Vital to Both Patients and Caregivers
Before I ever knew what it meant to be a caregiver, before I ever heard of an illness called pulmonary hypertension, I read a Reader's Digest article about a hospital volunteer position called hand holding. A hand holder sits with a patient, before or during surgical procedures, offering the physical comfort of his or her presence through the simple but profoundly human act of holding hands. I remember thinking, "I'd like to do this someday." And now I do.
As full-time caregiver to my mom, who was officially diagnosed with PH in December of 2008 after a year of clear symptoms and baffled doctors, I offer her the comfort of knowing that my hand - and by extension my love and care - is always within her reach. Sometimes it's all we caregivers can do, but often it is enough. My mom's recent hospitalization at Yale-New Haven Hospital showed me how important it is for caregivers, and not just patients, to have a hand to hold onto.
My mom had been relatively stable, with the usual PH ups and downs, for three years after her diagnosis. But this past fall, a routine blood test showed that she had severe iron deficiency anaemia, which caused a rapid spiral into pulmonary edema and a heart arrhythmia called atrial flutter. I took my mom to Yale, where doctors were confident I had gotten her there in time to prevent a PH disaster and she would be just fine. But that's not quite how it worked out.
On her second night in the hospital, my cousin Shannon and her daughter Blaze visited and, afterward, offered me a ride home to shower and return; I never leave my mom alone overnight when she is hospitalized. At home while I was towelling off, Shannon burst into the bathroom holding the telephone out to me, wide-eyed: "It's your mom's nurse." Mike, whose sweet, easy-going, and innocently flirty personality had put my mom's mind at ease, did the same for me as he explained that after I'd left, my mom had had some anxiety and he'd sat with her. Suddenly, her oxygen saturation dipped dangerously low and he was unable to bring it up, so he had transferred her to the ICU. I thanked him for calling, told him I was glad he'd been there with her, and then collapsed crying in my cousin's arms. I had no idea what awaited me when I returned to the hospital.
My mom was in respiratory distress, a term I'd heard but never really understood until that awful night. I walked into the darkness of her new room to find her alone, unconscious, and hooked up to what looked like a ventilator. I later discovered it was a high-flow oxygen and air device. I watched, sickened and heartbroken, as each effort to take a breath bent my beautiful mother's body in two. Her shoulders hunched and her stomach heaved with each gasping intake.
On my mom's floor that first night was Dr. Dieffenbach. Young and affable, he chuckled when I told him I'd never remember his name in my state of mind. But I do, and I also remember his kindness and patience as he explained in depth my mom's condition, the treatment plan and the possible outcomes. And, in an even more compassionate gesture, Dr. Dieffenbach peeked his head in the room during my mom's second night in the ICU and said, "I'm not on this floor tonight, but if you need to talk about anything, just ask for me and I'll come." The right bedside manner in a medical professional is a kind of hand holding too.
Hand holding need not take place in person, either. I used Facebook to keep family and friends updated about my mom's condition, and my online friends' messages brought me comfort and happy tears. Often on Facebook, you become connected with people you barely know. Such was the case with Matt, a friend of my cousin's, who had seen my Facebook posts about my mom, gotten my cell phone number from my profile, and texted me: "Hi Nancy. This is Jeff's friend, Matt. How are you doing?" I was in agony, and I told him so. "I'm here for you," he said and meant it. During my mom's twoplus- week hospital stay, every time I sent a text to Matt saying: "I'm scared," he replied: "I'm here." His hand was a welcome surprise that lifted me, supported me and has led to friendship.
After the awful night when I'd gone home and received the phone call that my mom had been downgraded to critical condition, I was emotionally unable to leave the hospital. I stayed for two days, in the same clothes, by her bedside. On her second night in the ICU, she was agitated and unable to get comfortable. I spent the night on my knees by the bed, holding her head on my shoulder - the only position in which she could sleep. In the morning, a new doctor came during rounds. "I'm Dr. Hajizadeh," she said warmly. "I'll be taking care of your mom."
"I'm sorry," I said, feeling uneasy, "but I'm going to need Dr. Trow." Dr. Trow is the PH specialist who diagnosed and has cared for my mom over the past four years, and I wanted his familiar face and caring presence. Luckily, Dr. Hajizadeh understood my anxiety and didn't take offense. She explained her place on Dr. Trow's team and his continuing involvement in all things related to my mom's care. Dr. Hajizadeh proved to be brilliant, and I grew to admire and even idolize her as she took control of my mom's care and took me under her wing. Sensing my need to understand and participate in my mother's treatment, she encouraged me to conference with the team of critical care doctors, to view and discuss my mom's computerized test results, and to recognize my importance as a member of my mom's healthcare team.
Like Dr. Hajizadeh, the rest of the Yale staff also took notice of my fragile emotional state and intervened. My mom's next RN was the amazing Michelle, whose no-nonsense but congenial personality told me she would hold my hand but also give me the push I needed to think of my own health. "You look like you're going to drop!" she exclaimed. "You need to go home and sleep in your own bed, not in one of these hospital chairs. You have to get your rest because when your mother gets better, she is going to need you even more. You need to trust us, trust that we know what we're doing and go take care of yourself." It was the hardest thing anyone had yet asked me to do, because as caregivers, we often forget one crucial thing: we need to hold our own hands too.
I balked at Michelle's suggestion, and my mom's respiratory therapist, Peggy, asked me to take a walk with her; she had something to share with me: Yale's Smilow Cancer Center's Healing Garden, a magical rooftop maze of trees and plants, oversized rocks, a babbling brook, benches, a gazebo and a wind chime. While there, she shared with me her story of caregiving for her own mom and then left me to be alone and quiet for a time. In that garden, I allowed myself the comfort I always give to others without remembering to reserve a bit for myself.
Reminding me to keep this newfound balance was the Yale ICU social worker, Donna Palmer, who offered tremendous comfort in two lengthy talk therapy sessions. I learned that it's okay to give myself a little space, to acknowledge I can't do it all, to ask for help. And I started immediately taking care of myself through a request for help that allowed me find the inner peace I needed to be able to leave my mom and go home and sleep. I created a buffer between myself and any possibility of another devastating phone call from the hospital. I did so by turning to my rock, my Uncle Mike: "Can I ask you to put something on your shoulders for me? Will you be the emergency contact for Yale instead of me? Because I can't bear the thought of being alone and getting a call saying my mom is worse or gone." He agreed, and we made an arrangement that he would text me with any good or neutral news, but that if the news was bad, he would deliver it in person, so I'd have his hand to hold.
Thankfully, my Uncle Mike never had to come to my door, and as I write this, my mom is home with me, still recovering and working on getting her strength back, but closer to her old self every day. My gratitude to the Yale medical team that saved her life, and my sanity, is boundless. The doctors, nurses and staff who reached out to me left me with a newfound awareness of my own strength, resourcefulness and resilience. Because my Yale hand holders and my friends and family enveloped me in their caring, I was able to hold on to my mom's hand without letting go even in the darkest moments and lead us both back on to the path toward light.
By Nancy Leaman
Caregiver to her mother Linda