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Kathryn Haslanger

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Sustaining a Caregiver's Hope Through a Loved One's Recovery from Traumatic Brain Injury

Posted: 03/19/11 01:00 PM ET

When Representative Gabrielle Giffords of Arizona was shot in the head during a tragic mass shooting in Tucson, we all watched with deep sympathy as her husband, astronaut Mark Kelly, sat by her side, holding her hand while maintaining his own composure. What must it be like to witness your spouse or someone you love receive a gunshot through the brain, and then face the reality that this kind of injury will change life as you both know it forever?

The kind of traumatic brain injury (TBI) sustained by Gabby Giffords, whether it is due to an accident, tumor or stroke, often results in life-changing consequences for the victim, as well as for the family members caring for them, because the brain is the organ that defines the true essence of a person -- how they think, feel, move, act and talk. The range of injuries and the degree to which a person recovers are extremely variable. Individuals with severe injuries can be left in long-term unresponsive states, and even mild TBI can greatly affect one's family, job and community interactions. Additionally, the path to recovery can be unpredictable, with frustrating setbacks along the way. For a family member caring for a TBI patient, recovery must be thought of not as an end in itself -- such as reclaiming their family member's former self -- but as a long-term process with the goal of maximizing function and independence.

I breathed a sigh of relief when I read that Rep. Giffords was released from the hospital to an inpatient rehabilitation center. Her speech function is said to be improving, she is eating now and she listens to, and smiles at, stories told to her about her home state. Her doctors say that in terms of brain injury, she is progressing at "lightning speed." At some point, Rep. Giffords likely will be discharged from the Houston rehab center when clinicians agree that she has reached the point where she can continue her recovery at home. I'm sure the rehabilitative work she'll do will be challenging, and that her family and friends will be called upon to provide daily support and assistance. But still, returning home will bring hope and open a new chapter for recovery.

At the Visiting Nurse Service of New York, we see that the home is a very dynamic setting for rehabilitating a brain-injured patient. Everything and everyone in a person's home is a reflection of their life; their surroundings are constantly stimulating, comforting and meaningful. Speech therapists, occupational therapists and physical therapists who visit brain-injured patients say the most wonderful strides can be made once a person sees, and settles back into, their own home. It is understandable that patients, and their caregivers, feel energized when they come back home, and expect that it's time to "wrap this up and get on with life."

According to Dan Carpenedo, M.A., CCC-SLP, Clinical Specialist, Speech-Language Pathology at VNSNY, dealing with these expectations is an important role of home care professionals. "Coming home presents many challenges," says Mr. Carpenedo. "Rehab can be very difficult on everyone. Patients begin to realize the severity of their deficits and have inevitable setbacks. And for family caregivers who long for complete recovery, any delay in the healing process can be disheartening." Therapists must talk openly with patients and their families about the unpredictability of TBI recovery. They must help the family manage expectations and develop realistic goals to prevent disappointment.

Helping a family caregiver prepare realistic expectations requires understanding that all of our lives are constantly changing, and though things may never be the same, peace can be found in a new reality. Take Kathleen, caregiver to husband Harold, a stroke patient who was having difficulty swallowing liquids. In order to prevent aspiration pneumonia, Harold was prescribed Thick-It, a thickening agent, for his drinks to help him swallow. When discussing realistic goals with their therapist, Kathleen expressed, "For 30 years Harold and I shared a glass of wine every evening. Now, because of his inability to swallow thin liquids, Harold can't drink wine, and we don't have that daily connection." The therapist discussed an exercise plan for improving Harold's swallowing function and a timeline for eliminating the thickener. This realistic goal for the reinstatement of a simple daily ritual gave both Harold and his wife hope for a future together.

Some people criticize the decision made by Rep. Gifford's husband, Mark Kelly, to return to work. And one can understand this criticism to a certain extent -- after all, a trip to space is not your typical commute, and a space capsule is not an office where you can check in via phone throughout the day. But in thinking about the ways therapists measure success in TBI rehabilitation, every family must decide for themselves the best way to heal. States Mr. Carpenedo:

Recovering from TBI is never one size fits all. Every patient and family member finds comfort in different ways. Some patients lean on their loved ones to a great extent; others hate the burden they are putting on caregivers. The important thing is to figure out, with help from your rehabilitation therapists, what will move your family forward in the best way possible.

Tough decisions, like the one to return to work in this case, may be "just the ticket" for this family. Just the restored order of a spouse returning to work can build confidence for the recovering patient, as is the case for Rep. Giffords, who recently stated that she plans to attend her husband's launch in April. This is especially true when there is little real assistance the family member can provide a recovering patient.

"And it's not all bad news," continues Mr. Carpenedo. "Recovery from TBI can have a positive impact on a family as well." Jill Bolte Taylor is a brain researcher who herself had a massive stroke and spent eight years recovering from TBI. She says that her stroke, in wiping out the organized, work-driven, straight-thinking parts of her left brain, left her to discover previously unknown feelings of love, self-awareness and connection to others.

While her case may be extreme, it is not uncommon among home care patients with TBI to talk about the milestones that cause them to value where they are in life and their relationships with others. Family caregivers play an integral role in helping their brain-injured loved one find this acceptance of life after TBI, and while doing so, often experience new insights into their own lives.

Do you have an inspiring story about recovery from brain injury, or questions that you'd like to share? Is someone in your life recovering from a TBI, stroke or other injury to the brain? We invite you to comment below and connect with others who may benefit from your questions or your solutions to sustaining hope throughout recovery from serious brain injury.