b'quickly changed this for me. I quickly understood that sheListen to other caregivers and offer your help. It will needed the best version of me, so thats what I always tryhelp you to feel more in control and help you own your to provide. situation.DONNA: Interestingly enough, it took years for me to labelQWhat do you do to practice self-care and combat myself as a caregiver. Obviously, to the outward eye, I was incompassion fatigue?caregiver mode as soon as I called 9-1-1 to request an ambu- BOB: I try not to take myself too seriously. When I struggle lance. From that moment on, I became the forever-caregiverthe most is when I try to do too much or try to be too perfect.of my husbands health and the overseer of his many needs that result from his brain injury.I believe its really important to make time for yourself so you dont forget or lose focus of those things that bring you But truly, I never felt like Davids caregiver. I felt only that Ijoy and relaxation. For me, its music and writing. So, I find was his wife and best friend and would do whatever it tookways to make time for that. I typically do my writing in the to help him get better. We took vows for life: In sickness andearly morning hours before the day gets crazy. in health for better or worse . This was just part of lifeour life, which we were fortunate to be able to continue onAlternative music is a big passion of mine. My oldest son, together, even if it was the sickness and worse part. Dylan, shares this passion with me. So, we see live music together whenever the opportunity presents itself.Now, I do think of myself as a caregiver, though David can actually do more for himself than he could in the early years of his brain injury. But, I think I mostly carry that label soDONNA: Take time for yourself. You cant do it alone, that I can reach out and help others who are going throughthough oftentimes it seems like you must. a horror similar to the one that we went through. Ive beenIn my early years as a caregiver, I felt like a juggler in a circus. there. I know its hard. If I can help even one person, IllI had to keep so many plates in the air. One misstep, and be happy. Though, of course, I hope that I can help many. they would all come crashing to the floor and smash into thousands of fragments. And, like Humpty Dumpty, who QWhat advice would you give to other caregiversfell off the wall, they could not be put back together again. I of an individual with a brain injury? juggled insurance phone calls, doctors appointments, ther-BOB: Be easy on yourself. You will make mistakes, but theapy sessions, medications (15 pills a day at various times), key is that you keep learning from them and dont beatmushy meals, eye dressings, and feedings (directly into a yourself up over them. tube inserted into Davids stomach). Ask a lot of questions to medical providers and do not set- So, though I now stress to caregivers the importance of tak-tle for those that do not listen or are not in tune with youring time for themselves, I didnt take my own good advice particular situation. in my early years. Thats one of the things I wished other caregivers had shared with me when David had his brain injury and made me a forever-caregiver.DONNA: Oh, there is so much advice I could share now,Now, I give talks and teach classes to advise other caregivers and I wish that someone had shared it with me fifteen yearsto do what I should have done. Take time for yourself. Take ago. Caregiving is a lonely road. Most folks dont understanda walk around the block, read a book, have a cuppa tea or brain injury and the effects it has on not only the survivor,a mug of coffee, watch a ball game, or take a bubble bath. but also on family, friends, and especially the primaryIt doesnt matter what you do, but you must seek out some caregiver. Here are a few suggestions: time for just you. It took me five years to figure this outFind a support group, even if it is on social media. Youmuch too long. But, five years after Davids brain injury, I need to know that you are not alone. Other caregivers canreturned to the theater as an actor, playwright, director, and and will relate to your frustrations and extreme fatiguestage manager. I also created jewelry and began my own Etsy because they are experiencing them too.business called Diemodi Jewelry. Those activities placed me Vent or talk about the challenges you are facing. Oftenin a far-off world and allowed me to zone out and refresh.family members and friends simply dont understand the complications life brings with caring for a loved one with a brain injury. So, find someone you can trust.10The Noggin | 2020vol 5issue 2'