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The Caregiver's Challenge of Intimacy

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We talk about so many aspects of caregiving -- the importance of staying healthy, the risks of feeling overwhelmed, the need for regular breaks and ways to connect with others in your situation. Caring for a spouse has a particular set of issues -- changes in the relationship with your life partner, financial and insurance issues and worries about what the future will bring. But one thing that is rarely talked about is maintaining an intimate and sexual relationship with a spouse for whom you're caring.

Andrew,* a caregiver for his wife of 40 years, joined the Visiting Nurse Service of New York caregiver support program in 2012. He was a dedicated and sensitive caregiver to his wife, Jane, who had advancing arthritis and a heart condition. Andrew was someone who knew how to get help. He was able to identify resources for himself and his wife, enlist support from family members and in general maintain his own sanity while caring for the day-to-day needs of his wife. But one thing eluded him was how to proceed with an intimate and sexual relationship with his wife when the roles they'd held for so long had changed so much.

"My wife and I have always been close, emotionally and physically, but I was spending so much time trying to meet her daily needs, that I didn't think of myself as a romantic partner anymore. And she was starting to see me differently as well." The irony was that as Jane became increasingly dependent on Andrew, they started to feel less close and less intimate. "And it wasn't just our sexual relationship that was suffering. All of our physical contact became performing chores -- grooming, toileting, helping her move around -- and as a result there was little left for hugging, hand-holding and sitting close together like we used to."

The reduction of intimacy and a sexual relationship is a major part of the grief and sense of loss that caregivers experience when they are providing necessary care to a spouse. If a caregiver is exhausted and overburdened, it's hard to feel sexually attractive. Caregiving changes roles and expectations and the emotional attachment that was once the catalyst for intimacy and sex may suffer.

Unfortunately, losing the intimate aspect of a relationship can sadden both the caregiver and his or her spouse. We all crave closeness, and we crave it especially during periods of duress -- such as when we are unsure of the future, or scared of losing our independence. Physical intimacy is a way for a couple to affirm their feelings, gird for an uncertain future and enjoy the time they have together.

For couples who can maintain a sexual relationship, it is fortunate that this ultimate expression of togetherness still exists. But certain illnesses and medications can affect a person's sexual functioning, having a negative impact on physical closeness. Moreover, a caregiver may worry that someone with psychological conditions such as dementia cannot properly consent to a sexual relationship and he or she may fear taking advantage.

Andrew, who in other ways was handling his caregiving responsibilities quite well, began to really struggle with feeling alone and separate from his wife. He wanted to reestablish that connection with Jane, but didn't know how to broach the subject, or if it was okay for him to broach it at all. "We had a wonderful team of professionals involved in Jane's care. They asked about my health and how I was managing, but I felt embarrassed to bring this topic up." Andrew did eventually mention it to their physical therapist and brainstorming ways to rekindle this side of his relationship with Jane gave him hope.

Andrew, like many couples in his situation, had to modify his expectations and call on the patience and open communication he and Jane used in the early days of their courtship. But Andrew found just talking about his need for closeness started paving the way for increased intimacy with his wife.

Many couples in the throes of caregiving find great solace in tender gestures, such as kissing, hand-holding, hugging and looking into each other's eyes. Emotional support can be further extended simply by being polite and sensitive to each other's needs and talking about things other than caregiving.

So what are some other ways for a caregiver to increase their physical and emotional intimacy with a spouse?

  • If your spouse can go out, an old-fashioned date may be the best medicine. Go to a show, a favorite restaurant or your local watering hole to revive memories of past dates.
  • If your spouse cannot leave the house, bring in a friend or professional to care for them so you can get a break. Use that time to improve how YOU feel, such as by going to the gym, taking a bath or engaging in a hobby.
  • Or use this time away to do something for your loved one: buy their favorite dessert, borrow a book for them from the library, rent a movie you know they'll like, or one they've seen before and you think they'd like to see again. Simple gestures like this will foster positive feelings and a little romance as well.
  • Simple touch can be very intimate. Try hugging, holding hands, giving back rubs or just making eye contact and smiling. Sometimes we're so busy we don't do even these simple things.
  • Connect in non-physical ways -- sing or listen to songs you both love, look at old pictures, or watch a comedy show on TV. Anything that gets a positive reaction and reminds the two of you of the fun you used to have together.
  • Don't succumb to pressure that your intimate life should be anything other than what you both want. Know that there are myriad ways couples share closeness and that your goal is to find what works best for you and your spouse in your individual situation.

*Name changed to protect privacy

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