A stroke changed Kelly Marsh’s life, but it also changed her husband, Brad Marsh’s, identity. He went from thinking of himself as a spouse to thinking of himself as a caregiver while his wife was in the hospital.
Their new book, Love Stroke, tells their story from two points-of-view: patient and caretaker. Today we’ll talk about Brad’s role in this latest installment of our online book club.
Navigating Caregiving Without a Guidebook
Brad married Kelly for better or for worse, and Kelly’s stroke and subsequent aphasia was an unexpected detour in their path. He found himself thrust into a role he didn’t completely understand, and to make matters worse, it came without a guidebook. He writes on page 27:
There are plenty of books and even pamphlets from the hospital discussing the survivors’ likely stages of grief, which include denial, anger, bargaining, and acceptance, but the materials don’t really address the caregivers, who will experience the same emotional stages but have to put their feelings on hold to be their loved ones’ advocates and voices. Understanding and dealing with these emotional changes and losses are just as important as the physical issues that are dealt with in the rehabilitation stage.
In other words, don’t neglect everyone’s emotions as you treat aphasia and the cause of the aphasia. It’s an important lesson Brad learned once he moved into his new role.
Getting Up to Speed
While improvement may be slow-going, caregivers often enter their roles quickly and race toward expert status. Doctors asked Brad to make decisions and serve as Kelly’s advocate despite knowing little about strokes prior to Kelly’s experience. On page 28, he explains,
If I had just been the husband I was only a few days earlier, I might have been counting on the hospital staff or doctors to take the lead on Kelly’s care, but this guy taking charge was Kelly’s new life manager, and he was quickly becoming an expert.
Thinking of yourself as a life manager is closer to the truth when it comes to being a caregiver. You’re not just making sure needs are met. You are coordinating every aspect of their life, starting with their care but also keeping in touch with loved ones, comforting and entertaining the patient, and predicting what needs to happen next.
Not Doing Anything Is Doing Something
Brad quickly learned that “not doing anything” is sometimes doing something when it comes to caregiving. There is a lot of waiting built into the caregiver role. Not actively doing something to create change is a hard concept for a lot of caregivers to accept. On page 30, Brad talks about waiting for his wife’s seizures to stop while she was in the ICU.
“Keep doing what you’re doing.” But I wasn’t doing anything, and that was what was killing me. I was helpless; we were all helpless. I had never been in a situation I could not control or at least influence. There was truly nothing to do but wait, hope, and have faith.
Sitting back and understanding there is nothing you can do to speed along recovery is one of the most difficult but important lessons learned from being a caregiver. If you’re accustomed to making things happen, it can be incredibly frustrating to sit still and wait for something to happen. But patience is part of the job.
We’d love to hear about your caregiving experience. What lessons have you learned along the way?
Join this online book club! Purchase copies of Love Stroke at any online book retailer including Amazon.
Image: Yann Cœuru via Flickr via Creative Commons license