help him.
Essentially, I would want his death to be a reflection of his life-that he would know all of the love that I had for him and that other people had for him. Isn’t that what we all want at the end, to know that we are loved, to not die in pain and to have people we love around us?
I haven’t made any decisions yet, but just thinking about what would be an ideal death versus signing a “Do Not Resusitate” helped. Shortly thereafter, I had to take him back to the emergency room, just three days after we were discharged. When I got there, they asked me all of the questions again: “Did I want to save him at all costs? Did I understand that meant venting him if needed, etc.?” I said "yes" to all of those questions once again. It was too soon though to have him back at the hospital. I wondered how many times they were going to ask me that again. I mean, how do you know when to save him and when it is too much for him?
I found myself longing for the days past, when people just died instead of having to agonize over these decisions. I am just a regular mother who loves her child. I don’t ever want to make any of these decisions. I just want my son to live, to be happy and feel loved. And that smile, yes, I want to see that smile. I want to see it again and again and again.
Note: Dear Son is eighteen years old and suffers from a progressive neurological disorder; he has intractable seizures, dystonia and is severely retarded due to a random mutation of the ARX gene.
10 comments:
peace, my friend...
I understand your thought processing and also the difficult mothering decisions you have facing you. Joy/sorrow are so strongly connected.
About DS's smile.
May you have that gift.
“I never will understand all the good that a simple smile can accomplish.”
Mother Teresa
Dream Mom, circumstances spared me the agony of witnessing my Joe leaving this earth three years ago. While there is a certain sense of peace that I didn't have to witness his final moments, it left me with an emptiness and horrible guilt that I wasn't there at the moment of his life when he probably needed me the most - as you have expressed so well in your blog post.
Joe's older brother helped me come to terms with how we lost him, by saying that Joe knew how much he was loved and that this might have been his final gift to us. Sparing us all that final goodbye.
Maybe God chose the circumstances, to spirit him away while I wasn't around, since he knew I had and would continue to climb mountains to save him and it was way past Joe's time to go. (He had been in an obvious decline for the previous five years, on comfort measures since the last ICU near miss we had experienced in 2001.)
As mothers providing such good care to our children, we like to feel we are in control of what happens to them. Ultimately, it is God in the driver's seat and I guess I learned that sad lesson when I lost my Joe.
DS knows how much you love him. Always remember that!
Canucker
Your post speaks of things I have thought about too, and wondered what we would do given similar circumstances. When is it appropriate to tell the doctors not to use artificial means to prolong life, and to just give comfort measures?
When you say "DNR," or sign a "do not resuscitate" form, it means that they won't do CPR, not necessarily that they won't intubate. And, really, it sounds like you are trying to do what is right and best, but it sounds like you think that signing a DNR is somehow abandoning DS.
The thing of it is, we all want our kids--if prolonging their lives with medical props is no longer a good thing--to die with comfort, peace and our love (and God's!) around them. This is possible if we tell the medical people that we want our kids to be allowed to "die a natural death," with comfort measures. I read an interesting article that speaks to this, in USA Today: http://www.usatoday.com/news/health/2009-03-02-DNR-natural-death_N.htm.
I would encourage you to talk through your concerns to a hospice care person, or someone who has experience in this. Because when you come to the time that you sense that keeping DS alive with medical props is no longer the best thing to do, you want assurance that he will be allowed to die a natural death, being comfortable, without pain, and knowing that you are close by. This is all of our wishes, we parents of severely disabled children.
I tell my husband--going to Jesus is not a bad thing! And if any one of our bodies, or our children's bodies, is so weak that it is time for us to leave this world, we want to be able to so with peace, comfort, and having loved ones close by, knowing that Jesus is waiting on the other side, ready to welcome us to heaven.
My prayers are with you often through the day. I will pray specifically that you find peace in these tough decisions, and that both DS and you feel God's comfort and love around you.
I whole heartedly believe there are things much worse than death. If you get to that place with your dear son, you will know. I fully believe you will know. You are his best, truest advocate. You will know. In the meantime, you are following your heart and that is all you can do.
Your words recall the last days I had with my beloved Nancy before leukemia took her away 6 1/2 years ago. We had tried everything - 3 rounds of the most intense and toxic chemotherapy over 3 months of hospitalization. The transplant specialist told us the odds were not in her favor if she relapsed. So when the disease relapsed after 6 months of remission, she decided against further treatment. She had suffered enough and asked the doctor to sign the DNR order. So I did not have to bear the weight of that decision on my shoulders alone as you must do for your son.
However, I did do some thinking about the experiential nature of birth and death. I was there by her side when she passed, but I became aware that her dying was her own private experience, one that I could not share. As much as I loved her, I could not follow my dear Nancy through that final portal. Although other people may be present, the experience of dying, like the experience of being born, is uniquely individual.
As Nancy took her final breath, an expression of wide-eyed amazement remained frozen on her face, as if she had experienced a stunningly beautiful punctuation to end all the pain she had suffered. A single tear trickled from one eye, and something told me it was a tear of joy, perhaps tinged with regret but no less joyful.
I was left a lonely man, but at least I had done everything possible to save Nancy's life and made her last days the best they could be. Then I could proceed to live the rest of my life without regrets. In the end I think that's all any of us can hope for.
I can't allow myself to even think about any portion of what you must be feeling. It makes me want to puke.
I don't know how you go on, but I imagine the smile, the one you need to see so much, fuels you.
I pray you never forget it, no matter what happens.
You and Dear Son are so loved by those of us who read this blog. So very loved.
I really hope that you will speak with someone from palative care. As has been said before, it is different than hospice. (But I also do hope you will speak with hospice as well.)
You have always fought to give your Dear Son another chance at life. I hate that you have to think about your own beloved child's death.
Sometimes the time comes when the fight for an extended life is exchanged for the fight of a good death. I've known quite a few adults who have chosen that for themselves and it makes me wonder what your Dear Son would want.
I think it's at least possible that what he would want is not heroic measures but rather the quiet of being with his mother and father.
I wish for you peace. You are in my prayers.
Kathleen
I can't even imagine how this is for you. You've put forth some honest feelings and I hope that this is in some small way helpful. These decisions are certainly agonizing. I know that you must be exhausted with caregiving. There's no time to even think about yourself much less take care of yourself, but I hope that you can have a few moments to nurture yourself in some small way. My brother is a hospital chaplin -- I hope that your hospital has someone there to pray with you and listen. I do want to say that even though I don't know you personally -- I can tell that you are an amazing mother. If your son could tell you, I'm sure that he would tell you "Thank you for being my mother and loving me so wonderfully."
Thank you for all of your thoughtful comments. Your words were comforting and helped in so many ways.
Anon-As for death, I am not afraid of death per se but more afraid of him dying and suffering or not being able to help him at the end. After everything he has been through in his life, I had always hoped that death would be peaceful and easy and that I would be there. In the end, I just want the best for Dear Son and sometimes it's hard figuring out what that is. It was a good reminder that God is in charge.
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