Dear Laird: As I lie in bed at night, I feel incredibly alone. My husband has dementia and doesn’t kiss me or even recognize me sometimes. I cry myself to sleep, missing the connection we used to have. How can I cope? Signed, Lonely Lover

Love is often the primary reason for caring for a spouse, so the loss of intimacy can be devastating. Losing intimacy feels like losing the relationship itself. His voice, his smell, his laugh, his touch—these mean everything.

While sex is a part of intimacy, intimacy also means closeness—something all mammals crave. When intimacy is threatened, diminished or absent, we feel the hurt deeply. 

In a marriage or other committed relationship, intimacy keeps partners close. For couples navigating this disease, the loss of intimacy is huge. I’m so sorry that his disease has taken this connection away from you.

Even after death, many spousal caregivers keep their loved one’s clothes because seeing, touching and smelling their clothing creates a feeling of closeness and intimacy. These physical items represent the person. Over time, memories become central, and small physical things—pictures, a wedding ring, mementos—trigger those memories. A fragrance or the color of a sunset can call up an intimate memory.

The loss of intimacy should be understood first as a result of the disease. Your husband is not doing this to you, and it is not a betrayal. Likewise, you have not done anything to cause it. The disease has made him unable to respond and see you as you are. Attempts to encourage or stimulate intimacy are likely to frustrate you both.

Fortunately, there are many ways to be intimate, and his disease does not erase them all at once. 

Focus on what remains. Try touch, sharing meals or giving backrubs.

I remember when my father was in the ICU after a palliative procedure, a nurse asked if I would like to give him a sponge bath. Holding him, caressing him and smelling him was an intimate experience.

Independent of him, find some intimacy of your own. Please yourself, embrace friends, give hugs or adopt a pet. Seek out relationships that are pleasant and intimate—even sexual if that feels right for you.

I can’t imagine the writer of the marriage vows “'til death do us part” had any idea about what it means to be a caregiver.