When Your Life is Consumed by Their Pain

Caregiver Corner
By Jennifer Beach, LSW, MA, C-SWCM

Steve’s wife, Carol, was in her mid-40s when she had a massive stroke, leaving her paralyzed on her entire left side, affecting her ability to swallow. The first year after her stroke, Carol remained in a rehabilitation facility. She required a feeding tube but eventually with ongoing therapy, encouragement and determination, she regained her ability to swallow with some limitations. When her rehabilitation team under her insurance benefit determined Carol had reached her level of potential recovery, decisions needed to be made about how and where Carol would reside. She would continue to need 24-hour care and support, also known as custodial care.

Steve has been by Carol’s side daily since the initial stroke. Nothing else in his life mattered. 

Steve, like many caregivers, lives and breathes Carol’s pain, frustrations and disappointments. Every up and down she experiences, so does he. Her stroke resulted in losses in her abilities and overall life. Subsequently, the stroke also consumed Steve’s life.   

For decades, doctors, psychologists, neuroscientists and even philosophers have been exploring why individuals react at such a gut level to other peoples’ pain. Some researchers believe what is termed as “mirror neurons” contributes to this response. A “Mirror Neuron” is a type of brain cell that responds equally when we perform an action, as when we witness someone else perform the same action. This can be a wonderful, positive experience but also very difficult and challenging when a caregiver is highly attuned to another’s pain and circumstances. The “mirror neurons” can become all-consuming and not allow a caregiver to separate from their loved one’s pain and/or chronic condition. When a caregiver allows their loved one’s pain, losses and challenges to completely consume their life, they are at a much greater risk of burnout, illness, depression and even death. Therefore, safely meeting their loved one’s ongoing needs becomes overwhelming and can completely consume their own life and  identity.     

What can a caregiver do when their heart, emotions and life have been taken over by their loved one’s illness and/or chronic condition?

1. Be honest with yourself. What are you feeling? The simple act of allowing yourself to think about what you are experiencing and feeling can be a good start.
2. Talk to someone: a friend, family member, neighbor, support group, spiritual person, doctor, on-line chat group. If you simply cannot connect with anyone, write your thoughts down. Admitting or just getting out what you are thinking and feeling, even if you think they are “terrible thoughts,” will help to release and decrease their power. 
3.   Ask yourself, are your thoughts reality based and factual? Are your thoughts constructive? Keep in mind that you are not responsible for your loved one’s pain, illness or current circumstances. You can do the best you can to support them, but you cannot take away their disease, chronic condition, challenges and loss. They have the disease/chronic condition and pain, not you.  
4. If roles were reversed and you were in your loved one’s place, would you want them to not experience any joy, goodness or goals in their life? Or would you want them to stop all living, give up everything and focus solely on your condition? 
5. Understand what you can do to support your loved one. 

Learn about pain management, medications, palliative care, determining schedules, routines, and ways to engage with your loved one.  

6. Know that it is okay and beneficial for you to keep yourself healthy, including enjoying life a little. You are in this with your loved one for the long haul. Remember that not caring for yourself, your discomfort, pain etc. will not change your loved one’s condition.     

Steve initially brought Carol home, but his physical and mental health quickly deteriorated. It was determined it was not a safe or sustainable situation for either of them. Carol has been in a long-term care facility for over six years now. Steve continues to be her biggest support system and advocate. He has come to accept that he cannot change her condition or circumstance.

He has created routines, ways to be engaged, and to simply be with her. He now allows himself to experience some joy in his life, including a weekly golf game. Carol continues to have pain, slow decline and challenges. Things are not always easy, but Steve has learned to accept and live with his loved one’s difficult situation.