From Guest Author CJ Golden
On a Wednesday evening in May of 2016, as we left a local restaurant after celebrating our anniversary, my husband asked me if I had noticed anything unusual about his speech.
“No,” I replied. Joe’s speech, clarity and language skills did not, I believed, appear askew in any way. He disagreed.
In hindsight I recognize that he was feeling something I could not yet discern. In hindsight I realize there was something happening within him that required attention.
Ah, hindsight— isn’t it a wonderful thing? If only we could make our life decisions in hindsight!
The next morning his speech appeared a tad labored, but nothing I deemed concerning. Perhaps he was tired: he had recently been diagnosed with chronic lymphocytic leukemia, a cancer of the blood and bone marrow, the symptoms of which include extreme fatigue.
Joe’s speech worsened noticeably by the weekend. We went to our local emergency room where they did an ultrasound of his brain, drew blood, and declared that he was well enough to go home – with the caveat that he call a neurologist immediately on Monday.
A Stroke of Bad Luck
He did just that. Numerous tests followed and ultimately revealed that Joe had, indeed, had a stroke.
Thus our education began: Joe on how to live the life of a cancer/stroke patient with all the hospitalizations, handicaps and therapies involved.
And me, as the caregiver to a stroke/cancer patient.
In this and several articles to follow I shall attempt to share with you what Joe and I have learned. Perhaps you will shake your heads in recognition: you’ve been there, done that. In that case I hope my words will serve to reinforce the positive takeaways you have learned from these detours in your paths.
Perhaps you will be fortunate enough to never have the “opportunity” to become educated in these topics. Hopefully you never will, but if the time comes that you do, or if you have friends of family members going through these same difficulties, I hope my experience will serve to give you strength and hope.
The Next Chapter: Self-Care
Now that we are home from the hospital and Joe appears to be on a straight path to healing (not that the path will really be straight—we are prepared for some detours along the way), I want to discuss my role as caregiver and taking care of myself.
I begin with this topic because recognizing my own needs has been the most difficult lesson so far. Caring and intelligent friends and family members had been trying to get me to accept it from the get-go, but it took a volcanic meltdown for me to grasp.
I had been sleeping in Joe’s hospital room, trying to coordinate all of his care. I had remained by his side all day, every day, to glean as much as I could from each of his doctors and therapists so I knew precisely what I needed to do as a caregiver when we returned home.
I thought I was doing my best for Joe. But I was neglecting my own needs. I am not talking about the “need” to get my hair and nails done.
I am referring to:
- taking the time to be with friends who offered to come to Boston and take me to lunch.
- taking a walk around the block and exercising my weary body.
- leaving the hospital room in the evening, going to a hotel and getting a decent night’s sleep to wake refreshed and ready to take on a new day of challenges.
Rather, I remained resolutely calm, controlled and clinical. I knew I could not— should not—cry, be upset or throw a tantrum in front of Joe. What he most needed was my strength and love.
But what I, in reality, most needed was to cry, be angry, frightened and frustrated when I was away from him. I clung instead to being strong and not letting those feelings surface— ever—not with friends, not with our kids, not even with myself.
Then one evening, I erupted like Vesuvius.
I phoned one of my closest friends and sobbed uncontrollably as I walked from the hospital to my hotel. While still on the phone, I stopped in at a CVS to pick up some medications I expected would be waiting for me. When I discovered that the pharmacy was closed, I cursed like the crazy woman inhabiting my body.
My friend on the phone heard all of it. And she must have been nodding and perhaps pleased that I had finally allowed my emotions to come out.
They should have been expressed sooner. I should have allowed myself the anger, frustration, concern, and sadness rather than assuming I was robotic and above those very human feelings.
It took an eruption of tears and rage (not to mention an apple martini and piece of chocolate cake!) to teach me that I am mortal and vulnerable. And that I, too, need to consciously release those feelings or they will burst out as they did in Vesuvian tears and distasteful behavior.
It was not a pretty lesson, but I learned—or began learning—that it’s okay—no, it’s imperative!—to take care of myself physically, emotionally and mentally while taking care of Joe.
Caregivers of the world, heed these words before you, too, are transformed into a volcano. Most certainly it is not the best way to heal your fractured soul.
CJ Golden is the author of TAO of the Defiant Woman and Tao-Girls Rule! (for teen girls.) CJ’s latest book, One Pedal at a Time: A Novice Caregiver and Her Cyclist Husband Face Their New Normal with Courage, Tenacity and Abundant Love. All these titles are available from Amazon.
You can learn more about CJ and her work at CJGolden.com.