Intimacy-let's get it out in the open.

INTIMACY. What crossed your mind when you read that word? Did you instantly think of intimacy in terms of sex? Did it make you uncomfortable? Is it because ever since your spouse was injured everything has changed? Although many caregivers talk about every topic under the sun in person & on Facebook, it seems that no one wants to bring up this touchy subject (excuse the pun). I hope you'll keep reading & realize that you're not alone in dealing with this uncomfortable topic.

What does intimacy look like to you? For me, it encompasses more than just the sexual act. It means sharing my emotions openly with my spouse, not fearing judgement & also allowing myself to be vulnerable. For others it may mean something completely different, because it depends on your circumstances. A caregiver friend of mine, whose husband has a TBI, once said that intimacy for her is sharing a cup of coffee at the kitchen table in the morning & having a clear (lucid) conversation with her husband. In other words, it depends on your specific circumstances and the type of injury your spouse sustained.

I wanted a varied perspective from caregivers whose husband's have different injuries than my own so I posted a question about intimacy to a caregiver group. The responses opened my eyes to some commonalities as well as differences regarding intimacy after injury. My husband is paralyzed & has limited mobility from the waist down. Figuring out how to be intimate after his injury was an exercise in frustration, humility and patience. It felt awkward to hug him in his wheelchair from a leaning over position. It was the same with kissing or holding hands while walking/rolling, because he needs both hands to push the wheelchair forward. It was extremely difficult to get past "how things used to be" and getting comfortable with one another again didn't happen overnight. One commonality among caregivers is the feeling of being more like a friend/nurse versus a spouse/lover. This is partly due to being together all day, which takes away the "distance makes the heart grow fonder" theory. That in conjunction with taking care of your spouse's personal needs equals a feeling of parenting versus wife. The following are caregiver responses which I edited for length & privacy:

* Intimacy has greatly changed, because his TBI tends to make him more affectionate or he plain ignores me. It depends on his pain & stress level that day. It takes it's toll on us, but we have managed to not let it break us.

* Due to a blast injury that damaged that whole area it's very painful for him to have intercourse. We're very affectionate holding hands, kissing & foreplay, but the actual act we don't do. He hates the fact that he isn't the man he used to be in the bedroom & tries to make up for it.

* Intimacy for us is different than our friends. If you saw my husband & I walking down the street you would think we were friends, because we never touch or kiss in public. He's too 'on guard'  for us to have those moments. Our intimate moments happen at home on good days. On bad days intimacy disappears.

* He has a flat affect due to his brain injury & can't form his own opinion so he's like a shell of a person. He has lack of memory so he doesn't truly understand that I'm his wife.

*Newlyweds probably dream of it, but an extended arrangement takes its toll on intimacy. My husband has severe PTSD & there is so much together time that it makes it difficult to transition into intimate time. Especially at the end of the day when he has played games all day & I have worked my tail off all day. It's difficult to feel sexually attracted to a man that behaves like a boy.

*My husband's has a TBI and there's no emotion or too much emotion when it comes to intimacy, but also the forgetting part is so hard! He does love me & adore me, he lives to make me happy...but he forgets & is unaware that he doesn't do anything to show me.

*He has ED (erectile dysfunction) and his "part"  has its own agenda. He doesn't feel attracted to me or any beautiful woman, because whatever part of him that is supposed to be attracted just doesn't work anymore. So that's why he doesn't initiate anything: not love, not closeness, not sex. It's a very lonely experience.

I hope that one or more of these responses resonated with you. As caregivers, we need to talk about these difficult emotions with others that "get it" and people we trust. I believe that communication leads to healing. It's easier to suppress our feelings and fears, but it isn't the healthiest option. If you're dealing with a recent injury, please know that there is hope & that intimacy isn't just about the sexual act. You have to decide for yourself what intimacy looks like for your unique situation. So take that time to redefine it and know that it may involve lowering your expectations.

P.S. A special thank you to the ladies that took a leap of courage to share their personal scenarios. It opened my eyes and I hope it did your as well.

For an insightful video from Marshele Waddell Carter on this topic go to:

http://www.cbsnews.com/8301-505263_162-57558709/intimacy-lost-veteran-and-his-wife-speak-out-on-hidden-toll-of-war/