Those early ones were really something. There was the one when I finally threw out the clothes they had cut off me in the ambulance after they broke my door and seats and extracted me from my car. Then there was the one, after I started driving 18 months post-injury, when I stopped by the side of the road near the intersection of my crash and wept. Oh yeah, that one anniversary when I wrote all the dreams and abilities lost to my injury on pieces of paper and tossed them in a fire…
The date. The anniversary. Some call it their bitter end. Some call it their second birthday; their beginning. Some call it the ultimate curse. Others, the ultimate blessing.
On January 31st, 2010, it will be 14 years since my life was turned upside down in a car crash that stole my every version of normal. Fourteen years since that beautiful, sunny, blue-skyed January morning darkened so horribly to crumpled metal and broken glass, chainsaws, backboards, oxygen masks and rescue workers all around me.
Friends have been asking me this week if I have any thoughts heading into this anniversary. Those who know me well know how big I am with anniversaries. Throughout any given year, I will note how long it’s been since my cousin’s cat died, since my first kiss, since my brother started his current job or my other brother and his wife left for Russia to adopt their children. Maybe a little quirky, I know.
So, when it comes to my anniversary, the one which changed so so much, there is little doubt that I would fail to mark it. What a joy and a blessing it is to do so.
I told one of my friends that I am surprised how much my anniversary isn’t about my injury anymore. That my life isn’t just part of the injury now; that the injury is simply part of my life.
She asked me if I need to keep in mind that this is a blog about brain injury and wondered whether or not I should I write about more than just brain injury. I told her that that is the whole point of all of this. The whole goal. That life HAS to become more than just the brain injury. That is the whole thing, right there.
I have healed. It doesn’t matter that I have such stupid balance that I still stumble and fall and need help, from time to time, with my walking. It doesn’t matter that I still can’t process well late in the day or that my words get stuck and I can’t say what I’m thinking. It doesn’t matter that I still have so many headaches, my memory isn’t great and I don’t have nearly enough cognitive stamina to navigate lengthy days or too much stimuli.
It doesn’t matter. I have healed. As I have often said, your recovery from a brain injury begins with the broken heart.
I realized that I had healed when it no longer was about me all the time. In the beginning, it was soooo all about me and understandably so. And, for too long, even after everyone went back to their lives, it was all about me. It was about what I had lost and what I couldn’t do and how I felt cheated and how I had symptoms that wouldn’t go away. It was about my frustration and my anger and my disappointment and my heartbreak. It was everything to me and everything about me.
But I healed because I decided it was time to heal. To get on with it. To stop measuring recovery by only the symptoms. To recognize there were other people who suffered because of my injury too. Other people who were suffering with their own tragedies and losses. Other people who needed me to start looking beyond myself. And certainly other people who had it a helluva lot worse than I did.
My life had been patiently waiting and it was time to rejoin it. Reclaim it. Time to make the decision to get up and get moving again in some kind of direction, even if I didn’t know what direction that would be. Surprisingly simple as that.
So it is with great pleasure that on MY day, when it is MY anniversary and MY blog and all about MY injury, I want to share something that is absolutely not about me. In honor of healing, in honor of taking back my life and choosing to re-sculpt it, I’d like it to not be about me. I’d like it to be about you. 🙂
All around me are people who still have their parents. While the loss of mine is something that I will always suffer in some measure, I am so very grateful that I don’t have to lose them again. Or lose any more than the incredible two I was blessed with.
I would like to share some of the things my brothers and I learned while taking care of our parents after their strokes and after the onset of our dad’s dementia. So many of you will, one day, care for your own that I thought it might help.
My first thought would be that, if you are a caregiver, realize that it is as challenging as it is is rewarding. It is as mentally and physically draining as it is soul and heart-enriching. The people we care for need our patience and our respect, our warmth and our compassion without exception. We need to be honest about our motives and our willingness and capabilities. We need to realize that every change in them requires a change in us.
It helped me to spend 10, 15 minutes each day before waking my dad to get my head on straight. I prayed. I repeated positive affirmations. I made sure I was mentally prepared to give him what he very richly deserved: dignity, safety, the knowledge that he was loved, peace of mind and physical comfort.
If you are near my age, I’m 45 now, you know there are aches and pains and stiff joints that weren’t there in your mid-twenties. Older people requiring help with transfers need you to slow down and ease up. Many elderly people with cognitive damage will not convey pain accurately. But they hurt or get dizzy if you yank them out of bed. They hurt when you pull up an arm too fast or too high to get their shirt off. Their now-thin skin can literally tear if you pull too hard on an arm or a leg. They hurt when you rush them up and down and here and there. They aren’t performing at our speed anymore and, especially if they become bed or chair-ridden, special attention must be given to the safety and comfort of their simple transfers.
Take it upon yourself to ensure that your loved one is receiving the kind of respect he or she deserves from doctors and healthcare workers. I can’t tell you how many doctors didn’t even address my parents or the homecare nurses who spoke to them in sing-song silly stupid voices like they were children. It is up to you to ensure that your loved one is addressed with the respect and dignity any adult deserves.
We didn’t realize our dad was wandering at night until the neighbor found him lying near his car in the street in the wee hours one morning. Besides having one of us up for him around the clock, we installed hidden locks on the doors and kill switches for the appliances. We put signs on each door saying, “Dad, don’t use this door.” We set motion detectors to go off if he left his bed. We hid the scissors when he cut the cat’s whiskers off, we hid the razors when he put shaving cream all over my dog and was going to shave her coat off, we hid the coffee when he was standing there in the middle of the night with a mouth full of coffee grounds…
You have to pick your battles, so to speak. To figure out the difference between what is comfortable for you and what is best for your loved one. While it may be suitable to repeat and re-teach a younger brain injury survivor the day and the date and the year and who the President is, some of those things no longer apply to the elderly parent who suffers dementia.
Our dad would revisit different decades all throughout any given day. While we first tried to force him back into the present, we found that he was often happier in the 1940s and that, in the end, it really didn’t matter what day it was or if he knew what year it was. All that mattered was his happiness. We sure couldn’t blame him for returning to a time when he was young and able and dancing and dating and enjoying the time of his life. We ended up enjoying his many stories about his youth and finding out what he was like as a kid and a young man and a Navy corpsman in WW2.
For the cognitively challenged, you can do many things to provide them information without making them feel dumb for not knowing it. I used to design my conversations to include information. “Good morning, Dad. It’s a lovely Tuesday in June. Your eldest son, Neil, will be home from work in five hours. Your middle son, Craig, will be coming to visit you on Friday. That’s three days from now. The temperatures here in Warren are warming up. The Detroit Tigers will play the Indians tonight in baseball…..”
As the years passed, my dad spoke less and less. He clapped all the time for a while. He pounded on everything for a while (tables, counters, even us!). Then there was the growling like a bear stage and, after that, the cawing like a bird. We learned to learn. We stopped forcing him into our version of right and normal and chose to embrace his. To learn his new languages. To step outside of the box and get creative. We introduced music to him and found that, while he would not speak or engage in conversation, he would sing decades-old songs without missing a word or a beat. A friend of mine made him CDs of all the classic Big Band tunes and we would sit at the kitchen table every afternoon and sing together, holding hands.
It helps to keep multiple copies of up-to-date emergency information handy. My parents were rushed to the emergency room dozens of times over the years. Often, the different departments didn’t share information. I’ve had hospitals tell me to go back home and get his medication and administer it to him when he needed it. There were doctors who told us we had to stay and watch him because he was in danger and they couldn’t keep him safe. The one doctor told us that, if he stayed one more night, they’d have to give him so much “happy juice” that he would die so we’d need to take him home, despite the fact that he was fresh out of surgery and still bleeding internally. Once I was called in the middle of the night to come back to the hospital and calm him and they asked me what med they should give him and in what dose.
Whenever my dad was admitted to the hospital, I would pass out his information to each department. I would put up a sign above his head describing his special needs and challenges. He didn’t always chew and swallow and so my brothers and I had to be present at each meal because we couldn’t trust that someone would help him eat. One time I was late and I came in to find him tied down with mittens on his hands, a plate of green beans, whole meat and brownies on the table (he was supposed to get pureed and soft foods), his mouth full of brownies with brownies and beans all over his mittens and shirt and bedclothes.
One of my biggest fears was that his cognitive deficits would create situations where he would end up being scared because he couldn’t understand or remember where he was or what was going on. Every time he would be admitted to a hospital, I would type up a huge sign to tape on the table in front of him telling him where he was and that we would be by soon and that we loved him so he could be reminded whenever he woke up or wondered.
Perhaps most important of all is something that applies to any caregiver, regardless of whether their loved one is a teenager with a brain injury or a parent with dementia: Preserve yourself. Take care of yourself. Exist. Get help. Take breaks. Make time to get out and connect with your life, your friends, your own interests. Caregivers disappear mentally and physically. They get run down and burned out. Their health suffers. You can’t provide adequate, compassionate care if you become resentful or mentally fried or hopeless. When your health or your mental state or your motives come into question, you can no longer be the answer. Both you and the loved one you are trying to help deserve more and better than that.
And if one of your parents or siblings is the caregiver and they are taking care of your other parent, please watch them as well. Get them to a doctor. Make sure they are getting rest and vitamins and eating well.
Oh hell, my word count is really up there. Forgive me. I’ve rambled. But I’ve been on both sides of the fence of wellness. I’ve received care and I’ve provided care. Both good and bad. I know, too well, that its quality is so often a determining factor in the measure of recovery and sustainability.
Perhaps it was the growing needs of my parents which helped me to heal. Helped me to recognize how capable I was, even after my injury, to do something important. Worthwhile. To contribute. To step outside myself and recreate a life that wasn’t, any longer, consumed with my injury.
Too often brain injury is like one of those puzzles with all one color. At first it seems so daunting…
But every hard puzzle begins with finding a corner. And, once you find that corner, all you have to do is choose to turn it. 🙂