“I really want people who are caregiving for patients or loved ones with small cell lung cancer to know two things: one, be a squeaky wheel, fight and advocate; and two, ask for help for yourself,” said Kristen, a long-time supporter of the cancer community and caregiver to her mother, who lives with stage four small cell lung cancer (SCLC). “It’s not easy, it’s a full-time job. It’s hard on you and you need to take time for yourself, which feels impossible, but it’s important.”
Like many other diseases, SCLC does not just impact the patient. In many scenarios, there are partners, siblings, children and/or friends who may take on the role of caregiver.
Caregiver responsibilities can vary greatly from person to person, but some common ones include helping with decision-making, coordinating medical care and managing finances, providing emotional support and conducting research on behalf of your loved one.1
It’s important to remember that you do not need to navigate the caregiving experience alone. Creating a plan that includes taking good care of yourself, setting limits, and taking time to check in with family and friends are all great steps to take to keep your energy up.
If your loved one is undergoing treatment, they may need help traveling to appointments, taking their medications or managing the side effects of cancer or its treatment.
Here are a few ways you can help if you are able:2
For many people, the idea of caregiving is simple and natural – caring for someone you love. But that doesn’t mean it is easy. The level of support you provide is totally up to you, and it will depend on your schedule, other responsibilities and boundaries you decide to set. Before you make these choices, it may be helpful to create a list of all your daily to-dos and also speak with your loved one about what they feel would be most helpful.
“Kim does everything she normally did before, but she does require a bit more in handling of her affairs because she’s become unsure of her decision-making at times,” said Jody. “Whatever she needs, I always tell her, ‘Please ask me, I’m here to help.’ Sometimes it is coming to help her clean the house or doing the laundry, but overall it’s just being supportive and making phone calls she needs for information, that type of thing.”
There are plenty of ways to support your loved one from afar. A phone call, email or text to check in, helping out with research online or offering to talk to an insurance company can all be very helpful ways to participate in the care of your loved one.
“I don’t live in the city where my mom lives, so I have not been able to sit in the room with her and have conversations with her doctor about treatment decisions,” said Kristen, who faces the challenge of not always being able to hear medical advice from her mother’s doctor in real time. “That being said, I have supported my mom by providing her with questions that she should ask her doctor and reminding her to look at the pros and cons of each option she is given.”
“Even from a distance, caregiving can be incredibly stressful,” said Kristen. “For me, personally, I love to talk to people, reach out, find a friend, go for a walk. Because it is not good to sit inside and be stressed or lay awake at night. I always try to remember to listen to myself more.”
“I am responsible for a lot of things – I work full time and I have five grandkids, so we do a lot with them,” explained Jody. “My husband and I try to find balance spending time together because we’re always surrounded by people, and we try to get away when we can. That’s just the life of a crazy household!”
Caregiving may impact your ability to maintain your usual schedule and your focus at work, as these new responsibilities will introduce new routines and demands in your life.3 Consider keeping an open line of communication with your employer about your caregiver responsibilities. There may be flexibility and support options within your company that are worth exploring.
It is helpful to recruit other caregivers if the patient feels comfortable doing so. Having family and friends split responsibilities can help make caregiving more manageable. It is also important for caregivers to remain involved with other parts of their lives – for example, maintain a role in school, community functions, relaxing and taking trips.3
According to Kristen, getting your loved one’s immediate family – or even a small group of your loved one’s neighbors or friends – to help out can make a huge difference. If you’re faced with a decision to make regarding a treatment course or care plan, be sure that all stakeholders in your loved one’s life are involved and on the same page. That way, the tough decision-making process will not fall solely on your shoulders.
Keep in mind that family is not your only source of support. If you don’t have other family members that are closely involved in your loved one’s life, there are many other people who are going through similar experiences as you. You may also find comfort in reaching out to a licensed counselor or oncology social worker who can help you cope with feelings and worries. Many cancer support organizations provide counseling services for free, and it is usually only a phone call away.2
“It’s important to allow yourself to be vulnerable,” said Kristen. “I came to realize that there are a lot of people around the same age as me who are going through similar experiences. Having them on my lifeline to text and simply say, ‘This is crazy. What do I do?’ has really helped me.”
Even with a schedule and support, caregiving can still be overwhelming, so remember to keep investing in your own physical and mental health. There are various groups that offer social and emotional support, including:
Aside from just being supportive, Jody feels it’s important for caregivers to be an ally for people living with small cell lung cancer (SCLC) as they go through treatment. Taking notes and helping chart the care path are two ways to do that. Learn how this helped her sister, who lived with SCLC.
This information is for educational purposes only and should not take the place of talking to your doctor or a healthcare professional. The content included on this page does not constitute medical advice and should not be used for diagnosing or treating a health problem or disease. Please be sure to always consult with a physician or medical professional for questions about your medical condition.