When I started my caregiving journey nearly eight years ago, I felt very sad. I was very sad for momma, but also for daddy and myself. I was frustrated, too. I felt like I was alone trying to navigate an unfamiliar place while maintaining everything else in my life — spouse, home, job and civic and charitable responsibilities. I was floundering and trying to predict how soon life would return to normal, which included momma spoiling and taking care of daddy, running errands, ironing my clothes and calling me back-to-back (without caring that I probably was in a meeting) to tell me she’d cooked one of my favorite meals. For about a year, I’d hoped and wished for normalcy before I realized that life as we knew it was not only gone, but was becoming a bumpy, emotional ride.
SHARING CAN BE THERAPEUTIC
Once I started understanding momma’s condition and realizing that daddy already had begun living with dementia, I established routines and started sharing what I’d learned with others via social media. I found that sharing that way was therapeutic; it became a way to survey the situation, re-evaluate our approach and decompress. It also became a way for us to laugh at ourselves instead of crying. The laughter made it easier for us to handle the immense sadness and the effects of the horrible disease. As I began to share our adventures and my audience grew, I learned that there were many others like me. I no longer felt as lonely, although the loneliness has never left me.
I sometimes didn’t realize that acquaintances had been walking the same journey until they’d shared an announcement at the end. Many sent private messages or pulled me aside to ask questions, request help with finding resources or just privately share their story with someone who would understand. I welcomed it all, as I still do, and soon realized how many others were silently traveling this long, winding road.
Eventually, I shared my caregiving journey with my employer when my responsibilities increased due to the progression of my parents’ dementia. Although I learned that my employer already knew about my caregiving journey, the complexities of this journey weren’t fully understood until I had to shorten a meeting and hurry to my parents’ home; momma had fallen and needed help.
WHY CAREGIVERS STAY SILENT
I often have wondered why many caregivers are so silent. Here’s what I’ve determined:
- The caregiver may have feared a negative impact on her job once a supervisor realized her caregiving responsibilities.
- Either the caregiver or the loved one she was caring for was embarrassed. For some, there is still a stigma associated with dementia and needing a caregiver.
- The caregiver was exhausted and simply too busy to share her struggle.
- The caregiver’s mental and physical health declined.
- The caregiver was not aware that she had become a caregiver.
- Some only knew life as a caregiver and considered it normal.
- Not talking about it made the journey easier to manage.
YOU ARE NOT ALONE
Whatever their reasons, those who are silent caregivers should understand that there are many of us out here. You do not have to walk in silence, and you are not alone. A whopping 65 million of us are providing unpaid care to a loved one.
Sharing with those closest to you and your care team can help you navigate the demands more easily, provide better care and help you reduce stress and despair by connecting with others who understand your journey.