<strong>THE</strong> <strong>Challenge</strong>! Caregiving, Year after Year: How to Ask the Family for Help By Garry Prowe, Author of "Successfully Surviving a Brain Injury: A Family Guidebook" We all know that being the primary caregiver for someone who lives with a serious brain injury is debilitating to your health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. Your extended family and friends most likely were supportive and helpful in the days and weeks following your loved one’s injury. But eventually they returned to their daily lives and responsibilities, leaving you alone to face the daily grind of caregiving. Now, I’m assuming that you recognize the need for help and have discarded any feelings of guilt or embarrassment about asking for and accepting the aid and support of others. I’m also assuming that you are well aware that an unhealthy, unrefreshed caregiver is a poor caregiver. So, how do you find the time to refresh yourself? Who can relieve you of your caregiving responsibilities for a few hours, a few days, or even a week or two? Recharging your battery can take some time, especially if it’s been years since you properly cared for yourself. For many observers, a brain injury truly is invisible. But, you can always rely on your family, right? Wrong. All too often, caregivers tell me, “We feel abandoned by his family. We asked for help in the past, but they always had excuses. So, we stopped asking.” With some extended families, this refusal to help is to be expected. They weren’t close before the injury, and there’s no reason to expect it to bring them closer. This is unfortunate, but it’s out of your control. Otherwise, there are many reasons why family members won’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with your loved one; his impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives. If your loved one is high-functioning, the extended family may see no need for help. He is out of medical treatment. He walks, talks, and looks “normal.” He may even drive a car. Therefore, his recovery must be complete. So, why do you need help caring for him? This line of thinking often leads to the classic excuse for not helping, “You’re pampering him. Let him stand on his own two feet. He doesn’t need help. He’s just lazy and irresponsible.” (Continued on pg. 19) Most of us cannot afford to hire someone to look after our loved one. Plus, if he or she has emotional and/or behavioral issues, finding the right person for the job can be a challenge. This leaves friends and family. Since you’ve been devoting much—if not most—of your time and energy caring for your loved one, you probably have been unable to maintain old friendships and cultivate new ones (except perhaps for the folks in your caregiver support group, who, of course, require help themselves). Consequently, the size of your social network probably has decreased, just when you need it the most. Garry and Jessica Prowe 11 <strong>THE</strong> <strong>Challenge</strong>! | <strong>Spring</strong> <strong>2011</strong>
<strong>THE</strong> <strong>Challenge</strong>! | <strong>Spring</strong> <strong>2011</strong> 12