JerzeyCate - No One Noticed…
“JerzeyCate” is a volunteer moderator here on the Support Network who shares her experiences and perspective to help others. She wrote this blog in honor of National Family Caregivers’ Month.
We all know someone who has had a stroke. 
- For many it’s a friend.
- For some a relative.
- Maybe a spouse? A partner?
- A Parent?
- Maybe even a child.
Stroke is one of those illnesses everyone (rightly so) fears.
Maybe it’s because many times stroke 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 transforms people. Destroys families. Changes lives forever. And that’s in the best case scenario.
Though more is known about stroke than in the past. It still holds many secrets.
One thing we know for sure; stroke loves to takes prisoners.
When stroke comes for a member of a family; everyone, especially the spouse, partner, (aka caregiver)-- is thrown into turmoil.
If you think my message is that life will "eventually" get back to the way things were “before the stroke,” Sorry. But with stroke the simple truth is that “things will never be the same again.”
I had a mild stroke. My recovery was swift and (comparatively speaking) quite successful. Yet 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, and emotional swings sometimes so overwhelming I worry they may "take me over the edge."
I am viewed 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 had rushed me to the hospital from the opthamologist’s office, where we had gone when I woke up with a strange, awful pain inside my eye. While my eye was fine, When the exam was complete the news was not good at all. The Doctor shocked us when he said I was having a STROKE.
By the time we reached the Emergency Room (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 hospital.
- Looking for all the information he could find about stroke.
- Quizzing 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. Preparing himself for the worst.
Then, as suddenly as stroke had taken over our lives; I was declared stable. It was time to go home.
Once home, we each at some point, was struck by the realization that things would never be quite "the same" again.
This was a major upheaval in our lives physically, mentally; at the very core of our souls. We both knew that even if I had a full recovery - "Everything had changed.”
Gary had faced his worst fear- that I was going to die.
He stood nearby while doctors examined, assessed, and treated me. He held my hand while yet another PIC line was buried deep in my arm. 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.
But while everyone is working with us to make these transitions, our partners are often left to fend for themselves. 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 brought his meals, or checked to make sure he was getting the proper sleep.
- No one suggested he schedule breaks, or rest when he got tired.
He heaved a sigh of anxiety and relief, and took me home. He got me settled, found someone to stay with me; and headed to work, or to pick up groceries. or to complete one of the hundreds of chores necessary to keep our home functioning.
All the time panicking each time his phone rang. wondering if he would return home to find his worst fear come true.
The bottom line is, with the "New Normal" I recognized my life had changed.
I was struggling.
I was learning to adjust.
I was mastering ways to adapt.
So was my husband. But 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. Often leaving them 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 answer. But I do know that if we work to focus some attention back onto each other, our feelings, our needs. If we 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 days. It can fortify us as we travel the long road home.
Tell us: Did you, as a caregiver, feel “lost” after your loved one’s diagnosis?
