En español | Couples can sometimes neglect the intimate side of their relationship when one partner becomes caregiver to the other. It's a challenge to maintain romance — that crucial sexual, sensual or emotional connection — when one of you is focused on caregiving tasks and the other is struggling with health issues.
Caregivers may worry that physical affection will hurt their loved one or that they won't be in the mood for even kissing or snuggling, much less sexual intercourse, says Carly O'Brien, caregiver program coordinator at the nonprofit CancerCare. "A lot of caregivers feel quite selfish that intimacy is even on their minds, given all that's going on with their partner." (Dementia brings up particularly sensitive issues when it comes to sexuality; see specific advice for dementia caregivers at the end of this story.)
But taking time for intimacy can be an invaluable source of comfort for both partners when they're facing a health crisis or managing a chronic illness. A few tips:
1. Talk openly to each other. It's natural to want to avoid awkward or sensitive subjects, but try to push through your discomfort and be honest with your partner about your needs and desires, and how caregiving is affecting both. That kind of sharing, O'Brien says, "plays a big role in terms of intimacy preservation."
2. Consider talking to a psychologist or social worker. This can be especially helpful if you want to work through your feelings without fearing judgment or are not yet sure how to broach the subject with your loved one. "You can sort of play out ways to communicate," O'Brien says. Caregiver support groups can also be a good place to vent frustrations and feel less alone. You're likely to find plenty of others who share your concerns.
3. Manage your expectations. Understand that fatigue is real, side effects are real, and — especially when cancer or certain other serious medical ailments or treatments are involved — decreased libido is real. So your sex life might not be like it was, but that doesn't mean it has to be nonexistent, says O'Brien. "We sometimes devalue things like hugging or holding hands, saying 'I love you,' saying how beautiful someone looks in a certain light — those are really the building blocks of intimacy."
And remember what the relationship was like before. "See that as a starting point in terms of managing your expectations," she advises. "If your partner wasn't into sex before [the illness], then certainly don't expect them to be in the midst of cancer treatments."
4. Go on dates. You don't have to do anything fancy; just find activities where you and your partner can connect in nonphysical ways. Maybe go see a movie together or hit your favorite restaurant — any activity that's not focused on the disease. "Carve out that time to say, 'Let's be husband and wife or partners, not caregiver and care recipient, just for a couple of hours,'" O'Brien suggests.
5. Set your own rules. "There's a lot of pressure, both internal and external, to have a relationship that looks a certain way," says O'Brien, who recommends that couples define for themselves what intimacy means. "It's a fluid thing that ebbs and flows," she adds, "but it doesn't have to be all or nothing."
Particular Issues When Dementia Is Involved
When one partner is suffering from cognitive impairment, sexuality can continue to serve as an important nonverbal form of communication, says Marc E. Agronin, a geriatric psychiatrist in Miami and author of The Dementia Caregiver: A Guide to Caring for Someone With Alzheimer's Disease and Other Neurocognitive Disorders.
But Alzheimer's and other forms of dementia also come with a number of dilemmas for the caregiving partner, especially when the disease advances.
"A lot of people don't like to think about or imagine this in late life," Agronin adds, "but these issues are common and need to be addressed in an empathic way."
Consent: Is the person able to rationally agree to physical intimacy? Kissing and hugging are less of an issue, but what about sexual intercourse? "For the partner who's not impaired," Agronin says, "it raises ethical issues if the person is unable to initiate or really fully understand and agree to what they're doing." Make certain your loved one has had a comprehensive evaluation with a specialist, he suggests, so you can better understand his or her capabilities.
Sexual dysfunction: Men with Alzheimer's have increased rates of erectile dysfunction and a decrease in general sexual response, says Agronin. Meanwhile, "as a person loses cognitive function they may be less able to know how to perform sexually." Yet sometimes they become more disinhibited sexually as the disease progresses, which can also be upsetting to their partner.
Note that in many cases sexual dysfunction can be treated. "For couples where one person is still at the early stages of dementia, we might address sexual dysfunction as we would with any couple," Agronin says.
Desire: The caregiver may not feel attracted to a loved one who becomes less physically and emotionally responsive. But Agronin tells caregivers to remember the value of nonsexual loving touch. Especially when someone has advanced dementia, the person may not often be handled in very comfortable ways. "They're touched when someone cleans or dresses them," he says, "but it's important they also have physical contact such as holding hands, kissing, hugging — things that feel good and safe for them."