It always looks darkest just before it gets totally black. ~Charlie Brown
Take a deep cleansing breath. . . slowly exhale while counting to five. . . here goes nothing.
I have been thinking since the CBS piece was released that if we are truly going to give a “face” and “voice” to caregiver mental health that perhaps we need to start openly sharing what it looks like inside our heads and bodies. Bring a flashlight, it’s dark in there.
Why not hang my mental health issues on the clothesline for all to see? It’s time to start addressing what I see in me, my children, and the community of caregivers I serve. If we’re going to give our fellow caregivers a voice, we have to first be that voice in the world, and until we are ready to do so, we have no business talking about it. Please realize as you read this that I am baring heart and soul not only to the reading audience, but also to my children, our families and friends, my spouse. . . who knows I’m crazy but does not always know the depths.
I have been medicated for depression and anxiety for years. Long before my husband was injured or I became his caregiver. I’m not new to this, but never has it been as bad as in the past few years. Perhaps you’ve seen the Cymbalta commercial that says, “depression hurts.” Boy, does it ever.
If not for the external pressure to appear in the world every day, I might just stay in bed. Ok, that’s not entirely true. I always get out of bed. In fact, I haven’t had a good night’s sleep in years. Each night we battle Sean’s nightmares, sweats, pain, insomnia, snoring, and constant kicking due to Restless Leg Syndrome. Add to that my own fatigue, insomnia, and crazy dreams. A few years ago my doctor prescribed several different sleep medications. While most of them helped me fall asleep, none of them could keep me asleep. A very low dose of Seroquel was the only medication that would help me sleep through the night, but I spent every day like a zombie and we had issues with a child sneaking out at night because I couldn’t hear her. Plus, when Sean needed me or was having a nightmare I was unable to help him. I try to nap, but usually something disrupts me or I don’t feel like I have gotten enough rest when I wake. I normally sleep for two hours at a time, some nights I get up after the first two hours because there is no falling back to sleep.
I have vivid claustrophobic dreams where I am climbing stairs or ladders and the walls start to close in on me, or I need to climb through incredibly small openings and mazes. The dreams started after several traumatic incidents occurred during Junior High. They are triggered by stress in my life and I wake up in a panic. If I feel trapped or cornered, if I am in a small space, or if Sean tries to hug me at the wrong time, it sets off feelings of panic and need to escape NOW.
There are days when I cry uncontrollably for no apparent reason. No matter what I do, my emotions come spilling out and make a huge mess. I am much better at repressing my feelings. Avoiding. Pretending. Eating my feelings. Just sit and not do.
In contrast, I have developed several OCD tendencies and my mind will not rest while that piece of fuzz is on the floor, the glass is on the counter, or the sink needs to be wiped out. I clean. Then I clean. And I clean up after that. I make lists. I check them off. I make more lists. I make lists that include the words, “check other to do lists.” I cannot stop my brain from rehashing what I need to do. I vacuum and think about when I will need to do it again. I go into the bathroom to make sure it is still clean. Toothpaste in the sink? My heart races and I start to sweat. I *just* cleaned that sink! I know it’s irrational. I can’t stop it.
Driving has become horribly difficult for me. My driving anxiety started while Sean was in Iraq after I encountered several mishaps on the road and drove through lots of nasty weather. In the years following my anxiety has gotten worse. The day before we must be on the road I start to think of excuses not to go. I wish for something else to come up. I secretly hope one of us gets sick. Driving causes me not only stress and tension, but results in anxious itches, headaches, and extremely heightened sensory sensitivity. I can feel the seams in my clothes. A lose v-neck shirt makes me feel like I’m choking. My toes go numb. I get a twitch in my back. My heart races and my mind rushes. I fight the urge to throw up. When we arrive at our destination I am completely exhausted and my body aches.
While waiting to board a plane this summer, my body had had enough. People, noise, exhaustion, sensory overload. As we boarded the plane and sat in the very front row, I broke down. I started crying uncontrollably. Everyone could see me. My daughter tried to calm me, but her touch only made me bristle. I couldn’t get to my anxiety meds. I was shaking and sweating and my skin was on fire. I felt trapped and frightfully exposed as every person boarding that plane walked by. I wanted off the plane. Just off. I ran through scenarios in which they would have to let me out. Sean finally asked the flight attendant for a tissue and she returned with a stack of rough airline napkins. Upon reaching our destination we had to get into the car and make a six hour drive home. I threw up on the curb before getting into the car.
A trip to buy groceries now brings me to the brink of panic. It starts in the parking lot. I am instantly crabby when searching for a parking space. I curse at people in my way or holding up the line. Once inside, I start to sweat. My chest gets “fluttery” and I feel lightheaded. I snap at those with me. I want out. One day there was a random beeping noise coming from the electronics department. It persisted throughout my shopping and seemed to get louder. By the time I reached the check-out lane I was feeling highly agitated. There was person in front of me and suddenly a lady came up right behind me. She was very close and I was trapped. I have never had that feeling before. I felt like I would not make it out of the store. I could not use my self-talk to logically explain to my body that this was a physical reaction to a stressful situation. My mind was racing and it felt as if my heart would come out of my chest. I kept looking around for a way out of that line. It did not occur to me to ask her to move or let me out of the lane. My breathing was very heavy and I left the store breathless and uncertain exactly what had happened. I talked on the phone with a friend until I was calm enough to drive home.
I have grown weary of my waitress face. That fake smile, pretending that everything is fine. Trying to radiate the joy and strength that I do not feel while wanting to vomit, cry, or simply crumple to the ground. When faced with social situations I go into teacher mode. I smile, talk, and meet all the required social norms. When the pressure is too great, I retreat into my phone so I can tune out my surroundings. Although we had many exciting travel opportunities this year where we could appear relaxed, the reality is the majority of those interactions were painful. I made sure we took the appropriate smiling pictures so we can remember the happy times from the past year. Inside I never felt fully relaxed or happy. It takes constant energy to appear normal.
My online support groups have made it easy to hide. I don’t have to be real. It’s quite easy to “smile,” and “heart,” everything. While I care deeply about my fellow caregivers, it’s all too easy to send (((hugs))) and pretend that my life is fine. Fine, fine, fine. There are no crazy irrationalities, paranoia, guilt, or anxiety. I can appear normal, while inside I am frantically waving my hand and screaming. Please hear me.
My doctor and I have discussed the physical manifestations of my depression, anxiety, and stress. Besides the dreams and panic attacks, I have memory issues, difficulty concentrating, nervous twitches in my eyelid and back, physical pain in my joints, migraine headaches, GERD, and most recently a fun batch of cold sores. She told me to reduce the amount of stress in my life. The problem is, I am now having problems even when things around me are calm and secure.
Since I am a certified caregiver through the VA’s Caregiver Program I qualify for mental health services. Last month I started with a new therapist. We talked about a variety of coping skills including mindfulness, deep breathing, and visualization. It was hard not to roll my eyes. In the past seven years every member of our family has been in therapy at some point. We have literally been there, done that with every technique under the sun. However, I want help, so I agreed to keep an open mind and see if I can learn from her. I want an instruction manual. I want a road map. What I get is 50 minutes to get worked up and emotional and then be sent on my merry way for a month to cope on my own. It does not feel like the help I need.
As I sat crying through this month’s session we talked about the two issues she feels are causing me major pain. The past seven years have held overwhelming losses: the rejection by “friends,” our careers and associated relationships, our relationship (as it was), children (grown up), sense of community, and my father’s death. I am also not finding fulfillment in my life.
(The following is in no way intended as an insult to Sean and as always he is fully aware of what I am writing.)
Every aspect of my current life is directly related to Sean. I left my career to become his caregiver. Without a job or children at home it has become how I identify myself. “What do you do?” “I stay home with my husband as his caregiver.” To combat that loss of myself I signed up as a volunteer with Family Of a Vet. Even my volunteer work revolves around being a caregiver. My social outlets are with members of the military and their families. We define ourselves by our occupations. Without one, who am I?
I am tired of being a Wounded Warrior Wife or WWW. I am tired of being a caregiver. I am tired of it infiltrating every corner of my life.
My mental health issues are invisible wounds of war, too. I’m paying in a different way for his service. It is taking a toll on my physical, mental, and spiritual health as well as his. It’s impossible to stick a hand up and say, “I need.” But I do need, and even though he needs more, I need, too.