So far in our Lung Cancer Awareness Month series, we’ve covered what asbestos-related lung cancer is, as well as what to expect if you or a loved one is diagnosed. This week, we go into what it is like to be a caregiver for someone with asbestos-related lung cancer.
Caring for a loved one with lung cancer or mesothelioma can be a painful and emotionally draining experience. You may feel overwhelmed and conflicted by the wide range of emotions you feel. It may feel impossible to navigate this new role you find yourself in.
While the road ahead may seem daunting, there are ways to ease what you may feeling, take care of yourself, and still be the caregiver your loved one needs.
Responsibilities of a personal caregiver
Cancer caregivers can come in many different forms. A companion or spouse who lives in the home may take on full-time care duties, devoting innumerable hours per week to caregiving. Friends and family members may provide supplemental support on a more limited basis.
Both types of caregivers are vitally important not only for your loved one but for each other. Knowing you are not alone can be a source of support and strength.
When you’re a caregiver, it can feel like you’re playing endless roles at the same time – a chef, chauffeur, housekeeper, personal shopper, medical assistant, dog walker, etc. Everyone’s life is different and needs will vary. But these are some of the responsibilities of a typical caregiver:
- Personal care, such as bathing, dressing or shaving
- Medical care, such as changing a bandage or giving an injection
- Household chores, such as cleaning, cooking and laundry
- Making medical appointments
- Giving rides to appointments
- Communicating with the healthcare team
- Providing emotional and spiritual support
- Assisting with insurance and financial issues
- Taking on tasks around the house like cleaning, home maintenance, paying bills,
- You may also be in the position to make decisions about treatment, end-of-life care, and legal and financial wishes.
Taking care of yourself
Taking care of someone else’s needs 24/7 can take its toll. And even when your heart knows you’re doing what’s best, it’s also perfectly OK to not feel OK.
It’s normal to feel a wide range of emotions as you watch your loved one’s condition change and your life change at the same time.
- Anger. You may feel anger and even “lose it” once or twice while providing care.
- How to cope: Recognize you are only human and offer yourself the same forgiveness as you would to others. Find caring and supportive people who will listen to you and allow you to vent.
- Anxiety. When things feel out of control and the path to getting back-on-track isn’t clear, anxiety rears its head. Feelings of fear, dread and uneasiness may occur. You might feel restless and tense and have a rapid heartbeat.
- How to cope: Pay attention to your anxiety—it is our body’s early warning system that something isn’t right. When you feel anxious: Stop. Breathe. Keep breathing. Pray. Meditate. Make some tea. Anything that will give you a break from what is happening in the moment.
- Irritability. When tired and stressed, it is harder to stay in control of the things we say and feel. Feelings can go up and down very rapidly. We can lash out at the littlest thing because we have no reserve.
- How to cope: If you find yourself feeling cranky and irritable, you probably need a break. You also may need to get some rest, as we are in less control when tired. Often we will turn to alcohol or our favorite junk food to reward ourselves when feeling this way. It’s more beneficial to keep a journal or talk with a friend or professional to let off steam.
- Depression. Feelings of hopelessness or helplessness, trouble facing the day, inability to sleep–these are all common among caregivers experiencing depression.
- How to cope: Depression is treatable and should be taken seriously. Professional help is available. Talk to your physician if you think you might be depressed, join a caregiver support group, find a counselor who understands caregiving, and ask for help from friends and family. Exercise. Moving your body is a proven way to relieve some of the symptoms of depression.
- Guilt. It’s common to feel guilt for many reasons – feeling like you’re not doing enough, being too impatient, thinking your own needs are selfish, or thinking it is your fault if something goes wrong.
- How to cope: You need permission to forgive yourself. You can’t be perfect 24/7. It’s impossible to be in perfect control of how you feel at all times. We all carry around a lot of “shoulds,” such as “No one will do as good of a job as I do, so I have to be here all the time.” Or “If I leave and something happens, I will never forgive myself.” Consider changing guilt into regret, “I’m in a difficult situation and I have to make difficult decisions sometimes.” “I regret that I am human and get impatient sometimes.” “I am doing the best I can in an impossible situation.
- Jealousy. You might feel jealous of others who have it better than you in your current situation. For example, siblings who aren’t doing their share of the help, friends who are able to go out and do things you can no longer do, or others living comfortable lifestyles while you’re struggling to pay medical bills.
- How to cope: It’s okay to admit to being jealous. Because things are not fair, we often have flashes of resentment and envy at other people’s good fortune compared to our own. Jealousy is a problem when we wallow in it and prevent ourselves from enjoying the things we DO have. Focus on what you do have, whatever that may be, and find a place in your heart for gratitude.
- Loneliness. It is easy to lose a sense of yourself when you are isolated with no one else to talk to. And you may even find that friends and family stop calling.
- How to cope: Make it a priority to get out of the house and do something that brings you joy. Enlist the help of respite or daycare programs so you can have peace of mind while you step away and refuel.
You may feel like your own needs aren’t important or that there just isn’t time for yourself. But caring for yourself helps you be at your best so you have the physical and emotional strength to take care of your loved one. You may not even notice warning signs that you need to take care of yourself.
Do any of these sound familiar?
- Not getting enough sleep
- Unhealthy eating habits
- Lack of exercise
- Working through your own illness
- Putting off your personal appointments
It’s no wonder that caregivers are more likely to have high cholesterol, high blood pressure, a tendency to be overweight, and suffer from clinical depression. It can be so easy to get caught up in the caregiving routine that you don’t even know how to “have fun” anymore. Here’s a place to start. Try to add these three types of activities into your life:
- Activities with other people–lunch with a friend
- Activities that give you a sense of accomplishment–exercise or a project
- Activities that make you feel relaxed and happy– watching a funny movie or going for a walk
Remembering that you can’t help others until you help yourself may be the hardest thing you do as a caregiver. Even tougher is giving yourself the grace to figure out how to balance care for others and yourself.
Family and friends
When well-meaning friends and family ask how they can help, it can be easy to say, “I’m fine,” when in reality, you feel overwhelmed. And coming up with ways they can help might just feel like more work.
Take a few minutes to jot down a list of small ways others can help, whether it’s picking up groceries, giving rides to medical appointments, taking your loved one out for a walk, paying bills, etc. Next time someone asks, be ready to give them a specific task – they’ll feel good about helping, and you’ll get some relief.
There are countless people out there exactly like you who are feeling exactly the same way. That’s why so many caregivers find strength from support groups.
Support groups can ease your loneliness and help you find answers to your questions. After awhile, you may find yourself a source of information and support for others, giving you a sense of accomplishment and more confidence in your role as a caregiver.
Below is a list of national support groups. Check with your healthcare team for information about local groups.
- American Lung Association
- Family Caregiver Alliance
- American Cancer Society
- Cancer Support Community
- Cancer Hope Network
- MD Anderson Cancer Center
Why legal options may be important
“Why me? Why us?” These questions will go through your head while you face the painful challenges that come with a lung cancer diagnosis. “It isn’t fair,” you’ll think to yourself. And you’re right.
If you’re caring for someone who has lung cancer, even if they were a smoker, it’s possible there are legal options available to recover compensation for the unjust hand your family was dealt.
We can help you find the answers and get your family the financial compensation and justice you deserve. Call a member of our team to get started.