Caregivers of People with Traumatic Brain Injury
The world of brain injury is beyond the comprehension of those who only observe the situation from the sidelines. For the injured and his or her family, life is a continuous struggle in an effort to find hope and make a difference in the life of the injured person.
My husband, Milton, and I live in Jasper, Minnesota, a small town of 750. We are the parents of three children and have four grandchildren. Before August 6, 1987, our lives were typical of small town, rural living. But on that day, our lives were dramatically changed when our son Keith suffered a brain injury after a blow to the head during a softball game. He was in a coma for four and a half months during which we had to “wait and see.”
Because every brain injury is unique, we soon learned that even the most skilled professionals make no firm diagnosis or prognosis. Yet we have many questions for which there are no answers.
Once Keith came out of his coma, we had more questions and concerns. He was affected both mentally and physically. The most devastating is the loss of his short-term memory because it keeps him from living independently. His brain no longer stores information, yet he retains the technical and personal knowledge he had before the injury.
There aren’t words to describe all that’s happened in the last seven years. I quickly learned that services for people with traumatic brain injury aren’t adequate. Caregivers often have no training in brain injury. In long-term care facilities, there’s little emphasis on working with the person to regain independence. The lack of basic care due to ignorance is alarming.
I became determined to educate myself in every way possible so that Keith could receive the best care possible – the goal being rehabilitation toward more independence for him. This is a formidable task. It’s accomplished through phone calls, correspondence, seminars, visits to rehabilitation centers, and numerous follow-ups. It’s also done in conversations with the community of families in similar situations. Whenever I gained some knowledge or skill I shared it with the round-the-clock caregivers we had with Keith.
Keith is presently in an expensive, highly-regarded facility in Colorado to help him overcome his most complex behaviors. Here, as in most places we’ve tried, they seem more clinical than caring. When I visit, I sometimes observe that they’re understaffed and inconsistent in their procedures. What I see in every area confirms my conviction that every caregiver, from the primary to the professional, needs training in how devastating the effects of brain injury are to everyone concerned. In facilities that provide services to people with TBI, there absolutely needs to be a minimum amount of education for staff. Current training specific to TBI is optional for the people who provide the care. There need to be requirements.
And even the most basic training needs to be available regularly so that families have the information they need to make good decisions about care. No family should be so frustrated in their attempt to get information that they’re forced to give up the care of their loved one to a facility in which they have no confidence. The constancy of care, the frustration, and the change in life-style are all damaging for a family. A major portion of my time is devoted to Keith, which leaves little for the activities we once took for granted. It’s a constant drain on time, energy, emotions and finances. (Financial assistance is virtually nonexistent).
I did find some assistance in the community. I took some classes at the Pipestone campus of Southwestern Technical College. I was impressed with the way a customer service representative there took on the responsibility of offering courses to our community after a request from a speech therapist I knew. Together with the Minnesota Head Injury Association, they made information available for families and care providers at a reasonable cost. This was, at least, a good beginning. Still, there’s a long way to go. Classes like these are the exception, and more of them need to be offered, more frequently, and statewide.
It’s evident that there is much ignorance about brain injury. In the best of worlds, there would be an aggressive attempt to study brain injury and understand it, to share what is known and refute what is false, and to never stop talking about the mysteries that surround that delicate organ, the brain. That should start with the top professionals and filter down to the most personal caregivers.