“In sickness and in sickness.” A quote from Jonathan Safran Foer’s newest novel Here I Am, and one that couldn’t be truer. It’s easy to care when it’s in health, but it’s in sickness and in sickness where those vows are strained, pushed, and at times, ultimately broken. Caregivers often are the unnoticed of our society. They accept their roles caring for those they love so automatically that even service providers at times don’t think to address the new role. Since high school I’ve known I wanted to work with military and veterans and so I spent my entire academic, and up until recent, my professional career serving these men and women, and their families. And their families. As part of that journey, I did an independent study during my Master’s program at Johns Hopkins neurological critical care unit. I spent time there, in the ER, and various other areas of the world-renowned hospital under the tutelage of some remarkable social workers. My original plan was to study Traumatic Brain Injury and Spinal Cord Injuries and the impact on the patient. What I didn’t account for was the evolution to focus on what the caregiver went through for a few reasons. One was because unfortunately, the unit took on some of the most severe cases, and it was rare that I could interact with the patients- though when I did it was tremendous. The second, was because I immediately saw the gap.
We focus all our energy on the advancement of those with TBIs and SCIs, and the actuality is that during this time, it seems that the recovery of those who show improvement is remarkable. Those who wake up usually bounce back in so many areas that caregivers assume that this continues once the patient returns home. The truth is that the patient eventually hits a plateau. And recovery from that point is slow, painful, and at times, non-existent. But because that’s not what we see in an acute setting, it’s not what the focus is. And families are unfortunately not always prepared adequately to understand this. I focus on the families because many times, it’s not the patient who always sees the changes. It’s the spouse, child, parent, etc. who is left to deal with someone who changed in an instant, and isn’t the person they knew before. We educate families on the extent of damage, potential deficits or need for follow up, but we don’t do enough to address not just the physical toll, but the emotional one as well.
“Your loved one might never be the same.”
“But he’s done so well, a week ago, he was in a coma and now he’s sitting up and eating.”
How do you explain that this rapid growth will slow, and that due to the multitudes of variables that go into these injuries or illnesses there is no way for us to know what the extent will be? Prepare for the worst, hope for the best. To do this though, it’s the families who need to be prepared even more than the patient, as it will fall to them to pick up the slack of what was once another’s job, deal with the medical and emotional changes most face when the patient lashes out, or can no longer perform in some way. And we don’t because we like to believe that we will be able to manage just fine, that to show despair is to show weakness. The caregiver’s life changed almost as much as the injured that day, sometimes more. Unlike the patient though, no one expects the caregiver to need more than some instructions and the person home again.
I was fortunate in my career to work for an organization that has a national caregiver support program, because they recognized that caregiver stress leads to caregiver burnout. You remember that reminder everyone gets on the plane about the oxygen masks? It’s the same deal. You can’t care for someone else if you’re not taking care of yourself. What’s more, you can’t possibly do either if you don’t know what you’re up against. It’s not impossible, but it’s difficult, and the better prepared you are, the better both of you will be able to face it together. There might be things that never go back to normal, there might be things that takes months and years to. You might think you can’t possibly get through it, not realizing how far you’ve already come, how far they have because you’re stuck in the day to day and can’t see the path up the mountain you’ve climbed.
We need better standards to address caregivers, both in education and support. We must prepare them as well to what their lives might look at, no matter how difficult it is. And we must be there when they falter because otherwise they often become the ghost behind the one with obvious needs. Bonds can bend, bonds can also break, and what can make the difference is the attitude and the understanding of the individuals entering that new world. Like any trauma, support systems play such a crucial role, but as Wholley (1990) explained, the most common complaint in follow up was the families felt a lack of preparedness to deal with the needs and required more education. Their perception was that the patient would continue a constant rate of recovery.
Social workers then play a vital role in this education even when the doctors don’t. We can steer the conversation in that direction, provide connections for house adaptations, support groups, check ins with both if you see them ongoing. TBIs and SCIs aren’t the end of relationships. They do change them on every level, and all parties must be prepared to meet this face on as they would a loss, because it can be. It’s a loss of what was without knowing what will be. For those out there, do not despair. That person you love is there, it is okay to break down, it is okay to admit this isn’t what you wanted, and most importantly, it is okay to ask for help. But make sure you ask for information every day, at every stage. We should be there with what could be, even if we aren’t sure. We can’t be afraid to admit that. Reach out, say you’re worried, say you need things too. Above all, be you, not just ____’s caregiver again. That’s what they want too.