Sexuality and caregiving: a necessary conversation

Our clinic specializes in in-person and videoconference consultations with individuals who are in monogamous or polyamorous relationships, or who are single. We help people who are experiencing difficulties in both their sexual and interpersonal relationships.

With regard to the sexual aspect, we may talk about dissatisfaction with sexual relations, their frequency or quality, or sexual desires or preferences that are not shared by both partners in the couple. It can also concern dysfunctions, sexual disorders, erectile dysfunction, premature ejaculation, or pain during penetration. On the relationship side, it can be about communication, managing emotions, or conflicts within the couple. For example, with a sexologist, you can work on coping with the grief of a breakup, finding partners when you’re single, learning the art of seduction, or presenting yourself in a more desirable way.

Yes, it’s a dynamic: when I’m a caregiver, I add a role to that of partner. For many people, this new role in my relationship is difficult to reconcile with that of a desiring and desired partner.

Seeing my partner in a vulnerable position can make me desire them less. If my partner is taking care of me, I may feel less desirable and may come to see them more as a caregiver than a partner. I may also feel guilty about being helped, or I may want to leave the relationship… Shame and guilt can emerge. These are all issues that can be explored in sexology.

It’s quite rare to have patients who identify themselves as caregivers. It’s more during consultations that I notice a caregiving situation. In couples “in general,” there is a dynamic in which one member tends to take care of the other, more than the other way around.

So when caregiving is added to the mix, this couple dynamic is amplified. It’s one more challenge that couples have to face. It reminds me of a couple I’m currently counselling. The partner has suffered significant trauma and has a very difficult time managing his emotions. His partner has to deal with significant mood swings, and the man is sometimes verbally abusive.

Some nights, he has sexsomnia and touches her while she is sleeping. The next day, he has no memory of what happened. The woman feels like she has been assaulted. She understands her partner’s condition, but for her, the situation is quite unpleasant.

In general, there is a social tendency to desexualize people with disabilities, especially those who were born with them. We attribute sex appeal to people who have a certain degree of autonomy, a confident posture, and who “exude” it in their nonverbal communication. However, people with disabilities or illnesses do not appear sexy at first glance. In caregiving situations, there may therefore be a tendency to desexualize the relationship, the couple, and especially the person receiving care, and the couple themselves, including the caregiver, may do so.

When it comes to couples, the partners maintain a certain intimacy for themselves in certain everyday interactions. Sure, we sometimes shower together, but we use soap to slide more easily under each other’s bodies; we don’t really wash each other! But in this new situation, I really have to wash my partner…

If our sexuality is based on a rigid and monotonous script, what can we do? The new condition of one of the partners requires an adjustment: for example, if penetration is no longer possible, am I able to adapt to non-penetrative sexual activity?

Desire is often the most affected element in caregiver/care recipient couples. There may be functional problems, such as erectile dysfunction in men, but it is really the aspect of desire that comes up in the conversations I have with my clients. Also mentioned is the fact of seeing the care recipient as a dependent child, and conversely, seeing the caregiver as a kind of parent… All these dynamics can contribute to desexualizing the person.

In a couple, the person who has no desire usually tries to avoid the subject of sexuality. When people have no desire, they have very little motivation to arouse desire… which they don’t have! This comes with a sense of guilt. The person who has less desire suffers because the other person keeps talking about it!

It is the person who still has desire who tends to bring up the issue. They suffer more within the couple because their needs are not being met. And they can be either the caregiver or the person being cared for!

In my consultations, I often hear words like “injustice,” “unwanted,” “broken,” or “guilt.” There are also phrases that may sound like: “I’m no longer attractive,” “I’m no longer able to meet my partner’s needs,” “I’m no longer able to find the person I’m caring for erotic,” “I’m no longer able to put myself in a sexual position because I no longer feel desirable,” “I don’t want to be sexual anymore,” “I’m not there anymore. I’m not the woman I used to be,” “I can’t see myself as desirable, I have a hard time feeling desire and accepting the desire my partner might have for me.”

When neurocognitive disorders are present, what are the implications for consent?

There may be cases where a person is capable of giving consent at some times but not at others. How can we distinguish between these cases? Can my partner give free and informed consent? Conversely, there may be cases where the person being cared for is no longer able to obtain consent because it is no longer a concern for the caregiver. People with neurocognitive disorders may exhibit uninhibited, disturbing, and intrusive behaviour toward their partners.

I remember an elderly couple who had been married for 60 years and were living in a long-term care facility. The woman had begun to show signs of dementia, which manifested sporadically. At the facility, one room was reserved for intimate relations. The medical staff wondered whether the couple could use the room, given that the woman was not always able to give her consent. After discussing it with the man, it was decided to advise him to use his best judgment in each situation. Since the woman was in the early stages of the condition, her level of dementia had to be reassessed regularly. The goal was to allow the couple to continue to enjoy some form of intimacy.

There is a certain taboo surrounding this issue. Basically, it’s as if, because of the conditions, illness, and situation of the person being cared for, the focus should be on care, and sexuality should not be a priority. As if, for these couples, sexuality was a whim!

I think it’s the intent. Caregiving is more one-sided: I take care of you. With affection, I give you everything I receive from you. There’s a kind of dialogue, whereas caregiving is more like a monologue.

My first tip is to adjust our sexuality when circumstances demand it. Flexibility allows us to transform our sexuality. Are penetration and orgasm our only goals? Are there other ways to show affection and give pleasure? A whole range of options opens up. For example, a look can be sexy. We can share fantasies verbally or explore new erogenous zones. For example, people with physical disabilities who no longer experience sensations in their genitals learn to develop pleasurable sensations in their ears, navel, or nipples. Others choose to focus on giving pleasure to their partner by prioritizing oral sex. These changes often require redefining one’s masculine and feminine identity. For example, women may choose to associate their vulva less with their femininity and focus more on their breasts.

Another tip would be to have a discussion before anything happens! It’s a bit like preparing a will… What happens if one of us becomes disabled? How will we manage our relationship if illness means we are no longer able to have sex? How will we change our sexuality if a health problem arises? Do we consider opening up our relationship? If I allow you to see someone else, will you keep me informed, or not? And if consensual openness is not an option for our relationship, what are our other options?

Third tip: Seek out available resources! Sometimes we don’t yet have the tools to have these discussions and adapt. You may want to visit a sex therapist or talk to someone close to you. In short, get support so you can vent, talk, and avoid isolating yourself.

Most sex therapists work in private clinics, where you can contact them directly. No doctor’s referral is necessary. Costs can vary between $100 and $150. Consultations with psychotherapist sex therapists tend to be more widely covered by insurance. With sex therapists (without a specific title), reimbursement is more difficult, although it is increasingly being considered in insurance programs. And all services are tax deductible.

• Sexcoupletherapy.com
• François Renaud's blog
• Ordre professionnel des sexologues du Québec
• Experiencing my sexuality
• Balancing my compassion
• Find resources

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