Caregiving Series Episode 2: A Caregiver's Grief

Join Allan and Anne as they explore a tough topic that everyone struggles with: grief. Anne shares her personal stories about her journey as a caregiver, and how we can help each other remain strong and feel supported in the midst of sadness.

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Transcript

Opening And Disclaimers

SPEAKER_00 0:00

The views or opinions expressed in this podcast are for informational purposes only, not intended as legal or professional advice, and may not represent those of Verity Consulting. Although we make strong efforts to make sure our information is accurate at the time the podcast episode was recorded, Verity Consulting cannot guarantee that all information in this podcast is always correct, complete, or up to date. All information in this podcast is subject to change without notice.

SPEAKER_01 0:58

In this second session, we're gonna have a conversation with Anne. We're gonna flip the table a bit and have her uh talk about her experience as a caregiver. And Anne, you and I have uh developed uh a friendship and also an interest in caregiving podcasts, and that that came out of our experience caring for Mary. Yeah. But as well as I've gotten to know you, I think it'd be useful for me to even for me to understand a bit more about your experience and also what your thinking is about being a caregiver. So uh sure. Let's start with that. Let's have you talk a little bit about your experience as a caregiver and kind of kick off with this conversation.

Ann’s Path To Hospice Care

SPEAKER_02 1:48

Sure. Uh nice to chat with you all again. Ann Blust here. The tables have turned. I'm in the interviewee spot now. What brought me to caregiving, or at least what comes to mind initially, is I was working in Colorado. I was working with kids with autism using ABA or applied behavioral analysis, working one-on-one, um, which was more of an objective science-y way of helping to care for a certain type of community. And then my grandmother, who was here in Wisconsin, fell ill, and I moved back to be with her and navigate her end-of-life care. Um, she was put on hospice about four months after I moved back here to Wisconsin in 2016, and I became one of her primary caregivers, and that really was a, as I like to sometimes say, baptism by fire sort of experience where I jumped in with knowledge for sure, at least rudimentary knowledge of health care and caring for those as they approach the end of their life. However, this was a really immersive experience that was a bit of a jumping off point for where I am today. So, yeah, that was kind of the initial foray, if you will, into the caregiving world.

Lessons From Agency And Home Care

SPEAKER_01 3:32

Okay. And I think since then you worked at a variety of things in caregiving, right?

SPEAKER_02 3:38

Yes.

SPEAKER_01 3:39

Okay.

SPEAKER_02 3:39

Uh so I uh after being with my grandmother, I went into property management for a little bit, which isn't necessarily caregiving, however, did give me a lot of interpersonal experience with a bunch of different types of humans, which was telling. And then I was hired with a nonprofit in-home health agency uh as their human resources manager. So I was a direct part of training on boarding and trying to help support a staff of about 75 in-home caregivers. Um and that became such a big part of my life as far as all aspects, because I needed to know all aspects. Whenever I get involved in a position, profession, I want to know as much as I can about it so that I can hopefully jump in and help wherever is needed. It also gave me a more in-depth look and experience with the older and elderly community and helping to keep people in their homes and comfortable, which was such a big goal for my grandmother as well. Um, so I was with that company in a supervisory capacity, also though within the homes, because I'm not, I not somebody wouldn't show up, or somebody needed some extra assistance. So using my background and my inherent want to help to work with all these different types of people, both the caregivers themselves and the people receiving care. And then I found out that the human resources part of it is maybe not my favorite. While I do love supporting people, being that disciplinarian was not my favorite either. So I kind of stepped back, I went per diem, still helped with some clients, and then through a friend that I went to college with, met you, Alan and Mary. So, and that got me into more of a private sector of working, you know, with you two and getting to know your you and your family in depth. And I've had the privilege of now working with a couple of families and have found a lot of loveliness and light, and feel very honored to be a part of some people's end-of-life experience, and have found a real natural kind of fit using skills and information I've acquired from my different uh areas of training and life experience.

The Fulfillment Of Caregiving

SPEAKER_01 6:46

I should tell people that uh sitting across from Ann, I'm looking at her, and uh when I first met her, when I first met her, I I was taken by her her what I call her million watt smile, the kind of smile my wife had too. And so the the the thing that struck me about her was her ability to relate to Mary. And some of that comes from her background as a person who graduated in performing arts. I did. So that I think that's that's been a big help for you. But I I just want people to note that she has some unique skills, I have to say. Unique a way to put it, yeah. And uh and that that killer smile is the thing that that caught my attention from the very beginning, and her uh be her ability to relate to the person she's caring for. Which which leads me to to want to explore a little bit some things. I guess I'd like to start, Ann, with what do you see as the positives of being a caregiver?

SPEAKER_02 7:50

Sure. It really I I said the word privilege, I've said the word honor. It's a very special thing to be let in and gain hopefully the the trust and build a really beautiful relationship with someone and do treat a person in a time of need the way you would yourself want to be treated in a time of need. If you are able to and have the passion and drive to establish these types of relationships, it's a very we chatted about this in the first episode, Two-Way Street, where there is fulfillment on both sides. It's such a crucial time in somebody's life. We all will need help. We all have, I'm sure, needed help at some point. It can be a really tough thing to accept that help or even accept the fact that you need help. So to learn about different humans and work with them and share stories is a really beautiful experience to me. And um it's just what I would want for myself and my loved ones to be a part of that. So sharing lives, hearing stories, being in a position to provide meaningful work is really, really special. Um it's you know, one of those things where it doesn't, it doesn't feel like a job, you know, it just this is this is nice. It's that doesn't mean it's not hard, and that doesn't mean there are times that aren't devastating. And we're all we're experiencing this together and just trying to navigate it the best we can and make a situation that can be really, really trying a little more palatable, if not even enjoyable. So that's a real, you know, I'll use the word privilege, honor. I'm really grateful to be able to have built and continue to build these connections.

SPEAKER_01 10:07

You know, I know at the time that you were taking care of Mary, you were also taking care of another gentleman about the same time. So what did you learn from from the experience of caring for various people, sometimes at the same time? I mean, those it is taking care of different people with different issues. What do you what do you take away from that? Are there things you've learned from that experience?

Hard Parts And Systemic Challenges

SPEAKER_02 10:35

100%. As mentioned before, my theatrical training, everybody is so different. Everybody's everything is different. Temperament, needs, approaches, ideology, personality, you know, those are all kind of what makes a human very beautiful and very complicated. And I don't say complicated with a negative connotation as much as just there's a lot of layers there. So see, uh, you kind of have to suss out patiently and observe what the best approach is going to be, what's going to make the other person comfortable. My end goal of all goals is that the other person feels comfortable. That's how I approach any relationship with whether it's a new relationship, whether it's a long-standing one, because needs and what makes one comfortable changes as well and can change. I mean, even for myself, it changes within the course of the day. So being attuned to those needs, those different senses that are happening, having a little more grace for myself as well, that we all have feelings that pop up during the day, but not all of them are pleasant. And how do we acknowledge, accept, and just keep keeping moving? Um, every day is going to be different. There's a lot of wonderfulness that comes with that, and there's a lot of haphazardness, for lack of a better word, that comes with that. So in just the different ways you conversate with people and the how what they might like to eat, you know, it really runs the gambit of very basic needs to much more intricate personal personality needs. So figuring out what a person likes, that's all gonna be different, and celebrating that and meeting them where they're at, you know, what's where are we at right now, and how can we make the best of what is happening right now, and so yeah, I I think it helped my improv skills a little bit, as well as having a little more grace for myself and for everybody, in that we're all we're all so different in such a again, beautiful and complicated way.

SPEAKER_01 13:17

So um what do you what do you think about are the most difficult parts of being a caregiver, at least from your standpoint?

SPEAKER_02 13:28

Sure. One of the most difficult for me personally is on acknowledging my own feelings and their worth. You there is a little bit of not a full actor cap that I put on. However, it is a leave my things at the door, and you know, it's about that other person and putting them first. And I'm not saying not to do that as much as still acknowledge your own feelings. Some difficulties, you're going to be working with a slew of friends and family members. I luckily have not had too much difficulty in this arena. However, noting that everybody has their own idea of maybe how things should go, and that it's not, I don't see it necessarily as my place to give advice on that unless asked. You may come across a situation though that the person, you know, might need advice but doesn't know how to ask. So navigating different ideals and different approaches that might go against what you would think. And it's about this other person's choice. This other person, it's their choice. So as long as there's a moral standard being upheld, great. And again, I have not had too much issue personally with this. Overall, in general, an issue with caregiving is just that the need is so great and the funding resources are so low. So that when I was more in an agency type situation, that was a real hard thing to come by, is just that caregivers are not compensated the way that they deserve. And that it navigating some of those guardians, family members, things of that, when you have a lot of cooks in the kitchen trying to figure out what's best for one person who doesn't necessarily have the ability to voice what would be helpful because they don't know, then it gets it gets tricky, in which case I always recommend, or at least for myself, you got to stay true to your boundaries, you gotta stay true to your moral high ground. And if that is compromised, that that is a sign. So and to approach things with as much grace and dignity as you can, because this is this is a guarantee almost that this will either happen to you or somebody you really care about. So let's just all try to be nice to each other, please. That would be great.

SPEAKER_01 16:31

I guess I'm because I'm still I have to be honest, since I'm still in a a period of grief over my wife's passing in the last year.

Caregiver Grief And Identity

SPEAKER_02 16:40

Yeah.

SPEAKER_01 16:41

I I wanted to to see what how you think about the concept of grief as a caregiver. I know I know that you know you lived through Mary's passing and and and also another person's very close to that time. So I can get a box of Kleenex over here if you need it. But uh but I just kind of wanted to get your sense of that.

SPEAKER_02 17:04

Sure. This was a as a performer, this is a foreign arena for me to talk about my personal feelings. Um, grief for everybody is a is an unpredictable beast of a thing. Um I personally think that, at least for myself, I become very, I don't want to say full-blown enmeshed, but almost, you know, I become very involved. I am very I want I go in whole hog, otherwise it's not going to be meaningful to me. And when you approach things with a compassion, passion, a really an emotional investment, um it's there's gonna be big feelings. Um I found that I I mentioned this a little bit before as a a struggle sometimes with caregiving, in that I would downplay my feelings or think that they weren't warranted because I came in in a different position. I had, you know, a different hat as this caregiver. And I, like I know a lot of other people providing care, you become family, you become part of that inner circle. You're involved very personally, and so I have moments of intense grief. I had moments where I said, I don't know if I can do this profession necessarily, because to experience this type of sadness is very uncomfortable. Um, and this is part of being human, is loving and feeling. And if I didn't feel these feelings, I think that would be a different sort of I wouldn't be who I am with these big feels. And everybody's, you know, this will be hammered in, and I think a lot of our episodes, everybody's so different, and there is a commonality in we all have bouts of feelings that we don't understand and that we want to try to push out of ourselves as quickly as possible because they're very uncomfortable, and to so to allow yourself to feel those things and um take care of yourself, and they're they're happening because it's real, and there doesn't even necessarily need to be a reason for it. We try to, you know, deduce or figure out where this is stemming from, and in the end, it is it just is, you know, these feelings just are, they are happening, the reason being that we care and to be as gentle with yourself as you can. That's something I know I I work on every day to be a little nicer. We a lot of us within this field put our feelings on the back burner to try and help others. And while there is a kindness and that is, you know, done with the best intention, just it can burn you out. So to Yeah, say this is this is happening, and grief is it's a part of it. Losses, it's devastating, and it I don't know how it couldn't not have an effect.

What Caregivers Need From Families

SPEAKER_01 21:03

Well, thanks for that. I know that wasn't easy for you to talk about.

SPEAKER_02 21:07

You know, we all get uncomfortable, so that's human.

SPEAKER_01 21:12

That's uh kind of a natural transition to another thing I was interested in hearing your thoughts on, and that is what are the what are your as a caregiver, what are the needs that you have or the expectations that you have, maybe from not just from the person that you're caring for, but maybe from the family around and whatever. What kinds of things do you need? What kind of support? Talk about that a little bit.

Communication As The Core Practice

SPEAKER_02 21:38

Sure. This'll almost always go back to the treat others the way you want to be treated. This type of work is so important. It's very important. So while I don't expect uh A celebration, or anything, you know, every time I come in. I hope that there is reciprocal respect. We, you know, check in with each other. Communication is so key. I really I am one where I don't think there is such a thing as overcommunicating, especially when health needs are involved. So I there will never be a time where I say that's too much information. I want all the information. If anything, maybe I in other people's opinions overcommunicate. Well, let's just get it all out there. Transparency and meeting also myself where I'm at. You know, we're working together. This isn't have the expectations kind of laid out, those will change. So communicate that. As much as people can remain on a similar page, that's important. And that people are, those at least who approach it with the best intentions are doing their best. And it's the whole two-way street mentality that we gotta we gotta work together. I want to treat you and everybody that I meet through you kindly and just you know, the same way, the same way that I would want to be treated. So if both parties approach it like that, it'll it's not to say there won't be rocky points because it's somebody's health, and you can navigate it together because you're a team, you're working together, even if the family member is say not in the same state, you're still going to communicate. You're still the other individual I worked with, you know, he had children kind of all scattered about. And so I didn't see all of them. There was really only one that I chatted with the most. However, everybody got a note about everything that's happening. If a you know, thought or idea came, we could come together electronically or what have you. So communication, commonality, working together, two-way street. We're all we're all doing the best we can. This is two. I think my property management stint helped as far as dealing with important high stress situations. I was dealing, this is different, but dealing with people in their home. So an emergency comes up within somebody's home, it's very stressful. You then put the stress of it's somebody's person, somebody's parent, somebody, you know, it's a human that's experiencing these emotions. That's a that's a really high-stakes situation. So being able to roll with it, we gotta kind of do our best to roll with it together and respect each other. So that's my key piece of advice for really any scenarios communicate, communicate, communicate.

SPEAKER_01 25:24

That uh that's a good summary, and it kind of goes to I I had several thoughts in my mind or questions, you know, what were the needs of the caregivers, and then what were the expectations of the family and the people getting the care. But I think what you've just covered sort of summarizes both sides very well. Oh, the two-way, the two-way street. I mean, I I think that's that's absolutely what it is.

SPEAKER_02 25:52

You have a one-sided situation, you'll get one-sided results where you have one person floundering and the other never happy. You know, you know, it's just it sets you up for a sort of failure.

SPEAKER_01 26:08

Any other thoughts that you have that you want to share with folks about being a caregiver? I mean, you've sort of covered the the things I was thinking about from my experience that I wanted to get your thoughts about. But what else? Anything you want anything else you think you want to share?

Encouragement And Shared Humanity

SPEAKER_02 26:28

Uh I we have doubts or fears, worries, things that uh that hold us back from seeking and attaining information that is maybe not the most pleasant. So knowing the reminder that there are individuals that, lots of individuals that have gone through this that have some, whether it's words of wisdom or support, encouragement. Uh the a lot of, I think a lot of podcasts in general, really a lot of things within media, you know, you're not alone. And that's true. It feels so isolating sometimes on both ends, whether it's the caregiver, whether it's the person receiving care, a loved one. And we can all try to navigate this together with just some gentleness and also realization that these uncomfortable life happenings happen, they happen to everybody. And that isn't meant to sound like a negative, dire, you know, oh my gosh, that's so morbid. It's just objectively true. So if we can talk about it and as people trudging along together, offer whatever we can to each other, and know that it doesn't have to all be so hard. There can be real moments of joy, laughter. I'm proud of myself that I didn't use uh humor as a defense mechanism today. Now I am, there it is. But like, you know, we're all we all have skills that we can bring to this, we all have humanity that we can bring to this, and we all feel helpless sometimes. So you can talk to somebody else, but when they felt helpless, and that normalizes it at least a little bit, it doesn't make it any less icky. It does, though, we're doing our best to help one another, and whatever for whatever that's worth, and I think it's worth a lot.

SPEAKER_01 29:01

I agree. Well, thanks for letting me sit in your chair today as host.

SPEAKER_02 29:06

Well, um you you got it, whatever you want.

SPEAKER_01 29:10

I don't think I'm uh I don't think I'm quite the as skilled as you are, but it was uh no, no, I'll be pleased to turn the chair back to you. Oh, okay. And and before we go, I'm going to turn the chair back to you. Yes, yes, yes.

Closing And Next Series Preview

SPEAKER_02 29:25

Yeah. So this one, this podcast was a little different in the sense that Alan took the reins. I'm gonna be taking them back. Uh and we have some really interesting topics coming up. Next is going to be a little series of what I have dubbed softening the woe, where we talk about some things that are inevitable, things to expect, more information on like everyday living cares, things that signs to look out for, how, when, to enlist some help, how to kind of navigate different things. So a little more informational as well as we'll get some guests on. Next will be though, the the softening, the woe, as mentioned in episode one. If you yourself, as a listener, have any ideas, have any questions, thoughts, want to just say hi, please check out verity team.com, V-E-R-I-T-Y, team.com. That'll also have some more information about consulting, about what Verity does, which is what this podcast is through. I mean improving performance, improving lives. Um, so yes, please check out varityteam.com, send us a note, you know, a funny meme, whatever you want to do. And we very much look forward to more sessions and continuing this discussion of the caregiving world, what it looks like, how we can make it better, and how we can work together to make a sensitive topic not as uh ear, I guess. So thank you, Alan.

SPEAKER_01 31:23

Thanks, Dan.

SPEAKER_02 31:24

All right.