Lung Cancer Caregiving

Jamie Shull

We all know the preflight instructions before an airplane takes off.

It’s something to the effect of donning your oxygen mask before helping others in your care. I believe those simple instructions are an appropriate analogy for anyone caring for a loved one with a serious or chronic health issue.

Take care of yourself so that you can adequately take care of those you care about.

When the words “you have cancer” are spoken, the world changes forever for the person diagnosed and for everyone who loves them. Any cancer diagnosis is devastating but I think lung cancer is especially so. I believe strongly that this is due to lack of awareness and funding for research. Lung cancer can be difficult to treat and can be very aggressive.  There is a misconception that lung cancer only affects smokers and that it is simply a “preventable disease”- that if you quit smoking or never start, you will be safe from ever getting lung cancer.  I know first-hand how untrue that is.

When one is thrust into the role of caregiver most often we don’t know what we need, let alone how to ask for help. We hear from people who offer sincere but vague offers of help (let me know if you need anything) while others completely disappear. Many times caregivers neglect their own needs and health because there is so much to do and only so much time. I know I did.

In my husband’s 20-month struggle to live I learned many, many things. Let me share the most important things that I learned about caregiving:

  • Most people want to help.....let them.
  • Give people specific tasks that will help you (pick up the kids from school, help with taking my loved one treatment, come over for a couple of hours so I can leave, etc...).
  • Ask someone to facilitate a meal preparation/delivery plan within your community of friends and loved ones. More than ever, it’s important for everyone in your house to eat healthy and there are much bigger things on your plate than planning/cooking meals every night.
  • I think the most crucial lesson I learned was giving myself permission to get away from the situation and to take care of myself. It took me a long time to understand this and I teetered on the edge of sheer burnout several times. Getting away can be as simple as going to a movie, curling up with a book for an hour, going for a run, or whatever brings you energy. Doing things to nurture yourself is not selfish....it is about sustaining yourself for the long haul in the enormous task you have undertaken out of love.
  • Find people who can listen, really listen, to what you are going through. For me that was certain close friends and a counselor who I could tell everything to- my fears, my panic and profound despair at the thought of losing the person I loved so very much decades too soon. I wish I’d also found a caregiver’s support group but there wasn’t one in my area at the time. When I asked about it, a social worker told me that caregivers are too busy and don’t have the time to meet- very telling.
  • This may be the most challenging time of your life. You are stronger than you know.
  • Never give up hope, for yourself or your loved one!

 

Jamie Shull will be writing a series of caregiving blogs based on her experience as a lung cancer caregiver and advocate.  Jamie is also a LUNGevity LifeLine Support Mentor and shares her insight and resources to help others co-survive lung cancer.  Please leave your comments and topic suggestions below.

Blog category: 
-> Caregiving

Comments

A very clear concise help guide to caregivers.

Great article Jamie. Thank you so much for sharing. I'd love to have your suggestions on what friends and family can say or how we should approach discussions about cancer with those who have been diagnosed. It's very difficult not knowing what to say or do for fear it will be the wrong thing but it has to be worse for me not to say anything. Please give your perspective for those of us who really care but are afraid of saying the wrong thing - thank you!

You are an inspiration.

You are amazing

I am happy to read your writing Jamie. xo

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