Navigating Healthcare and Finding Myself Along the Way
When we were expecting our first child, the hordes of experienced parents echoed the same warnings like a flock of parrots: You don’t know what’s coming. Be prepared, your life will not be the same. As much as you try, you’re never ready.
Caring for an aging parent, the other end of the life cycle, came without many warnings or instruction manuals. To be sure, I was not ignorant. I’ve witnessed enough elderly parents of friends and family to know it would not be a walk in the park. However, I did not anticipate the gargantuan undertaking and the wear and tear on my health. Unlike childbirth, the crisis is not always sudden or expected. Often there is a creeping decline and gradual need for assistance. The light at the end of the tunnel can be a flicker at best. The progression can be subtle in a way that makes the dead end we’re driving towards foggy. As human beings, we don’t want to believe things can’t or won’t get better, much less get worse. We grasp harder at the straws of good news and pay less heed to the storm clouds on the horizon. Nothing really prepares us to assume the role of caregiver for the very people who have been our own caregivers. For some, our rocks turn into lava, like life going in reverse.
Our newborn babies appear in our world without any history or baggage. Their need for our love and help is pure, and our nurturing is unconditional. By contrast, the crisis of aging, ailing parents comes with baggage — theirs and ours. We have a life’s worth of buttons almost impossible to shield from the journey at the other end of the life cycle. Nothing prepared me for the tidal wave of despair, depression and anxiety occasioned by the declining health and cognition of my father and his growing need for help. The curtains were pulled back on a history of feelings I thought were in good order but suddenly seemed messy and hard to reconcile with the duty at hand.
It all started with a simple blood test indicating an iron deficiency. After a few tests and a colonoscopy, we learned that the tumor in his colon was malignant and surgery was urgent. After a lifetime of good health, my dad was shaken. I was at a loss for words to reassure him it would be OK. Would it? After a few days of scrambling, I realized he could not manage the road ahead, the length and difficulty of which were impossible to foresee. I realized that his worsening mental state and language difficulties in a foreign land would make it impossible for him to navigate the treacherous waters of Israeli healthcare. I was all he had.
We received the first diagnosis in September 2021 while Covid was still running amok. His situation got worse before it got better. The first imaging test showed spreading to the liver. But one thing at a time. I found a surgeon to remove the tumor from his colon in early November. More tests followed, and then a successful surgery and 6 days in the hospital. When he was wheeled out of surgery, his first words to me upon waking were, “I need to pee.” That’s my dad. Always the basics. I was just happy to see him awake and well, and I breathed in a simmering, satisfying bolt of tears.
The next homework assignment followed. Find an oncologist. I made an appointment at the oncology dept of Beilenson Hospital and was scheduled to meet a doctor by the name of Roy who would become our rock and compass for the next two years. Roy maintained a positive demeanor and communicated with a refreshing clarity, friendliness and humor. My dad enjoyed our meetings with Roy and felt he was in good hands. It is critical to be in the hands of a competent doctor but equally important to the patient’s mental health to be in warm hands. Roy told my dad they’d be seeing each other for a long time. Little did we know what he meant. I doubt many cancer patients appreciate the long road that is cancer treatment and recovery. We yearn for quick fixes and easy answers.
Before they could remove the liver tumors, the doctors advised him to do a course of chemo to reduce the tumors so that they could remove them with a lower risk of complications. What followed were 12 series of treatments, each 4-5 hours every two weeks in early 2022. My dad pushed through the treatments like a champ with manageable symptoms. Almost without exception, the oncology nurses were hard-wired to provide exceptional care with laser beam focus and compassion, as well as occasional humor, while juggling a ward bursting at the seams with cancer patients. I applaud them. When the time was right, the doctors scheduled him for liver surgery, a massive intrusion into his abdomen to remove three tumors. Though it was a shockingly brutal experience, they did what they had to do, and my dad recovered within a month with a Frankenstein-like zipper down his belly. The head surgeon told him, “Go live your life!” I liked the positive energy but, with only a few minutes out of the operating room, I wondered about the timing.
The next two years were a combination of good news and bad. Over this time, my dad faced more chemo and radiation treatments as tumors re-appeared in various places, old and new, combined with a dizzying number of tests and doctor appointments. I earned a mini-PhD in healthcare, learning how to navigate bureaucracy and manage a cancer patient: Securing proper doctors for countless appointments; anticipating the papers and tests required for every check-up and procedure; going to dozens of blood and imaging tests; all the while tending to my father’s need to understand everything. I quickly learn what questions need to be asked and what tasks need to be completed in advance of every test and treatment. Nobody trains you for this stuff. You learn “on the job.” A typical month in my calendar often contained more appointments for my dad’s medical care than anything having to do with work. Strangely, our many hours together were quality time spent reminiscing about old times and lessons learned from the rough and tumble life that my dad lived. Some stories were familiar, others were new or with a new spin. The time together was bonding. The experience helped shed a new light on my father’s humanity.
I learned a lot about caring for someone and about myself. Patients need an advocate, especially elderly ones. Hospitals are under-staffed with over-worked doctors and nurses that don’t have the bandwidth to give unfettered personal attention to patients. Be prepared to ask questions. Do some homework before you meet doctors. Keep lists and maintain an orderly file of records. There is a wealth of information on the Internet. Don’t try to become an expert but come armed with some basic information so you can ask intelligent questions about your predicament and treatment options. I discovered that doctors often fail to make full disclosure of facts, perhaps due to mere neglect, overload or a subconscious urge to spare the patient all the dark details on the horizon. Sometimes, the health care system is an assembly line with health care professionals checking off the boxes, and if we stand aside like bystanders, things will get overlooked. Patient and caregiver must be alert, proactive, diligent and knowledgeable. Don’t be afraid to ask for help. Surgery wards, in particular, are like battle zones when booked with patients, making it critical to be continuously present in the first hours and days after surgery.
No health care system is perfect. With all its dents and rough edges, healthcare in Israel is decent. We are blessed with excellent doctors, nurses, technicians and staff, and we have been privileged to be in their care. Yes, the endless trail of paper and bureaucracy can be dizzying (and, until I got my bearings, I was a basket of nerves). For immigrants like myself, the language barrier creates a whole other set of challenges that are not fully appreciated by the system. Nevertheless, the system works. It requires a steady hand, an enormous amount of patience, clear communication and careful attention to details. And not once did the system require us to pay one shekel, other than trivial amounts for some prescriptions. The surgeries and treatments gave my dad time. How much time? Who knows. At 87 years old, time is a commodity measured in smaller increments that bear extraordinary value.
My personal discovery was one of duty and love. We all hope we’re ready to step up to the plate when duty calls. But we can never fully appreciate the rocky path ahead or how we’ll perform under duress. My dad let me be captain and navigator of his ship and assume responsibility for important decisions about his well-being. I think I did OK most of the time, though I admit to crumbling nerves and impatience on occasion. With my dad’s failing memory and inability to absorb facts, I learned to refine my communication with him by cherry picking relevant facts and calibrating the best times to tell him something and how to put the words together in an easily digestible way. My mental health was compromised for long periods for reasons that are incomprehensible; such is the mystery of our brains. I suspect that the unique demands of being a caregiver – the relentless battles, the highs and lows, and the need to remain focused and patient all the time – put stress on my system. It didn’t help that the rest of my professional and personal life did not take a holiday. Sleepless nights were routine. Everything in life became harder. This was not normal.
We feel love all the time. Hardly a minute goes by that I don’t feel the rays of love that I have for my kids, husband, parent, siblings and friends. Love is felt all the time in a way often taken for granted. We know it’s there simmering below the surface. But the magnetic force of our love — the force that makes our hearts glow and puts our love into action – erupts in times of need. Yes, duty calls, and we start the engines. But our love is the fuel that revs the engine forward and gets us over the mountain of turmoil ahead.