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Navigating the Emotional Journey of Caregiving our Parents and Grandparents
Caregiving for aging parents can be an overwhelming journey filled with emotional, mental, and physical challenges. In this episode, we sit down with Miriam Dakin, the manager of pastoral care at Centra's ambulatory services, who sheds light on the intricacies of supporting caregivers.
Prepare to gain invaluable insights as Miriam shares her experiences as a chaplain, highlighting the essential role of individualized support and validation for caregivers. She underscores the importance of recognizing caregivers' strengths and resources while normalizing the array of emotions and tough decisions they often face.
This conversation equips caregivers with practical advice on navigating end-of-life decisions and reaffirms the significance of their roles. Join us to feel seen, validated, and supported as we explore the profound yet often overlooked journey of caregiving.
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Hi and welcome to, and so Much More. I am here with Miriam Dakin and she is the manager of pastoral care with our ambulatory services service line. How would you define ambulatory services? I feel like people are probably like I don't know what is that? What?
Miriam Dakin:is that it's anything outside the hospital right. It's things that keep you hopefully at home, getting the care and recovering when that's possible, or getting the care when recovery is no longer your primary goal. So it's hospice, home health. Pace is not part of ambulatory care, but it's part of what we still participate in in pastoral care and all of our CMG practices and the whole world outside acute care.
Cami Smith:Yeah, that's actually really helpful. So what we want to talk about today is, as we're in a theme called Life Transitions and it's kind of this unspoken theme, so if you didn't know, that's okay. But we want to talk about what it's like for parents and who, you know, obviously have their own parents who are now finding themselves taking care of their aging parents and what that looks like. And I never want to say what that weight feels like, but I also want to recognize the intense work that that is, and that's an emotional impact, that's a mental impact. In some cases, it can be a physical impact, and so I guess my question for you, as we're digging in, would be to just help us talk about what does support look like? What does care look like? So that's where we're going to go today, but before we even jump in and get started, why don't you tell us a little bit about you, your role here at Centra? What do your days look like here? Sure sure?
Miriam Dakin:Well, I am a chaplain, by training and by education and by practice, and part of my role is to be supporting people who are going through a lot of transitions in life and living in that land in between where you don't know what's going on and you may have all kinds of challenges and pressures and stresses.
Miriam Dakin:Specifically, I work with a lot of people who are in the process of taking care of someone they they love and they care about and are not always sure what. What they need yeah, what they if they have the resources that they need, both emotionally, spiritually, financially. So I also work with a team of chaplains who primarily work in hospice, but some are in PACE as well, and we're providing that care and support that says we recognize we see the difficulty of the care that is required when you are the one receiving the care as well as when you're the one providing that care and support.
Cami Smith:Yes, wow, that's a lot. Let me just recognize that first. And so you get to experience having these conversations with both patients as well as their caregivers throughout your day. What does that look like?
Miriam Dakin:Well, it's very individualized because you go into one situation and I like to let people know when you've met one, let's say it's in hospice. When you've met one hospice patient in their family or their caregivers, you've met one hospice patient in their family or caregivers. It's individualized. So a lot of what it looks like is recognizing and normalizing this experience that people are having. It is not easy to be in any of those roles with whether you're the one receiving care or you're the one providing care. You feel a sense of responsibility. You feel the weight of somebody's life changing in ways maybe they did not want and that no one really wants. You see people losing that sense of independence and fighting against that which is normal. That's what we do and you see that your own tug. If you were pulled into so many different directions, how do you have the strength, how do you have the resources, the energy, the care for yourself that may go by the wayside? So that's sort of what it looks like is going in and hearing the stories and finding what's normal about them.
Miriam Dakin:Yeah and finding what's normal about them and normalizing it and saying, yeah, this is what tends to happen with folks and helping people listen to themselves when you ask them questions that hopefully bring about their ability to name what their resources are and or to help them connect to resources that maybe they haven't considered Sounds like there's a lot of validation. Absolutely.
Cami Smith:Helping people feel seen, and I love that. You said each situation is unique and probably on various stages of that transition, and so it's just it's incredible to be able for you, even like you're, you stand in the balance and you're carrying that weight with them for each moment you sit down and have this conversation. What are some things that you share with them?
Miriam Dakin:Well, we share what we see right. We share that when somebody is questioning themselves whether or not they have the ability to do what they're doing, we can help them see that they actually are doing what is needed. Yeah, you know we tend to second guess ourselves when we're caring for somebody else.
Cami Smith:It's true, it's very true.
Miriam Dakin:But if somebody else who can see that not in comparing with any other person, but with comparing it, with the knowledge that we have of seeing it so many times repeated, saying yes, it's normal for you to have a day where you feel like doing nothing but cry. It's normal for you to have a day where you find that you're laughing with your loved one and that you are finding ways to reminisce with them. It's normal if you find yourself feeling frustrated at times. It's normal when you are uncertain about your future or their future, that all of these things are within the realm of what happens when people are caring for other people.
Cami Smith:Okay, within the realm of what happens when people are caring for other people. Okay, um, I want to talk a little bit about some of the decisions that have to be made when you are caring for a family member and, um, and you know, I think it's gotta be so incredibly tense because you don't want to make a decision for someone. Um, in a lot of cases, you know, some people very young find themselves caring for their parents when they don't want to make a decision for someone. In a lot of cases, you know, some people very young find themselves caring for their parents when they don't really have their own family or support system yet, but they may be built for that. But when you're having these conversations that again, are so different, how do you help them make those decisions Like it's time for a long-term care facility or it's time to start talking about advanced directives and then having those conversations while helping them maintain that dignity that you, that you want for them?
Miriam Dakin:well, you know we talk about in the world of advanced care planning conversations and advanced directives that it's always too soon to have the conversation, until it's too late.
Cami Smith:Oh, okay.
Miriam Dakin:So by that I mean nobody really wants to talk about this with a lot of advance notice. But the sooner you start talking about the things that are important to you, what you value, what you believe, what you hope for, what you're dreaming about, what your goals are, those can help give you guidance to say would I choose this treatment option or would I choose this treatment option? Would I choose this resource or would I choose this resource so that you can sort of do your own work to look at the benefits versus the burdens of your choices? Right, so you may choose to go into a facility because you know what it's going to cost your family for you not to do that, or you may choose to forgo a treatment, for example, a treatment, for example, if you think what you're hearing from your medical care teams, that suggests that the benefits are not going to outweigh what it's going to cost you in terms of your time or your energy or how you're going to feel in the process.
Cami Smith:Yeah, Wow, that's a lot. That is a lot.
Miriam Dakin:It is a lot.
Cami Smith:Yeah, do you find yourself sometimes just sitting quiet with them? It is a lot.
Miriam Dakin:Yeah, do you find yourself sometimes just sitting quiet with them? Absolutely the real work is going on with the caregiver, yeah, and the patient, the one receiving care. I should say we are there supporting and facilitating, but we are not directing.
Cami Smith:Yeah.
Miriam Dakin:Right. So we're not the ones that would say you need to do this. We're saying these are some options available to you, but we want to listen first to their story to know how to help give voice to what we hear them saying is important to them.
Cami Smith:Wow, that's, that's very powerful. You're, like this, um mediator for just for their own thoughts, you know, kind of like here, let me help you pull out these things. I imagine that that is so helpful in such a difficult time. So mental health plays a very big piece here, for both the patient and for the caregiver. And I'm just curious how do you advise them in that situation? When you see that there's a need they might need some additional support, it's time for them to go and unburden their thoughts and their emotions so that they can keep caregiving. Um, is that a conversation that you have often? And then, what resources do you either point them to or provide?
Miriam Dakin:In some of our work we are specifically, we put a whole team of people in place. And if you're in hospice, for example, you get a physician, a nurse, a social worker, a chaplain, home health aides and volunteers, and all of us are paying attention to the well-being of the caregiver in addition to the person receiving the primary care.
Miriam Dakin:So one of the things that we'll often check in with and say how are you doing with all that is going on and what can we do to provide some support to you? And what can we do to provide some support to you? We can encourage things that promote a sense of self-care and a sense of wellbeing, always leaving it up to that person to choose what is?
Miriam Dakin:meaningful to them. For some people it's I just want to go take a walk by myself and not think about this for right now. Well, we can have a volunteer come and sit with your loved one while you go take that walk, right. Or they may say well, I just need to talk to somebody about where I sense God is in all of this. Well, that's what our chaplains can help do. Or we can help provide connections to resources in the community with other local faith communities. Our social workers are really great about providing some emotional support, and if they're looking for resources that are connected to more formal mental health opportunities, then we can help connect people.
Cami Smith:Wow, that's so such great information and so much information For those who are listening, who are in that caregiving situation and they're like I want that. I want to be a part of that. I want that for my loved one. Are there next steps? What does that look like to step into this environment that you're explaining?
Miriam Dakin:Well, you know, if you are looking for a transition that is leading towards end of life, if that's what we're, um, we're wanting to explore. It's a conversation with your loved ones to say is this where we are? But it's also a conversation with your primary doctor or your specialist that has identified that you have a disease process that is looking like it's trending that direction, and then we can evaluate it and say do you really meet the criteria? Yet If you meet the criteria, then let's have a conversation about is this the right time?
Miriam Dakin:for you and we go from there to say what are your goals?
Miriam Dakin:If your goals are to pursue, uh uh, one more treatment for a cure. It's a little too soon for us, but if it's to, I want to be comfortable. I have some. I have some goals that I want to meet in this life that the symptoms that I'm having are preventing me from doing. Or sometimes it's a matter of identifying hey, my loved one is taking care of me and they need some support. It's time to at least explore it with us and say is this the right time?
Cami Smith:Yeah, yeah, that's really good. I didn't know I was going to go this direction, but I'm just curious. Do you ever get pushback from the caregiver? And they're kind of like I'm just curious, Do you ever get pushback from the caregiver and they're kind of like I'm not the patient, focus on the patient, which I mean? I don't know that. I don't think you know how you'll react until you're in that situation. But yeah, how do you navigate that Carefully?
Miriam Dakin:respectfully, honestly, because we certainly don't want to push something that somebody is not receptive to, but we want to keep gently inviting to reassure people that we're there not just for the person who's identified as the patient. We're there for the whole family, and that's family as defined by the patient, so they don't have to be related by blood. If you're providing care for somebody and we're involved, we care for you as well.
Cami Smith:Yeah.
Miriam Dakin:If you less.
Cami Smith:No, that's, that's really powerful and I think it's also very applicable to you mentioned those who may be not quite ready to step into that long-term I guess we'll call it end-of-life care but all of these things that you're saying are such really wise nuggets for those who have the parent or grandparent or close friend or mentor that they're caring for, um, who does still have some treatment options.
Cami Smith:Um, caregiving is difficult, no matter where you are in the journey, and I think that's one of the things, um, that I really wanted to um to touch on. Like those who are, who are listening, like there's so much validation for you here because what you're doing is hard and um, and so keep going and maybe glean from some of this where we're talking about um, just saying it out loud, get some things out loud, talk about how you feel, think about what your options are, um, and then maybe reach out and see what resources are available options are and then maybe reach out and see what resources are available, because you just never know what until you've asked. Someone told me once don't ever say someone's no for them. And so just ask like inquire, what, how can I receive help? Because the help is out there. So is there anything else you wanted to share that I haven't asked about?
Miriam Dakin:or there anything else you wanted to share that I haven't asked about? Or I think you've covered quite a lot and I echo it is hard. Caregiving is hard. It is maybe one of the hardest things you'll ever do. I will say that a lot of times. If you've got the right support in place and you're a caregiver, when the journey of that person's life that you're caring for ends here, one of the greatest gifts that people often have is the ability to say I didn't think I could do it, but I had support and I was able to do it.
Miriam Dakin:And that can make a whole lot of difference when you're grieving to know that you did everything you could do. You couldn't keep it from happening, because that's not how life works, but you could do everything you could do, and you did a good job.
Cami Smith:Yeah, I love that. Thank you so much for just sharing your wisdom with us here today on and so Much More, and thank you all for joining us. We'll see you next time on and so Much More.
