Hope for living, loving and caring with no regrets!

Episode 19

Rayna Neises, ACC, host, and Aly Neises, RN, cohost, explore the emotions of caregiving, focusing on grief in response to Laura Beth DeHority’s episode #18.

  • Processing emotions is crucial
  • Grief begins the day of diagnosis
  • Feel the feelings, figure out how to process them
  • Anticipatory grief is a part of caregiving
  • Grieving is healthy and it is different for everyone
  • The Mourner’s Code by Dr. Alan Wolfelt
  • Remember to extend grace to yourself and others in grief


*Transcript is an actual recount of the live conversation
Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host, and Aly Neises, our cohost, and we will be discussing more the emotions all caregivers feel as presented by Laura Beth DorHerty last week.  Laura Beth had a ton of information for us and I really appreciated her going so thoroughly in-depth about all the emotions because I think as caregivers, honestly, there’s so much to do we often ignore our emotions and I think it’s important for us as caregivers to look at that more.

Aly Neises: Yes. I agree. A hundred percent. I think sometimes looking at those emotions and identifying them is almost too scary, especially when you’re in the depths of it. So I love that she’s willing to shine a light on that. So our listeners can kind of identify those emotions as well. And move forward with some of that. She talks about some of the feelings of just the pure exhaustion that can come with those emotions, it’s a lot to handle.

Rayna Neises: It is, and the key is processing it, which she brought up over and over again, processing those emotions. Keeps them from becoming overwhelming and pushing us down into the pit of depression, but we often just ignore them and therefore we don’t process them. And then it becomes this big, huge issue that is really difficult to handle. So I really appreciated her perspective on just reminding us that, emotions are normal. these are emotions that should be expected and they’re not fun, but they’re part of life. And part of what we need to do is go ahead and admit that they’re there and process them. And I remember, throughout my caregiving season, I had that drive from where my dad was to the farm and it was almost four hours. I think that was really a good thing for me because it was a decompression. There was so much time to think about what had happened that weekend. What had gone well, what hadn’t gone well, and just start dealing with any emotions that I had there frequently, they just bubbled up if it was sadness, because I’m just watching him disappear in one more way. Or if it was happiness, just because a fun thing that we did came to mind, but I did have a lot of processing time and being an introvert. It was really good for me to have that quiet time to do that for myself because it did help me recharge before I reengaged with my life on the farm. a lot of caregivers don’t have that time and don’t know how to take that time for themselves.

Aly Neises: I love that she talks about how the emotions can come flooding, especially in the beginning, that day of diagnosis, you kind of start this grief process. and the normal emotions that go with that, the anger, the denial, the isolation that you can kind of all kind of feel immediately, and then to slowly process through those things. So you can move forward and help take care of the person that you’re supposed to take care of. That’s the goal. So walk everyone all the way home. And we can’t do that if we’re stuck in this anger phase,  we have to process that and move forward and work through some of that. But also to just identify that it’s okay to be angry. You have that right.  We become more able to identify those emotions and to accept them the easier they are to deal with it. My mom has always told me, I can’t tell you that your emotions are wrong and she’s right.  It’s validated that you feel those things, especially when it’s something that kind of comes out of the blue when you’re talking about a health concern or especially when we’re talking about people that we love.

So no one plans for taking care of their loved ones.  no one plans for that journey to be difficult, you know, especially when we’re talking about dementia or cancer or things like that, that’s not what we want. And so it’s okay to be angry and frustrated and sad all at the same time. Not only for the diagnosis that you just received but the future, the today, the things that you aren’t going to be able to do 10 years down the road, that’s okay. It’s completely okay. And it’s okay to have a fall apart. Just knowing that you can fall apart and then try to pick up those pieces and move forward.

Rayna Neises: A couple of things that you said that really stuck out to me, first of all, the diagnosis. I totally agree. I think so many times we don’t even hear the diagnosis completely and we certainly aren’t prepared for it. And I don’t know that our doctors are even ready to be able to share that in a way that, can give us comfort or can help us to understand what’s coming and that’s one of the things I think hospice does so well is helping you to prepare for what’s coming, helping you to understand this is what it’s going to look like. And it would be really nice if there was more of an opportunity to process through that with the diagnosis. We’re too much in shock to do that initially, but I don’t think we ever come back to it. It’s kind of like, okay, I’m giving you that label. And now we just are in the run with the plan, whatever that is from here, but we don’t really go back and deal with all that can be expected through the entire process.

The other piece of that is just that fall apart. I think that is what most caregivers are afraid of is that I’m going to fall apart to point that I’m not going to be able to put myself back together again and do all the things that need to be done. And that fear of hurting too much and being too many pieces to be able to be put back together again, like Humpty Dumpty, it stops us from acknowledging any emotions and that’s when oftentimes then those emotions overwhelm us because we have not allowed the small times that we’re feeling, to be expressed to be processed. And so it does lead to that total fall apart. That makes it really hard to step into doing what needs to be done.

Aly Neises: You are exactly right. And I tell a lot of my caregivers that I help with this journey. We’re talking about terminal diagnosis is when, in my line of work, a lot of them are coming to us and they haven’t, they got a diagnosis a while ago. They didn’t process that diagnosis then a lot of them. We’ve kind of talked about this before, but especially with cancer, the next plane is treatment, so we’re going to fight. And when they come to me, they’ve been fighting for months, years, sometimes decades. And so to switch that from what do you mean we’re not finding anymore? there is nothing else to do that is devastating to them. And they, a lot of times can’t switch that. It’s hard when you’ve always done certain things to move forward.  The focus has always been to take care of them to make them better and now our focus is going to be more about the comfort and the quality of life and that’s hard. And so I really encourage them to take some time and just process just what hospice means and what that whole thing is about. It’s a big pill to swallow, sometimes it’s too much to swallow at once. And if that’s okay too, like just slowly process it. But I worry about the ones that don’t try to start that process when I first come in, because I know eventually, I’m not going to be there on a daily basis, weekly basis at the least to help walk them through that journey to help guide them.

And so that’s what worries me is what’s going to happen when we aren’t here physically. And our loved one isn’t here anymore. If you don’t deal with some of those emotions and the anger and frustration, it’s going to come apart and like, you’ve already said, you’re going to fall in that deep pit of despair and you’re not going to be able to climb out it’s too much.

Rayna Neises: So again those things for our listeners is just. To realize that those emotions are normal and that they have to be processed, that we have to feel them and to ignore them is just setting ourselves up for a big fall. getting the help that you need to do that again. I think we sound like a broken record sometimes because we just keep telling people, get the help, get the support, whether it be the support in bringing help in to help you, but also support groups. I just, come back to. What a blessing. It is to be able to walk alongside people in support groups and offer that space for them to feel what they’re feeling and to say your feelings are valid and it’s okay to feel what you’re feeling and to offer hope in the midst of it, that you won’t fall apart and not be able to do this again. But you do need to feel what you’re feeling. So find that support group, find that counselor that you need, that coach that can come alongside you to really just help you process it because it is hard to process alone.  It’s much easier to do with someone else. And that’s why we’re here. That’s why there’s professionals that are looking to support you as caregivers. So take advantage of those opportunities to really start to deal with all of the emotions that you’re having. And I think the big emotion that we come back to each time is grief. Grief has many stages, many emotions, anticipatory grief is what Laura Beth talked about is realizing that, there is an ongoing process that we’re doing as caregivers that we’re on this journey and grief is a part of it. It doesn’t look the same as grieving a loss, but it has very similar emotions.

Aly Neises: I love that Laura Beth talks about anticipatory grief. It’s something that I’m very passionate about like you already mentioned grief when somebody’s gone, suddenly is going to be a little different than this kind of grief, but it doesn’t make it any less impactful or less important. You know that day of diagnosis that you get, that a grieving process begins and it’s normal to grieve the future. It’s normal to grieve the plans that you’ve made, but it’s also normal to grieve just the loss of today. Nothing is going to be the same from here on out, and that’s okay. But to understand that we have to move forward and kind of go through even those stages of grief, also in a normal process as well.

Rayna Neises: The point in diagnosis for our family, for my dad, was devastating in that we have already walked the journey with my mom. So we knew that it was going to be difficult, but it was also 14 years. It was a very long time. So we knew it was a terminal diagnosis. We knew there was no medication that was going to stop the progression of the disease, we also knew that it was going to belong and not really any idea of when the downturns were going to happen, that kind of thing. And so there was grief all the way through grieving just the times that we couldn’t have those conversations anymore, that we’d always had before, you know, not being able to be as independent as he’d wanted to be just so many benchmark times that I think of just really having a process that sadness.

But as you said, it was a totally different sadness once he was gone and knowing there was never going to be that smile, that hug that laugh. just that relationship that we had had for so long before, and had little glimmers of, as I was caring for him during that longer period of time. It’s a tough thing. Grief is, is hard because it is different for everyone it’s different in every situation, but it is full of emotions that are overwhelming oftentimes.

Aly Neises: Working with the people that I work with a lot of times we talk about, the benefits. Having that time to prepare, you know, say your goodbyes solely know that it’s coming, make peace with that. But I think it’s also really difficult. It’s a different type of grief. Like we’ve already talked about. Cause you are, you’re slowly watching them slip through your fingers. They’re slowly disappearing before your eyes. Sometimes the fear of waking up tomorrow and then not being the same is almost worse than them not being there. And like you’ve mentioned, the grief was very different. You know, you had 14 years to prepare that one day he was no longer going to be here, but when he actually wasn’t here, it was knock you to your knees kind of grief you’ve talked about before the brain fog, the despair, the crying, the, just the gut-wrenching feeling you feel. I know that with your mom, that journey was different. So, could you, maybe talk a little bit about how that grief was a little bit different for you? I mean, they both had a longer process of disease, where they slowly disappeared, but your mom’s disease was different overall then compared to your dad’s. So, did your grief feel differently in those situations?

Rayna Neises: I  have looked at that a lot, because of the fact that grief with losing my dad was so surprising to me, to be honest with you, that it was debilitating as it was. and for the length of time that it was. And I don’t remember that with my mom, but I was very young with my mom and my mom’s diagnosis to death was 12 years. So, it was a long period of time. But within three, when I look back, I think within three years, my mom was almost nonverbal. So I was 19 years old when I stopped having conversations with my mom and for my dad, I can remember three years before his death, him seeing me upset about something and touching me on the knee and saying, babe, are you okay? Now, I don’t know that he remembered my name or that he talked to me at that point, but he could feel my emotion and he had that empathy and he had that ability to reach out and communicate in that way. So, my dad was still there and those little glimmers with my mom because she couldn’t talk. She wasn’t, there was, a lot more hallucinations with my mom she was very happy in her nine-year period like that. She sang songs. She talked to things that weren’t there. She just was really easy going, but she wasn’t my mom. We didn’t have those conversations and the way that she died was also really different than my dad’s. it was a longer process of knowing that we were losing her. So, once she was finally gone, it was almost more of a relief that she was gone because it was a pretty torturous end for her. For us to watch, I guess would be a good way to put that. So, I also was in a different place in my life and I just, I do remember missing my mom, but there wasn’t that relationship with her to miss. So, the grief of my mom is frequently those big events in life that we don’t get to share. So, it’s remembering, on my wedding day. Wishing that I had my mom there and it’s a grief of she’s not getting to share this with me. I don’t get to have these conversations with her. When life is challenging and you want your mom’s advice, I just never had that opportunity. outside of my teenage years, she wasn’t available for that. So that grief is a whole different kind of grief and it definitely impacted me in a different way.

And those of you that are listening, that are dealing with watching your parents disappear slowly before your eyes. That might be something that you can really relate to, of how those griefs are small grief or that there is actually a time in which you know, that you just aren’t able to have that same relationship you had before.

Aly Neises:  Like we’ve mentioned before, grief is a very normal process. It’s what we have to do to move forward and to continue to live our lives. Unfortunately, it’s not a very fun process, but that being said, it’s something we do have to do. So all your feelings that you’re feeling, all of the emotions, all of the everyday things are normal, your normal and that’s okay. But you also have some right that you need to understand that are part of grief so that you can understand the difference, whether your grief is normal. Like, is it just too much that’s bogging you down and you have to figure out some way to kind of come out of that?  Our biggest concern to you, caregivers is that the daily things are a lot. And then here, we’re talking about grief and it’s just one more thing that you have to deal with. So being able to identify what rights you have with your grief. So whether you can kind of identify whether your grief is healthy or not. I know Rayna has some great tips on some of those rights of grief, would you like to share some of that?

Rayna Neises: So, I found this is really interesting. I never thought of it before and had never heard of it before. It’s the Mourner’s Code. And it’s in Understanding Your Grief by Dr. Allen Wolfelt.  Thinking about the 10 self-compassionate principles morning. So, number one, you have the right to experience your own unique grief.

Number two, you have the right to talk about your grief. Talking about grief is healing. It really does help. I don’t know why, but it does. And so many times we feel like we can’t talk about it. Cause we’re either ashamed that we’re feeling as sad as we are or that the other person is uncomfortable with us being sad.

Number three, you have the right to feel a multitude of emotions. Confusion disorientation fear, guilt relief. There’s so many emotions.

Number four, you have the right to be tolerant of your physical and emotional limits. I think that was one of the things that surprised me and my grief with my dad was how physically exhausted I was that feeling of loss and that sadness, it really does leave you feeling fatigued and you have a right to that.

Number five, you have the right to experience grief bursts, you know, sometimes out of nowhere, that wave just overcomes you and that’s okay.

Number six, you have the right to make use of ritual. You know rituals are healing and that’s one of the things in this season of. Social distancing that just really saddens my heart is how we’re not able to have the same rituals in our grief that we always have before.

Number seven, you have the right to embrace your spirituality. Faith is a part of many people’s lives and the way that you express it, the way that you seek it, you have a right to that.

Number eight, you have the right to search for meaning. Asking the questions, you need to ask, finding the places that you need to find the answers. You have a right to do those things.

Number nine, you have the right to treasure your memories. Yeah. Memories are definitely one of the best legacies that we have. Just because our loved one isn’t here anymore.  it is not helpful to ignore those memories. It is helpful to cherish them and reminisce about them.

And number 10, you have the right to move toward your grief and heal. The process of moving towards it allows you to process it as we’ve been talking about throughout this podcast. I think being patient with yourself and tolerating your grief and realized that this is your process, is also an important piece of that. you have to move towards it and heal, and you’re only going to do that when you give yourself the grace that you need to do that.

Aly Neises: I agree. I think you need to extend that grace to yourself, and also extend that grace to others around you. Because sometimes when we’re going through this, we can kind of be short and frustrated, things like that. Grief is a difficult thing for everyone and just kind of understanding that no one knows what the right thing to say and that’s okay. Just extend that grace to others as well.

Rayna Neises: [Well listeners. I hope that you found digging a little deeper into all of these emotions of caregiving helpful today. We’ve enjoyed having you with us. We look forward to you joining us again next week. Just a reminder the Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, and legal questions, please consult your local professionals, and take heart in your season of caring.

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Meet Your Hosts

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises & Aly Neises

Aly Neises, RN

Your Co-Host

A registered  nurse, has worked in healthcare for over ten years. Currently she is a case manager for hospice taking care of terminally ill patients and their families.

Her passion is to help and care for others.

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