Additional Resources Mentioned
Takeaways
We discussed five roles:
- Role 1: Protector — Recognizing it’s up to you to keep your loved one safe
- Role 2: Loved One — expressing your love intentionally, every time
- Role 3: Primary Caregiver — meeting your care receiver in the moment, not where they used to be or where you wish they were
- Role 4: Care Partner — supporting and expressing gratitude to the care team on your loved one’s behalf
- Role 5: Friend — finding the friendship that’s still possible
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Full Episode Transcript
Sue
There was a moment in a doctor’s office when five neurologists agreed on one word, dementia. At that moment, I looked at my husband Jack, squeezed his hand and said, I love you. We’re on this journey together.
What I couldn’t have known at that moment was how many roles I’d be asked to take on and how, through every single one of them, our love wouldn’t disappear, it would just change shape.
In this episode, we discuss five distinct roles caregiving calls us into and how to show up in each one. So love doesn’t get lost in everything caregiving asks of us.
Nancy
We both have chapters in the Caregivers Advocate Book, volume three. In this episode, we’re discussing Sue’s chapter, When Caregiving Roles Change, Love Remains. Sue, I have read your chapter and there are some fantastic stories in there. But I would love for you to tell us what inspired your chapter.
Sue
Over my caregiving journey, I found myself living five distinct roles. Each role has its own way of showing up and in its own way, an expression of love. Two words have been the foundation of every decision I made across all of my caregiving roles, safe and happy. Before every choice, I would ask, does this help my loved one be safe? And does this support them being happy? These questions work in both directions for our loved one and for us. Underneath all five of these roles, two practices held everything together. Their acceptance, honoring everything exactly the way it is 100%. I don’t have to like it, understand it, I just have to accept it. And then also, presence, staying fully present in this moment, not wishing it was what it was and not fortune telling into the future.
Nancy
You know, the peace you get when you can get to that place where you’re accepting and you’re present with your loved one, it’s really hard to describe. And I wish every caregiver could get there and I wish we could accelerate everybody’s ability to get there. So part of what we’re gonna talk about today is a little bit about being intentional and maybe how we can get some of that peace. Tell us, we described five roles in your chapter, so let’s get started. Tell us about the first role.
Sue
Okay, the first role is that of protector. And probably the best story I have with that is based on the fact that my husband and I lived in Naples, Florida. And on September 4th of 2017, we got the weather report that said Hurricane Irma, a category four storm and getting stronger, was going to hit directly on Naples. And there was no wiggle room, like literally coming up our street.
And Jack’s dementia had progressed to the point where I knew I couldn’t keep him safe if we had to evacuate or if we lost power or water or anything like that. And if we had to do that at the last minute. So I didn’t want to waste any time. This was about four days ahead of that coming. So in that moment, though, I realized that Jack couldn’t help me with that decision, and I decided we were gonna evacuate immediately. And within three hours, we were on the road to Atlanta. However, the drive was brutal. Jack kept trying to get out of the car because when we got him out of his routine, he was not happy. We went about halfway up there and spent the night.
And I laid on the floor in the hotel room right in front of the door in case I fell asleep and he decided to get up and go out of the room. And while I was laying there because there wasn’t really a lot of sleep involved. But, you know, I got to thinking that, you know, I’m laying here and I’m thinking of myself as his protector. I want to make sure he stays safe. I’m making the wisest choices for his safety. I’m protecting him.
And I knew he would have done the same for me if he had the ability to do that.
Nancy
I’m sure he would have. You know, that is a great example of something that really is the reality of your caregiving journey is as you go back to what you said, the two lenses, safe and happy. know, safe and safety really do weigh on you and become a part of the lens that you look through in so many, so many different ways. And you’re put in the role of protector really a lot.
Which is just naturally the way you end up prioritizing a lot of things in a bunch of different situations. So it’s an important role to think through and thank you for bringing it up and being intentional about. All right, tell us about another one.
Sue
All right, let’s go to role two. And role two is that of loved one. The next morning we got up and we were driving to Atlanta and I got to thinking about our wedding vows. I’m not sure where it came from. I mean, it was like all of a sudden our wedding vows came up. And as I reflected on them, they were taking on a new meaning for me. They were now my compass for how I would take care of Jack. And I found great peace in that.
What never changed throughout our whole journey was my intention. I wanted Jack, no matter how we would express it, I wanted him to feel my love. He was my love and I wanted him to know he was loved. And I know that it couldn’t always stay the same, but I wanted to make sure that whatever it was that he would feel it. So there were some things that I started doing every single time I was around him. The first one was how I greeted him. I would get to his level, whatever that was and I would look him straight in the eye, and if I could hold his hand, I would, and I would say, hello, love of my life. How’s the man of my dreams? Did he look at you like you were crazy? If he hadn’t had dementia, he might have. But you know, he’d smile, and there were times when he couldn’t, but you know, sometimes he just looked at me. So I wanted him to hear that every single time, and I said it. And then the other thing I did each time we were together, so I wanted him to hear.
I wanted him to see, because your vision goes different, but then I also wanted him to feel. And so the other thing I would do is I would take his hand. And one of the things we had done since we had started dating was we would hold our hands with our fingers intertwined. So I would work to intertwine my fingers, or if he wasn’t able to, I would just lay my fingers. So he felt my touch. And then at some point in time during every one of our conversations, I’d look at him and I’d say, I love you more than life itself. And I knew that was in his heart. So whether he responded that I could tell or not, it didn’t matter. I knew that I was sharing it at whatever level he had to be able to receive it, he would.
Nancy
Awesome. You know, that’s another good example of being intentional. And I do believe we talked a little bit about this when we went through my chapter, something similar, which is making sure that your person knows they’re loved. And I do think you did such a great job of being intentional about that role. How do we make sure no matter where they are in their journey and what they can have access to right now, how do we intentionally make sure they know they’re loved? We know that’s important to every human being.
Sue
So, an intentional effort about that is And even when they don’t respond, and you had this with Kim as well, there are times they don’t respond. That’s not the goal of doing it. The goal is that we know whether we’re saying something to them or whether we’re touching them that they can hear us and they can feel us.
And maybe today it doesn’t make the impact that you expected, but tomorrow it does. But to keep doing it, I think is really important.
Nancy
I love that. All right. We talked about five roles. What’s the third one?
Sue
The third role is primary caregiver. Okay. the primary caregivers, the day-to-day, moment-to-moment responsibilities of being their caregiver.
It’s the decisions, it’s all the things that we do, whether they know us or not.
Nancy
Okay, well, I love, you have to tell the story about that night when you were in bed, because that is one of my favorite stories. And if people listen to the podcast we did on My Chapter, they’re gonna have heard it before, but for those who hadn’t, it really is one of my favorite stories. It’s such an accurate story for being a primary caregiver, because a primary caregiver, one of the things we do is we meet them in the moment where they are.
Sue
We are ultimately responsible for them. And this was a pretty good example. Okay, you one night we were sitting watching TV as we did most evenings and it was about time for Jack to get to bed. So I stood up and I said, hey, honey, are you ready to go to bed? He’s, no, not yet. Okay. I sit down for about 15 more minutes, stand up. Honey, are you ready to go to bed? No, not yet.
Well, it’s time, because I know there’s a window where it’s really helpful for him to get to bed. So I said, all right, well, I’m going to bed. So I got up, I left the room, turned on all the lights in the hallway so he could easily see the bedroom. I go get in the bed and keep looking at the door so I can see it. Well, a few minutes later, he comes walking in the door and he just walks right over to the foot of the bed, right where I am. And he puts his hands on his hips. And he said, who are you? And I said, I’m your wife, I’m Sue. No, you’re not. And I am not gonna get in bed with anyone who is not my wife. How can you not love that? How can you not? Here’s this man, he’s in a dementia moment. And yet he is so firm. He is not gonna sleep with anyone who is not his wife. So I take a brief moment to breathe and just, know, what first thing came to me, is to say “
I’m so sorry, I must’ve gotten in the wrong bed.” I get up right away, walk out, close the door. We had a sofa on the other side of the room there. So I laid down so I can be facing the door. Well, about 15 minutes goes by, bedroom door opens, Jack walks right over to me. He looks right down and says to me, well, why aren’t you in bed? It’s time to go to bed.
His dementia moment had obviously passed. So I smiled at him and went back to bed.
Nancy
Well, good for you. It’s a perfect example of the major points that I know you made early at the beginning, which is meeting them where they are in the moment, being present and acceptance. You didn’t battle his situation. The fact that he was in a dementia moment, you had the, you were present and you accepted the situation. And I don’t know how you were so smart to say, I’m sorry, I got the wrong bed.
Sue
That was a pretty good response. just have to tell you, I have no idea where that one came on, but thank you very much. Cause that just came right to me.
Nancy
That’s a really good response. I love it. But good example of, of trying to be intentional as a caregiver on finding a way to be in the moment and be present. So I love it. All right. So this next role, one of it, you know, you’re probably my, my best example, shining star, if you will, for being, and I’ll spoil it for everybody, being a care partner. And so you can explain to everybody what a care partner is, but you are clearly an example that all of us could and should look up to. So tell us some more about it. Tell everybody else about it. I know a lot about it,
Sue
The care partner role is where we are partners with other people who are helping to provide care.
And I see that role as a huge part of their success is my responsibility. It’s my responsibility to do everything I can to prepare my care receiver to be in the best position to receive care. It’s also when it’s my responsibility in the areas of care that I’m the primary caregiver to make sure I’m doing everything I possibly can to keep them safe and happy.
And then in the role of care partner, it’s my responsibility to do everything I can to make sure that whoever is the primary caregiver for that person at that time to be in the best position to provide the best level of care. And toward that, what I did is I created a notebook. Of course, I’m the queen of notebooks. I had the printed version, I had a digital version. And I put all kinds of things in there for the care partners, or I’m sorry, and I put all kinds of things in there for the caregivers. I put in things he liked, things he didn’t like, conversations he could have, all different kinds of things. And I would keep it updated over the time when he was in the care community, so anything that would change, anybody would have. So I put all that information together, and then I shared it with members of every single shift of the care team. So I stayed overnight and shared it with the night team. I shared it with the early morning team, with the afternoon teams. So I made sure everybody had that information. I also made sure they knew I didn’t care 24 hours a day. They could call me if they had any kinds of questions. And they understood that I really meant that. And I thanked them profusely for it but they were always there.
Nancy
Well, I love how intentional you were about that.
Sue
I was very intentional about it. Early one morning, the care team called and said, we can’t get Jack to get out of bed and get a shower. And I said, I’ve got to fix that. I was surprised I hadn’t put that in the notebook. Was not in the book. Was not in the notebook.
He was a mass everyday Catholic while still in the womb. So he was used to having gone to church every day. The gentleman who he worked with was affectionately called the chairman. I said to them, tell him he has to get up and get dressed to go to church and then to meet with the chairman to go over budgets. He got up, he got dressed, he went to, and we never had that issue again. So it worked. Well, that’s being a care partner. That was being a good care partner.
Nancy
That’s awesome.
You know, another thing that I know you did is you did an amazing job of making sure that the caregivers, the people who were caring for your loved ones, knew how much you appreciated them. Yes. Tell us about that.
Sue
I felt that part of my responsibility as a care partner with them, it was to put them in the best position and to have them known that and to have them know I appreciated them, they were seen and they were valued.
And every week I would take cookies or something to them. I would custom make a card. You don’t have to custom make it, but I took something to them. And then I also would meet with every single shift to do some things with that. Well, COVID hit and that shifted, you know, being able to be in the care community. So I couldn’t talk to them directly. I couldn’t do anything. But what I did is, the website of the care community had a place where you could put comments every single day all through COVID. And I made a list of all the different departments. I would write a thank you note to the maintenance department, to the dining department, to the administrative department. I would write, I appreciate what you’re doing. I understand you’re taking risks. Thank you very much. So from the first day of COVID until we were back in there, I wrote a note every single day so they knew that they were appreciated and they were seen. The number of people who commented back to me that that made a difference.
Nancy
And you rotated departments. You didn’t do it every single department every
Sue
no, no, no, no. But I made a list so that I didn’t leave any of them out. Right. And I would roll through them, even the landscaping people. You know, I mean, I was everybody. Yeah. how nice. Well, I’m just telling you, that’s the kind of thing, you know, people don’t appreciate how much making sure the caregivers know that you appreciate them because they are caring for your loved And theoretically, it’s a little thing, but it’s the little things that to them are big things because so many people look at when you, for example, have a caregiver, whether it’s in your home or in a community, that it’s them to do the work. And I’m a partner for them. It’s not a them or me, it’s both of us.
Nancy
Well, I do have one quick example of my husband’s caregiver who was here at home told me the story of being at someone’s house and they would treat her like she wasn’t even there. So her job was to care for their loved one. But when they would sit around in the living room and she was there to care for her loved one, they would talk about things that made her extremely uncomfortable using language that made her extremely uncomfortable. They would get down political rat holes and made her extremely uncomfortable because in their view, she was…
Sue
Invisible.
Nancy
Yeah, she was invisible. So just another example, if your caregivers are in your home, treat them like people. are people. They’re providing a wonderful service. They’re caring for your loved one. Let’s make sure they know you appreciate that and that you see them and appreciate them. All right. Last but not least, role five.
Sue
Definitely not least. Role five is friend. I like that. That role. Jack and I were best friends. And we really enjoyed sharing everything and doing things together. And as I mentioned before, walked in hand in hand all the time, you know, everything. And there were times when we’d be on a walk, walking hand in hand and we’d start laughing and we’d get laughing so hard. We just had to stop and like bend over. And that friendship was different than all of the other roles. And as his diagnosis progressed, one of the things I wanted to make sure that we did is continue that friendship. And as they progressed, the conversations changed. He didn’t have access to as many things as he could before. His curiosity faded and things were just different. And I had a choice. I could grieve the friendship we had, and I could just say, well, that’s gone and let it go. Or I could meet him where he was. And I could be intentional about the part of our life that was us as friends.
And I had so much fun doing that because I could draw something out, even if it was just like a shift of his shoulder or something like that, that through all the winds of safe and happy, that I kept simplifying the conversations and finding ways to meet him where he was at so we could stay friends.
Nancy
You know, we talked about, you and I have talked about at least, the difference between the loved one role and the friend role. The loved one role is really making sure they feel loved. But that’s different than the friend role. The friend role is making sure they feel heard or they seen and being intentional about having, just being with them. Whether it’s listening to music or going on a walk like you said, or something that is just being with them, not being so caught up in being a caregiver that you aren’t spending time being a friend and letting them feel like a person.
Sue
That’s so huge, yes, yes.
Nancy
All right, well, I do think we did have, an episode with Anne Bastings from TimeSlips. And that would be a good one for people to listen to if you’re not sure, particularly in the later stages of dementia, how to have a conversation with someone with dementia and be their friend, if you be friends, yeah. And hear them and make sure they feel seen, listen to that episode. She does a really nice job of giving you some very intentional ways to do that.
Sue
And there’s something that’s really important in every one of these roles. And in order for us to be able to be doing that, it’s making sure we’re taking care of ourselves. You know, we’ve got to make sure we prioritize taking care of ourselves. Each one of the roles is beginning to ask more and more of us.
Sometimes it’s more than we knew we had. We never thought about it. I didn’t know what it was, I didn’t know. So we can’t protect our loved one. can’t love them, care for the partner. We can’t do all of those things if we’re running on empty. so whatever it looks like, care of ourselves makes all the other roles possible.
Nancy
Yes, you’re right about that. So true. All right. You told us about the five roles. Anything else you wanna throw in here while we’re finishing up?
Sue
I do have one more thing. Okay. The day came when the hospice care representative said, it’s time. I took Jack’s hand, intertwined our fingers, and it was amazing. I just felt this incredible sense of peace. I had found a way through our journey to practice acceptance, to stay fully present. And it really did ground me so that I could be intentional in every role we carried. And this last part of our journey, I could be very much at peace with.
Nancy
And you know, I think that’s what everybody is shooting for, how to gain peace. Yes. know, peace throughout the journey. And I think acceptance and presence is key to that. And then peace at the very end.
All right, well, let’s summarize.
Today we discuss Sue’s chapter and the five roles in caregiving that show up and how to be intentional about those five roles so that we can get some peace. So we can get some peace. Role one, protector, recognizing it’s up to us to keep our loved ones safe.
Role two, I love, loved one, which is really making sure you’re expressing your love intentionally every time you’re with them.
Role three, very important, primary caregiver. It is meeting our care receiver in the moment, moment by moment, where they need to be and what the care that we need to provide them and not meeting them where we wish they were. critical.
Role four, care partner. When you have other caregivers, making sure you’re giving them the support that they need and the recognition and the gratitude.
Role five, friend. Finding friendship that’s still possible. So important.
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