Ask Joan: Lonely Caregiver

I am 73 and my husband is 84, married 37 years.  We always had a lively, robust sex life. We both freely initiated sex and really enjoyed each other’s bodies. We often spiced it up with weekend getaways. That’s over now.

My husband was diagnosed with dementia in February of last year. This year, he contracted Covid, pneumonia, sepsis, brain bleed, and urinary tract infections. These left him bed bound, confused, and delusional.

I am my husband’s full-time caregiver. I bathe, dress, feed him, and administer his medications. Our children step in to give me time outside the house. He gets occupational therapy and physical therapy. My hope is that he will relearn to feed himself and possibly transfer to his wheelchair.

Missing the closeness

I sit by my husband’s bed, hold his hand, and initiate kisses. He kisses me back. I tell him how much I love him, and he tells me he loves me. He responds to direct questions but cannot hold a conversation. His speech is usually garbled and unintelligible. Occasionally, he’s completely present and says something special. He said recently, “We will get through this.” Then he slipped back into silence.

I am lonely.  I miss my husband’s touch, his embrace. I miss our intimacy.  I miss dancing with him. I miss sleeping in the same bed with him.

I haven’t masturbated since my twenties. Is masturbation all that is left for me?  Where do I put my feelings of longing, my sexual desires and needs?  I shove them down because I don’t know what to do with them. I feel guilty for having these feelings.

— So Lonely

Joan responds:

Thank you for sharing your story. It moved me greatly, and I’m sure readers will feel the same. I can only imagine your despair, becoming the caregiver of the man who was your husband and lover. It‘s clear that your love is still strong. Yet what do you do with your feelings of loneliness and your need for sex and intimacy?

Handling the Guilt

You say you feel guilty. It’s very common for people to feel guilty about their own needs after their spouse dies or becomes incapable of being their intimate partner. They fear that they’re betraying their spouse by having those feelings. I encourage you to look at it this way instead:

Suppose the roles were reversed. Suppose you were the incapacitated spouse suffering many medical issues and unable to be a partner to your loved one. In moments of clarity, would you want your husband — who was giving his all to caring for you — to be lonely and bereft every day? Would you want him to be deprived of comfort, of relief, of human touch if he could find it? If you truly love each other, wouldn’t you want to give your blessing to him finding a way to fill his needs? Wouldn’t your husband feel the same about you? I wish couples would have this conversation while it’s still possible!

Your feelings are natural, and many caregivers report the same. It’s called “anticipatory sexual bereavement.” I wrote this in Sex After Grief: Navigating Your Sexuality After Losing Your Beloved:

“Grief starts long before a beloved dies when a long, chronic illness or untreatable, progressive condition thrusts the healthy partner into the role of caregiver. Sex becomes impossible, either due to the illness or because of the shift from lover or spouse to a patient/ caregiver relationship. Caregivers may experience ‘anticipatory sexual bereavement’ and start grieving for intimacy and sexual connection while the ill partner still lives. Caregivers often feel guilty about these feelings.”

Consider this

The loneliness is intensified because the caregiver usually doesn’t share these feelings with friends or family for fear of being judged and shamed. But please consider this:

1. Caring for yourself is an important component of caring for someone else;
2. Sexual longing and need are a natural part of being human. Your feelings do not in any way lessen your love for your husband;
3. You deserve nurturing and sexual pleasure and release.

How will sex work for you now? Solo only? A friend with benefits? That’s a personal decision. I encourage you to begin self-pleasuring, exploring what your body needs and what will relieve emotional tension. There’s a world of vibrators out there to make it easier. (Read my vibrator reviews from a senior perspective.) Look into support groups for partners of people with dementia. Add social dancing to your outings when your children fill in for caregiving — line dancing is terrific to recapture your joy of dance without needing a partner, and classes happen daytime as well as evenings.

I hope you’ll read Sex After Grief. Although it was written for people whose partners have died, you’ll find much that relates to your current challenges. You’ll see that you’re not alone, and I hope you’ll begin to accept your feelings, overcome your guilt, and decide what form of sexual expression you’re ready for. If you decide to invite a new person into your bed, you’ll learn how to communicate your needs, boundaries, and vulnerability.

I know this is a hard time for you. I send my compassion.

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Joan Price has been Senior Planet’s “Sex at Our Age” columnist since 2014. She is the author of four self-help books about senior sex, including her award winners: “Naked at Our Age: Talking Out Loud about Senior Sex” and the newly updated and expanded “Sex after Grief: Navigating Your Sexuality after Losing Your Beloved.” Visit Joan’s website and blog for senior sex news, views, tips, and sex toy reviews from a senior perspective. Subscribe to Joan’s free, monthly newsletter.