Tips for SCLC Caregivers
“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.
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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.
How can I help manage my loved one’s treatment and care?
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:
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- Help your loved one prepare for medical appointments. This type of support can take many forms. Depending on your personal health and schedule, you may decide to travel with your loved one to their appointment. You could also help by writing down a list of questions the two of you would like to ask. Lastly, you can assist your loved one – either in-person or over the phone – with filling out forms or taking notes during conversations with their healthcare team.
- Do some online research for your loved one. One of the best ways to support your loved one is by helping them with research. You are likely not going to get all the information you need in a doctor’s office. A good place to start is by asking the doctor or nurse which resources they’d recommend using to learn about your loved one’s diagnosis and care options. You can also create a quick list of organizations that help with medical care if your loved one may need home healthcare or financial assistance.
- Learn how to help with physical care. Depending on your loved one’s diagnosis, they may need help with physical activities such as dressing, bathing or cooking. Keep an open dialogue with your loved one about their physical abilities so they can let you know which tasks they might need help with.
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.”
How can I support my loved one if I’m not physically nearby?
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.”
What should I do if I’m feeling overwhelmed about being a caregiver?
Be kind to yourself and set your own boundaries.
Remember that it is okay to set limits – each and every person deserves boundaries. When you feel tired or anxious, take a break to re-focus. For some, this could mean taking a day or a weekend to decompress; for others, taking a couple 10-minute breaks throughout each day to go for a walk, call a friend or exercise can go a long way. Another way many caregivers decrease stress is by writing in a journal, which provides a private place to let go of overwhelming feelings, list priorities or problem solve.
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“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.”
If you have a job, a partner or kids, set realistic expectations.
“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.
Don’t be afraid to ask for help should you need it.
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.
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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.
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“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.”
If I do choose to reach out to others, how should I go about doing it?
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:
- LCFA’s “The First 7 Steps”, a resource that guides you through important first steps following a lung cancer diagnosis. This guide includes helpful lists and resources to assist you in creating a personalized action plan, at your own pace, for your journey with lung cancer.4
- GO2 Foundation’s Lung Cancer Living Room, an education and support series that brings hope to patients and their loved ones. The Living Room features livestream conversations with lung cancer physicians and specialists covering everything from early detection and treatment options to taboos and stigma. Please note that in response to the coronavirus, these events are being held virtually until further notice.5
- LUNGevity’s Resources for Caregivers page, which outlines a selection of resources that can connect you with financial, pharmaceutical, legal, employment and transportation assistance, in addition to information about nutritional care, lodging and respite services, among others.6
- CancerCare® Support Groups, offered both in-person and online, which are led by professional oncology social workers who offer support and guidance for cancer patients, loved ones and people who have lost a loved one.7
- Cancer Experience Registry®, a unique online community that allows caregivers and patients to share their experiences, identify and discuss issues impacting their lives, take surveys and learn from one another.8
Small Cell Lung Cancer Caregiver Best Practices
“Don’t let them go through this alone. Surround them with love, support, family.”
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.
The opinions and views expressed in this video are those of the speaker only 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.