Love Stroke: Becoming a Caregiver

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.

caregiver

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

Comments

2 Comments

  • Rahid
    April 21, 2017 at 11:16 am

    hi very good article.
    thanks for sharing keep up the good work.

  • Kathy
    April 27, 2017 at 11:31 am

    I share Brad’s frustration. My spouse has Primary Progressive Aphasia caused by a head injury decades ago. I was shocked when PPA started to manifest itself and even more shocked to find there is little information about this type of aphasia. I also find it frustrating that friends, relatives and even medical workers are clueless about how this is affecting me, the caregiver. People seem oblivious to amount of work it takes just to read everything my husband used to read and handle all the daily items requiring reading from running the washing machine to online banking. Then there are those who think is totally out of it intellectually, which he is not. I even had one relative recommend putting him in a nursing home! And a social worker told me not to let him have knives as he may harm me or even kill me. Oh my God. We are not anywhere near this at the time. What I’ve learned is to rely on me and a small circle of supporters who understand and have taken the time to listen to me and read about PPA.

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