If you have read our “ABOUT” page, you have an idea how we became a part of the Sandwich Generation. Over a decade ago we received a call from our dad (in-law) that he went to see his doctor because he wasn’t feeling well. They found he was anemic, which led to further testing. Ultimately the diagnosis was Multiple Myeloma.

As we boarded the next plane to Florida, every possible scenario passed through our troubled brains. The following morning, we had an appointment scheduled with the oncology doctor. We knew we had to prepare for the worse.

When the doctor walked into the room that morning, he did not bring an air of positivity with him. He explained that Multiple Myeloma was cancer centered in the bones. The prognosis was guarded and the suggested treatment was chemotherapy and radiation. A possible bone marrow transplant may be necessary down the line, but we would have to wait and see. The outlook was only a six-to-twelve-month life expectancy. That was a hard pill to swallow. It was also unacceptable.

Later that week, we again boarded a plane, but this time with our mom (in-law), headed back north. We had prepared the in-law apartment attached to our house for both parents to move in full-time. While the plane was in the air, we also arranged to drive our dad, who was too sick to fly, back north. Thus began the education and journey of being a healthcare advocate.

As a parent, you are always striving to make sure your kids are healthy. Trips to the pediatrician are often routine for check-ups or minor illnesses. This was especially true for us after raising six children. Becoming responsible for the healthcare and well-being of 75 year old seniors is a different matter altogether. The sheer number of doctors is often daunting; oncologist, cardiologist, pulmonologist,  primary care physician, and pain management specialist. It can be overwhelming.

The first step of this journey was to establish residency to take advantage of the local and state healthcare options. After some research, we found a general practitioner as the primary care physician, followed by the oncologist. We were fortunate to locate an exceptional oncologist/hematologist close to home and affiliated with one of the premier cancer institutes in the country.

Since that initial diagnosis, we have experienced additional crises. The following year, our mom was diagnosed with lung cancer and required lobectomies on both lungs. The silver lining was we already had a support system in place to manage this new crisis. Using all the doctors we already knew, setting her up as a new patient was an easy decision.

Managing doctors, treatments and prescriptions can seem like a full-time job, and some days it is. In our experience, it is much about routine. We set up an online shared family calendar linked to everyone’s cell phone. This allowed us all to participate and know exactly what was in the plan. We managed appointments closely, so they were on specific days of the week as much as possible. We accompanied both parents to meet with the doctors and developed a “first-name” relationship with all the medical staff.

Another important aspect of advocacy is being able to understand the conditions. Due to moderate hearing loss, our parents often could not hear or understand what the doctors were saying. Being able to “translate” and answer for the patient is critical to successful advocacy. Lots of research is also required to help understand the diagnosis, treatment and even what to expect as side-effects. Do not simply accept what the doctors tell you. Look everything up.

Monitoring medications can be a matter of life and death, literally. When taking a blood thinner to prevent a pulmonary embolism, introducing prednisone can have a disastrous effect. One should expect the prescribing physician, after reviewing a current list of medications, to be aware that prednisone increases the INR level of the blood thinner. Sadly, they didn’t but it was something we found out due to researching drug interactions. Fortunately, we fought to be able to test our parents INR levels at home which allowed us to closely monitor and control the situation.

Daily medication distribution also became part of the routine. We decided this was necessary when we began finding random pills on the floor or accidentally left in the pill dispenser. With small children often running around the home this was a major concern. We also had several episodes of minor falls when our mom would try to pick up pills she had dropped. Most recently, it has become a memory issue, “Did I take my pills?” is often heard daily , sometimes several times within an hour or two. While it may be frustrating for us to hear this repeatedly, you must understand it is just as frustrating for the seniors experiencing this.

Through all the trials we have experienced, we would still do it all over again. Advocating for seniors is incredibly important as they are often overlooked and “written-off” as our dad had been in Florida. Happily we are approaching the ten-year anniversary of his initial diagnosis and he is in near-remission. While much of the success is attributed to the patient and medical team, the advocates also deserve some credit. We listened, we learned, we worked, we worried, and we fought. They key is to never give up.