I don’t know how many times I have started a post about “spirituality”, faith and beliefs, and what it all means in light of the recent deaths I have been dealing with. It’s a stumbling block that I keep getting tangled up in. But the blogging world is full of engagement, inspiration, and truly good writing, and I like where it can take me: away. I follow SwiftExpression, a very thoughtful and engaging blogger, and she recently posed some challenges. The one about “guilt” seemed like a meaty one to sink my teeth into. I actually thought I could write and avoid the topic of death, but nope. It works its way in everywhere. So here goes.
Blog Challenge: Does the feeling of guilt serve a purpose? If so, what is it? If not, why not?
I’ve always been someone who has carried “guilt”. Apparently, it is a part of who I am, though I’d like to change it.
When I was in high school I had an english teacher who had us reading a lot of “heavy” literature. I thought it was depressing, Crime and Punishment, the Metamorphosis into a giant cockroach, by Kafka…we were just getting ready to drown our teen problems of pimples and broken-hearts in *another* 50lb. Dostoevsky novel, when I had to put my foot down. (Don’t get me wrong, in hindsight, I am glad I read these books, but at the time it seemed like an endless train of angst-ridden stuff. And frankly, it was bringing me down!) So I expressed this to my parents, and there was a discussion with the teacher. But instead of feeling proud for having stood up for myself, I felt guilty – worried that I’d “hurt the teachers feelings”. I told my dad that I felt bad, guilty. He said, “Guilty!? Guilt is a useless emotion! Why carry that around? It doesn’t bring anything.”
Hmmm. A useless emotion. I heard what he said. I might even have agreed with it. Yet, even as an adult, I can’t seem to overcome feelings of guilt. When I speak up for myself, it comes with guilt. When I point out the truth in a situation, it comes with guilt. When I ask for something I need, it comes with guilt. When I return shoes to the store…I feel guilty for putting the store through the trouble. Ridiculous. Even just a year ago, when I asked for a hard-earned raise, I felt guilty when I got it. Seriously, even I find it laughable!
But the questions posed in the challenge offer up a good opportunity to explore this guilt.
In situations where it seems obvious, like doing something we know is wrong, guilt is our conscience, isn’t it? So yes, it serves the purpose of reminding us that we know “right” from “wrong” and if we feel guilty, then we have done something “wrong”. But what about the other times…like the ones I experience, where I feel guilty because I think my actions, words, or decisions, are of “lesser value” than those of the people they might effect. That’s really what’s going on, isn’t it? At least it is for me. It is a reflection of my true nature, ever the “accomodator”…feeling that other people’s needs, or feelings, are more important than mine.
Especially in the world of grief, after a death, there is a lot of guilt lurking around. It’s a big topic of discussion in blogs and support groups. I have, and probably will continue to experience it. My husband died in a whirlwind of 4 months. We were in complete shock, getting yanked around by the high speed train of cancer and doctors and treatments barely keeping our heads above water to reach the inevitable end-point, his death. Our only goal, really, was to try and slow the train down enough, so that my husband could leave this world without pain or medical drama. I’m not sure it went that way, exactly. He had pain, but eventually he was filled with enough drugs to (hopefully) escape it.
I really try not to dwell on what I did and didn’t do in his last months or last moments. I can stand back, and somewhat objectively see, that I did the best I could do.Yet there is a nagging voice regarding his last day alive…our last night together. The voice of guilt.
I was so tired. I had been coming and going to hospice, staying almost every night. I didn’t sleep much, wanting to be available, ready to call a nurse if needed, as he was in and out of sleep/consciousness. During this sacred time, what would be his last night alive, I could have been praying, or holding his hand, or saying kind things to him, or just “being” with him, but instead, I needed distraction. I had to send my mind away to be able to cope with what was really going on. I guess in a very loose way, I was paralleling his journey…I too, needed to escape my pain.
On his last night, I had downloaded Downton Abbey onto my iPad and throughout the night would watch it from the chair I was sitting in, next to his bed. If my husband had been sitting next to my deathbed watching movies on his iPad, I would have been insulted and pissed!! But I am not superhuman. Nor am I psychic. I didn’t know it was going to be his last night…and even though we all know a person goes to Hospice for one reason only – to die – I guess I just couldn’t absorb that truth until the moment it happened. Of course I dropped my iPad the second something changed in his state, and in his very last moments, I held him, and spoke to him and cried, but the fact that I couldn’t be “fully present” that whole night is what has had me feeling guilty.
But it’s time to let that guilt go. My husband and I were pushed to our limits as individuals, and as a couple. And there came a point in our journey together, a point that I had feared all along, where our paths as a team would have to diverge. Where he would have to do what he needed. And I would have to do what I needed. Even our rings, mine gold, his titanium, a physical symbol of our union, would not be able to bridge the gap between (my continuation of) life and (his) death.
So as this feeling of guilt keeps cycling back, I see the opportunity to change my relationship with it.
I agree with my dad. The emotion itself is not worth carrying around – yet I think its existence is of great value. Guilt might very well be the flag that goes up, reminding me, “hey! you just did what you needed to do.” But in these cases where it’s not about right and wrong, that flag should go down, as quickly as it went up. Not stick around like a buzzing mosquito causing me to second-guess my actions or decisions. I want to start treating it like a “hot potato”. React to the heat as it hits my hand, then quickly send it on its way. Decision made, partly from the mind, partly from the gut. A completely natural reaction…no time to mash, hash, bake or make fries of it.
So that is how I see my last night with my husband. Guilt might send up the flag to remind me of the moment that we had to go our separate ways, he dealing with his pain, and me, doing what I needed to do, to deal with mine. But I won’t let it challenge my instinct and reaction to protect myself. I did the best I could do, and that has to be enough for me, and him. No more guilt about it.
bedraggled & kicking 
For 5 1/2 months I went to my husband’s bedside almost every single day. I missed a day here and there, but for the most part, I was at his bedside.
The weekend before, I found a reason not to go on the Friday, I had a planned reason away on the Saturday, and on the Sunday it was a beautiful sunny day and I didn’t want to be in traffic. The Monday is the day he made the decision to turn off all machines.
I try not to, but I can’t help but wonder, at the lowest and saddest times, if I had been there those 3 days, even 2 of them (the Saturday was not possible), would he have still made the decision? Or would he have tried a little harder, a little longer and made it through?
I regret not spending those days with him, but I know that I did what was right for me, and our children.
The guilt I have comes from… did I do enough?
The answer, for me, is yes. I did enough. I did what I could and that was enough. I couldn’t do anymore than I had done – after 159 days I was tapped out, and needed a break. I wouldn’t have begrudged him the break, and I know he didn’t begrudge me the break. I regret the days not spent with him though.
You did enough. You were there, and had no way of knowing that that was the last night. You did what you needed to do to be there for him.
It’s so hard to understand what it must be like for the person, like your husband, making the decision – a conscious decision – to turn off the machines. My dad also chose to end his dialysis. He made the decision to do his last treatment, and I had to get on a plane as quickly as I could to make it back in time to still see him alive…the fact that he didn’t even know if I would be able to make it in time, it hurt me for a moment. But only a moment. The profound truth was there. He was suffering so much, he couldn’t take it anymore…for anyone else, or himself. What a decision. The most profound decision a person can ever make. A decision many of us won’t ever even face. It still takes my breath away. But I can relate to the feelings of regret, it’s more about just wishing there had been more time, that every single moment had been cherished, but like you said, we can only do as much as we can do.
Great post. Guilt is a very heavy emotion to carry. Guilt is one of the strongest emotions I felt after my mom died – for both things I did and didn’t do. Things now I couldn’t change. But I still felt the guilt. It weighed so heavilty on me for such a long time.
Thank you for sharing this. So much of what you write echos my own experience, from the 4-months-of-cancer-hell to the guilt. My husband was in the hospital for the final four weeks before the four days of hospice at home and then his death, and I sat by his bed for hours every single day of that time, but what haunts me is that I spent only one night there, when he was hallucinating so badly that I couldn’t leave him. And now, in retrospect, I am torn to pieces by the fact that I left him alone there night after night (and curse the assistant who greeted me one morning by telling me he’d been asking for me and wondering where I was when I wasn’t there early one morning). I understand intellectually that I would have been non-functional had I stayed there 24 hours a day every day, and a therapist reminded me of that fact over and over again, but the guilt is still there, for that and for all sorts of other things. Thank you for your elegant expression of what you’re dealing with.
It is so hard being the one left behind, dealing with memories and regrets, both good and bad. I guess that’s why I try to remind myself that we do the best we can. And that at some point, the path that our loved on is on, dealing with illness and their mortality, is their path alone. And no matter what we do, or how we try to support them with our caregiving…there are some things they have to go through alone. Just as we, now, also have to go through this alone.
Absolutely brilliant post. Tragic, heart-wrenching, but so powerful and so profound. Really, I mean, it must have taken heroic strength to write it.
Thank you so much for sharing that as part of my Blog Challenge. It means so much to me. I know you have kindly left a link to it on my blog, but sadly the stats show that most people don’t bother to click on links, and I think people should read this. As many people as possible, because I know it can help other people out there.
Normally I would ask someone if they would mind copying and pasting it and leaving it as a comment on my blog, but given your circumstances, I would be happy to do that myself, with your permission and giving credit to you, of course. I would love for my readers to see this. It is a truly exquisite and insightful exploration into the subject of guilt combined with the tragedy of grief. Sad but so beautiful. Would it be ok to add it to my blog as a copy-paste? I can do it if you prefer.
Thank you, of course you can add it, whatever will work best. I just didn’t know how. (And my post seemed too long to be a comment.) Sorry to be such a newbie, but if I want to add an image for your Visual Tribute challenge, I would post the image on my page, then what is the best way to link it back to your challenge?
Oh thank you so, so much for agreeing to post it on my blog! You can certainly just leave it as a comment if you scroll way down to the bottom. It’s not too long, don’t worry. 🙂
And as for the visual tribute, I am *delighted* that you would like to do that one. All you do is take a photo and upload it to your own blog just like any other photo. Then leave me some feedback, and I will take care of the rest. 🙂
I really appreciate your contributions; it means so much to me. Thank you. x
Yes, we did the best we could and it was enough. Regardless of what we did, it was enough. Being the one left behind is hard and I have to agree with your dad … “guilt is a useless emotion.”
Thank you for expressing so honestly the wide range of emotions and scenarios that play out in our heads and bodies after we go through something so life changing. Our paths have some parallels, in that my husband also passed away from a brain tumor, although with a slightly longer journey of 15 months. He died in June 2012, so I’m just behind you on that timeline. I can relate to so many of your posts, and appreciate you writing out your experiences.
I wanted to comment on this post, if I may. My husband was also in inpatient hospice because the brain tumor had stolen his ability to control his body, and we needed help to do even simple things. It was the best possible place for both of us, and gave me a chance to breathe, which I desperately needed. The intensity of caring for him completely drained me, although I am grateful to have had the opportunity to do it.
We had one last real conversation, which was very sweet, and the only time he was able to accept that he was dying, so we finally talked about some of the important things. I took notes as we spoke, but couldn’t open that notebook for a year. Later I was glad that I had it, but it transports me to that time of intensity in a heartbeat.
The night before our last conversation, he wanted me to stay in the room with him. I had spent hours and hours and many days and nights with him, and on that night, I just couldn’t get comfortable. We ended up having a slight argument, and I knew that I needed to go home and get some real sleep. I knew the end was close, but I also needed some space for myself. I’m glad I did that – I think our paths, just as you said, were beginning to diverge drastically at that point.
I came back early the next day, we had our final conversation, and then the next day, he slowly slipped into a coma. I sat by his bed for hours, holding his hand, calling our families and letting them say goodbye while I held the phone up to his ear, and I talked to him as well.
When that was done, I thought about what I most wanted at that point. And actually, it was popcorn. I love popcorn, and we had spent many nights together watching movies and eating popcorn. So I popped some popcorn, and sat next to him while I ate it, and it just made things seem more normal, as odd as that sounds. I watched the sun set and took pictures of his room so that I could always remember that time, and I just “was”. It was one of the most peaceful times of our whole journey. I know he knew I was there, and the popcorn was a good link to normalcy and my ability to see that I might still have a future – even though he wouldn’t be physically with me, I could still eat popcorn and think of him.
Now that I write this all out, (I’ve never tried to explain my popcorn theory before), it is very hard to put into words all that I was feeling. I just wanted to acknowledge your Downton Abbey experience – I, too, downloaded it on my ipad and watched it as I sat with him during those days – and to say, “Life really does go on”, whether we like it or not. And I sobbed and sobbed when Matthew died – it just hit way too close to home. I guess what I’m trying to express is rather than feeling the guilt which can arise so easily (and I like your idea of smashing the emotion immediately), maybe it’s good to remember that we can do hard things….and that a semblance of normalcy can be a blessing…a way to link the past, present and future, even with something as simple as popcorn. 😉 I wish you well on your journey.
Wow, thank you so much for sharing your experience, the popcorn…seeking normalcy, being at Hospice, yes, I can completely relate. Also, when Matthew died in DA, though it was months after my husband’s death, I felt sick. It hit too close to home. I’m so sorry you lost your husband last year, too. It’s a tough, lonely road, but even reading your story brought me comfort. Wishing you well. xx