Additional Resources Mentioned
Takeaways
We shared 4 tips:
- Find the balance in your changing role
- Give yourself permission to get help
- Keep connection while intimacy is redefined
- Give yourself permission to let go of promises you made years ago.
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56. When Your Spouse Becomes Your Patient: Four Essential Tips / Alzheimer’s and Other Dementias
Full Episode Transcript
There’s a moment when you realize your relationship has fundamentally changed. Your spouse, your partner, your companion, they’re still there. But the person you used to bounce ideas off of, they can’t be that person for you. In this episode, Sue and I discuss in the role transition that happens when your partner becomes your patient. We’re sharing four tips.
One of the hardest parts of spousal caregiving is accepting the fact that we’re no longer just partners. We’re now caregiver and care receiver. The loss of our emotional and physical partner and the emotional responsibilities we’re taking on can really take an enormous toll. And this leads us to tip one. So tip one is finding the balance in our changing roles. And you know, Sue, I have a very good friend and her husband has the same kind of dementia that Kim had, primary progressive aphasia type of frontotemporal dementia. And so we were on a long walk not too long ago, and she’s probably three or four years behind where Kim was in terms of the progression of his dementia. And we were on a long walk and we were talking through a lot of caregiving tips for where he is in his journey. And she was asking me questions and it was all good. And then there was a point in the walk when she kind of looked at me and she said, and you know, the one thing I realize is I’m forgetting to be a spouse. I’m so focused on getting the caregiving right and learning what to expect next and how to make sure he’s well taken care of, which is a wonderful thing to be focused on, that I’m just, jumping to caregiver and whipping right through being a spouse. And I thought that was really insightful because the transition from spouse to caregiver, and I went through a 10 year transition and yours was 12, is not a, it’s not a, immediate, all of a sudden they’ve got a diagnosis and now I’m a caregiver, right? And no longer a spouse. It’s a slow transition. And so we want to be careful. Like my friend caught herself being that we aren’t flipping the switch because we have a diagnosis and all of a sudden we’re not a spouse anymore.
We’re just a caregiver, particularly in the early mid part of the journey. And it is frustrating, especially early on. is so frustrating because they can’t do what they used to do and we don’t know what that’s going to be. And so we’re working with them to really do a good job of helping to maintain their dignity and their independence as much as possible for as long as possible. However, it’s a real balancing act between shifting responsibilities from them to us and giving them grace and space wherever possible to do what they can. Sometimes they’re not doing it very well and we may have to clean up after it. So these changing rules can make you feel frustrated and it can also lead to us getting upset because we’re not used to them doing things a different way. We actually created two different podcasts. One is podcast episode number two and that’s on memory loss and then podcast episode number three is on communication.
And both of these focus on helping us build patience and empathy for our loved ones early in their journey. And what they’re going through is something I call drip grief. It’s we’re a little teeny bit along the way, a little here, a little here, but it’s continuous. There’s a little thing here, a little thing here. And we’re kind of losing our companions and they’re still there. And one of the things that can be challenging is acknowledging what we’ve lost and yet still providing care and showing them love and patience. So true. And, you know, I still remember when Kim, that’s my husband, when Kim early, he had a diagnosis and he was taking medication and such, but he was still independently doing a lot of things. And one of the things he was independently doing, and he shouldn’t have been, but I didn’t know that, was, putting his medication in his pill container and taking his medication. And I noticed his cognitive capabilities declining dramatically all of a sudden. I called the doctor, said, we need a neurologist. was saying, I said, we need an appointment immediately. Looked like we had one like three days later. I’m like, okay, we can make it three more days till our appointment. But he’s just getting so much worse. Well, darn if it wasn’t the day of the appointment.
I walk into the office, he’s got his pills out and he says, you know, I haven’t been taking this one pill. We’re out of it and I haven’t been taking it for a long time now. It was his dementia medication. So there you are. Guess what? We knew it worked. That was the good news. Good thing. But that was when I realized I needed to take over medication. And it sort of snowballs from there, right? You take over medication, you take over the household finances, you take over the doctor’s appointments, you take over all the responsibility of knowing whatever you have to do after you talk to the doctor to make changes and adjustments. And so it’s really easy to get overwhelmed. It is very easy to get overwhelmed, yeah.
So tip number two is to give yourself permission to get help. This is so powerful. It’s important. It is so important. It’s so hard to realize though, sometimes that you’re getting ready to be drowning. You know, I’m getting close to drowning. You just keep adding one thing at a time. And so, you don’t necessarily notice it right away.
Exactly. So one of my favorite examples of that is my mother who was taking care of my father for many years, 25 years in the end. He had Parkinson’s, but she was caring for him and they were well into their journey. And he did a lot of them because they had a very equal partnership. And so a lot of the things though, over time, she had begun to take on the finances and all the doctors, everything we just discussed, of course. And of course, if you’ve at the point where you got caregivers involved, you’re actually balancing their schedules and everything that goes with that. And one day she called me and she was in tears. And she said, I think I’m getting ready to have a nervous breakdown. I need help. And I said, okay, I’m in the car, I’m driving. Call my sister, she got in her car and we met at my mother’s house and we realized that she was drowning in all the household responsibilities that she had taken over slowly but surely one after the other. And when you’re used to having a spouse or a partner, that’s what the word means, partner, right? And they’re capable of doing things and you don’t even ask. And you’re partnering and you’ve divided up what it takes to run a household and to manage a family you just, once that all comes down your way, it’s just, you know, be prepared. It feels like too much, it’s overwhelming. But that’s when it’s time to build your personal support network. And so we also have a podcast, number 40, that we created on how to build your personal caregiving support network. Because this is the point where you’re really, we’re not talking about professional caregivers at this point. This is when you get your family involved, like my mother did. She got myself and my sister involved. I need help. My sister took over paying the bills. I took over helping with some of the healthcare stuff. This is leveraging all your friends that have said, can and family, yes. They’ve been asking and asking and asking, what can I do to help? Well, yeah. So that’s what that episode’s about. Heavily recommend that you listen to it even before you think you’re at the point where you need it. It’s better to be prepared so you start to understand. What you’re gonna do next. It really is and it can be very surprising. For example, I have a story with my husband, Jack. He was a finance guy. He was a numbers guy. He got a CPA right out of college. He did that. He became a CFO of an organization. So I never assumed anything with the, when we got married, he’s like, I’ll take over all the finance. I’m like, sure, you know, it’s what you do all day, every day. And then I started noticing, I became aware of some things that didn’t seem quite right with the finances and I started looking into it and noticed that there were a lot of things wrong with the finances, but he’d never mentioned that he was having an issue and it wasn’t anything where he and I had to discuss it because he had just taken care of it. And so what I started to do is after he went to bed, I’d go in and I would start fixing the finances.
But I shortly after started to do it and realized I don’t have capacity for that. I’ve got all these other things that I’m doing where I’ve added in my day. I’m getting up extra early. I’m doing these things and I it was time for me to reach out and it was also not something I was really passionate about doing and so it was time for me to reach out for professional help for them to take that over because it was important and I wanted him to keep his dignity but I just didn’t have any any time. Because you’re everything else too. You’re managing the whole household.
And normally when I would have any kind of an issue, Jack was great emotional support. If I’m working on something like, honey, what do we do? What are your thoughts? We bounced ideas off each other. And I couldn’t be talking to him, plus I was trying to keep it actually from him, which I didn’t keep things from him. So I’m trying to help him maintain dignity, trying to get things done, not have him recognize where it was. And so, what do you do when you can’t talk to that person anymore? I mean, we’re going through that. And that’s when we find support groups.
Right, because it’s not just about help to help with all the tasks that you’re now flooded with. No. But it helps with the emotional support that you need.
Exactly. And you know, it’s important for us to be able to share that and talk with people, whether it’s friends, families, know, anybody else. We have to be able to get that out and do it. I didn’t go to school for any of that. I didn’t go to school to understand that. So it becomes very important for us to be able to maintain our peace of mind to recognize when we don’t have capacity to do this and it’s not the right thing for us to do.
You know, I had my best friend at the time who I talked to on the phone. She had moved to Naples, Florida, ironically. Okay. And I just told her what was happening in my day and she was wonderful about wanting to listen. Yeah. And she didn’t care what little thing I was frustrated about. She was happy to listen. And you do have to find another outlet for the emotional support that you need. My mother had a friend she went on a walk with, three times a week and she would just tell her what she was feeling. So it’s really important that we’re not just getting help with the task we’re taking on, but that’s important. But they’re also covering the emotional support we need. And people always ask and they want to help. we, you know, we reach out. Don’t keep it inside. So there’s another aspect of it.
Okay. That’s also emotional support. It’s also, yeah. And that’s the physical and intimate aspects of our marriage. And these changes, our loved one’s capacity changes and as their diagnosis progresses, this is kind of the elephant in the room that we’re not really sure how to talk about and it needs to have discussions and we need to figure out how to handle that. And it’s unique to spousal caregiving.
This is something you’re really not dealing with with anybody else, for a spouse or partner if you’re not married, but to the person you’re in love with, this is a very unique challenge. It is a very unique challenge, and that leads us to tip three, which is keeping connection while redefining intimacy. That’s a good one to Yeah, when our physical affection changes or disappears, it could be discouraging, it could be frustrating.
But it doesn’t mean that intimacy has to completely disappear. So for example, with Jack and me, even when the physical part of our intimacy had gone away toward the, for example, with Jack and me, over time, the physical intimacy part of our relationship went away. However, we did have an intimate connection until the very, very end.
And yeah, it really was wonderful. And it was that we used to hold hands with our fingers intertwined. And we had the capacity to do that. Even in his last days. Amazing. We did that when there was very little left. And so what it looks like changes. right.
So intimacy, I think understanding that it needs to be and will be redefined is definitely key. Kim would know, he had aphasia so he could hardly talk at all. But if I was out running errands and I’d walk in the door, sometimes he would get this big smile on his face and he’d come up to me and he’d grab both my hands and stare me in the eyes and say, I like, like, like. I knew what he meant. And you know what he meant? I knew what he meant. It’s different, but you know, your heart knows. Yeah. Yeah. So because I knew we were going to do this podcast, I read a report that was on recommendations on how to handle sex in a relationship with someone living with dementia. I thought it was very informative. So I’ll tell everyone what the net was. The net was as long as you both want to continue to have sex, the recommendation is continue. No problem. that’s not an issue. If you’re clearly the one not living with dementia, it’s your responsibility to watch for signs that the other person is not comfortable. And it may be the other way around. You also, it might happen that you’re the one who’s not comfortable. But either way, you’re gonna have to keep an eye on this part of your relationship and be responsible for deciding when sex is no longer gonna be appropriate.
There is a heads up. There are some types of dementia where heightened sexuality can present itself and there are behaviors that need to be dealt with. This is not at all what we’re talking about in this podcast. It’s important to understand that and to do some research on it, but that’s not what we’re talking about here. Yes, yes, you’re right. So let’s put that aside. This is really, Sue and I have both talked to a lot of people. We both had the exact same experience.
We have talked to a lot of other people. It does feel like for the majority of people, this does fade away fairly much on its own, naturally. Now, I will say there can be some awkward interactions as you’re getting to that point. So there was a point towards right before this faded away in our relationship where Kim made advances toward me. I’ve been married to the man for 30 some odd years you know, it’s not the first time that we’ve had this, you know, been on the same, not on the same page. So I knew how to, you know, rebuff and it only happened once. And then I guess he was getting uncomfortable about the same time I was, or he just forgot about it. I don’t know which, but it just didn’t come up again. That was it. So one time we had to deal with it and then that was the end of it.
For Jack and me. So with Jack and me, while the sex gradually faded, the tenderness stayed and he still, the tenderness from his heart still stayed and so that to me was such a wonderful connection and I kept remembering that. I love that. I will say in one support group, just because this is a funny story. In one support group, there was a woman who was talking about how her husband continued to ask for sex and she was at the point where she was no longer, it just didn’t feel like that kind of relationship anymore. And so she said that what she would say is, she took advantage of a short term memory problem, she would say, honey, not tonight, I’m really tired. But we had sex last night and it was great. And he seemed pretty satisfied with that. Just saying, if you get there, that might not be a bad You got some options. Exactly, exactly. But it does seem that for most people we’ve talked to, it does kind of fade away somewhat naturally. Maybe there’s an awkward time or two, but it doesn’t seem that it continues, although this poor woman was having to deal with that.
But she came up with a good solution. So for all of us, the best thing for us to do is just to stay in the moment and recognize that while sex may change, the ability to have close connections and that kind of connection where you still feel really good about each other, you can still have those. So cherish what’s left. Find activities you can do together. For example, Jack and I used to go on walks together a lot and when I moved him into a memory care community, we kept walking and we would hold hands, fingers entwined, hold hands when we were on our walks together and that stayed. That’s so nice. There was a point where we were struggling with what we could do together and so I bought a golf cart. Okay. At three o’clock every day we would get in the golf cart and go for a ride. He loved that. It was our time together. It was our time that no one else was involved and we weren’t watching TV or cooking or anything. We were just together on the golf cart ride. And that felt like something special. Yeah. So you find what those things are. Another good tip is memory cafes. Memory cafes are specifically designed to be able to have activities for both the caregiver and the care receiver and things they can be doing together. That’s really nice. Yeah.
All right, so this leads us to tip four. And tip four is giving ourselves permission to let go of promises we made years ago. Kind of the sickness and in health. For better or for worse. That we always said we would keep each other at home if anything happened, we talked about that. And yet you know, that wasn’t going to be what we were able to be doing. So bringing in outside support and or moving our loved one into a care community, you know, for most people, it is the hardest decision they’ve made and yet they feel awful about it on top of that. Yes. And you know what people tell me is, and I think I felt a little bit of this when I got, when I went and got outside paid support to come into the home.
It’s like you’re admitting you can’t do it. And what will other people think because I’m not just gonna make this my full-time job all day, every day. And to be honest, Kim went all that happy to have somebody new in the house. He kept telling the first couple of weeks, he kept telling her she needed to go home. So it is hard, specifically when you get to that point where you’re getting support and it’s the support you need, but you feel like you’re letting the other person down.
I understand how that can be. For me though, when I got to the choice of moving Jack into a continuing care community, for me, when I got to the point of it was time to move Jack into a continuing care community, it was the wisest choice for both his health and safety and my health and safety.
When it got to the point where I recognized the wisest choice for both Jack and me was moving him into a continuing care community, best for his health and safety and best for my health and safety, I felt good about it. I felt like I was making the wisest choice and I didn’t feel guilty at all. Well, that’s wonderful.
It would be great if everybody could get to that point because one thing we’ve learned is that when you’re getting help, you will by default become more patient and well by default, you will have more empathy and you’ll be more patient. And those things make you a better caregiver, which is something you’re doing for your loved one. So it’s a big circle. You feel terrible because you’re getting help and yet you’re going to, your loved one’s gonna have a better caregiving experience and be in a better place because you’re gonna have more empathy and patience. it is… It’s for both of us. Plus it’s also better for our health and safety.
You know, the last thing our care receiver needs is for us to be sick. So if we’re caring for ourselves as well as caring for them. Jack and I learned how to love each other before he had dementia. And it was beautiful and I loved him very, very much. Meeting him where he was at throughout his journey gave me opportunities to learn new ways to show him how much I loved him. You know, I do feel like that as well. I think being a spousal caregiver can actually give you a very deep sense of purpose. I discovered, I mean, I really grew as a person. I found empathy I didn’t even know I had. And I felt good about the role. I felt good about what I was doing for Kim. And I felt good, like I said, a sense of purpose. I can’t think of any other way I could have gotten that level of sense of purpose. was a wonderful experience, even through thick and thin, but it was a wonderful experience. And I do believe when we say for better or for worse or for, what is that? Richer or for poor? No, no, what’s before that? In sickness and In sickness and health. In sickness and health or for better or for worse. I do believe you don’t have to be someone’s full-time caregiver to be their primary caregiver, right? Well, and in sickness and in health and for better or for worse is for both of us. I just want to add the fact that being someone’s primary caregiver can look like lots of different things. Yes. It can be, I go to the care community and make sure they’re well taken care of. It can be that I have professionals brought into my home and I make sure that they’re well taken care of. So it’s not, being their primary caregiver and their spouse and taking care of them, it can look lots of different. It can look a lot of different ways. And I think one of the biggest takeaways is that it’s important for us to consider them and us in this. Of course. Yeah.
All right, well, let’s summarize.
Today we discuss what is really a complex role transition from spouse to caregiver. We also discussed not rushing that transition because it’s a dual role and it will move from mostly spouse to mostly caregiver. But don’t rush it.
We shared four tips.
Tip number one is finding balance in your changing role.
Tip two, give yourself permission to get help.
Tip three is keeping connection while intimacy is redefined. That’s right.
And tip four is really give yourself permission, even if you made those promises years ago about keeping them at home and everything that goes with that.
Now, if you have tips on the changing role of spouse to caregiver, please put those on our Facebook page, our Instagram page. The links are in the show notes. If you like this podcast, please subscribe to it, follow it, and share it with your friends. We really, really appreciate it. Every podcast has a matching blog where we’ve effectively taken notes for you. So find this podcast number and then on our website, find the blog with the same number and you’ll see a written version of what we’ve put in this podcast.
As we say, and this is especially true for this topic, we’re all on this journey together. Yes, we are.
