As the wife of a 100% disabled veteran with PTSD, TBI, and other injuries, I would like to take a moment to explain to you what it takes to live my life. Sometimes you feel the need to lecture me about the things my husband should be doing, about things that I should be doing for him, and it leaves me quite defeated. Somehow, though, I have to believe that if you truly understood what a day in our life requires that you'd cut me some slack.
I start every morning already wishing I could be back in bed. Most nights never include solid sleep as I have become the world's lightest sleeper. There are two reasons for this, (1) my husband spends many nights with seemingly endless nightmares and if touched during those dreams can react violently, and (2) I have a five year old who loves to wake up in the middle of the night and come for a cuddle. The two don't mix... matter of fact the scenario terrifies me. So, I cat nap... all night... most nights.
As I begin to negotiate the morning, I sort of look forward to and dread at the same time waking my husband. In those first few seconds the day is determined. If he wakes with a growl, bleary eyed, and confused, the day will be spent placating and walking on egg shells, with the full knowledge that there's really no way to stem the roaring tide. Unfortunately, these days outweigh the other days... the days where he wakes with a joke and a smirk... the days where there's a chance for at least a few hours of a somewhat normal life, a life where I'm not watching every second for the next thing that could set off a PTSD/TBI induced explosion.
Then we move on to the day. On bad days, the day consists of endless hours that run together, tense muscles, constant worry, and trying to circumvent any possible issue. They're days where every word has to be carefully thought out and measured before it crosses my lips... days where I'm annoyed at anything and everything that adds to the raging fire within my husband.
Even good days, though, have their challenges. Even on a "good PTSD day", TBI is still hanging around. My dear husband, once very quick at many things, now often struggles to remember simple things. Not only is it incredibly frustrating for him, but it's a constant blow to his self esteem. So, I'm the world's most underpaid and overworked cheerleader. I'm also an alarm clock, a notepad, a calendar, an address book, and a GPS. And I serve as a translator, a liaison, and a broker of peace between him and the world (and often, sadly, it's family members that make me work the hardest in that last role).
By the time night finally falls, a moment I've been waiting for since I woke, I'm too tired to actually sleep. Besides, who can sleep in a house where someone is patrolling and checking and roaming for part of the night and then tossing and turning with nightmares the other part.
So, then before I know it, the sun is up again. It's there, taunting me, telling me I must start another endless day... a day with a wounded hero whom I love... a day filled with uncertainty... a day that's never predictable but somehow feels like it's happening over and over again.
So, Doc, my advice is this... before you start lecturing me on all the things I should be doing, pat me on the back for the mountain climbing I'm already doing every day. Recognize that I am sticking it out, serving as a caretaker, fighting with everything I have to improve my husband's quality of life and that of our family. Heck, just for grins, you might even tell me I'm doing a good job... because, until you're living my life and doing it better than I am, you don't get a say.
Feel free to pass this along to your colleagues. Many hardworking, under appreciated, holding-on-by-the-skin-of-their-teeth, caretakers could use a little more understanding.
The 24x7 Caretaker of My Hero