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Life is Dynamic and Ever-Changing: Insights for Caregivers

Semi-annual UCSF Neuro‐Oncology Gordon Murray Caregiver Program Newsletter, Fall 2019

I was recently reminded of an old saying, “The only thing constant is change.” It’s true – our bodies, our minds and our surroundings are always changing. Charles Darwin said, “It is not the strongest of species that survives, nor the most intelligent, but the one most responsive to change.” But how does one respond to the fact that their loved one is diagnosed with a brain tumor?

I do not think anyone would disagree: caring for someone diagnosed with a brain tumor changes everything! From the moment the first symptom appears change happens, sometimes fast and other times more gradually. Caregivers face changes in their plans for the future, in their relationship with the patient, in the roles they play in their family and community, in their sense of purpose, in their physical and emotional well‐being, and in their relationships and connections with others. There will be ongoing and often unpredictable changes because of the illness. Living with uncertainty is the new normal.

A common phrase used these days is lean into it. In this case that means acknowledging that change happens and is a part of life. It’s useful to roll with things rather than resist. But how does one do this you may ask? Find a safe place (psychotherapy, support groups, religious counseling, journaling, peer support) to identify what’s changed. Give yourself permission to name and express all of your feelings (for example anger, sadness, fear), acknowledge the loss and allow yourself to grieve. This facilitates healing and fosters growth, freeing up energy to cultivate acceptance and even joy.

Socrates said, “The secret to change is to focus all of your energy not on fighting the old, but on building the new.” Access your inner and outer resources. Look for opportunities to nurture your flexibility and resilience. Do what works for you and your family; there is no one right way to cope with change. Through pain there can be growth. Come from a strengths perspective; focus on what’s possible. Stay in the moment. Allow yourself to create new dreams and a new way of being in the world! Ask yourself, “What is it you plan to do with your one wild and precious life?”

Responding to Change

Give Your Thoughts a Voice

  • Journal or talk with others
  • Name what’s changed
  • Identify what you can’t control and how you will choose to respond

Let It Go

  • Create a ceremony or letting go ritual
  • Express your thoughts, put them on paper and burn the paper or tear it into pieces

Find Your Tribe

  • Change and loss are all easier to bear when we have a shoulder to lean on or a listening ear
  • Don’t go it alone

Do What Makes You Feel Good

  • Celebrate being in your body
  • Use all your senses: sight, sound, smell, taste, touch
  • Laughter can be therapeutic

Keep Track of Your Growth

  • Notice how you’ve grown and note your successes, big and small
  • Keep a list and review often
  • Maybe you’ve learned to advocate or you’ve become more organized or patient

Stay in the Present Moment

  • Learn to breathe consciously or meditate
  • Practice mindfulness with everyday activities.

 

Rather than living a life of resistance and trying to disprove our basic situation of impermanence and change, we could contact the fundamental ambiguity and welcome it.

Pema Chödrön

 


Learn more about the UCSF Neuro-Oncology Gordon Murray Caregiver Program and other caregiver resources.