One Piece at a Time

One Piece at a Time

These days I consider myself more of a wife than a caregiver. And that's a gift for which I give many, many thanks. Caregiving is a strange, beautiful, complex thing, but it's even more complicated when you're in the position of providing care for your partner or spouse.

A lot of dear people have spent a lot of time worrying about my relationship with my husband (including me). After TC sustained his severe brain injury in August 2012, I found new meaning in the word "wife." No longer did I associate this term with the tender, romantic love that often characterizes young marriages. Suddenly the roles of "husband" and "wife" called to mind a sense of grit, loyalty, and staunch determination. After all, there's not a lot of cutesiness associated with cleaning out trach tubes, filling out disability paperwork, and helping your partner transfer from the bed to the wheelchair.  There is, however, a lot of love.

It goes without saying that there's a great deal of pressure on caregivers, among them the pressure to maintain a traditional romantic relationship. At the beginning of our TBI journey, I remember well-meaning friends and family offering to watch Jack so that TC and I could have a "date night." I felt like a terrible person admitting, even to myself, that a "date night" was the last thing that would help me unwind or feel relaxed. After hours and hours at my husband's bedside, followed by hours in the therapy room, rekindling our romance wasn't going to be as simple as putting on a dress and heading to a restaurant. The few times we did attempt a "normal" date, we sat mostly in silence, TC's aphasia still too severe for us to connect through conversation.

I understood people's intentions, however. To preserve any semblance of our romantic life, we would have to try to be those people again. But it was the expectation to try that caused me more anxiety than anything else at the time. I loved my husband, and I wanted to stay. I wanted to help him through his difficult recovery, and I wanted to protect our little family. But after months of shock trying to process the violent crime that caused his injury, along with the gutting and ambiguous sense of mourning I was trying to work through emotionally, was it really fair that I should be expected to make kissy faces at him too?

Sex and romance are not topics many people feel comfortable discussing with caregivers, although I highly doubt it stops curious minds from silent inquiries. And, to be fair, they're still not topics about which I'm ready to pen a tell-all. I will say this, however, to the anxious TBI-affected couple: go easy on yourselves.

Perhaps it's not the norm for couples to stay romantically connected through so much gritty intimacy. Perhaps the normalcy lies in putting the romance on hold for a while, at least until both partners have a chance to breathe again. And perhaps the biggest work upon which any couple will embark during recovery from brain injury is the work of planting new seeds of romance, not simply trying to imitate the same attraction you once held.

All of this takes time and a lot of patience. And I suspect there are few couples able to do it without any outside support or therapy. Timing has been an important factor for TC and me.  We couldn't focus on romance while simultaneously trying to fix every other piece of our lives. Our world is constructed around a very ambitious and deliberate to-do list that only allows us to focus on one life changer at a time. Sometimes I think of it as one of those thousand piece puzzles I used to attempt as a kid. Never would I throw all the pieces in the air and expect them to land perfectly connected. Clearly, the only way to construct something that multi-faceted is to do it one piece at a time. In the same vein, only once the foundation of our lives was intact again, were we able to shift our attention back to our romantic connection.

Learning to have fun again has been another savior of our marriage. Judge as you will, but after three years, I'm ready to admit that there was a period in which I wasn't truly enjoying one-on-one time with my husband. In fact, the experience of spending forced time together was so draining that I remember feeling sad one day just because I missed the sensation of actually missing him. If we couldn't have fun together, how could we ever miss each other's company? Fortunately, time has given us back our sense of humor, which has, in turn, lit a new spark within our relationship. Taking everything so seriously all the time was not only detrimental to our mental health, but to the relationship we needed to rebuild. Little things like board games, bowling, and family dance parties have allowed me to look at my husband with fresh eyes, attracted to his new sense of spontaneity and lack of pretension.

In many types of caregiving relationships, the romance must be put temporarily on pause. When my father fell ill with liver disease, I remember how difficult it was for my mother to access her own vulnerability and affection toward him. There was so much new information to process at the time, so much fear to work through. But it hardly seems fair to ourselves as caregivers to brand our relationships as failures if we can't immediately make them look or feel the way they did prior to caregiving. All of this pressure, all of these self-imposed and societal expectations, only serve to put additional stress on the relationship. These days I refuse to be ashamed that TC and I are not the model couple for brain injury recovery. We've experienced dips and valleys lower than we could have dreamed, but how could we not? And how would it help anyone to pretend that the road to recovery is perfectly smooth? The point is that romance might not have to be put on hold forever and that things can and do get better for partners, one piece at a time.

Comments (6)

My husband and I have just passed our one year anniversary of his severe TBI.  We struggle with the romantic side of our relationship because as Abby said, so much energy is spent dealing with just the day to day issues.  He is so focused on getting through each day and romance just isn't a priority.  That being said, we are both committed to the long haul, and will do whatever it takes to work through each issue as it appears.  I have to have patience and understanding on how hard it is for him, and be willing to give without getting much in the way of return.  I KNOW that he loves me and when he is at his best, he is able to look outside of his own problems to see me and remember his love for me.  He always says that he can handle this as long as I'm by his side, and if that is as romantic as it gets for now, I'm ok with that.  I'm very lucky in that he IS able to communicate with me, and that his aphasia is now at a point where most of what he says makes sense and is coherent.  As he slowly progresses, I see improvements in our relationship as well as all the other areas.  Often our problems are a result of misunderstandings due to communications issues.  He has problems with the language processing part of his brain.  He can speak without a problem, but understanding and expressing himself are bigger issues.  This has caused many misunderstandings because he thinks I've meant something different than what I actually said (similar communication issues often happen with couples without TBI issues as well), or I will misunderstand something he is trying to say because of the words he chooses to use.  Learning all over again a new way to talk/listen to each other is a big challenge when you are dealing with medical issues, work related issues, financial issues.  But as I said, as things improve in one area, eventually they improve in other areas as well.  Patience, the passage of time, committment, and love are the keys.

Tbh I just can't stand the use of "beautiful" to describe this crap of being a caregiver for a spouse... But you made some valid points and this is very well written. Still, this shit will wear you down (and your couple), being on the edge all the time, and in and out of emotional detachment... In 2 days it will be 7 years for me and yes some happiness can be rebuild but be careful. N.

Well spoken Abby...a strange, new world has been plopped on your door...you didn't ask for it but you have embraced it with fervor...as written before on these pages, it gets better. Patients is required as you know. Perspective is your guide and clear is your mission. Just right, just right, just right...it be so!!!

Abby, you have such a beautiful heart. Thank you for sharing this with us. I KNOW that it will benefit many other spouses who are new to the world of TBI, and do not yet have the insight you have. TC is so fortunate to have you, and so are we. Always, always, always cheering you on, along with the others who are in your situation. Thank you for your voice in brain injury awareness. 

Beautifully said.  I have been there and understand completely.  Good luck to both of you.

Beautifully written. Thank you for sharing.