Coping with Secondary Loss & Caregiver Grief – Transcribed

 

[00:00:00] Pete Waggoner: Welcome to the Good Grief Podcast presented by O’Connell Family Funeral Homes. You can check them out online at oconnellfuneralhomes.com. Make sure that’s plural in there because otherwise you’re gonna have to research. So it’s oconnellfuneralhomes.com. We have a great guest here. Kathleen Helgeson joins us. Amber Miller from O’Connell Funeral Homes is here with me as well. And Kathy has been on our podcast before.

 

[00:00:29] She’s graced us with her presence and we’ve loved every minute of it. And we’ve got a great topic coming up today. It’s titled Secondary Losses and Caregiver Grief. What we’re going to do is talk about secondary loss and caregiver grief.

 

[00:00:45] And I think a lot of us as we’ve aged through society, have put ourselves in the caregiver role and you know, for the two of you before we get into the discussion, that was something that was really in the olden days, kind of, I always relate to the [00:01:00] Willy Wonka Chocolate Factory where the grandma and grandpas lived in the basement.

 

[00:01:03] Now that was just kind of a rite of passage, how things went. And then we’ve kind of come into this world for a while where we push people off into, you know, long-term care and those types of things. And I think as a society, there’s become more caregiving from family members. And I think that’s a very rewarding opportunity.

 

[00:01:24] But along with that comes a completely changing relationship with a loved one, which brings out a whole different form of grief and different layers to it. So Kathy and Amber will join us. We’re going to hammer that out. Right after this break, we’ll come back with more right after this. 

 

[00:01:42] Amber Miller: Hi, this is Amber Miller here from the O’Connell Funeral Homes.

 

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[00:02:24] Pete Waggoner: And welcome back to the good grief podcast, Kathy. Hello and how are you? 

 

[00:02:28] Kathleen Helgeson: Well, I’m just great. Thank you for asking. And so great to be here and it’s always such a privilege to be with you and to be on the podcast. I can’t believe you keep inviting me back.

 

[00:02:39] Pete Waggoner: Well, it’s so hard. I mean like how do we do this? I mean, you are one of Michael O’Connell’s favorite people and for obvious reasons and one of mine too, it’s been absolutely amazing. I mean, this is a woman who met my daughter once a year ago and bang remembered her name. How special is that Amber? 

 

[00:02:55] Amber Miller: Kathy is amazing.

 

[00:02:56] Pete Waggoner: That’s really sweet. That’s great. So, you know, [00:03:00] grief doesn’t just exist because of a single loss to like one individual, or our loved ones. We experienced a plethora of other smaller losses as a result of the primary loss. So we’re going to get into the secondary here today, and we will start with that. And Amber we’ll just turn it from the definition of secondary loss.

 

[00:03:20] What exactly is that?

 

[00:03:22] Amber Miller: Yeah. So a secondary loss are those smaller subsequent losses that happen as a result of the death. So, it impacts all areas of our life, this loss. So think about things like, you know, financial, secondary losses or companionship and roles, and we’ll kind of go over each of them, but really this death encompasses a lot of aspects of our life, um, that we experience as a result.

 

[00:03:44] Pete Waggoner: Kathy. They come in so many different shapes and sizes and in your world, are there any things that you’ve observed? To say, well, this is a pretty consistent type of secondary loss or there’s so many different shapes and sizes. 

 

[00:03:59] Kathleen Helgeson: Hmm. [00:04:00] That’s a great question. I think that there are some typical or expected or what we would consider pretty normal or normally experienced secondary losses.

 

[00:04:12] And yet there is no one size fits all or one answer covers it all. Grief and secondary grief is so individual to the families that are experiencing it to the personalities, to the depth of the loss or impending loss. All of these things kind of shape what it’s going to be like for each family, each individual personally.

 

[00:04:39] And so we need to, to go into any situation of support, not telling any family or an individual what they need. We need to listen so that they can tell us what they need and, and then we can respond how we can help you.

 

[00:04:53] Pete Waggoner: Amber give me some examples of secondary loss. And it was just when you mentioned loss of financial security or [00:05:00] income, but you’ve got a list of examples that are some we can put into the bucket.

 

[00:05:05] Amber Miller: Absolutely. So, starting at financial security and income. This is common for maybe someone who’s lost their spouse that maybe was the breadwinner of the family. That impacts you financially, your financial security of being able to pay the bills, or maybe they were the ones that were in the hospital prior to death.

 

[00:05:23] And now you’re kind of thinking about how you’re going to pay those medical bills. So I think loss of financial security, or income’s a big one, especially for, you know, spouses or caregivers, frankly too. 

 

[00:05:35] Pete Waggoner: And then along with that, you have loss of the companionship. And so sometimes companionship can, you know, relationships can tend to take on the form of a business to a degree because you have bills incoming and outgoing and those types of things. But you lose companionship too.

 

[00:05:52] Kathleen Helgeson: And that is deeply felt on heart levels of who we were as a couple. [00:06:00] And who we are as a family has changed drastically in those secondary losses, whether we’re talking about someone in the dying process or heading toward death or the family in grief after the loss of a loved one and finding your way, how do I breathe in a world where my loved one doesn’t live anymore?

 

[00:06:24] And some of the losses are our monumentous in the lives of those who are saying goodbye, others might not notice. Like the first time a woman who has lost her husband has to check that little box on a form saying “widow.”

 

[00:06:41] Pete Waggoner: You hear that a lot. 

 

[00:06:43] Kathleen Helgeson: You do hear that the first time or the..

 

[00:06:46] Pete Waggoner: Or a tax when you’re doing your taxes, all those types of things. Totally different.

 

[00:06:52] Kathleen Helgeson: Totally different. So. Yeah, there are in every way that are, our lives are joined to another’s. [00:07:00] When they are no longer their presence, no longer here beside us, although very much inside, we have to figure out what does it mean and how do I navigate this and that it doesn’t come without thought or without impact emotionally.

 

[00:07:14] Pete Waggoner: So along with some of those things, checking the box, I brought up the tax form and whatnot. We also have roles in relationships and companionship and in losing a loved one, but your role can totally change. And now you’re taking on that have two, and there’s an area that, you know, you’ve just leaned on each other for, but that is a huge thing too.

 

[00:07:37] I’m sure. 

 

[00:07:38] Amber Miller: Oh, absolutely. I think for maybe parents who lose a child, that’s huge. Huge piece. You know, the kind of the question that people ask, how many children do you have? I think parents who have lost a child, that’s a really hard question. Do I acknowledge the deceased’s child? Do I not? How does that look? How does that feel?

 

[00:07:57] I think a lot of consciously subconsciously [00:08:00] parents do a lot of things that revolve around their kids daily. Do I still continue to do those things, right? Right? Or how we see the roles of others. So, you know, my son was killed in a car accident, per se.

 

[00:08:12] Do I still call his fiance, his fiance, or am I still allowed to be close with them? Are they still my in-laws even though my husband’s deceased. How does that look? You know, or role reversal? Kind of tangibly, you know, my husband passed away. He was the primary cook, and now I’m having to kind of learn how to do the cooking and the cleaning and the laundry, or maybe balancing the checkbook.

 

[00:08:35] So taking on roles that I wouldn’t necessarily have had prior to my loss.

 

[00:08:40] Pete Waggoner: Child becomes a parent to their siblings too. So another part of it, when you look at roles and how we carry those in life, do you think Kathy, that a lot of what we do is defined by role. Or, you know, so do we define the role or does the role define us?

 

[00:08:59] Kathleen Helgeson: That’s a great [00:09:00] question again. Our roles in our identity really get meshed or enmeshed. And so, you know, in my home, I don’t take out the garbage. And so just something as little as my husband’s on a fishing trip for a week, I’m like, who’s here to take out the garbage, so that’s not my role.

 

[00:09:18] And you think about the exponential influence or, or experience of, and he’s never going to. That’s, that’s off the charts. And the things like I hear in grief support often about women who don’t know how to care for the car. When do you take it in? When? For what? And something so simple in a relationship that was partnering all of a sudden.

 

[00:09:45] There’s a need for awareness, even, of what needs to be done and how to do it. 

 

[00:09:51] Pete Waggoner: I think it’s important in a support role when that does occur, especially if it’s your parents, as they get older as the kids, if [00:10:00] one did this and while the, he always did that, or she always did that. It’s easy to just say, well, yeah, I will just do it, but I think it comes back to earlier when you said checking the box, right.

 

[00:10:13] And there’s a sense of security and what’s delivered in that part of the relationship, whomever it is parent to child, spouse, whatever it would be. And I think it’s easy to look at that as a person and say, well, why can’t you just do that? But there’s way more to it than just that. 

 

[00:10:29] Kathleen Helgeson: Well, and. We was the me, I am the we..

 

[00:10:35] And so, when it’s no longer the we is me then who is me? And what do I do? And how do I live this out? And what does it mean for me? 

 

[00:10:45] Pete Waggoner: How important either one of you can take this is our own individual identity. 

 

[00:10:52] Amber Miller: I think it’s very important. And for some that, especially, you know, I go back to maybe the spousal relationship, just kind of what Kathy said is that of [00:11:00] our identity becomes meshed with that other person where sometimes the lines are blurred between what my interests and likes. 

 

[00:11:09] Pete Waggoner: Is that okay?

 

[00:11:10] Amber Miller: I think so. Absolutely. That’s a natural part of, of loving somebody.

 

[00:11:14] Pete Waggoner: Well, because we like to label things and then it becomes codependency in some people’s worlds.

 

[00:11:18] I’m not saying it is, but you know what I mean? How things get so labeled, right? 

 

[00:11:21] Kathleen Helgeson: No, a relationship doesn’t have to be codependent to be very close. Yeah, and really healthy relationships lean on each other’s strengths and allow for one another’s weaknesses without thought. After time, it’s just how we are together.

 

[00:11:37] And that’s what it means to be in a healthy relationship. And so when that changes, everything changes and in a lot of cases, not only is there a need for external change of identity that goes with it, but also internally, what does it mean about me? Who am I? Am I like, I don’t know how to do these things. I don’t know if I can learn.

 

[00:11:59] Does that mean I’m dumb? Does that mean I’m incapable? Does that mean I don’t have capacity to grow or learn? And so it has to work some of those things out and it’s not done in a day, it’s over time. And, so we’ll be talking too about support systems and what that looks like, but that’s when we really need to identify who our support people are and how they can walk alongside us in these things. Yeah. 

 

[00:12:26] Pete Waggoner: When we do get to that support system to deal with that, the person who died could be of many different, I guess we’d say, roles to whomever’s in the support system. So how has that all navigated and does the support system reach out? Do you reach out to the support system? How do you intertwine all of that?

 

[00:12:49] Amber Miller: Well, I think kind of as a secondary loss, the loss of a support system is huge. So, you often hear of, you know, the caregiver closeness between child and [00:13:00] parent and how that relationship really grows. And maybe that person was your main confidant to things that you went to them for all of your. Good and bad and everything in between life.

 

[00:13:11] And now they’re not here. How does that, how does that look? Especially for, you know, maybe a child who loses a parent and having to become a different role, a different support system to siblings or to the surviving parent. Or what be, so I think that’s, that’s hard in of itself is having to establish, especially if the deceased was that support for you having to establish that new role in somebody else.

 

[00:13:35] Pete Waggoner: How do you identify who that somebody else would be if you need to really rebuild a new support system that you’re grieving that you lost without displacing that and being disrespectful?

 

[00:13:50] Kathleen Helgeson: Hopefully you would have people from your life over time that will, can stay with you in this change.

 

[00:13:57] And as you grieve and [00:14:00] mourn, and yet it is said from research that roughly about a third of the people in your life or that you will encounter will be really helpful and be able to stick with you. About a third will be neutral – not helpful or detracting from your experience. 

 

[00:14:17] And then about a third will be either disappeared from your life, or they’re not good. “Oh are you still crying over that?” You know, or you haven’t at what, you know, it’s “I got somebody I want you to date”, you know, “I want to introduce.” That kind of person you go, not a good person for my support system right now.

 

[00:14:36] And so identifying that and even with a forgiving attitude to go. I guess this person doesn’t get it. You know, I would’ve thought they would come alongside me here, but no. And so identifying who it is that can walk with you on this rough road in this valley that is so difficult. And then, you know, maybe even restructuring what relationship with them looks [00:15:00] like now. 

 

[00:15:00] Who’s the one you can call in the middle of the night when you’re crying? Who is the one that you can lean on to help mow the lawn or take care of some other issue?

 

[00:15:11] Pete Waggoner: Well, along with all of this as people there are dreams and I think it’s a fine line between a dream being a fantasy in life. But I think it’s really important that we do have dreams to reach for.

 

[00:15:24] Correct? But those can come crashing down because they’re now gone. Right. So how do we deal with the dreams? 

 

[00:15:34] Amber Miller: Yeah, I mean, I think the loss of dreams is a, is a really, really large component to kind of the idea that grief is a lifelong process and that we have these dreams that are more tangible, like dreams of what I’m going to do next week to dreams that are years and years down the road. And how does that look, like I have envisioned to retire and spend my years with my [00:16:00] grandchildren?

 

[00:16:00] How does that look, if I have a grandchild who has died? Does that dream – Is it still there? Is it something that can still manifest or is it something that I need to remove from my life?

 

[00:16:11] I have a dream that I’m going to travel next year. Well, what if that happens when my significant other dies and that’s, you know, where we intended to go, all of those things are huge components and secondary losses for people. 

 

[00:16:22] Kathleen Helgeson: You can think too about a child who loses a parent, maybe at a young age or in adolescence.

 

[00:16:29] And, and they grieve in that season and begin to move forward, learn how to build their lives and who lean on a different support system or a system that looks different. And think, okay, you know, this happened, it’s awful, but I’m, I’m rebuilding my life. I’m going to be okay. I’ve identified who’s still going to be here for me and who will always take care of me.

 

[00:16:53] Those sorts of things help us to move forward and then maybe graduate from high school, any [00:17:00] shocked stunned. Where’s my Mom? What? You know, my dad’s not here for this and there’s a full, fresh grief. And then marriage, having children, all of these things, subsequent to the loss as a child that all throughout life, it will be revisited in sometimes hard, you know, that it hits hard and not to be so surprised or stunned by that, that we can’t move forward or that we think there’s something wrong with us.

 

[00:17:30] You know that neither, neither are true. 

 

[00:17:33] Pete Waggoner: It can be really empty feeling. 

 

[00:17:36] Kathleen Helgeson: It sure can. And we really need somebody, at least one person in our life that would say, this must be really hard that your mom isn’t here or your dad isn’t here. And I’m sure it feels empty or, the better yet is what is it like for you?

 

[00:17:52] What is it like for you? I’ll bet. You know, but we were reluctant to do that. We think, well, it’s a happy day. It’s the wedding. We don’t want to make her cry. [00:18:00] And all the times she’s crying inside. My mom’s not here or my dad’s not here. And so to give people permission to mourn and to say this, this is a beautiful day, but this part really hurts.

 

[00:18:11] And there are wonderful ways of bringing, you know, linking objects, seeing things that, something that was my mom’s that reminds me all of that her love is still with me. You know, my dad’s blessing, his dreams over me didn’t die with him. I carry them. I am carrying them, you know, sorts of things like that.

 

[00:18:33] Yeah, but it has to be communicated in some ways and sometimes drawn out of others that are, are feeling those secondary losses. Those sadnesses long down the road.

 

[00:18:43] Pete Waggoner: So an interesting secondary loss and that’s, it’s the last one on the list. And I find it, Amber. I don’t know if you put it there on purpose, but it’s very well done.

 

[00:18:53] It’s intriguing to me because it’s the loss of faith and that can be where people [00:19:00] are questioning. Why would God do this? And that is, I’m sure you and your position, both of you hear this a lot. 

 

[00:19:11] Amber Miller: Absolutely. Yep. It’s a common one. A lot of questioning, “Why would God allow my loved one to suffer through a particular diagnosis” or “Was I not praying enough to save my loved one?”

 

[00:19:26] Pete Waggoner: Can I ask you a question? So if someone asks that my initial head goes to, well, you do believe in God, obviously, cause you’re questioning. So that means you believe in Jesus and his only son was, was crucified and died on the cross. If that can happen, I think this could happen.

 

[00:19:50] That’s where my mind goes, but I don’t know what percentage of people’s minds go there. Like zero?[00:20:00] 

 

[00:20:00] Kathleen Helgeson: Even I would say, it does seem like, for a lot of people, loss and associate hard loss is either a step back to say, I got some things to think about here and, and God’s presence in this place in me or in this situation or for my loved one or a step forward. Man, I don’t, I cannot deal with this by myself.

 

[00:20:22] I got, you know, I’m pretty good, but this is too much for me. I’ve got to have God. And his health and his presence with me, his comfort, his peace. Cause I don’t have any of my own. And I wonder sometimes for those that are taking the step back and questioning and hurt out of hurt, knowing that we don’t have to necessarily see it as a crisis of faith, but maybe that we can look at it, reframing.

 

[00:20:49] That processing to a place we’re maybe temporarily or, you know, even for a long time, kind of stuck by and [00:21:00] stunned by hard things that happened. And we can understand that God’s shoulders are big enough to carry our pain. And you said he carried the cross. He’s big enough to carry our pain.

 

[00:21:14] His heart is big enough to understand. Are our hurt and our questions and even our doubts and that it doesn’t mean we’re in a crisis of faith or in a loss of faith. It’s in a we’re grieving and we’re mourning. And we, you know, and we’re in that place and we’re not required to show up Johnny at a spot, you know, and defend God. No, he will care for us.

 

[00:21:38] Pete Waggoner: So if you are open-minded enough and can hear, you could actually end up going from questioning, “Why, why, why?” to strengthening your relationship? 

 

[00:21:48] Kathleen Helgeson: That is true. And it doesn’t always happen overnight. It really doesn’t. And so to give ourselves and give others room to question the way that they need to feel the pain that they [00:22:00] feel and not discounted or shame it, you know, but to trust with them that

 

[00:22:06] God’s love for us is big enough to handle the, that hard place. And it’s not the end of the story about our faith in God. It doesn’t have to be. 

 

[00:22:15] Pete Waggoner: Well stated. At this point ties nicely into our next topic today, which is a sense of self and purpose. This is actually applicable to caregivers. I was a caregiver, so I know this topic very well.

 

[00:22:30] And so I was excited to see this and we had a nice chat before we went onto the podcast here. Now that the parent is past everything that your day, week, weekends, holidays, everything you did revolve around that care because you were thinking and doing for those people. And if you’ve had babies, it’s very similar to that.

 

[00:22:51] But it’s perpetual, if you have a memory care type of patient, it goes from good to worse, to worse, to brutal, to [00:23:00] a level where you can’t execute anymore. You feel bad about that. And I think it’s all kind of plays into this one world. So you could have lost a young child that you cared for as well, that maybe was born with some issues or whatever it may be.

 

[00:23:17] So it doesn’t have to be a parent. It could be anybody within the lifecycle. So there’s a lot of secondary losses that people experience after death that, that we talked about. So we talk about caregivers. How does the grief impact our caregivers today? And there are obviously a lot of people that are in that position.

 

[00:23:39] Amber Miller: Oh, absolutely. Yep. They’re kind of like our unsung heroes. They are a huge portion of the population that care for other families, but they have their own kind of secondary losses that, that they deal with on top of the ones that we just discussed. So, kind of think about maybe the loss of independence or freedom that caregivers experience.

 

[00:23:57] So, you know, schedules and priorities [00:24:00] have to shift and change for the person that we’re caring for. And that involves, you know, impact, sleep and eating and all of that. Right? And so when the caregiving is kind of removed from the equation, if the person passes away, that’s a huge loss to that person because our sense of self and identity as a caregiver, you know, days, weeks,

 

[00:24:21] weekends, holidays has now changed. So I think that’s really big for caregivers. 

 

[00:24:26] Pete Waggoner: That’s a big toll, obviously that they take on and it’s something that I’m sure they have to deal with in their own form of grief as well. 

 

[00:24:35] Kathleen Helgeson: I would agree. Amber said it really well and none of no loss at all is for the faint of heart.

 

[00:24:42] You know, it takes courage to face our losses and our changes. And again, a reason why it’s important for us to identify who in our lives can hear us, understand, will stand with us even when they can’t fix what is broken or hurting in our [00:25:00] lives. 

 

[00:25:00] Pete Waggoner: Well, there’s the loss of independence and freedom, which you, you alluded to a moment ago.

 

[00:25:04] You also have a loss of control, you know, you can kind of work your way through these, but there’s a lot of things or, or your future can be changed because what you thought it was going to be, where you’re dreaming of doing while that’s now become kind of I don’t want to say crisis management, but you’re, you’re in the trenches now.

 

[00:25:21] And so those things change as well. And then there’s a huge financial burden that plays into all that too. 

 

[00:25:27] Amber Miller: Absolutely. Yep. You know, especially family caregivers there, you know, fronting a lot of the financial responsibility of caring. If your loved one is either at home or if they’re maybe at a facility that’s a big stressor, but the loss of control of not being able to kind of fix their wounds or tend to tend to their needs as a caregiver. A loss of a relationship as it was, which we mentioned a little bit initially is especially for a child caring for a parent, that’s kind of a little bit of a role reversal of.

 

[00:25:59] [00:26:00] Historically have your parent, you know, your parent caring for you. And then maybe a loss of family harmony, kind of issues arising. We hear that all the time and see it all the time when we’re, you know, kind of talking about the next part of making funeral arrangements is, you know, maybe some apprehension or some anger at, “I was the one that was caring for mom and my siblings was kind of off MIA and I was left and it was all on my shoulders” or “my friends don’t understand why I’m having to cancel all these plans because now I’m caring for someone that I love.” So a lot of different things go along with it. 

 

[00:26:37] Pete Waggoner: What’s interesting is, through my experience, I can say it was. The loss of the relationship as it once was, but it did get replaced with a more simple one, which had its own beauty.

 

[00:26:50] And if you took it one step at a time and didn’t look back over and say, “Boy, I wish sure wish it was this.” Well, it’s not, [00:27:00] this is what it is now. And it’s not about what I want. It’s about what we have and that’s how I think you make the best of it. But then the other component of all of these losses in the caregiver grief that I experienced that were most pronounced would have been the family harmony, not in the regard of

 

[00:27:18] Siblings disappearing or anything like that. But a holiday has changed, family time changed, and how things executed were different. And that was definitely a legit, not just blip on the radar screen, but things that needed to be dealt with. And I think a lot of what we’re speaking about on these two topics are big time emotional, deep, how things are, versus how they were. 

 

[00:27:46] Kathleen Helgeson: Yeah. Instinctively, no matter how old we are, we’re going to be asking ourselves what stays the same. When things change and when big things change and it might take us a while to [00:28:00] figure that out, what stays the same in it likely in family relationships will require some give and take.

 

[00:28:07] It will take some conversations, some compromise maybe, but what stays the same when something big or everything like the loss of a loved one changes. And also there’s this instinctive need that isn’t immature, it’s more primal. And so how we walk it out will be shaped by maturity and stage of development.

 

[00:28:31] But who’s going to take care of me is, is primal. And it’s very real. Who is going to, who can I lean on? Who will be there for me? 

 

[00:28:42] Pete Waggoner: That’s real because you know, you hit middle-aged right. And you start looking around, you go, what’s going to happen here? And that is real. 

 

[00:28:53] Kathleen Helgeson: Yes, it is real.

 

[00:28:54] And so whether we’re, you know, the person being cared for is going to be feeling that and [00:29:00] going to be dealing with a lot of losses, like loss of independence, loss of ability, all of those things. So we’ve got that going on, secondarily to the disease or the decline. But then for the caregiver

 

[00:29:14] there’s going to be such a lot of thinking through what does this mean and what am I losing and feeling, maybe some of those losses ahead of being able to process it, like loss of freedom. If for one who’s a caregiver, and you’re doing all the, I’m taking mom to the appointments, well, when do I get to go get my teeth cleaned?

 

[00:29:35] You know, when do I get. Go to the grocery store for pete’s sake. When do I get to spend a little time with my friends and, you know, like those things we might not be proud of, or we might think, you know, well, some of them are very normal self care, but still there’s that sense of loss of independence for a caregiver that almost can lead to feeling trapped.

 

[00:29:56] And that leads again to disharmony in families. 

 

[00:29:59] Pete Waggoner: [00:30:00] Where’s that balance found then between being true to oneself and not being trapped?

 

[00:30:07] Kathleen Helgeson: I would say it dwells within, you have to know yourself what you can do and what you can’t. 

 

[00:30:14] Pete Waggoner: Ask for help. 

 

[00:30:16] Kathleen Helgeson: You do need to. Hmm. 

 

[00:30:18] Pete Waggoner: I think that’s, to me that’s the biggest thing.

 

[00:30:20] And then that’s where the vanishing sibling become a problem. 

 

[00:30:24] Kathleen Helgeson: Right. Because there’s a difference between noble and martyr. And for sure victim. But really, if you think about it, what is inside of me? What do I want to give? But if it starts to feel like what’s being taken from me, then we look at, am I being a martyr or a victim here?

 

[00:30:44] And like you said, ask for help. Really, I think, I think that’s a very healthy question who can help me? Who is able to help me? 

 

[00:30:53] Pete Waggoner: Absolutely. We hear the term anticipatory grief often as it relates to caregivers. [00:31:00] What is that? 

 

[00:31:02] Amber Miller: So I would say it’s kind of the distress a person feels prior to the death happening.

 

[00:31:06] So in the days, the months, or even years before the death occurs and was kind of slowly occurring. So this is huge for caregivers that see kind of a progressive decline in the loved ones or the people that they’re caring for. So they’re grieving long before the death actually occurs. 

 

[00:31:20] Pete Waggoner: Then obviously feelings, your emotions, are going to accompany this process.

 

[00:31:25] What are some of those feelings and emotions? 

 

[00:31:28] Amber Miller: I think the first one is, and one that’s hard for caregivers to come to terms with, is this fact of relief. You know, caregiving is hard work. It’s not just a Monday through Friday job. It’s a 24 hours a day. So maybe feeling relief that someone else has started to help them.

 

[00:31:46] Maybe they’ve transitioned from caring through the home, through now a care center. So that’s a little bit of a relief, or maybe they’ve started hospice or respite care. Relief that maybe they passed away. They’re no longer [00:32:00] suffering or having to see them suffer in pain. You know, kind of all of those reliefs, which is really hard.

 

[00:32:05] And it kind of ties into feeling guilty as well for feeling that relief. 

 

[00:32:09] Pete Waggoner: Amen to that. So that’s right on your thoughts, kathy. 

 

[00:32:13] Kathleen Helgeson: Again, I would, I think that Amber covered that really well. And one thing, I wonder if we forget in this role of caregiver and the compassion that inspires it, that we would have compassion for ourselves as well that the caregiver could care about themselves in the way that I don’t have to do it all. I don’t have to do it perfectly and I’m not going to. 

 

[00:32:38] Pete Waggoner: It’s okay. But don’t be the martyr. Or the victim.

 

[00:32:41] Fine line. Absolutely. Okay. Some final tips that we could give to caregivers. 

 

[00:32:46] Amber Miller: I would say, a big tip is to have patience and Kathy just kind of mentioned is having patience, for yourself to know that you can’t do it all.

 

[00:32:54] And you know, when to ask for help and know that roles are changing and independence or [00:33:00] autonomy is changing, that can be hard. And the little losses that happen every time, whether that’s, you know, having to take the keys away or not being able to walk. And now all of a sudden having to be primary like feeder and bather and all of that, like little losses happen throughout the process.

 

[00:33:18] So be patient with maybe anger, frustration that you experience as a caregiver or be patient with the person you’re caring for. They’re not lashing out or doing anything that’s personal to you. It’s not about your care or your love, what you’re providing. Seeking respite. Yeah. That’s important. That’s self care.

 

[00:33:36] So even if it’s just an hour a day, find the time for yourself. If that’s, you know, hooking up with a local organization where someone can come by and spend just an hour or two a day for that companionship of your loved one so that you can get out and tend to that dentist appointment or that doctor’s appointment so that you can actually care for yourself, or just go on and get a cup of coffee or something like [00:34:00] that.

 

[00:34:00] I think respite is very, very important. We can’t give if our gas tank is empty. 

 

[00:34:05] Pete Waggoner: Fill it up and then finally remind yourself that you’re doing great.

 

[00:34:10] Kathleen Helgeson: I think so, too. And for those who have a faith in God, it’s so important to be feeding your soul in this journey when so much you’re pouring out so much.

 

[00:34:22] So whether that’s spiritually or another way, the self care. I just want to point out spiritually to be whatever feeds your soul, including hymns or Christian music that you play, a time for devotional or Bible reading, certainly prayer time that that’s beyond ourselves, that’s beyond, I’m going to take a nap, which we need, but it, it is calling on and leaning into the care that God provides for us in these hard places and the peace that he will give and the strength that he will [00:35:00] give and the compassion that he has for us as well. 

 

[00:35:03] Pete Waggoner: Opening up the heart, right. Allowing it to flow. So finally I’m sure here at O’Connell Family Funeral Homes, a funeral home, such as, this is a great resource from which people can fall onto. 

 

[00:35:18] Amber Miller: Absolutely! Our website, our resources tab has a lot of resources of local organizations that can be helpful to you and your family, whether that’s hospice or outside or in-home caregivers, companionship services.

 

[00:35:31] But also don’t hesitate to give us a call at any point, and we can be just a helpful ear to you and point you in the directions that you may need for additional system. 

 

[00:35:38] Kathleen Helgeson: And I would totally agree with that, that if we keep leaning. Leaning on the support that is provided for us and, and have compassion with ourselves as well as our loved one.

 

[00:35:50] There is beauty in being able to, in that way, kiss our loved one goodbye and, and bless them in this journey, [00:36:00] you know, and however much we’ll miss them, however sad we are in their leaving or the circumstances of their leaving. There is a blessing there that goes with them and it remains with us.

 

[00:36:13] Pete Waggoner: Great stuff. Absolutely. Both of you blessings. Wonderful program. Lots of depth here. And I certainly hope those that listen to this, have an open-minded heart to what we’re talking about and that there’s some keys that are unlocked for people that are going through a secondary and caregiver, secondary losses and caregiver grief.

 

[00:36:33] Which are all a part of the process, which we were aware of. Kathy Helgeson, thank you. Amber Miller, thank you. That’s going to do it for this edition of Good Grief. I’m Pete Waggoner so long everybody.