What is “Normal” for Family Caregivers after Brain Injury?

Brain Injury Blog

What is “Normal” for Family Caregivers after Brain Injury?

by Marilyn Lash, MSW

Being a caregiver  can be both an incredibly stressful and rewarding job. But when a family member – a spouse, son or daughter, parent or sibling – becomes the primary caregiver, there is an emotional component that is added to the physical aspect of giving care. No matter how much we try to be objective or distance ourselves to get the job done, caring for a parent, spouse, child or siblings stirs up many mixed emotions.

Many of us expect and willingly accept being caregivers when a family member is first injured or ill. As the person leaves the hospital or rehabilitation program, we are prepared to give additional help or supervision when our family member first comes home. But we expect it will be temporary – until the person recovers or regains strength – just as has happened in the past.

But what happens when caregiving is not temporary and becomes a permanent role and responsibility for you? What does being a caregiver mean for you as an individual, your lifestyle, and your relationship with the person you are caring for? What about all the other aspects of your life – your job, friends, finances, household, and social life? Caregiving can affect every one of them, and more.

Janet Cromer knows this all too well as she cared for her husband for many years after his brain injury. She writes about finding a “new normal” as a caregiver in her tip card titled New Normal for Caregivers after Brain Injury.  She admits that there is no single definition of “New Normal” that fits every family, since each brain injury and family’s circumstances are unique. With the survivor’s continuing progress and independence, the caregiver’s role continually changes. Over time, the survivor’s cognitive and physical rehabilitation becomes part of the daily routine as the caregiving family works out new roles and better routines for getting through the day, and then the next week, month, and year. While some new caregiving responsibilities may feel daunting at first, most family caregivers gradually become more confident in their new roles and responsibilities – whether it’s paying the bills or helping with range of motion exercises.

The monumental change in reaching this new normal is when family caregivers start looking toward the future, rather than primarily longing for the past. Janet Cromer describes this as an attitude of active acceptance. This doesn’t mean passive resignation or giving up hope. Rather, it means being realistic about changes in the survivor’s personality, emotions, behavior, and thinking. Remembering and treasuring the past is part of grieving, but she suggests that the next step is moving forward by committing your energy to the most important goals for you and your family.

December 23, 2011

3 responses to “What is “Normal” for Family Caregivers after Brain Injury?”

  1. Dear Barbara,
    Thank you so much for your thoughtful comment and the courage you have shown to cope with the many changes and to still consider the possibility of the next step forward, even when it seems so hard. I don’t think anyone can really appreciate what it means to be a caregiver until you are in that role and facing the struggles and rewards (even when small) each day. I am always think of a marriage as a seesaw where the responsibilities and burdens are rarely evenly balanced between partners, but rather shift back and forth. But the imbalance can be even greater when a spouse has a brain injury – and in your situation both of you. While your husband is no longer alive, I hope you have memories to sustain you through the days and years and that, most importantly, you take care of yourself.

  2. Barbara Castlow says:

    Both my husband and I fall into the description “survivors of traumatic brain injury.” My TBI occurred twelve years prior to that of my husband. Of course, every brain injury is different, as are the long lasting results. We began our relationship as equals–as peers. Because our limitations were different, we were a good team: He did what I was not able to manage and vice versa.
    Prior to his brain injury my husband had liking for having a few beers and going out to party. The brain injury didn’t change that. Though he was told brain injuries and alcohol do not mix, he insisted on drinking.

    Long story short, my role as companion and mate, changed to caregiver. I saw his gradual decline to the end of his life. At any rate _the new normal_ consisted of another role change. The important thing is taking it day by day, lean on friends and ask for help. There are low points, but by moving forward each day (even though it doesn’t feel like it), the next step of one’s life is taken.

  3. Linda W. Peterson says:

    This is a wonderful post and the last paragraph is new to me and significant. Thanks a lot. Linda

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