Additional Resources Mentioned
Takeaways
We shared 4 tips:
- Don’t flip the switch
- Let go of who they were, and fall in love with who they are now
- Redefine what connection means
- Give yourself permission to get help — before you are drowning
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Full Episode Transcript
Nancy
There’s a moment in dementia caregiving where you realize your relationship has fundamentally changed. In this episode, we’re sharing what we’ve learned about the importance of showing up, staying present, and working to keep finding ways to connect with your loved one as their memory fades. We’re sharing four tips.
Sue
We both have chapters in the Caregivers Advocate, version three. In this episode, we’re focusing on Nancy’s chapter, Love Beyond Memory.
Show up, stay present, keep finding ways to connect. Nancy, I’ve heard your stories. For our listening audience, what inspired your chapter?
Nancy
Well, like you said, a lot of people, some people who’ve listened and have heard my story. You unfortunately have heard them all many times. My chapter was inspired by really the story of when my husband forgot who I was. And, and then all the things that followed after that.
One day we are about five and a half years into his diagnosis. We’re driving down the road and
At this point, I was pretty much doing all the driving and he was sitting in the passenger seat. I was driving my car and he looked at me and he said, how do you like driving this car?
That’s kind of an odd question, but okay. I said, I like it. I like this car. I like driving it. He said, well, she likes it too.
Okay, don’t know who she is. He’s got dementia, so whatever. We keep driving down the road. A few minutes later, he turns to me and he says, where are we going? I said, we’re going to buy your mother a birthday cake. It’s her birthday today. He looked at me with the most earnest look on his face and he said, you are going to love my parents. They are the nicest people.
At this point, we’d been married over 30 years. And I think, oh my goodness, he has no earthly idea who I am. I don’t know how I held it together, but I smiled and I’m sure I had a strange look on my face. I smiled and just kept going. We went, picked up the birthday cake and we had the nicest little conversation in the car.
He actually asked me at one point, do you know how to get to my parents’ house? And I’m like, oh yeah, I can get there. I’m sure I know. And when we got there, I made sure they knew he didn’t know who I was. Let’s don’t bring it up. And I don’t want to upset him. We sang Happy Birthday, a birthday cake, and you know, I played the guest. We got in the car and I drove him home. And when we got home, he could not have been nicer to me. Did I want something to drink? Was there anything he could get for me? Treating me just like a stranger who had come to his house. Like company. He was lovely. Probably hadn’t been that nice to me in 30 years. Just as nice as he could be. And the afternoon continued and I realized I had not taken a shower yet that day. And so I needed to take a shower. Well, I’m a stranger in this man’s house. I can’t go into the master bedroom, strip naked, jump in the shower. Probably not the right thing to do.
Nancy
So I gathered up some things, went upstairs into one of the guest bedrooms, and took a shower. And I’m thinking, you know, this’ll all be over soon, but I just need to get through it. As the day progressed, we sat down to watch the news and he asked me, would I help him? And he started crying. And he said, basically, at this point, my husband has primary progressive aphasia. If you don’t know that, that’s a language forward kind of dementia.
And so he was really struggling to get his words out. But effectively what he was asking me to do was help take me, take him to my office. If you’ll just take me there, they’ll know where she is. And I figured out he was looking for Nancy. He wanted me to help him find Nancy. He’s crying. I go sit next to him on the couch. I’m holding his hand. I’m crying, trying to explain that I’m right here.
This is also one of the reasons Sue and I like to recommend that you watch the delusion episode before you ever actually have this happen to you, so you’re prepared because I was not on what to do. Eventually things calmed down and I just think that it was probably best just to agree to help him and it calmed down. Called my sister, I’m like, my goodness, we just had a big boohoo fest on the couch while he begged me to help him search for Nancy.
Later I ordered us some dinner and went to pick it up at an Indian restaurant. While I’m sitting in the car, I call one of my best friends and I start to tell him what has happened. And I’m just crushed. I’m crying and I’m so upset.
And I realize what I’m most upset about is not the fact that he doesn’t know who I am. It’s the fact that when he was diagnosed and when he still understood that he had dementia, which at this point he did not, he would be, he was scared and he would, you know, tell me how scared he was. And I would say, honey, it’s okay. I will be here with you all the time. Every step of the way, I will always be here. So it wasn’t the fact that he didn’t know who I was. It was the fact that he was searching for Nancy because she wasn’t here.
It still breaks my heart to think about it. That he thought I was gone. Anyway, I was hoping it would be over the next morning thinking it would be, it was not. And as far as I know for the next four years, which was the remainder of his journey, he never knew that I was his wife. I slowly moved all my stuff upstairs and moved into a guest room and that’s where I stayed. And he would ask me questions like, where do I live? I said, well, I live upstairs, I’m here to take care of you.
If I wore my wedding ring, he would ask me who I was married to and did they live upstairs with me. So I stopped wearing my wedding ring. And conceptually, the whole thing just turned into Nancy was the, he didn’t call me by name, but that I was the caregiver there to take care of him. And we slowly rebuilt a close, you know, loving relationship.
But you never corrected him because that was his reality.
Well, and I corrected him that first night on the couch, but to no avail. So it didn’t take me long to figure out this was not helpful. This is not gonna work. I fortunately had the gut instinct not to correct him in the car. And but when he really was crying and begging me to help him find her, that was when I really tried to correct him. But it was not working. And I realized that it scared him more and more when I wasn’t in his reality with him. It was more upsetting.
Now my mother-in-law, my father-in-law had Alzheimer’s and they lived three miles away. And so I was his medical power of attorney and did a lot of support taking care of him. And she would call me at five o’clock and say, you have to come over here. He doesn’t know who I am and he wants to go home. So I would go over there and he would say, she says she’s my wife, but she’s not. And you know, all the things you hear about, but every time, and it happened a bunch of times, but every time by the next morning, he knew who she was.
But in our world, with Kim and I, he never really came back to it.
Sue
The experience I had with my husband is that one evening we were sitting next to each other watching TV and I was trying to get him to go to bed. It was time to go to bed. I said, honey, you know, I’m going to bed. ” Are you ready? No. Wait about 15 more minutes. Are you ready now? No.
So I thought, all right, I’m going to get up, go into the bedroom, go to bed. I’ll tell him I’m going to do that. I’ll leave the lights on so he can find it, but I’m going to go ahead and go to bed, see if he comes to bed. So I go to bed, I’m listening and everything like that, and I hear him coming down the hallway. And I’m in bed, and he comes in the bedroom, then he walks over to the foot of the bed and just like, well, who are you? And I said, well, I’m Sue, I’m your wife.
No, you’re not. And I’m not gonna go to bed with anyone who’s not my wife. I love that story. So I’m like, okay, I’m not gonna try to convince him of that. So on the inside, I’m like, yes, this amazing man. Like he doesn’t even know who I am, but he’s not gonna get in bed with somebody who’s not his wife. So I just, I’m so sorry. I got up, left the room, and shut the door.
And I went and I laid on, we’ve got a sofa that kind of faces the bedroom. So I laid on the sofa. About 15 minutes later, the door opens, he walks out and he goes, what are you doing here? It’s time to go to bed. So he did come back to remember.
Nancy
I love that. That’s so cute. Well, I guess that that’s really the point here is that, know, this is the relationship and how it changes over the course of the dementia caregiving journey is one of the most complex things you’ll navigate.
Nancy
But I don’t want my story for everyone to say, know, everyone’s going to go through this and my loved one’s going to completely forget me. Yes, my husband did completely forget me. My father-in-law would forget overnight, but he always remembered my mother-in-law the next morning. And Jack forgot you for 30 minutes.
So what we’re going to talk about next is really sort of the gist of my chapter, which is love beyond memory. And it’s about showing up, staying present, and to continue to find ways to connect. But before we even get to that.
And this is a little bit of the showing up part, I guess, but let’s talk about tip one, because it’s tempting right after the diagnosis to flip the switch from whatever your relationship is today to you are full-time caregiver and you’re going to caregiver mode. And you forget to be whatever your other relationship is. And yet, you’ve got the diagnosis and it’s really quite a shock and it could be tempting to like, as you say, flip the switch and okay, now I’m a caregiver, gotta do everything as a caregiver, but no, mean, stay in the roles that you have. Be the spouse, be the friend, be the child, be that, and stay with them, because you still are all of those things, and you don’t want to lose them.
Sue
It’s easy when you get the diagnosis to go, okay, now I’m a caregiver, but don’t just flip the switch. You’re still a spouse or a partner or a child, a sibling, whatever it is, you’re still that. And don’t be so quick to let go of being all of those things and a caregiver.
Nancy
100%. And especially at the beginning, we also want to try to preserve their dignity and independence as much as possible. So if you just start doing everything for them, number one, they’re not gonna feel very dignified or very independent. Number two, you’re flipping the switch to caregiver, which doesn’t help your mental state of mind either.
So I had a friend, we were on a walk one time and her husband has the same diagnosis as Kim did much earlier in her journey. And she was very focused on getting tips on being a caregiver and really trying to get prepared to be a caregiver for this particular type of dementia, primary progressive aphasia. But we’re on the walk and she’s telling me all the things she’s done to prepare. And then all of a sudden she says, but you know what I realized? I said what? She said, I’m forgetting to be his wife. I thought that was so insightful.
Ask yourself regularly. When am I just being with my person? When am I just being present with them where they’re at instead of trying to manage it and look at everything and be the caregiver? Show up, laugh, do whatever you do.
Sue
Yes, good point. But don’t also, don’t look for the outcome, just be.
Nancy
You know, so in the navigating dementia caregiving roadmap, we talk a lot about not getting too far ahead of yourself and about how you can peek around the corner to see what the next steps are, but don’t get too far down the path of whatever the next steps are. The only thing we recommend really right off the bat within the first six steps, which are the ones we suggest you take right after a diagnosis, is that you listen to podcast episode two and podcast episode three of The Caregiver’s Journey.
That talks about memory loss and really your adjustment to the fact that your loved ones lost them, losing their memory. And it talks about communication and how to be respectful in your communication and empathetic in your communication with your loved one. Otherwise, we want you to just be their daughter or their friend or their spouse as long as you possibly can. And it’s having permission to be that. be that, yeah. But we do know the relationship is going to change. As I said, this is pretty complex.
So let’s talk a little bit about tip two, which is also a way to just let go of who they were and focus about being loving. It’s also about letting go of who they were and focus on loving who they are. And that’s easier said than done.
And it’s, it’s not forgetting who they were. It’s really important that we let go of who they were, but there is some grief involved in that. And we want to honor it. The fact that they’re not your partner anymore if it’s your spouse. There’s a time where they just can’t be the partner in life decisions the way they used to be able to be. Or they’re not your parents, and they’re not parenting you anymore. So there is some grief in that. So honor that, but also don’t get stuck in it. Get focused on who they are and love the person in front of you.
My husband, when I would leave the room, go out and run errands once I had some caregiver support, I would come back and he would see me walk in the door and his face would light up. And he would walk over to me, grab both my hands in his hands, look me straight in the eyes and say, I like, like.
Now he had primary progressive aphasia, which is a language forward version of dementia. That was all he could get out. But it was lovely. And I learned that that was a very loving way of him connecting with me. And so I honored that and got as involved with that connection. When he would have that look me straight in the eyes and really smile like that, then I would look him straight back in the eyes and talk to him about what happened today just to have as much of a connection as I could.
If you listen to podcast 62, which we did with Anne Basting from Time Slips, she gives you a great method to really continuously connect with your loved one. Where they’re at. Where they are. And also, I think,it’s easy to get caught up in all the mechanics of caregiving, especially as your person becomes less and less independent. And I think Sue made a good point a little earlier. Check yourself every day. When was the last time you were just with your person? You went and sat next to them, held their hand, and had a conversation with them. And if you don’t know how to have a conversation with them, listen to episode number 62. She teaches you how to have a conversation with anybody who’s got dementia, including people with frontotemporal dementia where you don’t think you can have a conversation.
Sue
That was very enlightening. She did a whole group of people that all of them had primary progressive aphasia. So finding ways to connect is critical and it’s going to be different for every person.
Nancy
There are little ways to connect. It doesn’t always have to be always a conversation. It could be turning music on and listening to music together or reading a book to them or Kim and I used to take a golf cart ride and he’d just get in the golf cart and we’d drive around the neighborhood. But that was something that we could do together, know, just be creative.
Sue
Yeah. And for Jack and me, meeting him where he was at, one of the things that we had done from the very beginning of our time together was we would hold our hands together with our fingers intertwined. And as the diagnosis progressed, it wasn’t automatic for him to do that anymore. But I would put my fingers over his and he’d open his hand so I could just slide in and what that meant was that he’s still connected at the heart and that meant the world to me. I didn’t care that he wasn’t able to initiate it. It just mattered that it was still something that was there. But it was for that moment, for that experience. And I didn’t. I didn’t try to want it to be forever and ever. I just want to be glad it was there at that moment.
Nancy
Also, you and Jack were, you’d take walks together a lot, right? That was one of your things.
Sue
We walked a lot.
Nancy
So as long as that’s practical, one of my friends, Gerry Roth, he and his wife would get in the car and take drives together to nowhere. They’d drive to nowhere.
Sue
We walked in, when we moved him into a memory care, and when we lived in our home, we’d lived on a circle. And then when he was in memory care, they had a circle. So you could literally say we would walk in circles. Literally.
Nancy
All right. So, you know, just keep finding ways to connect. It’s not a small task, admittedly, but it’s really important that we don’t get so caught up in the mechanics of caregiving that we forget that no matter where we are in the journey, our loved one would appreciate us showing them some love and connecting.
All right, let’s talk about tip four because that’s a doozy. Tip four is something you’re gonna say, are you kidding me? You’re telling me this again, right? Yes, we are.
Tip four is to give yourself permission to get help before you are drowning. So we talked about showing up, we talked about staying present, we talked about finding ways to connect. In addition to the mechanics of caregiving, that’s a lot.
Sue
It is a lot. And yet as you’re going through the journey, you gradually see that they’re struggling with a little something here and a little and you start taking it over. Perhaps it’s putting their medication together that they’re having a hard time with it. So you kind of help them with that. Maybe it’s my husband. He was a mass everyday Catholic while still in the womb. Well, he got to where he couldn’t remember how to get to church. And so it’s taking him to church and bringing him back. And it’s the little things doctors appointments.
It’s one thing after another after another where you start and yet when we’re taking on something for them, we’re letting go of something for us so that we have capacity. And it’s really important for us not to lose ourselves when we’re doing that. And it adds up, right? That’s what you’re saying. It adds up to where there’s a point where you realize that the only, you’re, this other person is completely dependent on you for everything. And it adds up. So it’s important.
Nancy
And when we say before you’re drowning, because you cannot do this dementia caregiving journey by yourself. So you will need as soon as possible friends and family support. Now, you’re going to think, especially early in the journey, well, I don’t need it yet. Well, we suggest just the opposite. We suggest you let it start just as soon as it makes logical sense for it to start. As soon as people start hearing about the diagnosis and they offer to help, your answer is what?
Sue
Yes, always yes.
Nancy
And then you worry about what they’re gonna do. If you give yourself permission to say yes early on and you get in the habit of doing that, you’ll build a support system around you. Now we talk about that in episode 40, how to build your personal support network. This is your friends and family network. And then the other thing that will happen eventually is the caregiving will get beyond what friends and family will do and they’ll need some professional support. We talk about that in episode 34. That’s how to introduce a new caregiver. Why? Because you’re like, oh, it’s gonna be so much, it’s gonna be so hard. They’re not gonna like having a caregiver in here. And so. You can come up with a lot of reasons why you don’t want it or they’re gonna say, I don’t need one. That doesn’t mean that.
Sue
If you were a child and your parents said, you know, no, you can’t have candy before dinner. There’s a reason for that. So it’s the same thing with caregiving. They may not want you to get one. That doesn’t mean it’s not the right thing.
Nancy
Right. So it’s, and it’s hard to integrate them. So, listen to that episode to help you, but either way, we want you to do it before you’re drowning and we want you to get in the habit of getting help and leveraging it so that you can be a good caregiver. Because the reality is you may feel selfish to be, to do things that give you space and time to get you know, to focus on yourself potentially. But the reality is that you will be a much better caregiver for them. So if that motivates you to do it so that you can show up better for your loved one, then let’s do it that way. And sometimes your friends can be your accountability partners when they know that you’re kind of starting to drown and you may not see it, they may see it. And if they see it in you, say yes and get help.
All right, that’s a tough one for people to absorb. But that’s what we’re doing. So I want to close with this. Okay. This is a tough road. A dementia family caregiver. It really is. Yes. And there’s no quick fix. Easy answers to everything. Obviously, every situation and every moment is different. And I will say when I look back on my experience, I found empathy, had no earthly idea I had. Most people would not say, oh, Nancy Treaser, she’s full of empathy. But I’ve discovered I really am, who knew? Who knew? Empathy, I didn’t realize I had. And when I look back on my caregiving experience, helping my loved ones, my husband, my father-in-law, my father, I have to say, I found a purpose and I found a true sense of self that came out of my caregiving experiences that I look back on. And yes, there was a lot of drama and a lot of trauma, but I look back on them and think, you know, this was a great, great experience and something I feel good about doing for the people I love.
Sue
And while it may not have been the journey we thought we were going to be on and things are different, there are things in it for us as well. And I didn’t want to lose the lessons for me in my life in that. And I accepted the fact that this was the journey that we had and made the most of it. Like, what is there here? Now, how can I be the person to help my loved one? And then what is there for me to learn from them?
Nancy
Wonderful. All right. Well, let’s summarize.
Today we discussed showing up, staying present, and working to keep finding ways to connect for our loved one.
We shared four tips.
Tip one, don’t flip the switch. Exactly.
Tip two, let go of who they were and fall in love with who they are now.
Tip three, redefine what connection means. Exactly.
And tip four, give yourself permission to get help before you’re drowning. Yes, preferably.
If you have tips that you think will help people show up, stay present, and keep finding ways to connect, please share them on our Facebook page, our Instagram page. The links are in the podcast description.
For every podcast, there’s a matching blog. So find the number of this podcast, go to the caregiversjourney.org website, choose the blog page, find the blog with the exact same number. That’s effectively the notes for this podcast.
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