Advice for mSCLC Caregivers: What You Need to Know

Ask for help. “If you are the sole caregiver, you’ll experience a lot of burnout,” says Michelle Wulfestieg, executive director of the Southern California Hospice Foundation in Costa Mesa, CA. “MSCLC is a disease that often requires full-time, around-the-clock caregiving.” She recommends that you ask a friend or family member to create a schedule where someone else comes in for a couple of hours each day so that you can go grocery shopping and otherwise take some time for yourself. “Ideally, you’ll want to go on a rotation with other family members, so you’re not the sole person,” she says. If that’s not possible, you can also look into hiring someone for at least several hours each week for respite care. “You don’t want a situation where your loved one starts to feel guilty and like a burden, or you begin to resent them,” she stresses. One resource is the ARCH National Respite Network. 

Let go of the small stuff. Now is not the time to worry about whether the house is a mess, or you don’t have time to make dinner. “When a loved one is diagnosed with mSCLC, you’re given a gift in a weird way to acknowledge the inevitable,” says Kristen Santiago, a senior director of care partner initiatives at LUNGevity Foundation, whose own mother died of mSCLC in 2022. “It’s a chance to think about how you can live each day together in the most meaningful way. Who cares if there are dirty dishes in the sink if you can sit together and have fun.” 

Have hard conversations. As a caregiver, you may end up being the one to talk to your loved one about their end-of-life wishes. “You’ll need to discuss things like how they want to die, and whom they want around them,” says Santiago. While her mother resisted this conversation at first, Santiago found success with a program called Storyworth. Her mom received questions every month that she typed responses to, and at the end of the year, they were printed in book form. “It provides a lot of the answers to the questions you may want to ask,” she explains. 

If you have children, the conversation can be just as challenging. “We tried to normalize what would happen with my mom, including her death, with our kids,” says Santiago, whose children were 4 and 6 years old when her mother died. “We watched a lot of Lion King and talked a lot about the circle of life.” Another children’s book she recommends is Lifetimes: The Beautiful Way to Explain Death to Children. While these conversations are challenging for everyone involved, it’s important to be direct, open, and honest with children, adds Nguyen. “Give children the opportunity to ask questions,” he urges. “You also want to be sure that they know you or someone else in the family is there to help them.” Don’t be afraid to bring in a social worker, nurse, or other medical professional, he stresses. They can help to guide you through this process. 

Prepare for the future. Right now, the 5-year survival rate for patients with mSCLC is 9%. There are newer treatments like targeted therapies and immunotherapies to help you live longer than ever. But it is still important to make sure all legal and logistical matters are wrapped up well in advance, notes Santiago. Here are some things to keep in mind:

• Know all your loved one’s passwords. That way, if they are abruptly hospitalized – or if they unexpectedly pass – you’ll know where everything is. “It gives everyone peace of mind to know who to call, and where to find things,” points out Santiago.
• Get their health documents in order. There are two main ones. A living will is a legal document that tells doctors how your loved one wants to be treated if they can’t make their own decisions. The second one is to appoint a health care proxy. This is like a power of attorney form but for health care. Your loved one will name someone to make health care decisions for them if they can’t do it themselves. It can be done with, or instead of, a living will. 
• Take care of your own finances. This might sound odd, as your focus is on your loved one. But if you share things like bank accounts and credit cards, you’ll want to figure out what happens to those after your loved one passes. “I know caregivers who lost access to all their credit cards because their loved one was the primary account holder,” says Santiago. “You’ll want to make sure you’re not automatically cut off from all finances once the inevitable happens.”

Remember, it’s OK to be stressed, reassures Santiago. “Caregiving is one of the most difficult tasks you’ll face, especially if you’re part of the sandwich generation and dealing with your own family and responsibilities,” she says. Groups like LUNGevity offer resources, including support groups, to help you cope. Don’t be afraid to reach out.