When No One Seems to Understand

2011 March 23

Why do some people seem to have it all figured out? Some people’s facebook posts proudly boast of incredible vacations and great accomplishments.  People’s holiday cards are filled with stories of triumph and inspirational tales of perseverance. The nightly news fills our hearts with awe-inspiring tales of Lance Armstrong-like recoveries from even the most debilitating diseases and illnesses.

Fact:  Most people don’t have it “more together” than you do—they simply tell stories of their lives that fit better with what we want to hear. Not all stories are created equal. Recovery stories fit better than our stories. If you are a caregiver, most likely, you are a main character in a loved one’s story that may not fit within the illness-recovery narrative that most everyone understands and applauds.  Why doesn’t your story fit well on a facebook post or in a short conversation with friends and family?  Our caregiving stories don’t seem to fit because:

  • We don’t know what tomorrow will bring
  • In our story, advances in medical technology don’t save the day
  • The will to get better and a passion for life doesn’t mean our loved one will recover
  • Our story doesn’t involve one heroic act of greatness, just everyday acts of anonymous courage and persistence
  • Our story can’t be neatly summarized in simple phrases that others want to hear, like “great,” “promising,” “improving,” “getting better,” “almost like she was before.”
  • In our story, the main characters are uncertainty and anxiety, not certainty and assuredness
  • Words can’t explain what our loved one is experiencing
  • Words can’t explain how our caregiving role changes us
  • Our story doesn’t guarantee a happy ending
  • Our story is met with silence, not applause
  • Our story doesn’t photograph well

So what happens to our stories? As caregivers, eventually, we stop telling them to others. In the beginning, we try. But, after too many blank looks and too many “I’m sorry’s,” the story stops being told. Eventually, we convince ourselves that it’s just easier to keep our everyday existence to ourselves, knowing it’s too exhausting or too much effort to even attempt to explain our story to people who seemingly want to get it, but just don’t know how.

Sadly, there are so many of our stories. More stories than we can even imagine. But for most of us, we’re too good at convincing ourselves that our story should be edited out of existence. At the Unprepared Caregiver, we get your story. We understand that it’s full of contradictions. We get the fact that sadness and joy can share center stage in the same story. We understand that laughter and grief can go hand in hand. We know that your every day life as a caregiver can’t be summarized by one word, but is full of simultaneous contradictions like struggle and love, burden and care. We know that words get in the way of how you feel and what you’re thinking. We get it. Here, simply knowing there is an audience of people for whom you don’t have to edit your story means you’re not alone.

7 Responses leave one →
  1. March 24, 2011

    The down-to-earth quality of this depiction of the caregiver situation is a welcome relief. Good luck with this site.

  2. March 28, 2011

    People don’t want to here what all you do as a caregiver, because it makes them feel guilty for not helping. They prefer to live with the fantasy that everything is okay. My family is even jealous of me, thinking I live a cushy life with my elderly parents. They really don’t want to know how much of my own life, and my freedom, is being sacrificed.

    But, when I comment on facebook, I write about the interesting or exciting things I do, in order to make myself sound like an interesting person, so I assume that other people do the same.

  3. Dr. Zachary White permalink
    April 10, 2011

    My thoughts are with you Lisa. What you describe is much more common than others make it appear. Have you thought about contacting hospice or a social worker to discuss possible options.

  4. Ann permalink
    December 28, 2015

    I have been struggling so much caring for my 30 year old husband as he recovers from major thoracic surgery. He doesn’t have cancer, he’s not dying, he’s not elderly, but he does need help with everyday things and will for months. Outside our home and to guests, he seems normal, but he often dissent have the strength to even lift a gallon of milk, and surgery was more than 2 months ago. Reading this was the first time I felt like someone understood my side. Thank you.

  5. December 28, 2015

    Ann,
    Thanks so much for your comment. I’m so glad you found us and feel like your voice and your experiences are represented. We are thinking of you and your husband. Feel free to subscribe to our weekly blogs.

  6. Suzy Drummond permalink
    February 3, 2016

    I love the idea that our stories of caregiving don’t photograph well. Isn’t that the truth. I am a nurse and we are a bit more open about our stories, but as you said, on Facebook if we appear to be living the ‘dream’ everyone comments. If we voice a day of angst as our loved one fails only a handful reply, the ones that have been there. We have our own club but everyone will get to be member someday.

  7. February 5, 2016

    Suzy,
    Thanks so much for your comment and insight, born from experience. Thanks for contributing to the Unprepared Caregiver community.

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