Why Your Story Is Important


Why Your Story Is Important


I recently revisited a conversation Richard and I had on “Our Caregiving Journey” podcast in January 2013. It was wonderful to hear his voice: Strong, confident, and determined to live out his life his way. That is the Richard I remember the most: Quick witted with a short fuse. 

As I reminisce about this period in our caregiving journey, I think back to all the wonderful people I met along the way on Caregiving.com and the many ways we bonded - the stories we shared, the laughter we exchanged, and the genuine care and concern we had for each other. We understood each other and were - and still are - an extended family. That is because, in the caregiving community, there are no strangers.

What strikes me today about our conversation from eight-plus years ago is how timeless all our caregiving stories are. If you get the chance to listen to some of the excerpts from our interview (which Caregiving.com and I will be sharing on social media)I bet you’ll connect with our conversation including these two examples:

  • Richard spoke about his desires when his pain becomes too great, described what a good day feels like, and shared what he wants from me.
  • I talked about the challenge of letting go of my beliefs and emotions when it comes to Richard’s wishes.  

Like most couples, we had different perspectives and philosophies. Richard was an agnostic Jew; I was a former catholic seminarian. While it was not easy at first, I understood the importance of putting aside my beliefs so I could honor Richard's wishes because I was his advocate. Despite our differences, we were two hearts joined together as one. Richard and I were fortunate; not just in the genuine love and care we had for each other, but also in the innate ability we had to talk about anything and everything.  

For example: When it came time for hospice, the decision was not forced because he had told me in our previous discussions, “When I’m ready for hospice, I will tell you” ...When he got out of his chair on his own and walked to the gurney to be taken to hospice… Yes, he did tell me he was ready!  

Many of the same end-of-life issues we faced are still true for caregivers today including:

  • Have you had the opportunity to talk to your care partner about end-of-life wishes?
  • How do you want to spend your last months, weeks, and days?
  • What do you want from your care partner during your last months?
  • What is a good day like for you? (Good days do tend to change for both the caregiver and care partner.)
  • Do you need help facilitating this type of conversation?

Having this difficult discussion early on in the caregiving process (when possible) can make a very stressful emergency just a tad bit easier when you know what your care partner wants at a critical time in their journey.

This is where the importance of sharing your story comes in. Story sharing is cathartic. It is a keepsake memory that allows you to not only reminisce but is also a great source of information and comfort for those caregivers who come after us. Throughout my years of my advocacy work for caregivers, I have found that people connect most to stories. Caregivers learn of resources, receive validation, can laugh and cry at the same time, and learn how to approach the most delicate topics from those of us who found ways to have these conversations with those we love. It's one caregiver talking to another in ways only caregivers can understand.

Your caregiving story is an important resource for yourself, too. You’ll be reminded that the good days far outweighed the bad day during your caregiving journey, and you’ll find comfort in knowing you did all you could do for your care partner. 

While the pain of losing Richard has gotten softer over the years, the love continues to be strong. I just needed to learn how to love him in a different way. I do not miss being a caregiver, I miss the person I was caring for. That’s because my faith tells me I will see Richard again, my mind tells me he is forever pain-free, and my heart tells me he is standing right beside me.

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