Support and Resources for Caregivers

Support and Resources for Caregivers

For people with small cell lung cancer (SCLC), family members and other caregivers play an essential role in their support system. And as a caregiver, you and your health are important too.

Fulfilling the role of a caregiver can take a lot of your time and energy. “You’ve got to be 100% positive, caring, loving, understanding, available to be there when they just want to talk and when they need help,” said Jody, who cared for her sister Kim throughout her five-year battle with cancer. Jody admits there were hard days, and the experience overall can be emotional.

Caregivers often juggle their responsibilities alongside managing home and family life, jobs, education or other activities, making it difficult to find balance in their own lives. It is not always possible to feel positive – in fact, it’s okay not to be positive all the time. It’s normal to feel up and down in your emotions. Fortunately, there are resources that provide information, support and comfort to help you care for a loved one through the challenges of SCLC.

Challenge: Managing the symptoms and side effects of SCLC and its treatment

Palliative care, also sometimes referred to as comfort care, supportive care and symptom management, is used to prevent or treat certain symptoms of any type of disease, including SCLC. Palliative care can help ease physical symptoms as well as emotional problems related to disease or its treatment.1

It’s important to remember hospice and palliative care are not the same thing. Although palliative care may be used in hospice, this type of assistance differs from end-of-life care because it can be provided at any stage of a patient’s experience, including right after a diagnosis, during treatment or after treatment ends and a patient is looking to continue day-to-day activities.

For more information about how to receive supportive care, visit LUNGevity’s Palliative Care site.2

Challenge: Feeling like no one understands what you’re going through

While caregiving demands a lot of sacrifices, it’s important not to neglect your own emotional and physical health needs. The more you take care of yourself, the better positioned you will be to care for your loved one. This can include finding your own support system of people who understand the challenges you’re facing. This may also include keeping your doctor appointments or time with family and friends. Your health and well-being are just as important during these difficult times.

Caregiver communities and support groups, available in-person and online, can be a great way to connect. Organizations like LUNGevity will even match lung cancer caregivers with LifeLine Support Partners – volunteers who have walked the lung cancer path and are available to mentor others who need emotional support.3

Challenge: Providing transportation to get to all the appointments

Traveling and coordinating trips for healthcare appointments can be a lot for you to manage. “The hardest part with navigating the rides to treatment probably was during my brain radiation because I had to be there every day for five or six weeks. And I could not drive myself and did not trust myself to drive at that point,” recalled Annette, who has lived with SCLC for close to three years.

If you’re assisting with transportation for someone who lives with SCLC, the need to pack and keep track of medications and other medical devices can add an extra level of pressure. To help, the GO2 Foundation for Lung Cancer recommends bringing copies of the patient’s medical records, a list of doses and frequency, in addition to emergency medical contact information and a list of places you can get care on the road.4

To make preparing for your next trip easier, you can also print out this travel checklist from LUNGevity.

Challenge: Tobacco usage

If you or your loved one find cigarette smoking to be a worry or concern, there is help. For more tips to help yourself, a family member or a person you’re caring for with SCLC quit tobacco use, visit the GO2 Foundation’s “Quitting Smoking after Diagnosis” page.5  For some people, smoking can be a difficult topic to talk about with your loved ones. Some people have shared feelings of anger, frustration and sadness when urging a loved one to stop smoking. Feel free to talk with the doctor or nurse about how best to support a loved one or to stop smoking yourself. What is important now is to be focused on your health, in partnership with your healthcare team, friends and family, to do what works best for you and your loved one facing SCLC.

Challenge: A loved one has decided to end treatment.

If your loved one has reached a point where they have decided not to pursue further treatment, caregivers can play an important role in helping with end-of-life planning. While no one wants to think about this stage of the journey, taking steps now to address hospice decisions, last wishes and finances can make for a smoother transition during this time. What is important is try and have conversations along the way about how your loved one may be feeling about planning for the future or end-of life. Sometimes, families are not ready to let go but the person living with SCLC may be ready to transition from active cancer treatment to hospice where the focus is on comfort care. It’s important to respect the wishes of a loved one, especially when a healthcare team believes continuing treatment will not help the situation. Remember that in these specific cases, ending treatment for hospice does not necessarily mean that the patient’s time will be cut shorter.

If you’re not sure where to begin, start with LUNGevity’s helpful End-of-Life Planning resources, which also include emotional support for yourself to help cope with grief and loss.6

References
  1. LUNGevity Foundation. What you need to know about small cell lung cancer. https://lungevity.org/sites/default/files/request-materials/LUNGevity-SCLC-booklet-051519.pdf. Updated November 2020. Accessed April 8, 2021.
  2. LUNGevity Foundation. Palliative Care. https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/palliative-care. Updated March 17, 2021. Accessed April 8, 2021.
  3. LUNGevity Foundation. LUNGevity LifeLine. https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline. Accessed April 8, 2021.
  4. GO2 Foundation for Lung Cancer. Navigating lung cancer 360º of hope fifth edition – fall 2020. https://go2foundation.org/wp-content/uploads/GO2_Foundation_Patient_Education_Handbook_5th_Edition.pdf Accessed April 8, 2021.
  5. GO2 Foundation for Lung Cancer. Quitting smoking after diagnosis. https://go2foundation.org/what-is-lung-cancer/coping-with-diagnosis/quitting-smoking-after-diagnosis/. Accessed April 8, 2021.
  6. LUNGevity Foundation. End-of-life planning. https://lungevity.org/for-patients-caregivers/caregiver-resource-center/end-of-life-planning. Accessed April 8, 2021.

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.