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On Caregiving by Rosemary Rawlins

Guest post by Rosemary Rawlins, Author of Learning by Accident, Caregiving Blogger for BrainLine.org

Editor’s note: This personal story is a part of the Brain Injury op-ed series that Grace Conyers is putting together. Find the index to the stories here. 

Caregivers are life-links for TBI survivors. When someone sustains a moderate – severe traumatic brain injury, the caregiver must step in to help his or her loved one in every way a person can be helped. Enormous patience, compassion, and stamina are required for what I call marathon caregiving.

One thing I believe every caregiver should be told from the first day of injury is, “Your care plays a vital role in your loved one’s recovery. Here’s what you can do….” TBI feels intensely out of control, so it’s empowering to know you can make a difference from day one.

A recent study conducted by Dr. Robin Green (1), Senior Scientist and Neuropsychologist in Toronto, confirms that environmental enrichment impacts outcome.

“Environmental enrichment is any increased physical, social, and cognitive stimulation. This helps because after TBI, “damaged tissue is leaving healthy areas of the brain disconnected and under stimulated. Over time, healthy areas may deteriorate. Environmental enrichment can offset this deterioration. Those who reported greater amounts of environmental enrichment – for example, reading, problem solving exercises, puzzles, physical activity, socializing – at 5 months after their injury showed less shrinkage of the hippocampus (associated with memory functioning) from 5 to 28 months post-injury.”

This is ground–breaking, pop-out-the -streamers news for caregivers! From my own experience, I know this knowledge to be true, and it needs to be spread.

Rosemary and Hugh

My husband, Hugh, sustained a severe TBI in 2002 when a car driving 45-50 mph struck him from behind as he rode his bicycle home from an afternoon workout. Like many other survivors, he had to relearn everything from toileting to reading to walking and speaking. His executive functions were severely impaired. Executive functions include a person’s ability to initiate, plan and organize, and when they are impaired, a person with a TBI will not be able to know what to do next. It won’t occur to him to get up and do anything. There’s no initiation, so the caregiver fills in. “Let’s go for a walk. Time to read. Can I help you get ready for rehab? Here’s lunch.” If the caregiver doesn’t know this, and if they grow angry because the person is different, outcome can suffer. If nothing is said and followed through, nothing will get done and a TBI survivor can sit and sit and sit, deteriorating.

There’s a deeper emotional layer to this in the real world. Here’s what it was like for me. Immediately after Hugh’s traumatic injury, I struggled with shock, grief, and overwhelm. I was elated when he lived, but then came the radical changes in ability and behavior as his deficits revealed themselves. It felt as though my husband was a completely different person, as if he had died in the accident and someone else took over his body. My loss was compounded by guilt for thinking this way, so I didn’t tell anyone about how I felt. As I tried to keep all the pieces of my own life together, (parenting, home, work) I was immersed 24/7 in this TBI world that devoured my heart, mind, and body. All of this happened right at the time when Hugh most needed my stability, help, and understanding.

I’m often asked how I got through it. The honest answer is, I don’t know. I just went day by day. It takes a significant amount of internal fortitude to handle the ever-changing landscape of life after TBI. What helped me most was my support system. Hugh and I have close families and all of our friends offered help. I accepted that help, promising to give back. I prayed and meditated excessively, but it took me too long to seek counseling for myself when I couldn’t sleep, feared everything, and felt jumpy all the time. I wound up with a bad case of shingles a year after the accident and finally sought counseling. I learned that I suffered from ambiguous loss, post-traumatic stress and hypervigilance. I was embarrassed to learn this, since I thought post-traumatic stress only happened to soldiers, but it was the excessive amount of prolonged stress with no time to grieve or calm down that finally resulted in physical symptoms. I’m sure this is common among TBI caregivers, and I wish there was a standard intervention to prepare them for the journey ahead.

Here’s the good news. Hugh did make great strides. Healing is agonizingly slow, but he recovered more fully than anyone predicted. He was able to return to a full-time executive position two years after his injury and has succeeded. He recently completed his MBA in Finance (intense environmental enrichment)! Many of his old personality traits reemerged, but he still has a slightly different personality, so I tell people; “It’s like having an affair without cheating on my husband.” All in all, we came through it, and we’re better in some ways. Our family remains close. We hold a deep reverence for this life we live, we love each other more than ever, and we have a shared purpose: to help other families heal after TBI.

There are now many resources for families and survivors. BrainLine.org and the Brain Injury Association of America (and state affiliates) offer solid information, support groups, and advocacy. There are also a good number of Facebook forums where caregivers and survivors can vent and discuss common and not so common issues in a safe place—but beware of forums that throb with sorrow and complaint; seek out positive forums where people offer tips and encouragement to each other in equal measure.

The greatest lesson I learned through this experience is that fear is more debilitating than any injury or illness. It’s fear that paralyzes us more than any circumstance. Identifying and coping with my own fears helped me immensely.

My advice to caregivers is don’t try to go through this alone. Believe in the brain’s capacity for healing with a healthy lifestyle. Never lose hope. Enlist help, and check in with yourself so your own health and mental health doesn’t deteriorate. And most of all, remember that even though there will be many hard days, eventually there will be easier days mixed in, and maybe even a few over-the-top happy days, if you don’t give up on life and our amazing human capacity for renewal.

Sources:

1 Lesley S. Miller, Brenda Colella and Robin E. Green. Environmental enrichment may protect against hippocampal atrophy in the chronic stages of traumatic brain injury. Frontiers in Human Neuroscience, September 2013 DOI: 10.3389/fnhum.2013.00506

To find out more about Rosemary or her book, please visit her website or BrainLine.org blog.