Twenty years ago, when I started dating my husband, I knew that eventually I would be a caregiver. His traumatic brain injury not only hurt his head, but it also compressed his spine resulting in the chronic pain we now deal with. I say “we” deal with it on account that I started helping quickly after we started dating. My assistance began as part of his desire to more independent. I kept track of his meds and the pharmacy instead of his mom, I started going to doctor’s appointments for the same reasons and because the doctors often spoke to me differently. For the doctors that had no respect for either of us, I refused to be spoken down to or allow them to dismiss him. While going to university, I took some psychology classes so I could understand his PTSD better and by the time we were married, I was a full participant in his health care.
To be clear, I have never resented the heart work I do as a caregiver. My husband appreciates the role I have taken and picks up the slack in other areas of our life. I have only to ask and he will do what I need. The problem is me more often. I do not like imposing on people and I feel bad. That constant negotiation is a part of any marriage, the difference is that one of us has pain, all the time. Some days are good, some are bad. His energy and level of pain depend on the weather, how much he slept, how much and what type of activity he has done recently, and if we sacrificed the right number of virgins the fortnight before. It is truly a crapshoot. And that gamble affects everything this family wants to do. Since I am not constantly in pain, a lot of people think I have the easy role in the relationship. Here are some heartbreaking reasons why that is not the case.
I Have to Be Motivated for Both of Us
You know those days where you do not want to get out of bed? Yeah well, he has those every day. So, when I am sick or just having a low day, my get up and go has be enough for both of us. It would be great to stay in bed all the time, but we have a child and jobs and if my husband does not move, he will stop moving. So off to yoga he goes or into the back lane to watch my daughter ride her bike, or I ask him to clean the bathroom, or we take a walk to the park. I make him get going when he is tired, when he is grumpy, when he falls back to sleep despite my best efforts. I make coffee, I talk to him until he responds, and I am cheerful until my face hurts.
I Have to Be Patient
I am many things, but I am not a patient woman. It is something I am working on, after all, you cannot teach a small version of yourself to practice patience if you cannot model it yourself. In the morning, when my husband is not quite awake and he has not loosened up his joints yet, everything takes twice as long as it normally does. This is a problem for me because I was one of those people who was used to being exactly on time. Granted my rear was usually on fire but I always made it. Now, with a child, I am 5-15 minutes late for everything it seems. We actually had a fight a few weeks ago about me rushing my husband to leave. A process that always results in us forgetting something, a terse exchange, and being late anyways. But I admit that I am also creating the problem because I think we are normal. I try very hard to act like nothing has changed. This is a coping mechanism for me, and it is my way of teaching my daughter that normal life has uncomfortable challenges, but we face them calmly and get on with the good stuff. The dilemma for me is to be patient and to give my husband extra time to do what he needs to do.
The other part of my practice to be patient is fibro-fog. Whether it is from pain, medications, lack of quality sleep, or stress, the confusion that sometimes plagues my husband is hard for everyone. I feel so badly for him because I can see him struggling to fight through the fog and yet I am so frustrated when I must repeat myself or explain something again. What adds to my frustration is my own problem which seems to have grown from my own anxiety and migraine headaches – saying the wrong words. When my brain is going faster than my mouth and I am not thinking about what I am saying, I have developed a tick which is saying the wrong words. This is incredibly hard for him as he is always trying to figure out what his stressed-out wife is really saying. I also find this quite embarrassing as I’m quite sure he does with his own fibro-fog. When it comes to communication, we can be quite the pair.
I Have to Be Hopeful
Chronic Pain makes you depressed. Head injuries change the way you think. Sometimes it is very hard to be hopeful. It is hard to see another doctor, it is hard to see another physical therapist, it is hard to read another article on the next best cure or on how the government is now assisting people. It is hard for him to continually get advice from everyone around him. Knowing this pain is never going to get better despite everyone else’s assurances brings you down. It is hard to work with people who tell him he is too young to be in this much pain. This man, this wonderful dreamer, this musician who believes his purpose in life was to be an entertainer and bring joy to people through music finds it hard to be hopeful. To say what he must face is depressing is an understatement. I always find it heartening that to remind himself of his mission in the world, he has Faith Hope Love tattooed around his wrist. But it remains that he falters in his hopefulness.
I am naturally a hopeful person; it is a part of my nature to wake up every day thinking that this might be the big day. (Big day for what I am not quite sure…) So being hopeful is not difficult but being hopeful for both of us is sometimes. There are days when I want someone to wrap their arms around me and tell me that it will all be ok, that we are in this together, and that they believe in me. Most of the time, my husband can, but sadly, when he is down, so am I. Which means when we are down, I have to be hopeful for both of us, which is hard.
I Have to Watch Him Suffer
The most difficult part of being the caregiver is watching my husband suffer with pain and medication side effects, neither of which clears up quickly. I have no magic wand to wave; I cannot make it better. No amount of positive thoughts or good attitude makes the pain go away. I do not blame him for being grumpy, it is not his fault that he is chronically ill, nor is it anyone’s fault that it is not getting better. Our life revolves around it. And if I mention how much I hate his pain, I will hurt him. Because his biggest fear is being a burden, such a burden that I think it is too much. So, I stay silent. It is our unspoken agreement. He tries not to complain, and I try to act like everything is normal. Watching your strong, loving partner suffer, like watching anyone you love suffer is intolerable.
In the end, nothing about chronic pain is easy. The patient and the caregiver suffer in different ways and it is everyone’s job to manage around it as best we can. We are a team, we do not keep score, and we do not compare scars or battles. If I could take his pain I would but for now, the best job I can do as his wife is be positive and supportive while we enjoy our family and our life together.