A caregiver for someone with advanced lung cancer has a big job to do. You may wear many hats, from home health aide to chauffeur to support system. Your role can change many times as your loved one goes through treatment, if they go into remission, and if the cancer gets worse.
Because most people with cancer aren’t in the hospital most of the time, home care has become more important than ever. A family member, partner, or friend who serves as a caregiver becomes an essential part of their loved one’s health care team.
At the same time, it’s important to let the person with lung cancer take the lead in voicing their needs and making decisions.
Don’t Go It Alone
Because lung cancer often has few symptoms in its early stages, people often aren’t diagnosed until it’s advanced. When someone has stage III or IV lung cancer, that means the cancer has spread beyond their lungs. Along with symptoms like coughing and trouble breathing, they may have pain and fatigue. They might lose weight, and have nausea due to treatments like chemotherapy and radiation.
This means your loved one could need assistance in several areas of their life, including medical care, emotional support, and daily help around the house.
To make sure their needs are covered and to avoid burning yourself out, round up a team to help. Family and friends can provide meals, run errands, or just spend time with your loved one to give you time to recharge. Set up a list or spreadsheet, or use an app like SignUpGenius or Lotsa Helping Hands to gather and organize your caregiving support team.
Family and friends have their own busy lives, though. So don’t feel guilty if you need to hire someone to do certain tasks, like home maintenance or cleaning, when possible.
How to Help With Medical Care
Let your loved one take the lead in their care as much as possible. Talk with them about their goals: What do they want to accomplish? What side effects are they OK with? Do they want to join a clinical trial, where they’ll have access to experimental medications and treatments?
Get to know the doctors, nurses, and others on the health care team so that you feel comfortable asking questions. Feel free to ask lots of questions during appointments, but encourage your loved one to speak up first. Let them do most of the talking. If you want a one-on-one conversation with the doctor, make a separate appointment.
You might also support your loved one by:
- Taking notes during medical appointments to help them remember important points
- Keeping track of appointments and medication schedules
- Providing rides to and from doctor’s visits
- Keeping a record of symptoms
- Keeping track of instructions for treatments like chemotherapy
- Asking medical staff to teach you how to do medical tasks they’ll need after leaving a hospital, such as giving shots or helping with catheters
You’ll also likely need to help with the financial and legal parts of your loved one’s health care. When you run into questions, you can turn to specialists like:
- Patient navigators, hospital staff who guide patients and their families through the health care process
- Social workers and insurance case managers, who can help with insurance and billing claims and legal issues like identifying a health care proxy.
To make sure your loved one gets the care they want, it’s important to discuss an advance directive. That’s a legal document that spells out their wishes for health care, including:
- If and when they’d choose to stop getting treatment
- Under what circumstances they do or don’t want to be resuscitated
- Where they want to get end-of-life care, if needed – in hospice, at a hospital, or at home
How to Help at Home
Cancer and its treatments leave your loved one with less time and energy to deal with the tasks of daily life. So a large part of what a caregiver does takes place at home. Along with helping with household chores, childcare, personal care, and other daily tasks, you’ll also need to deal with side effects that result from cancer and its treatment.
Nausea and loss of appetite often go along with advanced lung cancer. Encourage your loved one to eat, but don't nag or pressure them. It may help to:
- Serve six to eight snacks or small meals a day instead of three big ones.
- Serve foods cold or at room temperature if the smell of food is unpleasant.
- Offer smoothies or milkshakes instead of solid food.
- Offer plastic forks and knives if metal flatware tastes bad.
- Make eating a social occasion – sit with them and enjoy a meal even if they don’t feel like eating.
Your loved one’s doctor can refer you to a dietitian who has worked with people who have cancer. Health insurance may cover the cost.
To help your loved one deal with fatigue:
- Help them set up an agenda of activities for the day, so they can focus their energy on the things that are most important to them.
- When they need to rest, tell friends they’re not up for visitors and let calls go to voicemail.
- Exercise eases fatigue from cancer treatment, so if their doctor approves, take walks with them or help them do range-of-motion exercises.
Make sure your loved one’s doctor knows about any symptoms or side effects they’re having.
Their doctor or others on their health care team can also refer you to home care services, which help with personal care, basic health care, and more. Some of these services may be covered by health insurance. Hospice care can be done at home, too.
How to Provide Emotional Support
Dealing with advanced lung cancer can make your loved one feel stressed, anxious, afraid, angry, or sad – or all these things at once. And there’s often a stigma attached to lung cancer, since it’s linked to smoking. That may bring up feelings of guilt or shame.
Gently invite your loved one to talk about their feelings and concerns. But don’t try to force them to talk before they’re ready. Listen without judging their feelings. It’s OK to point out self-defeating thoughts, but don’t tell them to “think positively” or “cheer up.”
Encourage them to join a lung cancer support group, if they’re up for that. If they seem depressed or anxious, talk with their care team about what you’re seeing. They can refer them to both social support and mental health resources.
As they’re able, help them stay involved in activities they enjoy. Don’t focus so much on caregiving that you don’t take time to enjoy special moments with your loved one. Dealing with challenges together can bring you closer and help you both feel more hopeful.
How to Take Care of Yourself
Caregiving is physically and emotionally draining. So to be an effective caregiver, you need to protect your own well-being. Take some time off every day to do something you enjoy. Stay connected with your friends. Get some physical activity, and/or relax with techniques like yoga or meditation.
Consider getting help for yourself via a support group or individual counseling. The American Cancer Society has a database of support groups and forums for both people with cancer and their caregivers.
Caregiving can affect your work life, resulting in absences and missed hours. Sometimes it becomes a full-time job. If you’re employed full-time, you may be entitled to up to 12 weeks off each year to allow you to care for a seriously ill spouse, parent, or child through the Family and Medical Leave Act (FMLA). While not all companies offer FMLA leave, you may be able to get unpaid time off.