Living With Hospice

Episode 28: Did I do Enough?

Mitch Ware Season 1 Episode 28

The last few episodes have explored the grief process as it is a common feeling before, during and after we lose our loved one. In this episode, Mitch discusses another common emotion that happens after our loved one has passed - guilt.   It's normal to ask ourselves, "Could I have done more?" and  "Did I do enough?" but it's also very easy to get bogged down in our guilt and the 'What ifs'.  Mitch shares his own experiences about this process and provides information on how to manage, and eventually move past, this phase in the end of life process.

Hello, and welcome to another episode of Living with Hospice. My name is Mitch Ware. I'll be your host today. And it's always great to have a few minutes with you to discuss lots of important things relative to these end of life journeys that we're experiencing.

Today we're going to talk about wondering if I did enough for my loved one, now that they're gone. That seems to be a common subject popping up all over social media and when I bump into people that I used to see as patient families, sometimes that comes up. So I think it's germane to what's really going on in this experience. So we're going to talk a little bit about it today. 

But before we get into that, let me say thank you to everyone who has visited our website. That's www.living with hospice.info, and especially to those who've left comments and questions. We'd love to get those and topic ideas as well. And a special thank you to those who have subscribed; thank you to all of our friends that have passed our podcast on to their friends into their neighbors and folks at church and people that they bump into that they find out that they're on an inner life journey. Our goal is simply to help and bring clarity to those who are on an end of life journey with information and encouragement. 

We aren't sponsored, we aren't affiliated with anybody, we are not beholding to anything or anyone. So therefore we're free to tell it like it is the good, the bad and everything in between. Also, I want to remind you that I'm not a doctor or nurse, I don't give out medical advice. I do have a lot of experience with death and dying as I've been both a caregiver and a volunteer for hospice for many years. I really think I've seen it all or nearly all in these experiences. So the information I share is from my own personal experience with hospice and end of life journeys in general. 

In our last few episodes, we spent a lot of time talking about grief, and how to manage our feelings before during and after we lose our loved one. You know, we all suffer from grief, and our emotional and mental health are determined by how well we manage our grief. With our next few episodes. We're going to take a look at Okay, I've lost my loved one. Now what I've been hearing and reading a lot lately about guilty feelings, you know, stuff like I didn't really do enough for my loved one. One person told me guilt is eating me up. I did my very best. Or at least I think I did. I hope I did. But could I have done more? A lot of people wonder, did I stop by and chat enough? Or did I give him or her enough of my attention? Did he believe me? When I told him? We were glad that he was our dad? Did he also feel loved? Or I hope she knows her life really mattered to me. And to lots of people. Even though I didn't really come out and say that exactly to her. 

And my own personal doubt, I could have done more. 

I could have done better.

I should have done better.

Can you relate to coulda shoulda woulda?

Are these the feelings that you're experiencing now that your loved ones passed on? If so, there's good news. You're not alone by a longshot. We can drive ourselves crazy  second guessing our actions. You know, I think we're all pretty good at Monday morning quarterbacking and one thing we like to quarterback is our decisions and our behavior after we lose someone like I said the good news is we're all human. And this feeling of shoulda coulda, woulda, the self doubts, the inadequacy, the insecurity, it's all part of being human. It's all part of our grieving process. 

I can't tell you how many nights I've laid awake, wondering if somehow my son's brain cancer was caused by something I exposed him to, or something that I should have protected him from? You know, do you have those thoughts too?  

The truth is, you know, we can wonder and ponder and try to figure out all these answers to all these questions until the cows come home. And all it will do is just continue to drive us crazy. And speaking, for those of us that always want to fix things that are broken, if we accept that we never could have known or change the outcome. We must accept that some things that happen are well, they're completely outside of our control and, and that's a hard pill for many of us to swallow. Pun intended!  

As long as we hold on to our guilt, and we stop our own healing by doing that, and we stop our ability to move forward with discovering our new normal, so how do we deal with these thoughts of inadequacy or insecurity? Or what if I should have or I wonder if I could have or or I shouldn't have? Or I couldn't have, right? I didn't, but I, but I wanted to, but I was afraid or guilt, guilt and insecurity. What about these thoughts? 

Well, they're real- first of all.  They're common, second of all, and that's kind of how we're wired. It's part of our, it's part of our grieving process. In my experience, I've come to realize that number one, we have to acknowledge that we're normal, and in what we're feeling is normal. And others feel this way, too. They may not express it, and some of us are really good hiding it. But everybody feels this way too. 

Number two, share your feelings with others, especially those on the journey with you. I have a great wife, who was my partner in this entire experience with our son, we partnered up on this, and I also had a great best friend, who's always been there for us. I mean, the highs and the lows, he's always been there, and I could share my feelings with him, I could cry in front of him, we could laugh together. You know, we've talked several times about how on this end of life journey, you need to have a partner, you need to have someone that you can turn to an accountability buddy, somebody who can help you, when you when you're burned out, they can, they can put you on the bench for a while in go in in your place. And that's the role that my wife, and my family and my best friend, and my wife's best friends and family helped fill for us. 

Number three is is guilt or second guessing, actually overwhelming you and affecting your way of life right now? You know, often our guilt thoughts, whether rational or irrational, and a lot of times they're irrational, but they're there, nonetheless.  They start to just I don't know, consume us. That's all we can think about. It's how we feel. And they can drag us right down into one of those bottomless emotional black holes, the kind that are full of isolation, despair, and far too much wine, and half gallons of ice cream. You know, what I'm talking about? That deep, deep depression.  

I realized that when I have these feelings, and I have these thoughts, I have to shake myself, I have to clear my head and get perspective and see things for how they really are. And I have to bring that knowledge forward.  "Hey, I'm going through grief right now I'm going through this huge loss. I'm not alone, I need to talk to my buddies about this, or my friends, or a therapist, and this is overwhelming me so I need to get moving on this right away."

 And the way to do that is number four get perspective. Things are they're not as bad as you might think, first of all move beyond that "I should have, I could have, I would have" into the "you know, yeah, that was I maybe should have done this or maybe should have done that. But you know, I did do this. And I did do that." And recognize all these wonderful things that you did do. We sat and sangand and we talked, we talked about my childhood, we talked about their childhood, you know, there were really high quality, wonderful things that I didn't know, and wouldn't have known if I didn't ask or if I wasn't in this particular place at this particular time with my loved one. 

So allow yourself to say, you know what, this wasn't all bad. In fact, there was a lot of good there. And I did the best they could with what I had and what I knew to do, and what I had worked with. 

Okay, so let me suggest that when a negative thought pops into your mind, tell yourself "No, I'm not going there right now. I did the best that I could", and move on. Move on to something more positive to think about. I have to do that. I confess, nearly daily, I have to do that. And I know this sounds easy. Maybe it sounds corny, but it can be done. It can be challenging for some folks, but it can be done. Go to something you like, think about something that that brings you joy, or encouragement or get you excited.

Number five - extend grace to yourself. Man, that's huge. Extend grace to yourself.  

Easier said than done. I know.

Because sometimes we get on this. I'm so upset with myself How stupid I was or, or how inconsiderate I was. Or I'm so embarrassed that I did that or that I didn't do this or whatever it is.  It's time to say enough.

Forgive yourself. By the way,  forgiveness doesn't mean condoning or excusing. But more often than not, forgiveness is accepting that we may have done something we regret, and finding a new attitude of perspective towards ourselves in relation to that whatever, whatever we did or didn't do, or say or didn't say, or whatever, it doesn't mean we forget. That means we find a way to move forward.

What is the worst thing I can do? Number six.  Glad you asked. He says, 

The worst thing you can do is do nothing.  To wallow in your grief, whether you're in anger, or depression, or denial, or whatever, the worst thing you can do is to do nothing. And let things just stay status quo. The worst thing you can do is to stay in a mental and physical state of loneliness, and quietness. 

Now, don't get me wrong, we all need some quiet time to ourselves to deal with our loss. We need time to cry, we need time to shout out, to mourn. I remember my son died, I told ourfamily, which now I kind of wonder if maybe it was very polite at the time, I didn't care. I said, in the afternoon after the memorial service, our little family, my three sons, and my wife, and I just want to cocoon at home. We don't want to entertain, we don't want a whole bunch of people coming over. There'll be time for that later. And we just came home and cocooned. And we cocooned for quite some time, actually. I took a year off work and just dealt with my grief. And in my situation that worked out, okay. Some folks, they don't have that luxury, and they have to go right back to work. And they have to do things that that sometimes are painful.

 In the grief cycle, we want to spend time in in each spot. And we don't want to deny those feelings. But when those feelings last too long, especially anger and depression, things that really impact those around us, then it's time to move forward. Does that make sense? If we sit there in that spot and do nothing for too long, then it's counterproductive. 

I recall going down my son Matt's house and going in the basement, and just shouting and screaming like a madman, I wasn't angry at God, I just missed my son so much. And I would pick up his sweater off the bed, it was still there. And I would smell it, as it had his essence in it. And I felt closer to him doing that. I know that sounds weird to some people to other people, it makes perfect sense. But you have to, you have to get to the point where you decide - Okay, now I'm going to take a step forward into my new normal. 

Number seven, move on even when you feel comfortable in the darkness of depression. Well, that is the lure for us to come into their into that state of depression and stay there, it's like, I'm just gonna stay in bed. It's warm here. I'm protected here. I don't want to get up, there's nothing I really need to do, or there's nothing I want to do.  THAT isn't healthy, nor positive after a while.  It  isn't going to help you move forward to stay in that dark spot. And if you stay in in that dark spot too long, you need to talk to a professional. You need to figure out your feelings so that you can move to the next step in a healthy way. And you know what?  Hospice can help. Hospice has counselors that are available for grief support after your loved one passes away. 

Number eight, put your faith into action. If you forgive yourself, and you've started to let yourself heal, then you can put this newfound faith in yourself into action. In other words, trying to use your guilt to help others. Helping others is sometimes the best medicine for healing our own brokenness, in whether it's educating others so they can avoid the mistakes that you feel guilty about. or raising awareness about things like causes of death, you know, from everything from like, heart disease, to substance abuse, to drinking and driving, to suicide, all that stuff. Or you can simply just encourage others to talk with their family about end of life wishes.

I get asked the following quite a bit.  Will my grief ever go away?

And I always say... no, no it won't.  But it will become manageable, and you can turn it into a mechanism to help you help others and become positive. 

And that in turn really helps you heal. 

That's exactly what I did, and continue to do. I go to people in their beds and in that are dying, they're on their deathbeds. And I make music and we tell jokes and we laugh. I tell them about my grandkids, I tell them about my horses, I tell him about lots of stuff. I get to know them, I listen to their stories, and I engage them. And I let them know that they matter. And I can't tell you the number of times I've been so blessed in this work. I can't see myself really doing anything else ever. The laughs, the tears, the smiles, the hugs, the feeling of being a real blessing to others, when they need it most. There's nothing like that on Earth. 

Let me leave you with this story. There was a woman on the south end of our county here, she lived on a farm with her husband and three kids. And she and her husband were soulmates if there ever were any.  You know, there, that kind of there, that couple that just had a special something a connection that you rarely see anymore. If you got to know them, you knew that they really loved each other, they supported each other, they lifted each other up. One was the Ying to the others Yang and all of that. 

They raised their kids to have a very strong love for family and others and community and to have a strong sense of who they were and where they fit into the world. To say their family was really close would be the understatement of the year.  When the kids grew up, and they left the nest. and Mr. & Mrs. were left on the farm in his big old house by themselves, they downsized.  They built a smaller house on the other side of the several hundred acres that they owned, and they planted fewer acres of crops. In fact, they actually leased out some of the acreage to other farmers. 

They both began to get more involved in community activities and church activities, Mrs. began to write short stories. And after a while, she got really good at it. She was self published, like most people are under stories, and she put them in these little books. And you could get them at some of the local shops and bookstores around here. And she'd sell them at farmer's markets to along with vegetables and fruit that they had grown there on their little farm. Her books are really not children's books, per se. But they are illustrated kind of like that many parents bought them for their kids. But the stories were about life. And they're about farm animals who can speak and relate to one another in a human way. Now, I know this is no new approach to these kinds of stories. But her particular way of telling stories just seemed fresh and new, in resonated with, I don't know today's mentality of how life is in society. And after a while she grown a lot of followers wherever she would go and do a book signing or whatnot, the place was packed. It was kids and adults. And you know, all around the world, people were sending her notes and emails and just loved her tales of being a critter on a farm and to find out, you know, where you fit in your purpose in life, how to get along with others, especially those who might want to eat you for lunch. Her books were amazingly inspirational. Because you know, there are people out there that just are ordinary, they they're looking for a fight all the time. And they want to eat you for lunch!!!  

Last fall, she was invited to bring her books and do what they call a signing session or an autograph session in a big bookstore in Chicago. And we're only a couple hours from Chicago. So she said sure her and Mr. packed up the truck and they went they were really excited. She was a little terrified. But Mr. was really supportive and really helped her get through it. So they packed up the truck and off they went and the event was really a huge success. I mean she sold every book that she had with her and she took orders for dozens and dozens and dozens more. In the bookstore, the manager there wanted to put her books out in the store window for the holiday season. Wow, life is good. On the three hour drive home she noticed mister was having back and stomach pains. Of course running through your mind what did we eat and I wonder if something was bad in the salad or whatever. By the time we got home, those pains are pretty severe. When asked, he confessed that he'd had these off and on for quite a while now several months and she told him to go call the doctor. And he said "yeah, okay, yeah, I will. It's too late now but I'll call in the morning. "

And you know how that story ended. Old farmers don't like to call doctors.  A lot of guys don't like to call doctors.  So that call was never made.

Over the next few months. Mr. Mrs attended many book signings, and she loved it. She enjoyed it. You could see it in her face. She just loved how people resonated with the stories and the happy endings. But you know, her heart was troubled as she watched Mr. Go from an occasional pain to violent coughing, pain so bad it would wake him up from a sound sleep and he would moan and groan and sometimes shout out. He could no longer carry the boxes of books to and from the truck. 

She finally took him to the doctor. And after a few tests, they received the news that he was basically filled with cancerous tumors. His time was short. So they called in hospice and within a few weeks, Mr. was gone. 

And like many of us, Mrs. blamed herself, and she was consumed with guilt for not saying more for not making him go to the doctor sooner for letting him mix and use dangerous farm chemicals all those many years without taking proper precautions. She felt like his death was somehow her fault. So she cocooned - for months and months which went into years. No writing, no visiting really no activities except to go to the grocery store. It wasn't until she met a woman who worked at hospice as a counselor that she began to gain her perspective. Her soulmate, her hubby was gone. She did the best she could given the dynamics between them. And his death just really wasn't her fault. But the pain was still very much there. 

The Counselor suggested that she come to a grief support meeting and the Mrs.took her up on it. And even though she was reluctant, she did go. While there she discovered other women who had strong willed husbands, that felt pretty much the same feelings of guilt and insecurity that she did. And they learned how to express those feelings to each other, how to get how to get it all out.  Of course, that included tears, but included laughter too. They learned how to get perspective for those feelings, and how to actually put those feelings to work. 

Mrs. turned to what she felt most comfortable doing. And that was writing. She began to journal, she began to listen more intently at her grief support group meetings and began to understand what grief is how it impacts us, and how to manage it, and how to make something positive from it. She started to write books about it. And using the critters in the barn, those were her characters, she began to write about different parts of feeling loss, and grief in general.  She would do a book about each step. Her stories were a little deeper now and very profound. They're encouraging and she helped a lot of people to start healing. 

So let's summarize and clarify a few things. After being on the very exhausting rollercoaster of caregiving for a loved one, how do I manage these feelings of doubt and the coulda, woulda, shouldas? How do I manage the feelings of possibly letting my loved one down by not doing or saying the right things? 

Second guessing and self doubt can cripple us, so the first thing we need to do is realize that there's some good news here - WE ARE ALL HUMAN!  And this feeling of inadequacy or self doubt? Well, it's part of being human. And it's part of our grieving process. 

We need to know that we need to share our feelings with others. If we bottle it up, eventually we explode. 

We need to get perspective. Things are not as bad as we might think and we need to move beyond by putting the 'I should have' or 'I could have' or 'I would have but I didn't know" - and all of that -  into other things. 

Think about positive things. Think about the wonderful moments that you had, and realize those precious moments are worth more than gold. They're worth remembering. They're worth putting in your mind and saying, that was fabulous. What a blessing. Thank you, Lord for that. Allow yourself to say, I did the best I could with what I had to work with and what I knew. Be at peace with that knowledge. 

Extend grace to yourself, forgive yourself. And that's huge. Forgive yourself for whatever you think you failed at, or did or didn't do. We're not perfect. There is perfection, in our love for our family and our friends. And when we're caregivers, we express that love and find peace in the knowledge that you showed up, and you showed love, and you had compassion for your loved one, and that they had a better journey a better rest of their life. Because you did. 

We also learned today not to sit idle, don't do nothing. Yes, we need to mourn. Yes, we need to take quality time alone for yourself and your family. But after a while, we need to walk back into the light. It can be hard, but we need to get back into the world. 

And finally, will this grief ever go away? The answer is No, it won't. But it will become manageable. And you can take and turn that grief into a mechanism to help you help others which in turn helps you heal. 

Thanks so much for sharing your time with me today. I really appreciate your support and sharing this ministry with others. Please visit our website at www.livingwithhospice.info and let us know how we're doing. We love getting your comments and your questions and your your notes. And while you're there, please hit the subscribe button so that you don't miss a single episode. 

Until next time, I'm Mitch Ware for Living With Hospice. Have a blessed day.

Transcribed by https://otter.ai