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Episode 24: Caregiving for a Partner: Intimacy Reimagined

How do you maintain an intimate relationship when you become a caregiver for your spouse or partner? 

Sharing life as a couple means facing and overcoming countless challenges. For so many, the ultimate challenge begins when an illness is uncovered, and one of you must become a caregiver to the other. Rene faced this transition when her husband of 20 years was diagnosed with Parkinsons in his mid-40s. In the two decades since his diagnosis, the couple has navigated a dramatic shift in household and relationship responsibilities and must constantly work at alternative ways to maintain intimacy and joy in an often difficult day-to-day.

In this episode, Rene Smyth details the ups and downs of how their relationship has changed, and Dr. Linda Franchi, a community counsellor with the Parkinson Wellness Projects, delves into the many facets of intimacy and the adjustments and adaptations spousal caregivers must embrace.

Find harmony between the caregiver and romantic partner relationships:

  • The numerous kinds of intimacy beyond the physical;
  • New ways to lean into each other, even in the face of painful and unprecedented change;
  • Practical ways to incorporate self-care into your caregiving duties;
  • The importance of reimagining the bond that holds your relationship together.

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Quotes from Dr. Franchi and Rene:

  • Even though there’s elements of the interacting differently happens, what actually happens is that there is a deeper sense of emotional intimacy. There can be a different way of loving. A different way of doing self care. So more awareness around the individuals and then the actual relationship and new ways of being together. – Dr. Linda Franchi
  • I am happy to care for him because I love him. However, I also realized that if I’m not healthy, he’s not healthy. So, I maintain strong friendships. I share, share, share, and I exercise and I’ve sought help. – Rene Smyth
  • The simple things, going for an ice cream, listening to music together. Rene talked about dancing. Is there a way to swing together? Is there a way to laugh? Music, gardening, flowers, bringing flowers. It’s an appreciation of the beauty of something with the other person as well. It’s like remembering that this person is the person you love and they love you. And it’s different, but it’s doing that aesthetic beauty in a way that’s really helpful. And it’s in these times that I think we use our curiosity and our adventure and it brings us a lot pleasure as well. – Dr. Linda Franchi

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Transcript with Audio

[MUSIC IN // INTRO]

VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.

[MUSIC DEVELOPS]

BILL: When strong relationships form and grow, milestones are created and major events are celebrated together. But rarely do partners think about facing the ultimate challenge in their relationship until it happens – being a caregiver to your spouse. 

Caregiving can create conflicts in relationships, no matter how solid or difficult they are. Providing care demands a significant amount of mental and physical time. Eventually, both spouses could see themselves neglected or the partnership itself overlooked.

How does caregiving shift the partner dynamics over time? In today’s episode, let’s hold space to redefine intimacy while caregiving for a spouse. Providing care is important, and so is the human connection which can take a myriad of forms within the relationship.

[END MUSIC]

Every generation of people experience caregiving in various roles and responsibilities. We tend to think of the care itself, while the one thing that does change – the relationship – is seldom focused on. The more care a partner needs, the more the relationship can shift from intimacy to medical needs. The demands of care become all-consuming.

Rene Smyth knows this. As a caregiver to her husband Glen who has Parkinson’s, a progressive neurological disease with no current cure, Rene had to redefine what intimacy means in her relationship.

RENE: He was diagnosed 21 years ago. At the time, we were both very young. He was only 52 years old, and I was 48, which is quite young to be that, go through that. And our son was only 10 years old. It was quite shocking to us because we had always considered that Parkinson’s was an old person’s disease, but we had already been married for 21 years at that point, so we were a very established relationship before that had happened.

[MUSIC IN]

BILL: We also sat down with Dr. Linda Franchi, the Community Counsellor with the Parkinson Wellness Projects, a non-profit organization that supplies leading edge, evidence-based programs and other services to provide physical, emotional, and educational support for the Parkinson’s community.

I wanted to know what happens in this kind of shocking change to a relationship and have her share some of the aspects of intimacy that come into play.

[MUSIC FADES]

DR. FRANCHI: So when we have an established relationship, there are intimacies that are established in the relationship, and it’s a big shock often to the individuals, the caregivers, and the persons receiving the illness or chronic diagnosis. And there’s often a period of kind of closeness, and then sort of a move apart, and then they move in. I call it the storming at first, because everyone’s trying to cope with this big news. And then in terms of physical intimacy, this changes over time. And there’s many, many different kinds of intimacy. And when people come and see me, I often talk to them about what are the issues that they are having, what are the changes they are going through.

So there’s many different kinds of intimacy. There’s the physical intimacy. There’s sexual intimacy. There’s emotional intimacy. There’s also intellectual intimacy, spiritual intimacy. There’s also experiential intimacy. There’s so many. There’s conflict intimacy. And, of course, one of my most favourites is the aesthetic intimacy. And so, all of those have their own components of helping one another to lean into one another. And they’re different ways of relating to each other in new and different ways, because sometimes the old ways have to be adapted into new ways or you expand further on ways that you may have touched on it before, but didn’t have a name for it.

BILL: Yeah. So, great list. So, Rene, would you mind to share a bit about your caregiving journey from before the diagnosis to your husband being diagnosed with Parkinson’s, and to the many years of partnership that have followed?

RENE: Because we’ve been married for 21 years already, we had established our roles were really a pink, blue relationship. I did all the housework and the stuff inside, laundry, shopping, that sort of thing. And my husband did all the external things like yard work, gardening, fixing things, building things. 

And so when he got diagnosed, at first, I mean, it takes a little while for things to kind of feel like they’re falling apart. And we were coping quite well, except that he went into a deep depression. And because we had a, still had a young child, our focus really went mostly to him, and we were just mostly ignoring what was, him and I were having to deal with. Once he started failing, then I had to take on a lot more of the blue jobs that I was not experienced in. And I was really resentful of that for a long time. And my husband, of course, was very embarrassed about that because he couldn’t do those things anymore.

What we started doing is realizing that I had to take on a lot more stuff. And we were still both working at the time, so he ended up having to retire early. I continued to work for another eight years, but then it just became too much because our son was growing and he was no longer in regular school, so he was going to go to university. So I retired to take care of him because his health was really poor and we couldn’t just handle it anymore. However, we did learn that we needed to hire people who could do that stuff, and that was very helpful. But also because we were both so capable in our roles before, it’s hard to let that go. It’s hard to give that up to somebody else.

BILL: And because you already had this long-established relationship, and even at the onset of the Parkinson’s diagnosis, tell us about how your physical relationship changed.

RENE: We had been very active physically or intimately. However, like I said, he went into a deep depression almost immediately. But our relationship was solid. We trusted each other, we cared for each other, and we felt very safe with each other. 

So it wasn’t until we started preparing for this podcast that I, talking with Dr. Franchi and finding out that how many other ways of intimacy there are. And it was quite surprising to me because I went, well, I guess we do a lot of that. We care for each other and we just aren’t having sex anymore. We’ve even just through Parkinson’s, learned that dancing happens with a different part of the brain. They hear music and their body reacts differently. And we happened to love to dance, so that was really great. Another thing that we do that’s lovely, is that he’s very squeamish about other people touching him and stuff. So his feet needed tending. And so I started doing foot care with him because he’s got edema and he needs compression stockings and there’s all kinds of things. And suddenly that became something that worked really well for us. It’s just me taking care of his feet.

[MUSIC IN]

BILL: As Dr. Franchi pointed out earlier, there are different forms of intimacy. Although as a society we tend to lean towards sexual intimacy when talking about the physical side, Rene was able to reconcile that there is more to physical intimacy than the romantic aspects of a sensual relationship.

As we listened to Rene talk about this experience, I wanted to hear Dr. Franchi’s perspective on the shift in identity in a spousal relationship, when stepping into this caregiving role.

[MUSIC OUT]

DR. FRANCHI: Initially people feel a great sense of shock and a sense of loss because of the relationship needing to change on other people’s terms. So they didn’t actually agree to the change. This came out of the air. And so initially the losses are shock. Sometimes people feel that they didn’t sign up for this. I try to really get people to express all of the different emotions that they might be feeling. 

Some people are resentful, some people are angry. Expectations, when you have a whole list of expectations of how things are going to go, and then suddenly things aren’t going that way. The benefits or the gains is that, as Rene so aptly explains, is that, even though there’s elements of the interacting differently happens, what actually happens is that there is a deeper sense of emotional intimacy. There can be a different way of loving. A different way of doing self care. So more awareness around the individuals and then the actual relationship and new ways of being together.

BILL: That’s a great list. So let’s go back to Rene. Speak to that Rene, if you would from your perspective, how has your relationship with your husband changed not only activity-wise, but sort of spiritually, emotionally?

RENE: Well, I think that we had to, like Dr. Franchi said, it’s like you’re shocked, you’re in denial, you’re always hopeful, because you think, oh, things are going to change. But at some point you realize that things are not going to get better. They’re going to get worse. And at that point you have to go, how am I going to navigate this going forward? 

And one of the biggest things that we found was because suddenly so much has been piled on that we had to remain calm and just not get overwhelmed with trying to, our life had changed, we’re not going to have the dinner parties that we used to have, but we still eat [LAUGHS] and we still have dinner with certain people. But we knew that we just couldn’t let it take over our lives negatively if we had to stay happy. And how do you do that? You just find the little things that bring you joy and you don’t take on too much, and you delegate. You start saying yes to people who say, oh, can I help? And before you used to go, oh, no, I’m fine. Well, now you say, yes, yes, yes, always.

BILL: I also heard you speak a little bit about his needs superseding yours. And of course, we’re always talking about self care. Can you say a word about how that works in your household?

RENE: I mean, his needs, of course, are always number one because he’s sick and I’m not. So it would be silly of me to expect him to care for me the way that I used to. I am happy to care for him because I love him. And however, I also realized that if I’m not healthy, he’s not healthy. So, I maintain strong friendships. I share, share, share, and I exercise and I’ve sought help. I’ve joined a caregivers group, which was absolutely so wonderful for me because I resisted for so long. I always thought it was not for me. And my husband’s so private. He doesn’t like me talking about stuff. But the caregivers group is about caregivers, not about their partners. And it’s actually, you go in feeling like you’ve got this horrible burden, and then you are suddenly humbled by the stories that you hear, what people have to take on, and then caregivers getting sick themselves that suddenly you go, wow, I am so lucky.

[MUSIC IN]

BILL: Self-care for caregivers is essential. If caregiver burnout hits, intimacy suffers. So whether online or in person, Family Caregivers of British Columbia hosts a number of caregiver support groups. To explore which group is right for you, call the Caregiver Support Line toll-free at 1-8-7-7-5-2-0-32-67.

Although Rene is aware of self-care, I was curious about Dr. Franchi’s opinion on self-care when there is a shifting of dynamics within a relationship.

[MUSIC OUT]

DR. FRANCHI: As the relationship is changing and you’re creating new ways of being together. Taking care of yourself is really important, but sharing in some of those experiential things is good too. So popping in a good movie, having a laugh together, depending on the abilities and mobilities. What are some of the things that you can do together? You know, the simple things. Going for an ice cream, listening to music together. Rene talked about dancing. Is there a way to swing together? Is there a way to laugh? Music, gardening, flowers, bringing flowers. 

It’s an appreciation of the beauty of something with the other person as well. It’s like remembering that this person is the person you love and they love you. And it’s different, but it’s doing that aesthetic beauty in a way that’s really helpful. And it’s in these times that I think we use our curiosity and our adventure and it brings us a lot pleasure as well.

BILL: Rene, come back to this question about resources because you have articulated very well about how you said I’m going to find help and you’ve done it. Can you talk a little bit about resources that you have used?

RENE: Absolutely. I mean, there are also resources available to my husband. There is the Parkinson’s Wellness Project that they have exercise classes based on your abilities. And he goes three times a week. He plays ping pong in one of them. They do have dance ones, but they have a lot of exercise classes. And he feels better when he’s doing that. And so when I take him to those, because he doesn’t drive anymore, I’ll drive him. And then I used to cram in all kinds of errands, but I don’t do that anymore because I just got, you get too overwhelmed. Now, I drop him off and I go for a walk or I go to my own exercise class or a yoga class and then I pick him up and we both feel better because we’ve just done something energizing and for ourselves independently. 

But I’ve also, like I said before, I’ve joined a caregiver’s group. I’ve also joined a mindful self-compassion group which is all about me. It has nothing to do with your partner. It’s just remembering who you are inside, because you’ve gone from a partnership and now you’re really having to really take care of yourself and be happy with yourself. But another thing is finding a psychologist or a psychiatrist is pivotal. Being able to talk confidentially and openly about really difficult subjects that you can’t talk to your friends about because they love you both. You can’t say, oh, he’s driving me crazy today, because they go, oh, he’s just having a bad day. But you can go to your psychologist and say exactly what it is and they understand, without judging you.

BILL: So let me switch back for just a moment to Dr. Franchi, what topics or themes do you see that are common, uh, in this kind of shifting relationship between a caregiver and their recipient?

DR. FRANCHI: Initially when people come to me, they are often overwhelmed. So there is a change in their identity from the relationship which used to be, I always kind of separated out, so there’s the person, the caregiver, and then there’s the us, the relationship of the us. And what I have found is when they first come to me, they are taking responsibility for the person, themselves, and the us. So all of it. Often they’re overwhelmed and they have to create a new identity going back to themselves into looking at how they’re going to cope with the changing needs of the person. And so that is in process over time because the needs change. So coming to terms with expectations and coming to terms with their new role as a care partner, but also looking after self.

BILL: Rene, you mentioned about the day to day, that, that the overwhelm is always lurking there, can you share a little bit about how you have learned to cope with that?

RENE: Yeah, I mean, certainly their abilities and just the simplest of tasks is an eye opener because you go, gosh, you can’t even put on your socks. I mean, it’s like the simplest of things. So it’s not just the big things. It gets very, very complicated. But I’m always reminded about something that my father said to me many years ago when my mother and father were aging and their health was declining. My dad said, you know, you spend the first half of your marriage trying to pull their pants down and the last half trying to pull them up. 

BILL: [LAUGHS] That’s cute.

RENE: But you can’t be angry at them. I have heard other people say it’s like having a toddler in the house. But they’re not a toddler, they’re your spouse. And you have a memory, a shared memory of that person inside. And they peek out every once in a while and it just brings you joy. And day to day, one task at a time. You know, on Saturdays was the only day you could do the housework well, now, if it doesn’t get done, oh, well, the next day you’ll do it. Or there’s always something that will derail a situation. But we’re all mature adults, and I think that we understand that this could happen to anybody. It will happen to everybody. [LAUGHS]

[MUSIC IN]

BILL: When the role of caregiving focuses so much on daily medical obligations, the potential for intimacy in the caregiving relationship deteriorates. As we heard from Rene’s experience, while there is love, it does get buried under the weight of caregiving.

However, as Dr. Franchi points out, that doesn’t mean intimacy is solely one-dimensional. In a caregiving relationship, the magic that holds the bond together can be reimagined in many ways. When you allow the clinical aspects to take a break, you may find ways to bring forward that human connection, even if just for a moment.

If you are looking to strengthen your caregiving relationship, call the Family Caregivers of British Columbia, Caregiver Support Line toll-free at 1-8-7-7-5-2-0-32-67.

[MUSIC CONTINUES]

As we wrap up this episode, let’s hear some final thoughts from Rene and Dr. Franchi on how to redefine intimacy in a caregiving relationship.

RENE: The fear of most caregivers is that, I’ll say this about women, we always thought that our husband would take care of us when we got sick, but that’s not the case now. And we worry and we fear who will take care of us. It’s easy to get overwhelmed and think that your life is, it is, well, your life isn’t what you had ever planned. But don’t beat yourself up. You are really doing the best that you can, and you just have to have courage and be kind to yourself and have joy. I don’t use the word hope anymore because hope died a long time ago. But there are lots and lots of ways to have joy.

DR. FRANCHI: From my heart, I want to say to people, you didn’t cause this. Your partner, or your person, or whoever it is you’re caring from, didn’t cause this. You actually can’t control it and you can’t cure it. And so, as you make your way through the process and getting all the supports that you can get, coming to terms with what it is that’s real today, will allow you the freedom to find those moments of joy, find those moments of leaning in with one another and having a wide range of full range of emotions and life together. And I want to say, I guess, thank you to all the caregivers out there who are doing this from their hearts.

[MUSIC DEVELOPS // OUTRO]

VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.

If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.

Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.

[MUSIC ENDS]