Behind the Scenes:
The Experience of Being A Caregiver
Although being the caregiver for someone with lung cancer is a very different experience than having the disease, it gives caregivers an intimate look into having lung cancer and the challenges that come with it. There are many lessons to be learned. So, I approached a couple of caregivers and asked them to talk about their experiences and if they had any advice to share with others who are going through the same thing.
I spoke with Robin DiPaolo, who has been the caretaker for someone with lung cancer not once, but twice. The first time, it was for her mother, Hildy Grossman, the founder of Upstage Lung Cancer. Hildy discovered her lung cancer at an early stage, by accident, and was able to treat it only with surgery. Robin works as a hairdresser, and her mother’s diagnosis was her first exposure to cancer from someone close, in her family and with someone she loves. She said she had had a number of clients who went through a cancer diagnosis, as well as some who were serving as a caretaker to someone in the family.
Looking back, Robin explained to me how important it is to take a minute to process your emotion when you first hear about a cancer diagnosis. Clearly, that’s true for the patient but also true for those in their support system. For Robin, caring for her mother proved difficult because she lives 1,000 miles away, in a different state than her mom.
“That was hard,” Robin said, adding that “the distance is horrible,” and it was difficult not to be able to be with her for every doctor’s appointment. Although her mother’s treatment was successful, Robin pointed out that it is still difficult for her mother to live the rest of her life with the concern that lung cancer could come back.
Five years later, Robin once again found herself serving as caregiver to a good friend with advanced lung cancer who unfortunately lost his battle. His symptoms were initially misdiagnosed as a sinus infection but turned out to be a grapefruit-sized tumor that spread to his lungs. She wanted to help. She quickly discovered that there is “a lot of detail in caring for someone who has cancer.” Many of Robin’s caretaking efforts centered around helping with her friend’s treatment. She attended doctor’s appointments with him, took notes and was there to help her friend remember all of his questions. She took care of him after surgery, stayed with him as part of a care team, helped with managing medications, monitored his pain levels and eventually decided when it was time to call hospice. She also helped with the emotional aspects of the disease. She tried to help by trying to keep a positive outlook and by making him laugh.
Robin said a frustrating part of being a caregiver revolved around the difficulty of finding information. For example, she said she had to become a detective while serving as her friend’s advocate in navigating insurance issues and researching the best diets for cancer patients. She added, “There just isn’t enough information for caregivers. I wanted there to be a packet of useful information to take home from the hospital when a loved one first got diagnosed with lung cancer”, she said.
Mala Shah mentioned additional issues. She served as a caretaker for her husband who had an
inoperable neuroendocrine tumor. At first, she said that her husband “didn’t want anyone to take care of him” because it felt too much like acknowledging the disease. To avoid additional stress, Mala focused on taking care of things around the house, and having water bottles and tissues placed throughout the car and house to help her husband with intense bouts of coughing. She also served as the notetaker during her husband’s appointments.
As the disease progressed, and her husband transitioned to the hospital for much of the last six weeks of his life, caregiving took a different form by “being in the hospital 24/7, unless someone else was with him.” She continued taking notes in doctor visits as well as other medical staff to help create a summary of his recent treatments for anyone new who came to provide care. She said her key effort was in supporting his medical decisions, including adding massage and acupuncture as part of his treatment, and continue them when he realized how much they helped him feel comfortable.
Another person I spoke with said she had been caring for her father-in-law when he was diagnosed and while he was living with her and her husband. She said, from the start, it was a difficult diagnosis. “I was the first to hear from the ER doctor.” She called an ambulance when he was struggling to breathe. “It gutted me when I heard his diagnosis,” she said. “My husband was traveling for work at the time, so I was the one who had to tell him the bad news.” After that, she became the medical proxy for her father-in-law, taking responsibility for most aspects of his care. She said, “I was well versed, previously, in navigating the medical care of a loved one. Physically, I didn’t mind doing whatever was needed,” she said. “I was happy, actually, because I loved my father-in-law, and he loved me very much. But I struggled with navigating emotional issues that came up, including a strained relationship between my husband and his father. My husband resented his dad for adding more to the burden of our family life with three kids, and for making me, his wife, take care of him.” She explained that, “I come from a culture of unconditionally taking care of your elders and being there for them.” She agreed with her husband that her father-in-law could also be difficult because of his approach to treatment. “He was pretty headstrong and just didn’t really listen to doctors and the advice he was given. He did what he wanted,” she said. “That was the most difficult aspect of caring for him. “I felt I was always trying to get him to see what was best for him, but he wanted to do things his way.”
All three caregivers had advice for anyone who finds themselves serving as a caregiver to someone
with lung cancer. Here are some suggestions:
- Order an excellent free book for caregivers, “Lung Cancer Choices” from Caring Ambassadors,
- Keep a journal and document everything related to the illness.
- Find information to look for clinical trials at the American Lung Association: Find a Trial.
- Find lung cancer organizations that provide direct support for patients and their families (see LUNGevity, GO2 Foundation for Lung Cancer, The American Lung Association.
- Gather other supports for yourself as you try to help your loved one. Being alone with the care, responsibilities and emotional challenges can be overwhelming without support for yourself. You’ll need and want people who can care for you. Don’t be afraid to ask for help.
- If you aren’t able, try to find someone who can help advocate for the patient in medical situations. That might include other family members, friends or clergy. If you feel treatment suggestions aren’t the best, having an advocate accompany you to visits can be a big help.
- Respect the dignity of the patient as you offer your suggestions. Patients and caregivers both need a voice. Be aware that having a voice is important and being able to listen is important.
- Consider discussing palliative care and hospice with the doctor and loved ones if the time comes. While this can be the most difficult part of caring for someone, as well as for yourself, it can provide care and comfort to all.
As Robin said, caring for someone with a serious illness like lung cancer “changes you. You’re never
going to be the same.” As she reflected, “my caregiving experiences, both positive and negative,
taught me about resilience and being strong.” She hopes that she is able to pass that on.