The priest boomed, “Do you take this man to be your lawful wedded husband, to have and to hold, in sickness and in health, ‘til death do you part?” And, I joyously whispered, “I do!” This is a version of the words so many of us promised on our wedding day as we married our best friend. But, if you are anything like me, all you could think about was the fairytale magic, the wedding cake, and your Prince Charming, with whom you were planning on spending the rest of your life. Of course, we vowed to stay together “in sickness and in health ‘til death do you part,” but death seemed so far away, and it never crossed my mind that there would be sickness. The joy of being a young twenty-year-old was naiveté. All I envisioned was a carefree life with two kids, great careers, and a happily-ever-after. Well, we all know that is optimistic, but foolish, thinking. Life is never easy. It has its twists and turns, bumps and bruises. And, my life with David, my Prince Charming, was no different. We had our challenges, but we always faced and overcame them … together.
So, in 2005, when David had a traumatic brain injury requiring him to have three brain surgeries in less than two weeks, his life was completely upended. David slipped into a coma and was not expected to live through any of his brain surgeries. But, with a little “encouragement” I whispered into his ear (“I’ll never forgive you if you don’t come back to me”) and “encouragement” I told his surgeons (“I don’t care how you give him back to me, just give him back to me”), David survived. David’s brain injury not only upended his life, it also wreaked havoc on mine as I became his forever-caregiver.
Best Friend, Confidant, Adviser
David was always my best friend, confidant and adviser. After his injury, he remained my best friend and confidant, but he fell short on his adviser status. I had to take over many of the household chores that normally fell on David. But I was blissfully ignorant of the mechanics of his duties, and this put me at a huge disadvantage when David was in a coma. With no passwords or any idea how to pay bills or conduct bank transactions (including the ability to get cash from the ATM) – I was lost. The moral of this story is: always know how to execute each other’s jobs and be able to do them if the need arises. (Isn’t hindsight great?) I eventually figured out the mechanics of running our household, though it took months, many overdue bills, and some bills paid twice. I’m not proud of my ignorance. I only tell you this to help you prevent making my mistake and so you will know that, if your life becomes completely undone, you are not alone and there is hope.
David’s brain injury occurred in his 57th year. I am only a year and a half younger. Our grown children were living their lives in states far away, and this was our time to re-explore life as empty-nesters. It was our time to refocus our attention on ourselves. Well, we did a lot of refocusing, but it was not in the way that we thought we would. As David’s caregiver, all of my attention was on him, anticipating and meeting his needs. So much for traveling the world, as we had planned! Our “traveling” included visits to the many doctors overseeing David’s care: neurosurgeon, neurologist, ophthalmologist and chiropractor. David’s weekly schedule included daily trips to the rehabilitation hospital. There, his therapists taught him how to walk, talk, eat, and dress himself again–skills that disappeared with his subarachnoid hemorrhage. Gone were the dreams of Paris, Venice, Madrid and Berlin. We were looking at life through a very different lens, and the view from this lens was skewed. It was blurry and confusing. We didn’t realize it at first, but we were altering our dreams. Our dreams evolved to the hope that David would become proficient at the simple tasks of daily living––tasks that so many of us take for granted.
Life Isn’t Fair
No one said that life is fair. Look at the Little Engine that Could. That Little Engine had to make it over the mountain, but he had to compete against an engine that was far bigger and stronger than he was. Yet, Little Engine, with persistence and determination, chugged and puffed and strained and poured every ounce of his energy into his task until he met his goal and reached the mountaintop. The bigger, stronger engine crested the mountaintop with ease. Doesn’t seem fair, and it probably isn’t. But, that’s life.
A caregiver looking at life through the lens of Little Engine will have a positive outlook and make the best of what life offers. The alternate viewpoint may cause a caregiver to turn glum, resentful, envious, or even jealous of others. But, alas, what good would it do? Having a poor attitude won’t change the circumstances, so, I say, “Take those lemons, add as much sugar as you need, and make big jugs of lemonade.”
Grieving for a Life Gone
You may wonder where I am going here. After all, I just wrote about big jugs of lemonade and making the best of life. I’m not changing my mind, but I don’t want to ignore the fact that your spouse, the one you said “I do!” to on that special fairytale day, may not be the same person after having suffered a brain injury. Brain injury may cause a radical change in personality or emotional behavior. It sometimes physically changes a person’s appearance, as it did with David. Brain injury has a way of altering the very essence of a person, and often caregivers are unable to recognize the person they married. It’s understandable that caregivers may be baffled by this unexpected turn of events. It’s inevitable that many caregivers go through a grieving process. After all, they too have lost a great part of their lives.
The grief model introduced by Elisabeth Kübler-Ross shows five stages of grieving (denial, anger, bargaining, depression, and acceptance), and, though the model is rarely sequential, most folks will pass through these stages to come to “acceptance.” “Acceptance” means to acknowledge the “new normal.” It never means to give up! Would I have chosen our new normal? A resounding “No!” is my answer. But, I am forever grateful that David heeded my warning that I wouldn’t forgive him if he didn’t return to me, and I’m indebted to the neurosurgeons that gave my best friend back to me. So, I will be plenty content with our new normal.
Caregiver’s Need Care Too – MeTime
Caregiving is not for the faint of heart. It’s a darn hard job–physically, mentally and emotionally. Caregivers are usually jugglers, balancing their own lives and that of their care-recipients. They often have an out-of-the-home job, and many are also caring for children. Just thinking about this makes me weary. So, what can caregivers do?
They must take care of themselves first. As all flight attendants suggest, “Put on your own oxygen mask first” before helping your child. A caregiver who is depleted and exhausted will have nothing to give. It’s hard to justify taking time for yourself when you see the immensity of your care-recipient’s needs. It’s hard not to feel guilty while enjoying a few stolen moments, knowing your care-recipient cannot enjoy them too. But, it is imperative that you eke out time each day just for you, lest you become overly frustrated and resentful. I like to think of this as “MeTime.”
MeTime can be anything you enjoy doing for yourself. It can be a walk around the block, a cup of coffee or tea, a bubble bath, a five-minute break to read a chapter in a book, or a chat on the phone with a best friend. You decide! Break your concentration on your care-recipient. Break your stress. Breathe! Even a few moments will provide much required ease. I love to give shiny, polished, little black stones (I call them MeTime Stones) to caregivers to help them remember that they are important and they must take care of themselves too. Even taking a few moments each day can help to stave off compassion-fatigue burnout. Yes, it’s a real thing, and it can be devastating.
We all know that marriage is not easy. It takes a lot of give and take. It takes a lot of respect and cooperation. It takes a lot of persistence, patience and perseverance. Throw in a brain injury or any kind of chronic illness and one’s limits are truly tested. Life has changed forever. You decide if you can change with it. I made my decision nearly fifteen years ago when my husband had his brain injury. I’m in it for the long haul.
Donna O’Donnell Figurski is the author of an award-winning book, Prisoners without Bars: A Caregiver’s Tale. Donna became a forever-caregiver when her husband had a traumatic brain injury in 2005. She writes an award-winning blog (“Surviving Traumatic Brain Injury” at survivingtraumaticbraininjury.