After Brain Injury: Five Tips to Befriend A Caregiver
How to respond and what not to say to a friend
Posted Jun 26, 2012
Over 1.7 million people in the US sustain a brain injury annually, and your friend could be one of them. When brain injury blows a family’s life inside out, friends may not know how to help. While the family is most directly impacted, a ripple effect of shock and concern spreads through their circle of friends and acquaintances. Do any of these scenarios sound familiar?
- Your friend Laura’s husband, who is in the military, has been injured by an IED explosion in Afghanistan. You’ve heard that he barely remembers his family, has trouble talking, and gets agitated easily. Laura is staying in Washington, DC to be near him, and folks back home want to help.
- Your coworker’s son has been in a coma for three weeks following a disastrous car crash on prom night. You shudder and think, “That could have been my son. You want to reach out to your friend in this dark hour. But what can you say?
- Maybe your neighbor’s forty-year-old wife had a stroke and just returned home from rehabilitation. You see her sitting in a wheelchair on their porch. He has taken time off from work bring his wife to physical therapy every day.
In this post I’ll offer some tips on how to be a supportive friend during the crisis period after brain injury. In my next post, I’ll share tips to befriend a caregiver who is further along on the brain injury journey. These tips are from my experience, as well as that of members of the support group I facilitated.
1. Be brave enough to reach out. Just start by making contact or leaving a message to say you are willing to be involved. It is fine to say, “I don’t know what to say, but want you to know I care.” Understand that the family won’t be able to return every call, but your concern is much appreciated. Don’t ask a lot of questions, especially about the prognosis. That’s because physicians can rarely predict how recovery will progress in the early stages of treatment. Offer a specific type of help if you can. Even if you don’t get a response, call every week or two. The family will become more aware of help needed over time.
2. Hold on to hope. Let the family know that you will hold the injured person and family in your thoughts and prayers, if prayer is part of their tradition. My husband, Alan, suffered a massive heart attack, cardiac arrest, and severe anoxic brain injury while we were on vacation in Chicago. I was deeply moved by all the messages and symbols of hope our Boston friends mailed to us. I needed others to carry a big torch of hope when mine dimmed, or Alan’s fight to survive took another bad turn.
3. Offer to organize. Family caregivers need to focus energy on making critical decisions, caring for children, and taking in vast amounts of new information. You could offer to set up and maintain an interactive service such as caringbridge.com so subscribers can get updates all at once and leave messages.
If you’re skilled at Internet research, offer to compile the educational materials recommended by the staff, or information about the diagnosis or local resources. This information gets terrifying fast, so remind the caregiver to review all materials and questions with staff. If you know the family well, consider being the manager of a Circle of Support to meet their daily needs for childcare, rides, practical help, respite, etc. Tools such as lotsahelpinghands.com make it easy to sign up online to offer a particular skill or do a task.
4. Please don’t say, “You have to take care of yourself.” We already know that, and we’re doing the best we can. A better question is, “How can I help you take care of yourself?” Can you bring a home-cooked meal or exotic take-out to break the monotony of hospital food? How about new pajamas or a soft blanket for the caregiver who sleeps by the patient’s bed? Offer a shoulder rub, or quiet company in the waiting room. My creative friends sent pre-paid phone cards, aromatherapy soaps, soothing CDs to play for Alan, and a blank journal with colored markers to express the emotions coursing through me.
5. Resist making comparisons. It’s only human to want to make a suffering friend feel better, but often the stories meant to inspire are not relevant to this person. Well-intentioned people told me about a third cousin who had a stroke, recovered quickly and completely, and went back to a better job. I felt sadder, and more inadequate, because I knew that Alan’s severe brain injury would not heal in that way.
However, well-matched examples can sometimes provide motivation and validation. For instance, during the laborious weeks when Alan was learning the alphabet he asked, “Hasn’t there been anyone like me who went through this? A guy who used to be smart and now can’t even read? How did the other guy do it?” Alan’s friend found a magazine article about a college president who had a massive stroke and had to learn everything over again. This man described how he lay awake all night lining up the letters of the alphabet in order. Eventually he succeeded, and so did Alan, in part because he identified with the president’s rigorous practice.
In my next post, I’ll offer tips to befriend a brain injury caregiver as she/he continues to support the survivor. Thank you for your interest in getting involved!
Janet Cromer, author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury, is a national speaker on compassion fatigue, brain injury, and family caregiver issues. Please visit www.janetcromer.com.