Elaina sits down and talks with Lisa Jamieson from Walk Right In Ministries about family caregivers, the holidays, and ways the church can better support them.
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Elaina Marchenko: Hi everyone. Thank you for listening to Key Ministry, the Podcast this week we're really excited to have Lisa Jamieson from Walk Right In Ministries and in honor of November being Family Caregiving Awareness month. We thought we'd have her on to just talk about her experience and also her ministry and their specific activities and goals and a little bit of their history as well. So we're just excited to have her on.
Lisa Jamieson: Thank you very much. I appreciate being here. Walk Right In Ministries is an organization that helps family caregivers to walk abundantly in life, faith and relationships, so I really appreciate when organizations like Key Ministry on a month like this kind of give more visibility to particularly the family caregiver that we focus on and that usually is parents but sometimes an adult or sibling or a spouse, aging parents, that kind of thing. We offer online community and wellness training for family caregivers including peer support groups, a mentor program, faith-based family counseling, and I am a faith-based pastoral counselor certified in creation therapy. My personal focus and passion is on this caregiving community, so I really appreciate your having me today and we just are contextualizing tools for coping and strengthening caregivers in the families that are facing long-term care needs. And our own daughter, we have three adult daughters and a son-in-Law and our first grandchild on the way and our youngest Carly is 26 and she has Angelman syndrome and lives at home with my husband and I. So we get it.
Elaina Marchenko: Yes, we love that. We love ministries that have people behind it that really understand. I think that's one of the beautiful things about this whole world of disability ministry and all of the tangents of that is usually it's families and people coming from a place of understanding, not just somebody random in an office or something. So I love that part of this ministry.
Lisa Jamieson: Exactly. We need a place of resonance and understanding and what really makes Walk Right In Ministries unique is that all of our services are offered by caregivers for caregivers. So there's always, our circumstances are not exactly the same by any stretch, but there's a mutual understanding and appreciation that's really important.
Elaina Marchenko: Yeah, exactly. And I know we met, I don't know how long, I mean maybe four or five years ago, I don't remember, but I just remember talking.
Lisa Jamieson: I think it was quite a bit longer, but it goes by fast in Iowa, right? It was at a conference in Iowa.
Elaina Marchenko: Yes. Yeah. I don't really don't remember the conference very much, but I remember meeting you and talking about special needs siblings and I just appreciate the way you address special needs siblings and I felt very seen at the time, just felt like, I remember I was trying to talk more about my sisters and you kept talking to me about me and my life and my experiences and yeah, that was just really special. It was before I even left for college, so I think I was still very much in the world of being at home with them.
Lisa Jamieson: Yeah, well you were at a disability conference. That would be understandable if you thought we all would just want to talk about that.
Elaina Marchenko: Totally. I just remember being like, oh me, okay, we can talk about my experience, what it's like for me and yeah, that was really cool, so I appreciate that. Okay, so you gave a little bit of background about you and Walk Right In Ministries and I know your daughters, at least one of them is a part of Walk Right In Ministries, one of the siblings?
Lisa Jamieson: Peripherally, yeah she has very much her own life too and lives way out in California, but she does come and participate with us sometimes at speaking events or conferences and she is going through some training to do more pastoral counseling herself and she's a really wonderful mentor to siblings already. Both of her, both my older girls love mentoring and are involved in sibling relationships and families that are caregiving and so forth. They both have a real passion. In fact, I got a text message from my daughter Erin just yesterday. She was at Panera for lunch out there in Reding, California and they were employing a young man who had some form of disability and they got talking and by the time she left and she been sick, so he said he watched her put her coat on and he said something about "Are you cold?" And she said, "Well, I'm not really cold but I am going outside and I haven't been feeling well." And he said, "Can I put the rest of your soup in a container for you so you can take that home soup is good for you when you don't feel well." And she texted us and said, "I have a new friend at Panera. I'm going to always have chats with Jason at Panera now when I go there."
I love their appreciation for what things they see in the world that a lot of people miss or don't know how to respond to that people may quietly appreciate, like Jason and not know how to engage. And obviously you wonderful siblings know how to engage very naturally.
Elaina Marchenko: Yeah, there's a different perspective and understanding. I feel like a lot of things that other people might be in public and think is odd, we just kind of roll with it. We're like, eh, seen weirder or we, we've been through something different and yeah, I do think that's a cool part of it.
Lisa Jamieson: You've been caregivers since you were miniature people and you'll likely do that on some level the rest of your lives. I didn't start being a caregiver. Well, my situation is a little unique. I did have some experiences before I was a mom, but beyond that I didn't know really much of anything about disability until I was in my thirties. You've known it since whatever age you were when your sibling was born, right?
Elaina Marchenko: Right. It's a different experience for sure. So I might understand a little bit, but even I don't understand, I think the full-time, family caregiving aspect, can you just explain to us a little bit of the reality of that? What it looks like for a lot of people or maybe just even your experience personally?
Lisa Jamieson: Yeah. Well, everything I'll say right now is personal experience, but also I've worked with hundreds of caregivers, 800 families in the 16 years since Walk Right In Ministries was founded in 2008. Actually when we try to count them, it's impossible to count them all, but those that we know, we've had direct encounters with and mentoring and counseling and support groups, it's over 800 families. So anyway, I can tell you there's a lot like a long list and it almost feels overwhelming just to read it, but I think it's important to kind of take a minute to reflect on that, especially in a month like this, to validate those who are listening that live this. And for anybody else listening, it kind of maybe helps you feel like, oh wow, that's a lot of things. Did she have to give the whole list to and really it's just the tip of the iceberg, right?
Elaina Marchenko: I was going to say, if the list seems long, imagine the day-to-day.
Lisa Jamieson: Yeah. Imagine living it.
Elaina Marchenko: Yes.
Lisa Jamieson: So the first thing that came to my mind was just the overwhelming sense of battle fatigue. We often don't think of it that way, but it's very much like battle fatigue in some ways facing relentless demands to protect and preserve, let alone enjoy life with our loved ones on the whole family unit. The advocacy is never ending from paperwork, research meetings, phone calls and general coordination and oversight of things. It's required in every sphere of life from healthcare and therapies to insurance and pharmacies and the school stuff and the legal stuff and estate planning, future planning, and then church because often our church actually knows the least about how to support us because it's not their main thing,
Whereas, at least the school system is set up to support the IEPs. We may not like how they do it, but they at least kind of know something of what they're doing, and so then the church relies on us to spearhead the advocacy for our family, yet we come, there're exhausted and potentially with the highest expectations there that somebody will actually care because at school they may know a lot of stuff, but sometimes it doesn't feel like they care a whole lot, nor does that guy on the phone from the insurance company or the pharmacy. So shouldn't church at least care? So I digress. But ultimately then you feel this sense of isolation a lot of times, even if you're surrounded by people, all these people, doctors and everybody, but you just feel like really alone and sometimes even abandoned sometimes reality is you're abandoned, not just perception. I've had friends from the time Carly was very little either just kind of gradually disappear or overtly tell me, I need to separate my life from you now because it's too overwhelming for me. I'm sorry, end of story. And that's a repeated thing I've heard from others. It seems horrifying. How could somebody do that? But it happens.
There's a stress that impacts relationships and general coping skills. There's chronic ambiguous kind of grief. There are triggers every day that remind you of the things about this situation that are disappointing and that's a form of grief. There's constant decision making. Families that are caregiving are making hundreds of thousands of decisions every day and week beyond what the average person has to make and most of them are. So they're happening with great quantity and frequency and urgency and the significant, the moral and ethical implications for example of some of those decisions are really weighty from deciding whether to be part of drug trial or choosing what medication to use. Do we try medical cannabis? Do we do early pregnancy testing, just on and on? Do we have a DNR? Do we decide whether to intubate or not? All the things. And then you and I talked about those are the main things that are upfront and appreciated by most people. Then there's all these other more, not minor things, but things less thought of the likelihood that you might manage care for multiple generations, your sibling, your own children and your parents potentially simultaneously. The lack of discretionary time that many of these caregivers have. It's impossible to have a hobby, let alone try to do self care and soul care. The lack of flexibility or spontaneity to pursue dreams. No empty nest in sight for many people like myself, lack of privacy and autonomy. You had it as a teenager, were just discovering it's okay for me to be an autonomous person and marriages are trying to figure out how with people coming in and out of the house helping, nursing staff whatever, how do we even have privacy for our marriage bed if we know there's somebody down the hall or downstairs? So staying attentive to all those relationships takes an intentionality that most families don't have to ponder at a level that most families don't ponder from marriage to siblings who are also experiencing a very complicated and unique life. So obviously I could go on and on, but everything from family vacations and managing the health of the whole family is just a heaviness that can be very persistent and relentless for a caregiving family.
Elaina Marchenko: I think that's a good list. And even some of that are things that I haven't even just being part of a family, but I'm not in the lead caregiver role and especially now that I don't live at home. So it's interesting to hear from that now as I get older perspective of mom and dad because when you're little you don't even realize there's other perspectives
And you grow up and you're kind of like, well, you go through your own process of becoming a person, but then I think you kind of fly the coop and at least for me, I really have a deeper understanding of what my parents have experience and are experiencing now. And so I think that's a good list. It's a comprehensive but very honest and true. Even I feel like you left things off, so I feel like that's good.
Lisa Jamieson: Well, it's certainly funny. You have to have certain level of relatability to even begin to appreciate certain things. My daughters, until they're married, couldn't really appreciate what it sounds like for somebody else to say, I have to schedule sex at my house.
Elaina Marchenko: When you're like 12, you're like, what? Whatever. You're like, mom and dad are fine. They just need to, it's just normal life, right?
Lisa Jamieson: Yeah.
Elaina Marchenko: Totally.
Lisa Jamieson: Or then they found out when it's scheduled and they're like, oh my gosh, I didn't want to know that. Oh, I have a whole different thought now about what it was, what was really going on that day or that morning or that night.
Elaina Marchenko: Yeah. Then you get too relatable to your parents. My mom and I are like talk about a lot of things, but there's got to be some limits. That's so true. And I think maybe as a sibling I'm a little lucky. I see a lot of the benefits. I don't feel like I had some of that trauma of having the child. I know my mom has struggled with that. Other people talk about that it's traumatic to have a child with needs you didn't anticipate, but as a sibling they just come home and you just enjoy them. But what are some of the benefits and blessings that you've seen with Carly and with your life and maybe even from other caregiving families?
Lisa Jamieson: Well, let's start with that thing we were just chuckling about the fact that our family has a different kind of bizarre sense of humor that we share just between us. That this is actually a sweet kind of intimacy when we can all roll our eyes at the same kinds of things or have this sort of secret language where especially in nonverbal households, you actually develop what can be a really beautiful sort of intuition and tenderness towards noticing what's going on with other people. It can also be a challenge, and plague you a little bit, but really when we're talking just about blessings right now, it really is. The fact that Carly really can't verbally speak to us has changed our family and us as people in some really powerfully wonderful ways. So there's unexpected sweetness that comes from this life and that includes meeting a variety of people you might never have otherwise known.
We've had opportunities to learn things and gather perspectives about life that many other people don't even think about or then hear us talk about and they're like, wow, that's cool. We have people say, they don't use the word jealous, I'm trying to think what they would say, but who envy that there's something about our family closeness. They don't see the stress and the arguments that we all have too. But there is a sweet intimacy in our family of knowing something that nobody else can really get other than us than us. There's a forced slowness to life that comes with disability that can be incredibly aggravating and causes you to feel robbed of a lot of things in life at times.
And yet we get this clear view of what really matters. We learn unconditional love and we find freedom from an accomplishment mindset that our culture just pounds into us and we discover graces and contentment of living in utter reliance on God rather than ourself or others. When the culture tells us we should be self-reliant, we get to discover how wonderful and freeing it actually is to not have to rely on ourselves all the time. And then just this awareness that you have these values you can cherish that go up and unconsidered by others and you catch a vision as a result to see life and people differently. So we know as Christians that God's fingerprints is on all of mankind, but until you intimately know somebody who has really unique challenges, personality, behaviors, so on, and even really challenging ones, do you begin to really tap into an appreciation for God's handiwork, his creativity, his highly purposeful design.
You see that playing out on a micro level and a macro level every day, every day, and you take fewer things for granted. I'll give just one quick example from very early on with Carly. We had people coming into our house during the week helping with some of her therapies and we would sit every day marveling at some new tiny little microscopic nuance in her developmental, you didn't worry about big milestones anymore. When is she going to sit and stand and crawl and all the things. It was like, did you see that she just moved that finger in a different way than she's ever moved that finger before? She's never pointed at anything. She's never used a pentagraph and look what she just did. That's like the precursor to a pentagraph yahoo. And we'd often say things like, how do people not believe there is a God when you see the miraculousness of how intricately we are woven?
Elaina Marchenko: Yeah, I love that.
Lisa Jamieson: Those are blessings you can't have until you at least know people with disabilities if not have had to live life among them in some close way.
Elaina Marchenko: Yeah, I definitely relate to that too. I remember before going to college I was like, get me out of here. Totally overwhelmed but never knew anything different has its challenges as you know, it can feel just overwhelming. And then slowly, I feel like and the longer I'm away now, I love going home. I just feel like I come up for air. There's a simplicity and a slowness and like you said, it can be annoying when you're there every day, but for me having more distance, it's just so there's a different kind of peace and just going home and swinging my sister outside and she's nonverbal and that's our special time together and you don't say anything and it doesn't look like a big deal. And there's just things like that that are so special and you just see God's hand on those people and also just those situations and those times together and it's just so, you're right, it's a very unmeasurable blessing in the way you get to see God. So I love that.
So like you said, church should be the ones that care about the family and I think you're totally right because you are coming across so many different businesses, people, medical things, school thing, all these things, and you really are going up against people that maybe don't have the personal interest in your family. And so how can the church do better? How can the church better serve family caregivers specifically? I mean we do a lot at Key Ministry with serving the people, individuals affected by disability as we should, but we also, how do we serve the whole family? How do we do better as a church?
Lisa Jamieson: Well, I love that there are so many people asking this question and responding and providing support these days. Back 26 years ago when Carly was born and some of these folks who even helped in our home who were encouraging us to get involved in some support group or something, there were just so few options. Churches were just trying to figure it out on their own. And now we have books like Dr. Grcevich's Mental Health and the Church that's very practical and Lamar Hardwick's Disability and The Church. And what I just rebought the other day to somebody borrowed it and didn't return it, Amy Fenton Lee's book Leading a Special Needs Ministry and there's many now we have many and the Disability & the Church Conference that we're going to have again this year, these are such incredible researches. So I could go on and on.
People are spending their whole careers answering your question, how can the church do this better? But if I kind of summarize if I can, it's hard to me to summarize, but I would highlight a couple things and including a tool that I've been using myself even in teaching at conferences. I may be speaking on this coming up at the conference in the Spring this year, but kind of a SWOT tool like what you'd use in business to examine strengths, weaknesses, opportunities and threats. And I like to separate it into categories within those four areas. So like gospel access, practical help, friendship and discipleship and partnership in the gospel. So I'll repeat them and we'll just imagine that you're seeing the SWOT with squares like a four corners of a page and one corner is strength and one is weaknesses, one is opportunities and one is threats.
And in each of those categories we're thinking about for example, what are the strengths of our church as it relates to how people in families with disabilities can access the gospel here and what is the gospel? It's more than just the good news. It's like accessing worship, actual experience in a church service. Then there's practical helps. What are our church's strengths in terms of serving families in general, but specific families, individual families or individuals with special needs themselves in practical ways? And then friendship and discipleship. Our family, as we've talked about, isolation is a big factor. How do we get not only involved in the church from a partnership in the gospel perspective where we're co-laboring and experiencing belonging there, but how do we have friendship and experience discipleship in things like small groups? What's our church's strength in those four areas of gospel access, practical health, friendship and discipleship and partnership of the gospel.
But then we have to take the honest look like it says in Psalm 139, "Examine me, oh Lord, see if there's any wicked ways in me, and lead me to the way everlasting." We got to be honest with ourselves. Where are we weak and where is the enemy trying to threaten in these four areas? And so ultimately, what are the opportunities? How can we grow? How can we do better? And what if we sat down and actually had a family by family or individual by individual conversation where we ask them first, we behind the scenes with leadership in everybody are trying to take a hard look at what can we do and where are we strong and where are there opportunities and what do we don't know that we don't know. Now let's go and talk to families and kind of go through this exercise with them and say, what do you think our strengths are?
What do you think our weaknesses are? What do you need? We can't promise to do everything that you need, but we sure will try. You matter and we want you here. What if we conveyed that kind of message? So when you go back to your question, how can the church do better, I think number one, we've got to do better at communicating that message that we can't promise you we can do everything you need, but we want to understand how we can do well, where we're going to be weak, where are there our threats, where are there opportunities? And we want to work with you because you matter to us.
Elaina Marchenko: Yeah.
Lisa Jamieson: We need to look at where this tender soil is. Frankly, I don't like to refer to it this way, but the truth is our families who are caregiving are like low hanging fruit. They're often desperate for God and really want to know that God is there but they're hurting or they're angry and sometimes they actually even look really put together. I remember people thinking that I was just always looking so strong and I go to church and I've got my hair done and my makeup on and a nice outfit on. They have no idea what I looked like all week. And I'm not trying to put on some fancy show. I'm just glad to get a shower and feel like a normal woman for a minute. You know what I mean? But I used to spend time, weird time in earlier years thinking I almost don't want to do all this because it gives people the wrong impression that I don't need help that I'm getting by okay, when really I am hanging by a thread. There's a stress wall that these families deal with that people don't understand. Most people might live like if there's a stress wall that has, if we rated stress in our lives on a scale of 1 to 10, most people these days probably live somewhere in that mid range and wish they didn't and are working at trying not to, but they're somewhere in that range. Our families can look like they're doing just great, but actually be living at a 9.
And all it takes is one little thing to push them over the edge. And people looking in from the outside will often misunderstand or misinterpret the things that are making them think that this family is at a 6 and I'm at a 3, so they're higher. I know they're higher than me, but they don't realize, no, that family's out a 9. They look different than what they actually are and they maybe never will get to a 3, but how can you help them get to a 5 or 6 so that they're not that close to the edge all the time?
Elaina Marchenko: And like you said, it's not the job of the church to fix everything or to do everything. That would be great. And there's so much that can't be. There's just unfortunately there's stress that you will probably always carry that can't really be alleviated. But like you said, how can they do it? And the only way to know is like you said, building friendship and getting to know them because you don't know what they need until you're close with them and you just hear about their day and you're like, "I can help with that!"
Lisa Jamieson: And it's different for every family member we got to as a church, we need to honor that each family member in that caregiving system is having a unique perspective and unique needs. There's a dad that has different needs than the mom does. There are siblings, there's grandparents even that sometimes people especially in the church or anybody else doesn't realize the grandparents are processing this situation as well in their own unique way. And to some extent, not always. I'm blessed to have extended family that's very much wanting to learn and know what they can do and they've never lived in the same state as I do. And we have both. We have parts of our family, like our own siblings. My husband and I have had siblings who were completely disengaged. They aspire to be, but they have no idea what to do and they've not tried. For all intents and purposes, they've not tried.
And then we have my one sister who's always lived four states away from me or more. She goes out of her way to find any possible way that she can be of support. She and her husband have been, and then they're kids. They've been cousins who've grown up so far away and yet we're discovering even as they're all now in their late twenties and early thirties, they see each other maybe once, twice a year at the most all the years they've grown up. But there's a closeness they have as cousins. And part of that is because of Carly and if and when my other daughters ever have some kind of care coordination or support role as adults with Carly, they will always know they can count on their cousins as their close core of support. It's not practically speaking on a day-to-day basis, but from an emotional and spiritual perspective, that's a tremendous gift.
Many people don't have that. And we're not always aware when our kids are little of what even one time a year at Christmas developing those bonds, those kids growing up around Carly, appreciating, talking a lot with intention over the years about it, all of us together, these things add up and the church can be part of creating that kind of lifestyle like metaphorical and actual conversation that helps us all learn what can we do. Before I get too far off of these family roles, I really wanted to mention, I've been thinking about this. My one daughter gave an example years ago. It was actually in a webinar that one of my girls Erin and I did for Key Ministry way back. So if anybody's really interested in more sibling conversations, you can go back and find that in key ministries archives. Barb Dietrich was the one who interviewed us.
Elaina Marchenko: I'm going to try and find it and link it.
Lisa Jamieson: Yeah. Good. My daughter Erin was doing it with me that day. My daughter Alex has done some things like this with me too, but that day was Aaron and she shared something with the audience that day that I had never even heard or thought of myself being her mom. And it made me realize, whoa, I wish I'd have known this a lot earlier. I could have been a better advocate for her at church if I had understood this better. What she said was that it was really hard to be in youth group sometimes because the things going on in her life behind the scenes were so much weightier than all of her friends. And so especially when it got to be small group sharing prayer request time, she always felt very self-conscious and awkward sharing her prayer requests because other kids were like, eh, I had this argument with a friend at school and blah, blah, blah, and I need prayer for my friend, I guess.
And hers were like, my parents are really tired. They haven't slept in weeks and my sister's been in the hospital or my sister has seizures. Can you pray for my sister? She didn't want anybody else to feel self-conscious about what they were sharing, and she didn't want to minimize other people's prayers, but she also felt like hers were too big. And for me as a mom, I heard that and thought if I had been more aware and a bit more understanding, I could have easily had some coaching kinds of conversations, awareness building conversations behind the scenes with the youth pastor, maybe even with her own small group leader. But I would've ideally wanted that youth pastor to understand because he could do some quick training with all of the small group leaders because even if it's not disability, you're always going to have some of those kids who are facing those same dilemmas that Erin was describing. So we need to as a church, develop this with mindset not for we're not going to do things for people so much as we're going to do together. How can we bring in a parent maybe to talk to our small group leaders and help them understand the perspective of some of these kids? And ultimately it's going to have some universal application even beyond just the disability scenario because disability opens our eyes to perspectives that matter far beyond just disability. So the church benefits in lots of ways from engaging in a ministry with these families.
Elaina Marchenko: Yeah, I love that. Talking about benefiting how the church benefits, would you have anything else to add of other ways the church benefits from caring well for these families?
Lisa Jamieson: Oh, there are so many beautiful ways I think the church can benefit, right? And long for this. I think that we get a better picture of heaven when we see the church thriving because they take a risk and they stretch themselves out of comfort zones to engage better with caregiving families and people with disabilities. First and foremost, probably it just holds us accountable to Christ-likeness, all of us. I have not been proud many times of how I have engaged with my church or what I've thought and felt about them behind the scenes. I have had a lot of disappointment and bitterness myself about churches that I've been involved with over the years, and I'm not proud of that. And it just reminds me of how far I have to go in leaning into the Lord to change me and make me more like you. And the church does too,
But we also have in the process this opportunity to cultivate what Lamar Hardwick talks about in his book as a linking culture. If we have a church that's intentionally figuring out how we can link together in community in new ways and for new reasons and for God's purposes, it strengthens us all and a learning culture too, just constantly having a learning mindset. We don't know how to serve this family or this community, but we want to learn and we want our whole congregation to learn. That's part of it too. Well-meaning leaders are thinking, we need to know how to do better. Well, are you also educating your whole congregation how to do better with all the things you're learning? Are you sharing that knowledge? Because I mean, we all make each other's jobs easier in life better when we link up and learn up.
It elevates the urgency of the gospel too, I think when we pay attention to these things and it keeps isolated and misunderstood people visible and emotionally invested, and ultimately it puts all the unique gifts of God's kingdom and perspective of life roles and things on display. It promotes belonging, and that is the picture of heaven where we all together worship our Lord and Savior Jesus Christ, the Almighty God who for him, none of this is impossible. It's all possibilities. There are no threats. It's just possibilities. And Jesus wants us to lean, lean, lean into him to change and to shape us together in community and support of one another.
Elaina Marchenko: I love that. And yeah, it's like what we were talking about, the blessings of being a caregiver and being able to share that with the church because they can link arms and they maybe won't be the full-time caregiver, but they become caregivers on Sunday or during the week, or they care for the caregivers. Caregivers for Caregivers. I love that. I think, yeah, it's totally the image of heaven and of what God wants for the church, and I love the image of linking arms in that making us stronger. I think it's so true. The more links the stronger.
Lisa Jamieson: Yeah, that's right.
Elaina Marchenko: I love that.
Lisa Jamieson: That's right.
Elaina Marchenko: Well, that's just great. Okay, so my last question, since it's holiday season, some people are putting their trees up already.
Lisa Jamieson: I'm pondering it. I might actually do some tonight myself.
Elaina Marchenko: Yeah, some years you need it early, you need the holiday spirit, but what things can we do for family caregivers during the holidays? What things would be meaningful for them? Maybe just some ideas. I know each family's different, but maybe some general ideas of how we can send them our gifts, our services or whatever we can do to just support them and love on them during the season.
Lisa Jamieson: Well, in general, I don't think the approach is all that different than any time of the year. We can still ask what matters to them, and I'll come back to that in a second, but really just whether it's holiday season or it's summertime, there's year-round kind of best practices that are, if anything valuable to kind of hone back in on this time of year because we do get distracted just getting back to some attentiveness to these folks and making sure they feel seen and cared for in what is otherwise a really busy season will go a long way farther than we sometimes realize. We think we have to do really holiday specific things and maybe we don't, maybe we just need to recommit to some of the basic best practice things. But it can start with understanding that there are unique dilemmas of the season for these families so that we can start from a place of empathy and understanding that the pews are more crowded. Our spot is often taken when we get there. And does it matter? We joke about people having their spot in church. Well, we personally, my husband and I don't care as much, but Carly, if her routine changes and there's very specific reasons people would not realize how very intentional we are about exactly where we've chosen to sit. You know what I mean? So it's silly things.
Elaina Marchenko: I was going to say, you said spot taken an alarm belt up because my sister will just, she's like, I don't care if you're sitting there, she'll join your family make room. That's where she's sitting.
Lisa Jamieson: You won't know what is it that really matters to a family unless you ask them because it's going to be what seemed like really almost petty things to me. Expect that somebody's going to save us teeth for us. You know what I mean? And then everyone around you is busy doing fun things that you're not going to get to do. So it's kind of a season of a lot of grieving when you feel acutely more robbed of some of the things of what you consider would've been a normal life for you. The behaviors and stresses are higher all around because there's two weeks off school and all the routines and staff, if you have nursing staff or other care support staff like we do, they often need some vacation too. So you often have less help around the house when you most need it or most wish you could have it.
So even a game night at our house is tough, literally. What if the church said to us, what are a couple activities or experiences you wish could happen this holiday season in order for you or your family to consider it satisfying or successful? And what if I were to say we'd love to be able to go to a movie during the holiday season as a family, but it's really hard because Carly either gets restless and noisy just like in a church service and needs to be taken out. So then at least one family member is distracted or missing part of the movie and the rest of them are sitting there feeling like distracted by feeling bad for the person who had to go out or feeling guilty, maybe I should have been the one all of a sudden everybody's really missing part of the movie, or we want to have a game night or a play game or do a puzzle in the afternoon and we can't because Carly, somebody's got to watch Carly. So we can't do it all as a family. What if the church said, could you define a couple of two-hour periods and we'd send somebody over to hang out with Carly even if it's in the other room while you play a game,
Or, even if we go to the movie with you, but if she needs to get up and go for a walk, we can put her in a wheelchair. If it's somebody who doesn't know how to navigate her instability, then maybe that's a day that we don't use her wheelchair much, but that would be a day that we could put her in a wheelchair and have 'em just take her for a walk for 15 minutes. Maybe she could come right back in again. She just needed a break. But then we all sit there guilt-free,
Elaina Marchenko: Right, people think it's way harder sometimes, and sure to be a full-time caregiver for Carly is a hard job, but to help for two hours on winter break is not, it's so doable. You just need to know how to do it. And you only know that by talking to the family.
Lisa Jamieson: Exactly. So I really do encourage churches too to just ask and to help them figure out how to answer because honestly, for as creative and articulate as I am, and even having been in disability ministry focused on this mindset for almost two decades even, I have had a hard time figuring out what could my church do. That's why that SWOT tool can help, but really it boils down to whether you've got a tool or not, just sitting down and having conversations and being aware that because they're where they are in any stress wall, they're overwhelmed. They can't always even stop to, they haven't even given themselves permission to dream about being able to play a game of Catan at Christmas time. And then you sit down and you're afraid to open that can of worms because you get the long list like I gave with the beginning of this podcast of all the things that make my life hard. You start to have that conversation with a caregiver, and the first hour and a half of that could be this litany of things you feel like, I can't fix all this. I'm just overwhelmed, and they're just venting. But if you keep listening, you'll get to the nuggets. And then if you ultimately ask the question, what are a couple of activities or experiences, a couple things even that you wish could happen this season in order for you personally and/or your family to consider it satisfying or successful? And you will not only get answers, but you might, you should get different answers from every person in that family. When I asked my own husband that question one year before we went out of town to family's house for Thanksgiving, you know what his answer was?
I wish I could have a nap on Thanksgiving Day. I wish I could have a power nap every day over the Thanksgiving week, but even just Thanksgiving day, I'm like, honey, I should have known that, but I'm glad I do, and we can do that for you. We girls can make sure that you get a nap! And if that's the main criteria for you to end up driving back home on Sunday after Thanksgiving and feel like I got my nap. There's a lot of other things I wish I'd had gotten, but if I could have just gotten that nap, and that's the mindset. I want churches to help families get to it, let 'em dream a little. Not like, I wish I could go to Disney World for Christmas, but what's the doable things and how can we help make that happen for you? Whether it's where you sit in a service to what might you need at home to make this a satisfying and how can we be part of that?
Elaina Marchenko: Yeah, I'm just imagining a little reserved rope sign on a pew at church.
Lisa Jamieson: Well, in our case, we'd have to reserve two rows at a very crowded season because if somebody's sitting in the row ahead of us, she might pull somebody's hair, not meaning to. You want to put a reserved sign in one row and then in a row ahead of it. You say, this is a row for people with short hair who don't mind being cut.
Elaina Marchenko: That's usually where I sit. Sometimes I see families, I'll sit by you. You can't throw much at me. I love that. Well, thank you so much, Lisa. I mean, for me, this was very eyeopening and I'm sure a lot of people listening will really appreciate. I don't know. It helps me to hear lists and things like that, so that was really good for me and I'll definitely be thinking about it and during the holiday season, I think that's a really practical, just ask, see what activities, maybe you can help with one. I think that's such a practical takeaway, and there's probably lots of people who would love to do that, because you know that you can really serve a family and make a difference for them and give 'em a nap.
Lisa Jamieson: That's right. Our ultimate goal is not to meet every need. Our spiritual obligation though is to be sure we're loving others as Christ would love them, making the gospel as absolutely acceptable as possible and putting no stumbling back in another person's way even inadvertently.
Elaina Marchenko: Right. I love that. Well, thank you so much for chatting with me today. I will put all of the information for Walk Right In Ministries in case there's people listening that are going, yep, that's me, and I want to know more, and I need resources. I need someone to talk to. I'll put all that information. I think you guys just have a really great thing going. Thank you. And yeah, we'll get everything else out there on the show notes as well, so thank you for talking with us.
Lisa Jamieson: Thank you. This was fun, Elaina. I appreciate you so much, and Key Ministry is just a great partner to Walk Right In Ministries. We've appreciated that privilege for many, many years and we'll continue to do so.
Elaina Marchenko: Yes, thanks.
