Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Ever Ask Yourself…How Did I Get Here?

Welcome to Caregiver Friday!!!

I believe the title of the entry says it all.  I know during the marriage ceremony we all pledge to take care of someone “in sickness and in health”.  I wonder if we really believe the “sickness” part would or could ever show up and then suffer buyers remorse.  Obviously as we age the idea of diminished capacity of some sort will arrive, but it’s the unexpected illnesses earlier in life that ambush the lives of not only the patient, but everyone in their family.

I can go on about taking care of yourself emotionally and physically and I believe that’s important.  However, what I really want to focus on are the “dark” thoughts or the “shadow side” of being a caregiver. I’ll give you a for instance.

When I used to run divorce groups I would ask each member to tell me a revenge fantasy.  They would emphatically say they didn’t have any ill will toward their ex-spouse.  I would ask them to think about it and come back to group the following week and see if anything changed.  Oh what a difference a week can make.  The revenge fantasies were detailed and cathartic.  The caution is to remind each person there are only fantasies and in no way, shape or form be carried out, but simply released as a way to express disappointment, despair, betrayal or a host of other emotions.

So let’s be clear, I’m not saying to have revenge fantasies toward the person you’re caring for, but there is an alternative.  It’s important that the gremlin thoughts be acknowledged and released.  Festering won’t help your compassion factor.  The other thing is that I was taught a long time ago, “you get out of something until you’ve been totally in it”.  This is my suggestion.

Take some time when you aren’t responsible, on call as a caregiver and think seriously about the impact the illness has had on your own life.  Take the time to acknowledge the loss and the shattered assumptions about what life would be like if you both were healthy.  I’ve mentioned in the past that the life you and the patient are living are a “new normal”.  Give yourself permission, or let me write you a permission note that says if this is the path my life is taking, how can I make it the best and most memorable life ever.

I remember a story years ago on Oprah with a woman dying of metastatic breast cancer.  She had young children and was concerned she would be forgotten.  She created videos for every important occasions in the childrens’ lives i.e. birthdays, confirmation, prom, wedding, etc and her husband would make sure the kids got these videos over the years.  Obviously that’s on the patient’s side of the equation.  On the caregiver side is the ability to understand that no matter how much control you’d like to assume, control is finite if not a fantasy.

Trust me, this is no way a reinforcement for “God doesn’t give us more than we can handle” or “what doesn’t kill us makes us stronger”.  I’m not into the cliche end of caregiving.  I do believe in acknowledging your time, effort and commitment to a process that has no definitive end (for some).  It’s knowing that when the times get tough, the tough honor their emotions and know that angry thoughts or frustration don’t make you a bad person, they make you human.  The ability to feel the entire range of emotions is what keeps you in balance.  It provides you with the reality check so many in the trenches of illness rely upon for their sanity.

By having a full range of emotions you’ll be able know how you got where you are.  You got here based on your values, your love, your commitment and your compassion for another human being.  You got here because you hold an Olympic Torch lighting the path for healing.  You got here because you’re human.


I've lived my life in service to others. I'm focused on mental health and how it impacts our relationships, culture, and society. Through creative expression and narrative I believe we can impact change.

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