Guest post by Cathy Aumack-Bandy *
We all know someone who has had a stroke. For many, it’s a friend. For some, a relative. A spouse? A partner? A parent? Maybe even a child.
Stroke is one of those events that most people fear – and rightly so. Maybe it’s because so many times, it seems to come out of nowhere. It strikes a person down without warning. And, once it makes an appearance, stroke shows no mercy. It leaves much in its ruin. It changes people. It changes lives forever – and that’s even in the best case scenario.
Though much more is now known about stroke than in the past, the diagnosis still holds many secrets. One thing we know for sure: stroke loves to take prisoners. When stroke comes for a member of a family, everyone – especially the spouse, partner, caregiver – is thrown into a turmoil of change and a completely new way of life.
If you are sitting here thinking my message is: life will eventually get back to the way things were “before the stroke” – forget it! I’m sorry to be so blunt, but with stroke, that’s the simple truth.
Things will never be the same again.
Mine was a mild stroke. My recovery was swift and (comparatively speaking) quite successful. But I still suffer from some leftover troubles (aka residual symptoms):
- fear of another stroke
- random bouts of depression
- loss of self-confidence
- increased anxiety
- a total inability to multitask (even trying to talk while doing something else is a useless endeavor)
- short-term memory problems
- emotional swings sometimes so overwhelming that I worry they may “take me over the edge.“
And mine is what doctors view as a “successful recovery.”
I had my stroke quite a while ago. When was yours?
For me, like many stroke patients, it was weeks, maybe even a couple of months, before the haze cleared enough that I could see the effects the stroke had on my life.
Fortunately, or unfortunately, my husband saw them immediately. That morning, Gary rushed me to the hospital from the opthamologist’s office, where I had gone because I woke up with a strange, awful pain inside my eye, only to be told my eye was fine – but the doctor believed I was having a STROKE!
By the time we reached the Emergency Room (about half a mile from the doctor’s office), I had the telltale facial droop, my right hand could not grasp anything, and I was dragging my right leg behind me.
My husband spent hours – days! – anxiously pacing the floors of the hospital . . .
. . . looking for all the information he could find about the type of stroke I’d had.
. . . quizzing the doctors and nurses about my treatment.
. . . watching my therapy sessions as I, figuratively and literally, got back on my feet.
. . . checking for signs that things were getting better or getting worse.
. . . talking to the doctors, the nurses, the therapists and the caregivers of other patients about my progress, about what to expect.
He encouraged me. He held my hand. He promised me that I would be “fine.” He repeatedly gave me the hope I needed; telling me that everything would soon be “back to normal.”
All the time fearing, knowing, it wouldn’t, and preparing himself for the worst.
Then, as suddenly as the stroke had taken over our lives, I was declared stable. It was time to go home. Once home, we each at some point were struck by the realization that things would never be quite “the same” again. Nor should they. Though my stroke was comparatively mild, and the hospital stay only a few days long, this was a major upheaval in our lives physically, mentally and at the very core of our souls. We were each left knowing that even if I had a full recovery, everything had changed.
My husband had faced his worst fear: that I was going to die. He stood nearby while doctors examined, assessed, then treated me. He sat nearby while therapists worked with me.
And then he took me home. That is significant. It changed us, both as individuals and within our relationship.
Eventually a “New Normal” comes for each of us recovering from the aftermath of stroke. It comes as a new way of looking at situations, accepting limitations you may have, and working to get through them or go around them.
The attention of the doctors, the nurses, and the various therapists, both in the hospital and then at home, was on me. Not on my husband.
No one asked him how he felt about the stroke.
No one held his hand for comfort.
No one examined him. Explored “What hurts?” Questioned him about his concerns.
No one checked his vitals. No one cautioned him to watch his level of stress. No one inquired about his meals, or checked to make sure he was sleeping all right. No one suggested he schedule breaks, or rest when he got tired.
If you too have faced a health crisis, your partner (like my husband and most spouses of stroke patients), most likely heaved a sigh of anxiety and relief and took you home. He got you settled, found someone to stay with you, and headed to work, or to pick up groceries, or to complete one of the hundreds of chores necessary to keep a house going. All the while, panicking each time his phone rang, and wondering if he would return home to find his worst fear had come true.
The bottom line is, with the “New Normal“, we recognized my life had changed.
I was struggling. I was learning how to adjust. I was mastering ways to adapt.
But so was my husband.
In his case, no one noticed.
Caregivers spend a significant amount of their energy and attention focusing on the needs of others. An unintended consequence of this is that they risk losing sight of their own needs. This can leave them feeling broken and depleted.
How can we work together, patients and caregivers, so we will be able to recognize when a caregiver has stopped paying attention to their own needs?
How can we work together so we will be able to recognize the signs in each other that we are becoming lost?
I’m not sure of the answers. But I do know that if we can focus some attention back onto each other, our feelings, our needs – if we can reconnect even a little bit to the people, places, and activities that support health, restore energy, and bring some happiness back into view – it can be invigorating!
It can bring some joy back into our day.
And it can fortify us as we travel the long road home.
© 2016 Cathy Aumack-Bandy
* Starting in 2013 while in her 50s, a series of cardiac crises in Cathy’s life ultimately included dilated cardiomyopathy, heart failure-systolic, mitral valve insufficiency, atrioventricular block, multiple arrhythmias including atrial fibrillation. Secondary disorders from the heart damage were COPD and chronic kidney disease. With her permission, the dramatic cardiovascular history of this Florida patient was also described in her essay here called “Turning ‘Why Me?’ into ‘Why Not Me?'”
Q: How has your partner’s support affected your own recovery?
What is a stroke? A stroke is one type of cardiovascular disease. Just as a heart attack happens when blood flow feeding the heart muscle is disrupted, a stroke happens when blood flow to the brain is disrupted. You could think of stroke as a “brain attack”. Some brain cells do not get the oxygen and nutrients they need during a stroke. When the brain cells die, that area of the brain cannot function as it did before unless help is provided immediately. This is why you must call 911 at the first signs of stroke (just remember FAST: Face drooping, Arm weakness, Slurred speech, Time to call 911!) For more stroke information, visit the Heart and Stroke Foundation of Canada.
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