Well my friends, this is my very first blog post. I am both excited and nervous at the same time to share my story with you. Representing the caregiver community is a big undertaking and not to be taken lightly. With all that we endure and all that we experience, my words and thoughts must lend itself to respect and true understanding. I have read an over-abundance of caregiver tips, resources, and fact sheets over the last 20 months that have either angered me or made me bust out laughing hysterically. The lack of the caregiver experience is evident in these resources. I love my friends and family, but if they send me one more fact, statistic or caregiver tip that was written by either an academic institution or some funded research institution, I might lose my cool. If they are interested in facts, they can ask me, I am the statistic. 🙂
My desire to blog on this experience is to convey the REAL caregiver journey. This journey is every day, 24 hours a day, 12 months a year. There is no break, no respite, unless you create it. The journey I am describing lacks community support, drains your finances, physically beats you down and emotionally empties you from the core of your being. While I believe in a positive and healthy approach to caregiving, I know the raw experience and refuse to sugar coat the realities of this walk.
My caregiver journey really began when I was a child. As the first born into the typical dysfunctional family, my role quickly developed into caretaker, mediator, counselor and protector. As I moved into adulthood, my role became provider, especially for my mother, who lacked a higher education, was low income her entire adult life and could not make sound decisions for her life. I always say that I did not want this job, but sometimes life dictates circumstances beyond our control. I could have walked away from this situation very early on in life and may not be where I am today. However, God developed my character and filled my heart with compassion, empathy and a desire to serve others. I will never say I had a choice to take care of my family, to me, that is what love is.
Now at 44 years of age, I developed a new love, a love for myself. Did I have this prior to picking my mom up at the homeless shelter and becoming a fulltime caregiver of someone with Alzheimer’s? Probably, but I did not consciously take action in my life to self-preserve. I really should be thanking my mother. The last 20 months has saved my life. This time has given me new profound meaning and purpose and has provided a self-awareness that I do not think I could have gained, if I had not stumbled down this path.
I am hoping to adequately describe this journey, as it can be horrific, heart-wrenching and devastating to the family’s undertaking the prime responsibility of caring for a loved one. At the same time, I want to describe the kindness I experienced along the way. In the face of continous closed doors, denials, appeals,lack of empathy and just plain lack of services, my family crossed paths with angels. These angels assisted us along the way and to this day, may never know the depths of their impact on our lives.
In future blogs, I will also be discussing the health and wellness aspects of caregivers. This was and is one of the biggest challenges I have encountered. You become invisible as a caregiver and before you know it, you have not been to a doctor in two years, you don’t remember what a dentist does and your workout clothes have become your pajama’s. This is a very scary situation for caregivers and I will be sharing my on-going successes and challenges with you.
Thank you for reading or skimming my very first blog post. I hope you will come back and visit me and I hope that I will make the caregiver community proud in being the voice to the largest ignored vulnerable population in the world. Feel free to leave comments or email me. I want to hear about your journey. Lets build this community together!