Balancing Act: Caregiving Thru Hospitalizations, Rehab, and Recovery
I have been a caregiver for my husband for the last ten years for a variety of procedures and surgeries ranging from shoulder replacements, cataracts, and heart surgery to prostrate and cardiovascular procedures. All these medical interventions came with a variety of inconveniences that were manageable by my husband or needed a moderate degree of assistance from me.
Radical Turn
My Caregiving experience took a radical turn when my husband underwent heart surgery for the second time. He needed to have one heart valve replaced and two valves repaired. What was supposed to be a five-day hospitalization turned out to be seventeen days in CICU when he contracted aspirational pneumonia, and nearly died in the first twenty-four hours.
In the seventeen days he spent in CICU on a feeding and breathing tube, I had numerous conversations with medical staff about his health. Each day brought new challenges and questions. When would he be able to talk again? Would he need dialysis since his heart wasn’t pumping well enough for proper kidney function? Would he need a pacemaker?
Most days I waited for his body to give me the answer to these questions. After a week I went home, per his prompting written on a whiteboard. “Nothing is happening here”, he said. “Go home, and Sleep in our own bed.” I knew he was right, but I was reluctant to go. What if he took a turn for the worst and I couldn’t get back to the hospital (which was an hour away) in time for a final goodbye? Every night I placed the phone next to his pillow and prayed that I would not receive a call to come to the hospital as soon as I could because things were not looking good.
Improvement?
Finally, my husband was improved enough to be discharged to the step-down unit. Two days later, I received a call telling me that he needed to be transferred to a rehab facility. They felt he had made all the gains he could make in two days! What?! Also, he would be less suspectable to hospital borne infection the sooner he left. I had erroneously believed that my husband would be in the step-down program for a week to ten days as he regained his strength. Instead, I had forty-eight hours to find a rehab facility near our home that was COVID compliant.
A rehab facility near our home was found and I checked it out, and off I went to collect my husband and safely drive him there. I almost felt like I was transporting a newborn baby since this is how fragile his condition seemed to me.
He had settled into a semi-private room, and it looked like I could finally take a deep breath, since he had survived the worst and now was close enough for me to see him every day. Seventy-two hours later he was diagnosed with COVID which he contracted from his roommate. This led to ten days of isolation with me leaving encouraging notes and care packages at the door of his room.
Not once did I have a consultation with the attending physician, the physical therapist, the Nursing staff or received a welcome package about the facility and its guidelines and expectations.
Home challenges
 Once my husband was discharged home, he experienced dizziness which resulted in a fall and a subsequent brain bleed. He was physically weak, unsteady, and prone to falling. He had weeks of physical and occupational Therapy, and in home nursing care. I went to every follow-up cardiac appointment and took lots of notes. When I didn’t understand some medical term or procedure, I researched it to have a better understanding and to be able to ask more detailed questions. My husband, who researches the hell out of a new car, a computer, or a company to do home repairs, doesn’t research medical information or situations. He has told me more than once that the doctor will tell him what he needs to know. By default, I have become a researcher so that I can share information with our two adult daughters and various extended family members.
Caring Bridge
One thing that I found extremely helpful during my husband’s hospital stay and recuperation was Caring Bridge. Caring Bridge (caringbridge.org) is a non-profit organization that allows a family going through medical conditions to share information without having to call or text numerous people to update them on the most recent health developments. I found this helpful in maintaining a written record and therapeutic for me, in reading encouragement from family and friends.
Caring for myself
As a caregiver I have come to see how valuable it is to have someone in your corner advocating for you when you are at your most vulnerable. I have been reminded by people who have walked before me on the caregiving path that I needed to take care of myself. I found rest and sleep to be one of the most helpful allies in maintaining balance. Deep breathing in times of Stress, maintaining my Exercise routine, reducing demands on my time from organizations, being transparent enough to allow others to help, finding people I could trust to hear my deepest worries and concerns and remembering as my sister said to me “you don’t have to be strong all the time.” My faith and the prayers of my church family brought me through so much uncertainty and Anxiety. Often, I felt so stressed from the hour-long drive and dealing with this complex medical situation that I wondered if I was going to have a health crisis.
Early on I set boundaries with members of my husband’s family who wanted to come out for the eight-hour cardiac surgery. Looking back, I am so glad that I did because it is important for a caregiver to know who they can lean on, who won’t panic in a crisis, and who will know how to anticipate your needs without needing a script. It’s not the time for falling prey to being nice to anyone who is unhelpful or needy. I learned that my main priorities were caring for myself and my husband, and this served us well.
Sheila Metcalf-Bareiss
My name is Sheila Metcalf-Bareiss and I have always cared about others and what would promote their wellbeing. Professionally I have provided support, and guidance to school age and adolescent psychiatric patients and students receiving various special Education services. While all these people centered caring roles (including being an older sister and mother) have heightened and fine-tuned my sense of empathy, caring for my husband of thirty-seven years has far surpassed my previous work and life experiences. In this care role I have had to expand beyond the basic office visit by researching medical terms, procedures, surgical outcomes, and navigating the complexity of the healthcare system, while also learning how to provide care for myself as well to stay sane and well.
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Originally Published on HeyBoomer.biz
