The Center for Disease Control (CDC) defines the caregiver as providing care to people who need some degree of ongoing assistance with everyday tasks on a daily basis. It is not surprising the CDC clarifies caregiving is a public health priority; noting the health of caregivers is at risk.

Over the years, in conversation with many ALK caregivers, the Cambridge dictionary definition of caregiver seemed more appropriate. Cambridge states caregivers are the ones that worry about the future and worry about the past and worry about the present. Is this you?

Author Rhonda Meckstroth with her husband Jeff, who was diagnosed with ALK positive lung cancer in 2015.

Living With Lung Cancer - Caregiver Side Effects

It is often said within the ALK Support Group “every patient journey is unique” and this would also be true for the caregiver, especially when considering the relationship status of the caregiver to the person living with lung cancer. Perhaps you are a seasoned ALK caregiver with years of practice, a newbie to this journey, or maybe experiencing a sense of “normalcy” from extended periods of stable scans; whatever your status, caregivers do have their own side effects. There are common threads among caregiver conversations such as stress, worry, fear, anxiety, panic attacks, insomnia, migraines, and depression. How about isolation, loneliness, resentment, loss, or feeling invisible, forgotten, and suffering in silence? It is also common for the caregiver to increase or assume new roles/duties adding to an overtaxed body/mind. What about compassion fatigue; times where the weight of your burden derails empathy for your loved one?

Ever feel guilty, even for being “healthy”? Ever feel like no matter how much you are drowning, there is no one who understands, or even notices? Many of those living with ALK lung cancer do not look like traditional cancer patients, so this can also complicate the public belief, sympathy, and recognition of a caregiver needing assistance. Does any of this sound familiar? You are not alone.

Because ALK lung cancer is rare, many will live in rural/community settings or in countries where the knowledge/access barriers place the burden of navigating appropriate care on the caregiver. This is a heavy burden - how many caregivers have had to earn a PhD in ALK in an effort to keep their loved one alive? The reality is, every human being will face death but there is a unique difference for those who “know” and live with a terminal diagnosis. Our minds cannot stop processing thoughts of death; many note the grieving process begins at diagnosis.

There are minimal resources for lung cancer and even less for caregiver support. The isolation of the process is a great area for change. We describe our cancer journey as a roller coaster ride with intermittent moments of happiness & laughter, then moments of fear & anxiety. But in our situation, it never stops and you can never get off, and as a result, it mirrors having PTSD.

How to Navigate the Caregiver Experience

Start with first recognizing when your loved one is diagnosed with lung cancer, you are too. We have to recognize our own physical, mental, and spiritual needs and ensure we put those needs on the priority list. Learning to develop coping skills is essential and can be unique to each caregiver.

If you are a person living with lung cancer, one of the most important ways you can offer assistance to the caregivers in your life is to acknowledge their journey. Every caregiver, young and old, has a journey and needs support.

How do you stay positive through the ups and downs?

Here are some suggestions from caregivers like You:

• Counseling/support group – Conversation and a safe place to share your own journey, needs, and emotions has been noted as being helpful. The average person will not be able to understand the complexity of our situation, and many caregivers are conscious of not wanting to add more burdens on their loved one by discussing their fear/needs. Some have even noted connecting with another ALK caregiver or a support group of caregivers living with cancer as being helpful. There is comfort in knowing what you are feeling is “normal” and nothing to be ashamed or feel guilty about.

• Stay present and live in the moment. Future thinking about “what if” has no purposeful advantage for your well-being. Make a point to be grateful every day! We have already discussed it is common to have more than average thoughts of death. It can be crippling to live in a future, “what if” state, and can often expand to living life through a negative lens. It sounds trite but finding gratitude daily and consciously noting what we still have can be helpful.

• As much as possible work hard at living a “normal” life.

• Find Your Outlet – Exercise like yoga, meditation, pilates, walking are all a great outlet for stress. Whatever brings you joy, makes you laugh, and relieves stress – find it and do it – daily! If you do not place a high priority on your own mental/physical health, the side effects will add up and ultimately can result in being unavailable to provide care giving for anyone.

• If it is attainable, consider having a well-educated diverse medical team that includes a specialist in treating your specific type of NSCLC guiding tough decision intervals. Undoubtedly, this will lessen the burdens of decision making.

• We understand many caregivers and those living with lung cancer do not have access to the most current testing/treatments, or can afford to travel/seek an educated medical team. ALK Positive Inc. does coordinate a free second opinion with leading oncologists in ALK lung cancer. This generous program was created by Jim Peard, living with ALK lung cancer, in his recognition of lack of access issues within our ALK family. You can find full details here: https://www.alkpositive.org/second-opinion-program

• Trust Your GUT instincts! No one knows your situation better than you! Listen to your body, seek help, and add your name to the daily priority list!

Author: Rhonda Jones Meckstroth

The Caregiver Journey