Since I’ve Become My Wife’s Caregiver, the Romance Is Gone

Caregiving often leads to compassion fatigue, which can dull or numb emotional connections, adds Fariello. And you may be grieving even if you don’t fully realize it; Fariello describes dementia as a “long goodbye,” and you’re losing parts of your wife bit by bit, resulting in a sense of loss that can be draining.

Ways to maintain intimacy. Even without a romantic connection, some couples try to express intimacy in ways that are more emotional or symbolic, Kristinsson says. As examples, try sharing memories from the past and looking at family photos or videos.

She says couples might also consider engaging in “gentle physical intimacy” like hugging, hand-holding, cuddling, brushing each other’s hair, slow dancing, gentle massage or rubbing each other’s hands.

Developing an attraction to someone else. Price says it’s not unusual for partners who are caregivers to become attracted to someone else — and that you shouldn’t feel guilty about it if you do. “It’s normal and part of being human,” she says.

Ideally, she adds, couples who are still able would have a conversation that goes something like this: “If I predecease you or become incapacitated, I give you my blessing to find joy with someone else.” As Price frames it, “That would relieve so much guilt that I see in survivors and caregivers.”

If your wife signals a romantic interest … If your partner reaches out and you are not interested, Fariello advises handling it as you would with anyone whose advances aren’t welcome: distract them, do something else, tell them no.

Price wonders: “Is there a way you can pleasure her or let her pleasure you in a way that feels OK to you?” Maybe she wants to be touched, cuddled, her genitals rubbed. “Is there a way you can make that happen?”

To that end, an In the Mood column from April discusses when it’s OK and not OK to be intimate with a partner who has cognitive decline.

Either way, Price says not to feel guilty if it does or doesn’t work for you. “This is new territory and you are feeling your way. Even when you’ve found your way, it’s going to change again.”

Join a caregivers’ support group. Kristinsson, who runs a support group for people whose partners have Alzheimer’s, says joining a group can help you feel less isolated and normalize many of the feelings people have as caregivers: resentment, burnout, anger, distress, guilt.

“We love to tell caregivers to look after yourselves, but many feel guilty when they take time away from their partner,” she says. “A group is great for offering strategies and tools to do that.”

Plus, to be with people who are going through the same thing is really validating and helpful, says Price, adding, “You may find friendships in that group [who can support you in ways] that your existing friends can’t.”

Consider seeing a therapist.  You’ve got a lot to navigate, and certified sex therapist Sari Cooper says a therapist can help you mourn “the reality of your changed feelings.”

Cooper, director of Center for Love and Sex in New York City, says feelings that you might explore with a therapist include anxiety, sadness, guilt for being healthy and guilt for not wanting to have sex with your wife in the way you have in the past.

Cooper says a therapist can also help you find ways to express your loving feelings in ways that are less sexual but still allow for each of you to give and receive — like hugs and massage — so that some physical touch is maintained.

Nurture yourself. Make time for yourself, Price urges. Take breaks, do things that make you feel better, see friends, exercise and self-pleasure.

As Fariello parses it: “Put your own oxygen mask on first. To do a good job of taking care of others, make sure your tank is mostly full.”

One last piece of advice: Give yourself some grace.

“This is incredibly hard work,” Fariello continues. “You are going to be angry at your partner at times; you will feel distant and may act in ways that are cold and unloving. You’re not going to be ‘on’ all the time.”