Departments: From the Editor
Neurologic illness impacts everyone it touches: not just the person with the neurologic diagnosis but also family and friends. It's often difficult for family and friends to know how they can provide the best help and support to their loved one. We have published many stories over the years with this kind of information for caregivers, but we have also heard from our readers that they want more. So in this issue of Neurology Now, we launch a new department called “For the Caregiver,” dedicated to everyone who supports or provides care to people with neurologic disease.
In the first installment (see page 38), we provide tips on how to make sure that care is well-coordinated among the different providers and medical professionals needed to help the person with neurologic illness (and the caregiver) lead the best quality of life.
Depending on the disability caused by the neurologic illness, family and friends will need to provide different types of support, ranging from emotional encouragement to assuming decision-making responsibilities to complete day-to-day care. The level of care needed tends to evolve over time in people with chronic or progressive neurologic diseases. Generally, the greater the level of care needed, the more challenging it becomes for the caregiver. While most caregivers do not think of this as a burden, it can cause stress. The demands of caregiving require that caregivers take care of themselves as well and reach out for support. Our new department will provide practical information about resources that are available to help caregivers help their loved ones—and themselves—through the journey of neurologic illness.
Just recently, in my practice, I have seen the impact on several families when an adult family member is newly diagnosed with epilepsy and not able to drive. Although this differs in different states, in Texas, people must be seizure-free for six months before they are able to drive. For a working adult or a parent responsible for taking children to and from school and other activities, this can be taxing, as other transportation arrangements need to be made.
I also recently saw a patient in the early stages of Alzheimer's disease. His children had to assume responsibilities for the family business while grieving for their father's loss of function. The children were in the stage of wondering why this had to happen to their family, and they were not entirely comfortable assuming their new roles.
In my own family, my husband and I have had to become caregivers for several family members, which included making the decision to place my father-in-law in hospice care at the latest stage of Alzheimer's disease. I know first-hand the difficulty caused by the emotional turmoil of living through a family member's illness, and the stress of having your life and relationships dramatically changed. Ultimately, all of us in this situation need help to do our best.
While all of these situations are unique in certain ways, they also share many similarities. Our hope is that articles in “For the Caregiver” will address both the specific and shared challenges of caring for people with neurologic conditions. If you have questions about how best to provide care and support to a loved one with neurologic illness, please let us know. We welcome suggestions from you about topics you think we should cover. And if you have advice for the rest of us about caregiving, please let us know and we will pass it on to all of our readers.
Take good care,
Robin L. Brey, M.D.