Coping with my father's terminal illness during a pandemic

It was the beginning of June when my father first showed concerning symptoms. After several weeks, we learned that he had a very aggressive terminal brain cancer called glioblastoma, the same illness that killed Sen. John McCain and President-elect Joe Biden’s son Beau. In this condition, the average life expectancy is 18 months, while common symptoms include headache, personality change, blurred vision, difficulty walking and confusion.

And for many, including my father, delays in medical care during the pandemic also means delays in diagnosis. His hospitalization was delayed for several weeks due to fears of going to the hospital because of the coronavirus pandemic.

“One of the most concerning trends that we in the world of neuro-oncology have seen is that people have been delaying or avoiding going to the hospital to receive care for their brain tumors," said Dr. Michael Vogelbaum, chief of neurosurgery and program leader of the Moffitt Cancer Center Department of Neuro-Oncology. "Cancer hospitals, in particular, have been some of the safest environments in which to receive care. Most new cases of COVID are acquired in the community, not in a hospital."

As if a cancer diagnosis amid the pandemic weren't enough, glioblastoma is an extremely aggressive form of cancer that isn't curable.

“While we have made great strides in understanding the underlying genetics and biology of glioblastoma, these advances have not yet let to effective therapies, despite multiple clinical trials of promising new treatments,” Vogelbaum said. Part of the challenge, he added, is that the brain is protected by a barrier, which may prevent therapies from reaching cancerous cells.

As a first responder myself, working as a psychiatry resident in southern New Jersey, this situation has presented further challenges, as I had to limit my own contact with my father due to the pandemic. But despite everything my family has been through, we have each learned useful coping strategies along the way.

Do things for yourself

This is going to be hard, with moments of weakness and intense emotions. In these moments, my brother, Dave, said, “It is of upmost importance to remain as calm as possible.”

I find it helpful to ask one simple question: What can I do to make myself happy while still being involved?

During this time, it is important to remember your own needs. With realistic measures amid the pandemic, it might be helpful to get yourself involved in anything that will make you happy. For me, I started taking singing lessons. By having extraneous activities, it can serve as a positive and healthy distraction.

Honor your family member

In any downtime, you could honor your family member by doing things that you know will make them proud. This can give you a sense of self-worth, as you will be doing everything you can to make a lasting mark before it’s too late, leaving less chance of any feelings of regret.

What you decide upon will be dependent upon your relationship with that family member.

My father is extremely proud whenever I tell him about a career accomplishment. Recently, I won a national scholarship through the American Medical Association. I will be donating the entire prize of $2,500 to the American Brain Tumor Association in his honor. Since his diagnosis, I have been working hard to continue to accomplish major career milestones so that I can make him even more proud. In the process, this may provide comfort to your family member, while also giving yourself a sense of pride.

Another way to honor your family member is by simply spending time with them in any way that you can. “I have chosen to cherish our time together and create new memories," my sister Alison said.

Gauge if you need alone time or prefer to be with others

During this time, some may not want to talk and prefer to be alone, while others may feel the opposite.

In my experience, being alone gives you more time to become consumed with your thoughts and negative emotions. As such, I find it is important to find a balance between healthy distractions in your home environment vs. complete focus on the current situation.

For me, since living alone is challenging, I find being with someone comforting, regardless of the conversation.

Therapy

Therapy can not only help with your mental health, but it can also help with any potential work-related stress that comes along with caring for a family member with a terminal illness. While some employers may be supportive, others may be stricter or less flexible in their policies. If there is work-related stress, a therapist can advocate on their patient’s behalf to get them accommodations. This may come in the form of sick or excused days off, lowering work responsibilities or supporting a more flexible schedule.

If you do not wish to have therapy, then it may be worthwhile to explain the situation to any doctor who knows you well, so that a letter requesting work accommodations may still potentially be generated if needed.

Another form of therapy that can be useful is pet therapy. My sister Courtney has seen the benefits of this. “I have an emotional support animal, and I have definitely been spending more time with him, allowing him to comfort me more in this difficult time,” she said.

An emotional support animal letter written by a doctor can be helpful and could offer cost benefits that would be useful given the financial strain faced by millions of families in the pandemic. With this letter, the Fair Housing Act (FHA) prohibits landlords from denying housing to or collecting additional pet fees from tenants. In addition to this, airlines often accommodate emotional support animals without extra fees, though some may not.

Explore virtual medical care

Currently, my father is still at his apartment. However, he is completely bed-bound and immobile.

People may naturally think the pandemic will only make medical care more difficult. However, it should be noted that virtual medicine -- including chats, videoconferencing and phone calls with your health care provider -- has increased greatly, and this will likely continue in the future. This can make a big difference for terminally ill patients who are immobile, because it will make treatment more accessible.

My father has likely less than 6 months to live. In the end, everyone will cope with their specific situation differently. However, for family members, time is the answer to healing.

Managing your expectations, staying positive and caring for yourself will be critical. Remember, you can only be your best for someone else, once you have done best for yourself.

Dr. Danielle Weitzer is a psychiatry resident and a member of the ABC News Medical Unit.