11 April 2007
From mid-afternoon until he died around 8:00 p.m., John didn't open his eyes. He seemed to know when I was with him, but he didn't speak any coherent words and he was no longer awake or aware.
At some point during that time, he started to moan when he exhaled. He hadn't been taking much pain medication up to that point. I asked him a few times if he was in pain, but he couldn't answer. I listened to him moan as he breathed, trying to decipher what the moan meant. Pain? His breathing was not labored and he was not restless. In my hand, I clutched the bottle of liquid morphine that hospice had given me. I wanted so much for John would wake up and have one last conversation with me before he died. I knew if I gave him the liquid morphine that any chance of that would be gone. So I told myself that he wasn't in pain, set the liquid morphine on the bedside table, and told John that I was there with him.
When I got back from picking up the babies from daycare, John's moaning had intensified. By this point, I knew in my heart that things were moving very, very quickly. I wasn't going to get that conversation I so desperately wanted.
I gave him a dose of morphine.
The moaning continued.
Right before I put the babies to bed, I gave John more morphine. I was holding Riley in my arms as I filled the syringe and administered the medication.
The moaning continued.
Just over an hour later, John died.
Everyone asks me if John's death was peaceful. I always say yes. I guess it was; he basically fell asleep and stopped breathing. But I worry that he was in pain for those last hours, physical pain that I could have taken away by giving him more medication sooner. I wish that I had not been so selfish in my desperate wish to get him back, even for just a few moments.
*******************************
Today
Everyone wants to know how I'm doing. I usually say that I'm hanging in there, that the babies and I are finding our rhythm. It's a true answer.
What I can't say to people is that since John's death, I'm filled with a palpable sense of relief. Of course, I miss John terribly and there are moments when I'm awash in sadness. But down in my core, I have a deep sense of peace in knowing that John is not sick now. He was so tired of having cancer. And, to be honest, I was tired of cancer, too. I was tired of the unpredictability of our lives, of not knowing how John was going to feel day to day, of knowing that he was going to die in the near term, of the burden of caretaking.
I hate that he is gone. I feel awful that not having to deal with John's illness removes a heavy load from my overextended back. Of course I would give anything to have him back, sick or well. But there is a piece of me, a guilty piece, that is not sad to say farewell to the cancer phase of my life. I miss John terribly. I don't miss cancer one bit.
Moi
- Snickollet
- I'm a mother and a widow, and a whole lot of other things. Here, though, I tend to write about parenting, grief, and their intersection.
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46 comments:
Honey, you're normal. Such serious illness IS a huge burden. And now it's gone. Wherever he is, John is relieved too. I always say that guilt and regret are wastes of time -- of course, I feel both just like anyone else, but it helps me to think that way.
Your honesty and thoughtfulness, even in such sorrow and pain, are an inspiration. Please continue to take care of yourself and let us know how you are.
I recently read an article in the Boston Globe magazine about a woman who lost her husband in a car accident. Her most overwhelming feeling was relief - as it turned out her marriage wasn't happy.
Her circumstances were much different than yours and John's, but her point was that she felt like her relief had no place in society. That people expected her to be a much different model of grief than what she actually felt.
My point is that it's ok for you to feel relieved that there's no more cancer. It's ok to feel whatever it is you're feeling as you work through things.
I haven't been reading you for very long, but I want you to know that I think of you often, especially lately. I wish sometimes I could do more than just offer you a hollow "I'm sorry."
You made the best decisions you could during an extremely difficult, emotional, and unpredictable time. Don't beat yourself up over being human.
Also, cancer took so much from both of you, I believe John would understand your feeling of relief. Like his pragmatic and good humored comments about the wedding ring and the suit, I think he'd say something like, "Of course you should be relieved, Goose. Cancer sucks!"
It doesn't matter the circumstances, there are always second thoughts and hindsight. The, "Could/should I have done something differently?" questions. And the, "How could I possibly be happy during this sad time?" questions. The truth is that we are all human, and the concerns and emotions you feel are all normal, and all OK. Just remember, that you did the best you could with the most loving of intentions, and he couldn't have wanted or asked any more from you.
I went on a camping trip the night before my father passed away, and I was taking a nap when he passed. I felt so terribly guilty about that selfish thing for so long. Until I realized that maybe, just maybe, he was meant to be alone with my mom when he passed.
You are an amazing, loving person. Don't second-guess yourself. And tell that little "guilt-demon" whispering in your ear to go away.
John would have wanted to come back, too. I'm sure that's what he would have wanted because it's what anyone would have wanted...you did the right thing.
I think my father felt the same way after my mother died. The illness, when you know death is coming no matter what you do, puts you in a weird emotional limbo in addition to the physical burden of caregiving. My mother actually suddenly died of a pulmonary embolism. Theoretically, she could have hung on for a few more weeks or months, but she just very suddenly died one day. I know he was extremely relieved that this was how she went instead of having to go through the next couple of dreadful months watching her die. I think it is extremely normal to be relieved that the cancer is gone from your life. As sad as it might be, at least now you can move on to something different than that limbo.
As far as the morphine, if you would have given it to him earlier, you might feel guilty right now that you drugged him into incoherency to soon. Those kinds of decisions are nearly imppossible to get just right. Some people who are dying may want to stay as coherent as possible for as long as possible even if there is a lot of pain. By not giving it to him sooner, maybe he was able to "stay with you" a bit longer as in knowing that you were there. Maybe he was able to hear the children when you brought them home that night. You probably used your insincts to decide when to administer the morphine, and your instincts were probably right. Trust that the love you had for him guiding your way, and you did the right things at the right time.
Take care, Lisa
Snick- I felt many of those feelings for relief when my father died, for my mom and my sisters and myself...but mostly for him I think. I agree you're normal, you're honesty and sincerity are amazing...thinking of you!
All the Best,
lil'sis
Sigh, its heartbreaking just reading this, and I'm not the one living through it. Ditto what everyone else said- I think you made the right decision under the circumstances and I can understand why you'd feel relief that its over. The moaning, sick, incoherent John that was with you at the end was a poor substitute for the real, vibrant, funny, lovable John that you married. Of course there's some relief to see that he's no longer in pain and that you are both freed from the horror that is cancer.
Thinking of you...
PS- I went to the post office this morning and mailed your gift from the Internets. Hopefully you'll get it by the end of the week.
I love your honesty - what you are sharing is such a gift to others. And I think the fact that you are willing to share really will help you to heal. Know that there are so many of us out hear who continue to check up on you every day and to pray for you and the twins.
Maureen
You know, regardless of the circumstance, we always find something to feel guilty about after a death...we fasten on to something, anything, because we can do nothing about the reality that we're still here and our dear one has gone from us. Aged 18, I beat myself up for months because I'd not baked the cheese scones my father enjoyed before he died - this despite the fact that he was too sick to eat for weeks...
Guilt we can do!
And relief at the end of cancer is utterly sensible. John was so ill, - now he is free and whole.
And you are being amazing...
Still praying for all of you x
Your sincerity is wonderful. I miss my mom, but not her cancer. And since the moment my dad called me to come home as soon as possible, I hoped for that conversation. Only after she had passed away I realized I could not have it.
Take care.
I'm glad that you feel free to write what you are feeling because guilt can be a vicious enemy. John would say the exact same things that you said -- he wants to be with you too, but he doesn't miss cancer either.
Snickollet -
I know exactly how you feel on both counts. I had to make the decision to take Anna off of life support and it was agonizing. I did not want to give up hope, even when there was none to be found. I was glad to have the clearer head of her brother there to talk it through.
I also know exactly what you mean about the sense of relief. Exactly.
I think your feelings of guilt have made me cry more than any of the other pains of yours to date. Of course you did the right thing with the morphine. Who wouldn't have longed for that one last exchange? Oh, Snick, your love for him is so evident. It pours from your words so freely. Your relief at the ending that was unavoidable makes perfect sense. Please be kind to yourself. You are an amazing woman and the best wife, ever. I have learned so much from you about how to be a better spouse, and I thank you.
After we lost my mom in 2002, my stepdad was diagnosed with lung cancer. He never told me how bad it was, and neither did his docs. In March 2005 I flew home to see him, never knowing it would be the last time. My sister picked me up at the airport. I realized I had forgotten my boots--I live in Hawai`i and grew up in the Northeast. So we went to a shoe outlet and did a little shopping and ate a little lunch and then drove an hour north to my hometown. That was his last lucid night EVER and I! WENT! SHOE! SHOPPING! instead of going right home from the airport. A week later, he was gone. O the guilt.
And Mom. A couple weeks before she died, quite unexpectedly, she asked me to have my son call her sometime. She said she wanted to hear from him more often. He was 17 at the time and I never told him, thought there'd always be time, knew how much he hates to talk on the phone. Gaahhhhh!
Guilt, especially as it involves our dead, is excruciating. I send you a hug, Snick, and a prayer for your serenity, as I say a prayer for my own.
Snickollet - I think some great comments have been made here, and I hope that you can find comfort. klynn and suz in particular, I totally agree. Above all, I would encourage you not to feel guilty or wrong about your guilt (or your relief!). The way you feel is the way you feel, and particularly in grief, you are entitled to whatever emotions you experience.
In my own sad experience, moaning is not necessarily an indicator of pain in those last stages of life; maybe a health professional can speak up and back me up here.
Finally, I am a firm believer in the fact that many humans in their last moments do have some agency about when they die. I think that John was waiting for the right moment, for your babies to be calm and happy, for you to be next to him, to let go.
Perhaps John was sick of the cancer, too, and was moaning because of that. You are such a brave, honest woman. Cancer shadowed your marriage, your pregnancy, the birth of your twins. Who wouldn't want it out of their life? But you didn't want John out of your life, and that is why you held back the morphine. You did what any one of us would have done in the same circumstances. And on some level in some plane, John loves you for it.
All your feelings are so totally understandable, and it's hard to imagine anyone judging you for them. FWIW, they make perfect sense the way you've written them. As for the guilt, I'm sure any sense of lingering doubt or ambiguity is hard, but you loved him and loved him well. There is no such thing as a perfect death.
What you wrote makes absolute sense
I agree with the commenter who said that it's really a gift that you're sharing this. And I wish I could be half the wife that you are.
Those deathbed choices are always wrenching. I think you did the best you could under the circumstances, and you can take comfort knowing he is no longer in pain now.
I think the feelings of relief are completely normal and understandable. I know my husband felt relief when my FIL died because it was so hard to see him suffer. It doesn't mean that you aren't mourning, or don't miss John, just that it's really, really hard to see someone you love in so much pain, and to live with constant uncertainty.
I think the moaning was more likely involuntary as his body was shutting down -- our docs said that if my mom was in actual pain we would not wonder we would know b/c of her facial expression, furrowed brow, restlessness etc. it does not sound like that was the case in your situation - only you can decide to release the guilt but it does not seem to be warranted at all!
Michelle
I think you did the right thing in his final hours. When you were convinced he needed the morphine you gave it. As someone else commented there always seems to be guilt after a death. No need, let it go..
I have sat with several people as they died. Each time as death came nearer breathig became more difficult and less frequent. As they lost more control of their bodies, the sounds increased. With each exhalation their was a sound similar to a moan. Like a snore, it was a result of air passing the soft palate. I wasn't there when John passed away but those sounds you heard could have just been the result of increasing muscle weakness and not necessarily a sign of additional pain. It seems that you did everything you could think of to make your husband comfortable and to give him the knowledge that he was loved and cared for. May you find peace and comfort in knowing that.
I helped my father take care of my mother when she died from cancer when I was 22 years old. Though that was over ten years ago, your description of your feelings brings me right back to then.
In an earlier post you described how very toxic your poor husband's body was getting at the end, bright orange tears and all. Well, caring for someone you love when they are that ill is toxic to the family in some ways, too. At the very end it is so intensely painful. You want to spend as much time as you can with your loved one, yet being in the same room with them and watching the deterioration can almost feel ... radioactive. It's just a terrible thing to experience, and I know that for awhile I was temporarily glad to see my mom go.
Try not to feel too guilty about this. I think it is a stage of emotional purging that, much like getting rid of reminders of cancer around the house, is good for your heart in the long run. You can let go of all that crap eventually, and then what is left in your heart is just the crystaline, concentrated good stuff that you adored.
Hang in there.
W.
If I were the one dying in the bed, and there was any chance of one last conversation, I would have wanted my husband to hold off on giving me morphine. You did the right thing.
And of COURSE you feel relief. Who wouldn't? Please don't feel guilty.
www.legalmama.typepad.com
(((((Snickollet)))))))
The thing I've admired about you for as long as I've been reading your blog is your willingness to live life to its fullest in the moment. You and John embraced life and each other and gave it all you had. It seems to me that the way you are facing John's death is just more of that. It is a good thing that John isn't suffering any more---and thinking that doesn't take away from your love for him, or your missing him.
It's too easy, and probably unrealistic, for me to say don't feel guilty, so I won't. But do be kind to yourself. As YT said, you are an amazing woman.
OH Snick,
don't feel guilty on any count. You did the best you could. And it's alright to feel relief because John is gone. He's in a much better place and not suffering anymore.
I've admired your strength since I discovered your blog and continue to feel blessed that you are sharing with your life with us.
Take care of yourself and those beautiful babies and know we are alll thinking of you.
Would it help if a stranger said the way you feel makes perfect sense? I hope it does.
Also, you started the grieving process when he was alive plus you were taking care of him. Now you are still grieving but he's out of pain and you are no longer in the caretaker role for him so of course you feel a sense of relief. But it doesn't make your grief less real. Nor does it make it any less true that you'd do anything to have him back.
Love and hugs
I am a therapist in nursing homes, so I'm around death frequently. The moaning is normal as the body is shutting down and is one of the things we use as indicators that death is near. It goes with the increased space between breaths (called Cheyne-Stokes breathing). This can go on for a short time or days.
If it helps, I have never seen someone actually hurting at the time of death from something like cancer because the body shuts down gradually and because pain management these days is really good; his dose of pain meds up until the end was probably pretty potent. There's lots of scientific stuff that's not going to make you feel better, but once the breathing slows the brain is starved of oxygen and that leads to the decreased awareness, etc. that you had with John.
I am 100% certain that people are aware right up until the end who is with them and that they are loved because many people seem to hold out until certain circumstances are met (with John, the babies were in bed, you were with him).
I'm so sad for you.
I agree with all that has been said. You are an amazing woman.
(o)
We lost my grandfather to bone cancer 3 years ago and none of us talk about the relief we felt when he passed but you can tell it's how we all felt. It's relief that he's not sick anymore, relief that we don't have to sit by the bed every day and watch him die, relief that we don't have to decide how much morphine to give him anymore, so many types of relief.
Like us you did the best you could with the situation you were dealt. There are many stories we heard about having that last moment of clarity with a loved one to say everything you thought you already had but wanted to say again anyway. Sadly, we never got that either. I try to remember how lucky we were to be with him when he died since most of the family was out of state but the selfish part of me just wanted him to open his eyes and smile one more time. What your feeling is a normal and natural part of the grieving process that took me a long time to learn.
As someone else said, moaning with exhaling in a patient who has not been needing pain medication until then is likely due to the natural process of life slipping away, not a response to pain. You may have felt that you were withholding it, but I doubt it was needed at that point -- and it didn't change things when you gave it to him, which also suggests that he was simply making noise, not trying to tell you he was in pain.
He died amazingly peacefully. It never looks like it does on soap operas, but your description sounds as peaceful as I've ever heard.
I'm so glad you are able to share these very normal feelings. Too often people feel deep shame and it keeps them silent.
If it helps, keep sharing your journey. It's an honor to read your words.
Kathleen
snick,
having a loved one who is ill for a long long time, and finally having them die is such an odd experience. you miss them desprately, but you dont miss anything about the sickness AT ALL.
my dad was sick for the last 12 years of his life, very sick for the last 10 months. heart failure, respiratory issues, kidney failure. along with this came human-failure in the creature that was his wife. hatefullness and her trying to separate me and my dad's relationship (which was attempted for the 18+yrs they were married).
i miss my dad being HERE so much. but sometimes i do not miss him much - because he is not sick now. he is not torn between two women he loves and he is not hurting, physically or emotionally... and when i think of THAT, i cant make myself miss him too much, because i do not wish that back on him. and i am grateful he is out of that dynamic and also out of all the illness bullshit.
i think of you and john and the kiddos often, and keep your family in my prayers...
love & hugs,
gypsygrrl
You are so brave and healthy to discuss these feelings. I understand both the guilt and the relief. The love you have for John is so evident that it overshadows everything else.
I've never read about death in such a loving way.
I'm so sorry. But I understand what you are writing about. Bless you.
you are an amazing woman. Your honesty and love shines through in your writing. ((hugs))
tears in my eyes.
it's weird, isn't it, how even in the midst of grief all sorts of normal emotions, even happy ones, make up your day? i found that incredibly hard to talk about when my son died...because i felt like people wanted a mask, not the mixed up mess i was.
your relief and your sorrow - and your honesty about all of it - move me, and leave me without many useful words to say in return. let me just say that i can see that John was well-loved, and that i am so sorry that you have to go on without him...but i am glad you and the twins get to walk forward without cancer dogging you so directly anymore.
you're doing a good job.
Nothing that I - a stranger - can say will make any difference...
I cannot imagine...I can only guess.
My husband said goodbye to his dad a couple of years ago in much the same fashion....and was troubled for a long time about the grief clashing with the relief....
My heart goes to you and your babies
I think your husband is relieved to have been released from cancer, too.
Snickollet, your honesty and self awareness is so inspiring. You are truly an amazing woman. I hope that some day very soon you will feel at peace with yourself and all the decisions that you and John made, they all came from your love and commitment to one another, and you both did the very best you could.
It sounds like he was moaning from something other than pain seeing as how you gave him morphine and he still moaned. Maybe he was moaning in relief. Maybe he was kind of relieved too. You did what was appropriate. You did good.
My dad just recently died after suffering from Parkinson's for some years, and I have to confess that one of my overwhelming feelings is relief, too. Now he no longer has to struggle with it. He doesn't have to get worse, to the point where he's completely incapacitated, lingering on while he's unable to do any of the things that brought him enjoyment in life. And my mom doesn't have to wear herself down to the bone caring for him.
But I do feel sort of guilty about it.
Shit, now I'm crying. In any case, I wish you the best.
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