Monday , July 02, 2018 - 10:40 AM
(c) 2018, The Washington Post.
My mom was diagnosed with Stage 3 urothelial cancer in India in June 2013. From then to when she died in December 2015, my brother and I flew thousands of miles between the United States and India, and spent thousands of dollars to get her the care she needed.
In most ways, our experience is similar to that of any family managing a loved one’s illness, except that for certain periods, we had to do it from afar. In that, too, our experience is not unusual. At this very moment, many immigrants and U.S. citizens are trying to balance their lives here with taking care of family members struggling with life-threatening diseases in our home countries. A phone call sends us rushing to airports willing the flights to get there soon and often reaching too late.
My brother and I arrived in Mumbai a few hours after our dad took his last breath in 2010, before an emergency surgery for a hip fracture. He’d had health problems for the last five years of his life, and my brother and I had taken turns at long-distance caregiving: My brother, a neurologist, went for every medical procedure, and I would follow to help our parents during the recovery period.
After he died, we asked our mom to come live with one of us. She declined, preferring her independence and life in Mumbai. She had always been healthy, walking most everywhere and eating sensibly. We settled into a routine where she stayed in India for most of the year and then made the long journey to be with both of us for a few months.
My brother and I are U.S. citizens, and my mom had a 10-year tourist visa for the United States, which made travel easier. For visitors from many countries, it can now be harder to get such visas.
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One day in 2013, my mom started getting low-grade abdominal pain, which did not lessen despite medications. After the pain got worse, a primary-care physician recommended a scan. It revealed a tumor that a biopsy found was cancerous. She needed to have a kidney and parts of her ureter removed.
My brother got on the next flight, and within days my mom had surgery. My brother stayed for a month and a half with her in a hospital, sleeping on a couch in her room, eating in the cafeteria and taking calls from patients in his own practice at night, when it was daytime in the United States. When my mother finally was discharged, my brother returned to his family and medical practice in Ashland, Oregon, and one of my uncles in India and his wife helped with her recovery. When she was well enough to begin radiation, I went to India for six weeks, stitching together vacation time, comp days and a few sick days.
In January 2014, six months after her diagnosis, her oncologist cleared her for travel, and she came to the United States. Her scans were clear, and we had a bit of a breather. That summer, my mom was due for a scan. She was staying with me, and we decided to get it done in Mumbai because my mom’s tourist insurance would not cover a scan done in the United States.
Once we got to India, she and I went for her scan. I returned a few hours later to get the results. I still recall how cold the room was and how cold my hands got. I read and reread the pages. The cancer had metastasized to her lungs. Tiny dots on the images.
My mom took the news with her usual grace and calm. Not once did she break down or get angry. She trusted my brother and me to take care of her. And as a woman of science - my mom had a master’s in chemistry and had taught high school chemistry until she retired - she hoped the treatments would work.
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She had to begin chemotherapy soon. The treatment would be exorbitantly expensive in the United States, where she wouldn’t have adequate insurance, but it was manageable in India. I took three months off under the Family and Medical Leave Act, which requires private employers with 50 or more workers to offer up to 12 weeks of unpaid leave each year. My supervisor and colleagues were completely supportive.
Because I work for The Washington Post, I was very lucky to have this option. Many people who work for small companies cannot take even unpaid leave with no threat of a job loss. And some immigrants covered by the act may be on visas or in situations that make it hard to leave the United States and return.
The three months passed in a blur of scans, blood tests and other exams, chemo sessions, hospital rooms and oncologist appointments. Having my mom’s friends and neighbors visit often was comforting.
When my leave ended, my mom and I returned to the United States. Her chemo was not complete, and it had not reduced the tumors in her lungs. Her Indian oncologist had given her only three months to live. In the United States, we could continue her chemo and search for other treatments.
My mother moved in with my brother in August and was able to get a green card sponsored by my brother, which meant she could get insurance to cover some of her chemotherapy and unrelated care such as dental work. While the tumors were not shrinking, at least they were not growing rapidly. The oncologists could not say for sure whether the drugs were helping or whether the tumors were just slow-growing, though the consensus seemed to lean to the latter.
Perhaps, we thought, we could get her into a clinical trial that might help. With the many hospitals and research centers in the Washington area, my mom came to live with me and join a trial.
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From October 2014 until she died 14 months later, my mom enrolled in three trials. She underwent painful biopsies, numerous tests, hospital stays and chemotherapy. In the midst of it all, we managed a fairly stable household routine. I would ask for early-morning appointments for scans and tests so I could race to work after they were done. Some days, I worked from home so I could get her to and from the chemotherapy sessions.
My mom did not suffer too many side effects, apart from fatigue. She cooked wonderful meals for us, and I took over during the weekends. When I was at work, she took walks when she felt up to it, read the daily paper and books, and watched TV. My brother called her twice a day, as did I, and he visited. Friends came over. Some weekends, we took the bus to the Target in Columbia Heights, where we browsed the wares. My mom loved bags and liked shopping for them. Over the years, I had bought her numerous bags, which she would promptly gift to her nieces and friends.
There were bad days, too, of course. The worst were the days when the scan results came in, because they never brought good news. The tumors were continuing to grow.
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I know my mom missed her home in India, her familiar routine, her family, friends and neighbors. It wasn’t easy for her at nearly 80 to adjust to a new country and a new life. But she never complained, never demanded to return and, when asked how she was, she would invariably say, “My children are here, and where they are, I am happy.”
Because my mom continued to seem healthy, we held out the hope that some treatment would work and that one day she could return to India, even if for only a few months. We held on to that even after she began coughing, losing her appetite and grew more tired. The last trial she was in, at the National Institutes of Health, was hard: The medication would give her chills that she described as ice inside her bones.
For Thanksgiving 2014, my brother, sister-in-law and their two young kids came to visit. In pictures taken then, my mom looks frail. But since I was used to seeing her every day, I had not noticed. My brother brought up the idea of getting a nurse or similar caregiver to watch over her while I was at work, to make sure she ate and took her medication for the cough.
But the morning of the day my brother and his family were to return home, my mom started coughing up blood, and we rushed her to the emergency room. The tumors were now much larger, and they irritated her airway, making her cough and exhausting her. Admitted to the hospital’s intensive care unit, she slept most hours and ate very little. Soon she slipped into unconsciousness.
We arranged with hospice care to move her back to my apartment with a hospital bed and morphine to keep her comfortable and an oxygen tank to help her breathe.
Although our mom never spoke again, we could see that she was much more relaxed away from the lights, sounds and constant movement in the intensive care unit. For four days, we watched over her, talked to her even though she was unconscious, changed her gown, brushed her soft silver hair and held her hand.
On the fourth night, she died, as my brother and I sat beside her.
My brother and I feel grateful that we could be there for our mom, that we could arrange for her to receive quality care and that our family could afford to pay for it. And we could do all this because of world-class hospitals and physicians in the United States, American laws related to health care and immigration, and supportive bosses and colleagues.
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We learned some lessons from this experience that may help others with sick relatives in far-off locales.
1. The travel insurance that many people buy when they visit the United States as tourists usually does not cover preexisting conditions. If your loved one is a U.S. citizen or has a green card, there are insurance programs, state and private, that may make treatments affordable. Medicare is limited to U.S. citizens, mostly those age 65 or older. Some states do not offer Medicaid, which serves people with limited income and financial assets, to non-Americans. In such cases, you will have to buy much more expensive insurance, which may not cover certain procedures and medications. Another option is to choose less-expensive treatment in the patient’s home country, as we did.
2. The United States grants a B-2 visa for travelers coming to this country for medical reasons, but it requires a lot of supporting paperwork. Some U.S. hospitals, such as New York’s Memorial Sloan Kettering and Minnesota’s Mayo Clinic, are known for attracting foreign patients, but you can also check hospitals in your region. There is no central government-run website for such information, but you can check private ones such as VoyagerMed.
3. Clinical trials do not impose a financial burden because treatment costs are borne by the institutions conducting the trial. The patient is assuming a risk that the drug may not work, that they will receive a placebo (or standard treatment) and that the drug will make things worse. The trials did not work for my mom, but some patients do benefit. There are medical requirements to join these trials, and it is tough for noncitizens and visitors with green cards to get into them in the United States. But there are trials in multiple countries, and there may be some in your loved one’s home country. To learn more, you can search an NIH directory.
4. Being away from family, friends and home is very hard for immigrants of every age, and more so for older adults. WhatsApp, the free texting, voice and video-calling service, is one of the best ways for them to stay connected. My mom texted and talked to her siblings, other family members and good friends every day. Separately, I had several Indian channels on my cable lineup. Every evening after dinner, we would watch our favorite serials.
5. If you need to return to your home country to help a loved one, use the leave offered by the Family and Medical Leave Act if it applies to your situation. It says certain employees can take three months off, without pay. Use it if you can afford to do so. Otherwise, cobble together sick days and vacation days, and telework if you have that option.
6. If you are the sole caregiver, as I was, try to take breaks, and ask your friends and family for help. My biggest regrets about this experience were the times when I was short with my mom or did not explain things clearly to her because I was stressed.
7. Most of all, be kind. Being in a foreign country is not easy, least of all for someone who is ill, fearful and sad. My mom spoke fluent English, was capable of exploring places on her own and was fully functional. Yet, there were things that tripped her up, such as how insurance payments work, how to get approval for treatments and where to go for scans and blood tests. Recognize that there is still your loved one behind the illness, and do your best to be kind.
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