Caregiver-lovers on the scenic routes

Based on the available literature, we found that little research had been done on the subject of romantic and intimate relationships in the context of caregiving. The stakeholders in contact with caregivers focused on the individual aspects: access to services, life balance, etc. The relational aspects of the caregiver with his or her spouse were rarely addressed by the stakeholders. Moreover, even if they had wanted to explore this aspect with the couples, they were not sufficiently equipped to do so.

The action-research that followed was therefore intended to equip the stakeholders. We did recruitment, held workshops and interviewed couples on this topic. I wanted to hear what the practitioners were hearing. And that’s when we realized that caregivers and couples had a lot to say.

I expected participants to have reservations when it came to talking about sexuality, but we were all thrown for a loop! In fact, people are not at all shy about talking about their feelings, problems and concerns in their intimate relationships. Some of the workshops included discussions about sensitive sexual practices. Some of the stakeholders were flabbergasted! It shows that when there is an openness combined with a framework, people are happy and comfortable expressing themselves about such a topic.

I told the couples that they had the input I needed: they were the experts! I’m always on the lookout for and listening to what is not very evident in the field. I work in action research: in the field, with the stakeholders, with those involved. Then, I proposed a discussion around three questions: 1) What changes have you noticed since one of the members of your couple is dealing with the disease? 2) What are your management challenges to reconcile the two roles of what I call a “caregiver-lover?” 3) Do you have any tips or advice to share? What works and what doesn’t?

People raise the issue of routine. With the disease, daily life changes. As different people—including home helpers—come and go in the house, the couple hardly have any time together. There are also the little technical glitches that make it difficult to show affection, for example when the ill person sleeps in a care bed. The couple no longer sleeps together, and no longer shares all those moments of intimacy around waking up in the morning... I am also thinking of the couple that used to walk several kilometres a day holding hands. Today, the man uses a walker. When the wife talks about it in the workshop, she has tears in her eyes.

Caregivers also described the roles they played before their spouse’s illness. They used to volunteer in various places; they looked after the grandchildren... Now, with the role of caregiver taking on more and more importance, they have to make a lot of sacrifices.

They also talk about the communication aspect of being a couple. Between treatments, care, appointments, couples realize that all they talk about is the disease. One man confided to us: “I used to like kissing my wife. I don’t know what’s in the medication she’s taking, but her breath is now enough to kill flies. I’d like to smooch her, but how can I tell her...? I’m tired of giving her pecks on the cheek.” You want to be able to break the silence, but you don’t know how to do it without hurting the other person or naming what you find difficult in your intimacy. We don’t want to add to it. In the end, it’s the expressions of affection that suffer.

And lastly, participants address the issue of the medical condition, which has concrete consequences on sexuality. The practices that used to take place are no longer applicable. The couple must reinvent them.

When you’re a caregiver-lover, recognizing that you’re a caregiver helps to reduce the guilt. I also think that couples tend to want to adapt too quickly. What is possible and impossible to get back in our old life as a couple, our old bubble in which we were so comfortable? Let’s keep what we can and change what must be changed according to our limits. If I can no longer travel, I either mourn the fact, or I reflect on the original purpose of the trip. This project may not be salvageable in its entirety, but surely there are ways to reach the same goal by another route. Instead of taking the highway, let’s take the scenic routes!

Yes, but not all couples are at the same point. The disease has driven some of them apart. Sometimes there is anger, because they can no longer realize certain projects together. Moreover, the problems in the relationship that existed before the disease do not disappear with it!

Other couples, however, tell me that they are even closer than before, that they manage to adapt to their new situation. They form a team when confronted with the disease, with the common enemy. They fight together and stay in love.

Where it is really difficult is when the couple is faced with a neurocognitive disease. The caregiver-lover reconciliation disappears, and the caregiver has to deal with ambiguous grief, as these testimonies demonstrate: “The person in front of me is not the one I married, I don’t recognize them anymore, I’m not attracted to them anymore,” “I don’t know if I want to invest my time and energy in this person anymore, I don’t know if I’m really in love anymore” or “The way he is now, I would never have married him, he’s not the kind of person I’m interested in!” Sometimes the situation is a bit more pleasant, as in the case of one lady who said that her husband, who had become much more romantic, had started courting her like never before!

In the workshop, we ensure that we don’t make couples feel guilty. It is all very well to remain in love, but for some it is neither easy nor possible. We have to accept these realities, listen to them and learn from them.

1. Revisit your plans as a couple. We can’t go to the cottage anymore and travel... let’s not talk about it! How can we keep our relationship alive? I advise them to go back to the original purpose of the project. For example, we had a project to renovate a cottage. What was the purpose of the renovations? Was it to bring the family back together? How can we get the family back together even if it is no longer possible to do so at the cottage? How can we still enjoy beautiful moments together?
2. Maintain activities that bring you together, that help cement the relationship. Did you garden together and can’t anymore? Make a small indoor garden. Put a small container of soil in the house and a few plants here and there. It may not be as satisfying as it was before the disease, but the important thing is to do something fun together.
3. Maintain gestures of affection. The couple wants to travel, but the man’s medical bed is now a major obstacle. It is obvious that they will have to renounce their plans. The wife sees an advertisement for a TV report on the country they wanted to visit. So she organizes a TV party. “We get naked, sit on the couch, have our own party, snuggle and kiss each other,” she says. I thought it was such a beautiful idea!
4. Limit the amount of time spent talking about the disease. We don’t just talk about illness in our relationship; we don’t let it get to us!
5. Don’t be afraid to change your routine. We introduce little changes and give ourselves the right to change certain things to make things better for the couple.
6. Manage your network. Some couples talk about the fact that the people around them help them so much that it becomes invasive. They share this tip with us: just let them know when you need them. On the other hand, we suggest that couples that find themselves isolated because they feel uncomfortable talking about the disease should organize a buffet. You invite people to your house, everyone brings something, and then you break the ice: you talk about the disease, yes, but then you change the subject.
7. Remain a team and continue to support each other. When something is wrong, I tell my partner about it. If I’m fed up, at the end of my rope, I say so! They’ll listen to me and give me a sympathetic shoulder to lean on, which will calm the emotions and keep us together in the process. Some people say that it has even brought them closer together, because they are now able to identify where they are in terms of their emotions.
8. Stop living in the future. Today is a beautiful day, my lover doesn’t have too many symptoms. What can we do together? A woman talks about her partner who has been diagnosed with an illness that leaves him only a certain amount of time to live. They didn’t sleep for two weeks because they were so stressed. Then they decided to enjoy each day and stop thinking about tomorrow. She suggests a balancing act: I have information, I know what’s coming, but today is relatively good, so I’m enjoying it!

• Lemelin, C., & Pelletier, C. (2020). Rester amoureux malgré le contexte de proche aidance;
• Atelier “Rester amoureux malgré le contexte de proche aidance”;
• Cégep de Drummondville. L’intervention de couple selon l’attachement amoureux dans un contexte de proche aidance;
• Sexuality and cognitive impairments;
• Trousse d’intervention destinée aux intervenants œuvrant auprès des couples dans un contexte de proche aidance. So far, about 80 caregivers have been trained on the kit. Caregivers are invited to talk about it, or even ask their provider for it!
• An intervention kit to better support spousal caregivers: interactive webinar on February 14, 2022, at noon.

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