Dr. Sarah Bartel and her co-host Megan Pepin interviewed me February 20, 2018 for their show Enduring Love, where they regularly “discuss the joys and challenges of marriage and family life, and human flourishing in all its forms,” on Sacred Heart Radio.
The transcript (lightly edited for clarity) highlights are below and links to various resources mentioned during the show have been added. However, I highly recommend listening to the full episode so you can appreciate and feel the vibe on Enduring Love. This is my favorite interview of 2018.
DSB: This is an aspect of family life that sometimes we don’t really think about when we think of, you know, marriage and family: that there’s a stage in which we grow old and frail. And whether it’s caring for our own spouse or for our aging parents, you know, we’re going to have to be supporting them in ways that we might not have seen coming. So Christy, can you tell us about how you assist families as a Dementia Sherpa and maybe talk a little bit about that name and how you see your role?
CT: Sure. So I came up with Dementia Sherpa because I think most of us would agree that trying to climb Mount Everest without an experienced guide, or a sherpa, is a bad idea.
CT: We could get hurt. And going through dementia for a family–it’s one person with the diagnosis, but it affects the whole family. I find that it’s a lot easier for families when they do have an experienced guide. So that’s how that came to be.
DSB: Very good. And for our listeners who aren’t familiar with the term, is that what sherpa means? A mountain guide? Is that from the Himalayas?
CT: It is, right. So it’s an experienced guide who can say, “Oops, don’t go that way! Pitfall! Stay on the trail, drink your water, sleep. We’re going to make camp here. We’re going to recharge your batteries.” So, all of that.
I find so many parallels between that and navigating through dementia and I say, you know, “guiding you through rough terrain,” because dementia’s not something that most people study in school and it’s unfamiliar.
DSB: That is so wonderful, to have an experienced guide who knows the terrain, knows what works and what doesn’t. I love that analogy.
MP: I was on your website earlier, kind of preparing for this interview, and I saw this free downloadable guide that you have on there. Which just seems awesome. I didn’t get a chance to download it beforehand. But could you tell us just a little bit about how you got into this the service, this work, with families who are caring for someone with dementia?
CT: Yeah. The very short version is my mom told me to. But the longer version is my mom was a nurse in long-term care. And when I was eight years old, she took me to work with her. And this was back at a time when people did not understand dementia very well. They didn’t really use that word. They would say things like “senile” or even “crazy.” I went to work with her. I loved it. I loved being around the people.
And I helped get a man to come back into the building. He was determined he was going to walk back home to St. Louis, and we were in California. It was really hot, and all the adults had failed and made the situation worse, and I was able to bring him back in.
And the the plain truth is I really do feel like God put me here on this planet to do this work. I don’t know why, but I just have always had a connection with people living with dementia. I get them. They can sense that I get them. And I’m able to translate what’s happening for them to their families in a way that helps strengthen those family bonds and increase quality of life for the family and the person living with dementia.
DSB: That is such a beautiful gift! We’re so glad God put you on the earth to share that with us! And I did download your communication resources and I was reading it and really, you know–I’m the mother of four daughters, ages 4 through 14–and as I was reading about your approach, Christy, to communication, to how you approach someone suffering from dementia, a lot of it just rings so true in my heart. Like, gosh, I should be using this more and more with my children, you know, to “bring the Good Stuff,” and can you tell us a little bit about what you mean in your communication tips? When you say to “bring the Good Stuff”?
CT: Yeah, I mean respect, kindness, love, empathy, compassion. All of those. All of those things. Like St. Francis with with animals, right? Just, you know, “Love one another.” My favorite sentence in the entire Bible: “Love one another.”
And so often we get focused on, “But what kind of dementia is it?” or, “What stage is someone in?” and, “Are they a diamond or sapphire, or a level 6 or a level 5?” And all of this? I call it geek-speak. And it’s important to know a lot of that information, but in context.
The main thing, always, is that we are interacting with another person, another human being, another soul who needs to feel that we love them. That we have respect for them. That we’re going to make sure that they’re always, that they have their dignity intact. It’s essentially using your superpowers, is what I call it. Stepping into that moment with them and saying, “You know what? I got you. You do not have to go through this alone. I’m here. I’m going to make it okay.”
MP: That’s awesome.
DSB: That is beautiful. So can you give us an example of, like, a “Do” and a “Do Not” in a caregiving situation, where we might be too focused on the tasks to be accomplished? I mean, when I read about “bringing the Good Stuff,” I was thinking, ‘Okay, is this like when it’s time to leave the door and I need to get my four-year-old in her coat and shoes and she is not into it?
And you know, is that where instead of just saying, “Oh come on, we have to go, you know, we’re late and you need to put your coat and shoes!” versus really connecting with her and understand maybe her sock itches or she needs to go find that one stuffed animal or whatever? Is it that sort of thing, or do you have some examples like that you can share?
CT: Yeah, I think that’s a great example. And when we remember, again, this is a person, right? I worked inside long-term care communities for a number of years before I started my own company and this is something that’s classic, and anybody who’s had a loved one in a long-term care community can probably relate to this–as well as if your loved one is still at home. So let’s say somebody’s watching TV, right? And in the community, a nurse will come up and stand in front of the TV and say, “It’s time for your medicine right now,” or, “Do you need to go to the bathroom?” And it’s always this loud stage whisper.
Or your person could be at home and you’re like, “It’s time for dinner,” or whatever it is, and you step in front of them. And you know, you wouldn’t do that to your 40 year-old husband, right, who’d tell you, “What are you doing? Get out of the way!”
So that’s just one little part of respect. What is happening for the person that I’m interacting with right now? I need to step into her reality and figure out what’s going on for her and then walk her through it. Because dementia is brain damage. It’s a specific type of brain damage, but that’s what’s happening.
And so if someone was able to understand us when we said, “Okay, let’s go,” or, “Get ready to go,” then we wouldn’t be talking about dementia, right? We’d be talking about something else. But for them that can just really be a bridge too far. That’s kind of confusing. So if we can step into their reality, see what’s happening for them, meet them where they are, then we’re in a great position to show them that love and kindness and respect and help them get from point A to point B, whether that’s physically or metaphorically.
MP: Mmm, I’m definitely seeing the way that, like I can imagine, you know doing that to my husband, and him thinking, ‘Why are you treating me this way?’, you know, like, but allowing for the dignity and respect of that person to really be the primary goal of like, maintaining communication and allowing your interaction with them to be one of love and just love, nothing really more, nothing less. Just love.
MP: And I’m just thinking about like, the way that I’ve seen my grandparents and other other people that I’ve known who have struggled with dementia or Alzheimer’s, or some of these other mind-altering diseases, the way that like, it sometimes progresses over time, and I think you address this on your website too–DementiaSherpa.com, for our listeners. But how do you address the needs that change over time? Because no one’s perfect. No caregiver’s perfect. And I’m sure that it gets, maybe gets, harder as time goes on. How do you work with people in that way?
CT: Well, those are all great points, Megan. So, first thing that it’s important for people to know is that any type of dementia is chronic and progressive and I’m so sorry to say, it is also incurable. So it does always get worse over time; that does happen. The the other thing to know is that–and I think we all know this, but I think it bears repeating–there was one perfect person who walked the Earth, right?
CT: So none of us are Jesus. We’re going to make mistakes. That’s going to happen. And it’s okay. [Just] come back to respect, kindness, love, compassion, empathy. Turn that on yourself. Treat yourself that way first. You’re human, you’re a human who’s doing the very best that you can. You deserve all of the Good Stuff. when you fill yourself with that, then you can help your person who has some type of dementia. You can bring that to them too.
So there are specific techniques that can be used for communication, for managing what are called behaviors–which, in my opinion, “behaviors” is just another way of saying “communication I’m not enjoying,” right, because if I walked up to you, Megan, or Sarah, and punched you in the nose, I’d be communicating something but you probably wouldn’t enjoy it.
DSB: Okay, no.
MP: Probably not, no.
CT: So it’s just kind of shifting our perception a little bit to figure out what’s going on for our person.
DSB: Christy, I think you had just been talking to us about turning the Good Stuff–which is your term for respect, compassion, empathy, understanding–how to turn all that on yourself as the caregiver, you know, when things haven’t gone perfectly, and you wish you could have a do-over of an interaction, and I think it’s so important for caregivers to hear that message of self-care as well. And I know that’s a message that’s really on your heart as well. And I think for our listeners whether or not they have someone that they’re caring for who’s struggling specifically with dementia or whether it’s other challenges–even moms with young kids out there too. Could you talk to us about self-care for the caregiver, Christy?
CT: Yes, and I really want to encourage caregivers who are ready to tune out because we’re talking about self-care to hang in there with me. I know it’s the topic you don’t like talking about. I recognize that, but I do want to throw this out there because it is so important. So number one, 40% of people caring for another person–and I don’t mean moms, but I mean, you know, that has an ill, chronically ill, person that they’re caring for–40% of those folks die before the person that they’re caring for–
MP: Oh my goodness!
CT: Because they don’t take care of themselves. They don’t make time to go to their own doctor appointments. They don’t make time to walk around the block, or what have you. So, it’s so important.
CT: Number two, you have been–for whatever reason, we don’t know what the grand plan is, right, but you’re in this position and that makes you so incredibly important. And you are valuable. You, yourself, are valuable. And please know that. You are worthy of respect and kindness and love and empathy and compassion. And if you’re caring for a person who’s living with dementia, you probably already know you’re not going to get a bouquet of roses and a great big “Thank you!” It’s just not going to happen. So you’re going to need to step up and provide that for yourself. Very important.
Third thing, if you can’t look at it any other way, if you can’t, to yourself, acknowledge that you are a child of God who’s worthy of all of those things? Think of it this way: if something happens to you because you don’t take care of yourself, what will happen to your person?
MP: That’s profound.
CT: So I know I turned this lovely show into like, Scare Tactics.
DSB: No, it’s so important.
CT: There it is. I’ve worked with almost 1,200 people living with dementia and their families and I could, you know, curl your hair with horror stories, which I’m not going to, I just want to urge everybody who’s listening to remember that you’re important and you do need to take care of yourself.
DSB: That is really profound and that is, for us Catholics, too, you know, respecting the dignity of the person isn’t just respecting the dignity of the person that we’re caring for. It’s like you said, Christy, that to recognize that we are children of God. That we’re valuable, we’re worthy of that love and care.
And so what are some different caregiving tips that you give to the families that you work with? Is it respite care? You mentioned taking yourself to the doctor, taking time for a walk around the block. Can you give some more practical self-care ideas to our listeners?
CT: Absolutely. So I when I’m working directly with clients, I always try to figure out their budget first. Because I say, “I can really sell you on an Escalade because they’re lovely to drive–but if your budget says Ford Focus, let’s stop talking about the Escalade and focus on the Ford Focus!”
So I understand and I’m sensitive to that, that budget is something that is particular to a household. So I’m just going to go through some kind of free things that should apply to everybody.
So number one, start with–and I say “start with” so you can build your muscle on this in case you’re not already doing it–start with five minutes a day of you know, doing the rosary or reading the Bible or praying or something that feeds your soul. Something that connects you to God. Please do that. That’s the first, most profound thing that you can do.
Number two, breathe and move. And when I say breathe, I mean, take in that deep breath and then blow it out. And as you’re doing that, you’re getting rid of the gunk–that’s a technical term–and then consciously ask the Holy Spirit to fill you with respect and kindness and love and compassion and empathy. Ask for that, with every breath coming in. Ask to be filled with that. And then move around. Move about the cabin. Move freely. You might be able to get around for a walk around the block or maybe it’s walking in place or whatever it is. Those are all important.
Number four–and this is hard for people to hear, and I understand that, but please hang in there with me–ask for help.
MP: Ask for help?!
CT: Ask for help. Believe that you will receive it. And then graciously receive it. And the reason I say it that way is because of this: I have worked with numerous families who say, “My sister should know. She should know that I need help. She should see. I shouldn’t have to ask.” And I agree. What a lovely thing it would be if we automatically knew the wants needs and desires of people that we love and could just fulfill it like a genie, but that’s actually not how it works…and we all know that.
DSB: Yep, doesn’t work that way in marriage, either.
CT: So please ask for what you need. That’s okay. It’s okay to ask for what you need. And then please receive it graciously because people who are not used to being in this type of situation are going to make mistakes, too.
And they’re going to look to you for guidance. And they’re going to need guidance. And so maybe the first time you have your sister come over, or your cousin, or your niece, come over to help, it may not go perfectly. In fact, it probably won’t. Again, because humans are involved. But just give some guidance. Show them how to bring the Good Stuff and know that now that you’ve put in the effort of having that happen one time, the next time will be easier. Every subsequent time will be easier.
And then, finally, the help that you asked for may not come in the way that you think it should. Meaning, maybe you do need some respite and so you ask your sister-in-law to come over and provide that and she says, “I’m sorry, I can’t. I already have other plans,” or, “That’s just not my thing. I don’t feel comfortable. But let me write a check so that you can hire an in-home care aide to come do that.”
Please accept that graciously instead of saying, “No, that’s not what I want.” Because that is, somebody is giving. Whether it’s from their checkbook, you know, their bank account, or whatever. They’re responding to the fact that you’re asking for help and are trying to provide it. It just doesn’t always come the way that we have the idea, the picture in our head. It doesn’t always look that way.
MP: Right, yeah. Those tips are incredible.
DSB: Really, really good. Well, thank you so much for sharing those with us. Christy, I was just wondering if maybe you could tell us a little bit about how you work with families. Are you like their coach, or can you just describe a little bit about your model for who and how you serve?
MP: Yeah, and how can people get in touch with you, too.
CT: Sure. So, I guess “coach” is a good word. Of course, I prefer “sherpa.” Typically people contact me when they’re in a little bit of a crisis. I always say if things were going well, people wouldn’t need to know me, at least not professionally, so usually there’s something going on. So that’s the first thing we look at: what’s going on right now, and how can we fix it quickly and safely and make sure everybody’s okay?
Then, the next thing is, “What’s the plan?” and a lot of times people don’t know, number one, that you can have a plan, or number two, that they get to have any say-so whatsoever because they think–because they’ve heard from a co-worker’s neighbor’s friend’s cleaning lady that, they’ve heard a lot of myths about dementia. That you can only have somebody at home for so long and you have to put them in a memory care, or whatever. A lot of myths out there.
So I help people figure, you know, sort of sort the wheat from the chaff and let’s figure out what you want and how can we make it happen? So what’s your Right Now plan and then we come up with a Breathing Room plan. So from where you are right now, all the way to the end.
Because depending on the cause of the dementia, we’re looking at a process that lasts anywhere from 2 to 20 years. And I don’t know about you, but I feel like that is a long time to wing it, a long time to suffer through trial and error, of trying to figure out what works and what doesn’t.
So I just help people pull together a plan and give them encouragement and love along the way to, you know, fulfill that plan and reshape it if that becomes necessary, too.
DSB: Very good!
MP: And then do you work with people just in Portland, because we’re here in Seattle, with people listening all across the country. Can they get in touch with you via technology as well?
CT: Absolutely. I’m at DementiaSherpa.com. That’s my website. And I think you mentioned earlier you can get a free communication download there. Once that happens, you’ll get an email from me and know how to contact me. You can also contact me directly [via email].
I work with people in Canada and the UK and Australia, South Africa, Florida and Texas and Washington and California and everywhere. Oregon, too. We can do secure video via Zoom or Skype, whatever people prefer.
MP: Awesome. I love that. Well, thank you so much, Christy, for being here today. We have one last question for you. And that’s for your top two or three tips for couples and for families, especially those who are going through something that is so close to your heart, having a family member with dementia, but also just in general for our couples and families who are listening to Enduring Love. Okay?
CT: Well, I would say number one–we probably already covered, which is always bring the Good Stuff. Number two, again, we’ve already covered it. But this is something I tell families all the time. If you’re the primary care partner, please look in the mirror. See what God created. And remember you’re worthy. You are worthy of all of the Good Stuff yourself.
CT: And then, number three–and this is kind of a wild one at first listen–but you know, it’s okay to feel joy, to create joy, when you’re caring for a person living with dementia. They’re still capable of feeling it too. So it’s okay to have fun. It’s okay to be silly and it’s definitely okay to create those moments of joy. This doesn’t have to be long slog. You can connect on many wonderful levels and still have a good time.
DSB: That is so great to know you can still enjoy your mom,your dad, even when they’re not at the same level of ability that they used to be, that you can still have these just beautiful moments of joy with them. Thank you so much, Christy.
CT: Absolutely. Because love never dies. It can’t.
DSB: Yes! We believe that, absolutely. Well, thank you so much, Christy. It’s been so great to have you on the show with us. This has been Enduring Love radio with Megan Pepin and Dr. Sarah Bartel. My own website is DrSarahBartel.com and you can find marriage and family tips and ideas there and we just want to remind you all to share the joy of love today!