Hello, my name is Elizabeth Blessing and I’ve been a caregiver for 40 years. I started caregiving when I was 6-years-old by helping my parents care for my profoundly autistic older brother, Bobby. In my teens, I began helping another brother after he was diagnosed with a mental illness. In my 30s, I began caregiving for my father, helping him through cancer, strokes, multiple falls and fractures, dementia, nursing home care, and most recently, end-of-life care.
While 6-years-old may seem like an impossibly young age to start caregiving, the truth is it’s not that uncommon to find children helping care for ill or disabled family members. According to a September 2005 report by the National Alliance for Caregiving in collaboration with United Hospital Fund entitled, “Young Caregivers in the U.S.”, nationwide there are approximately 1.3 to 1.4 million child caregivers who are between the ages of 8 and 18.
Hopes and goals
My goal in starting this website is to share my childhood memories of helping care for my autistic brother and my more recent caregiving experiences as well. I will write about issues relevant to caregivers, including (but not limited to): suggestions on how to find and provide the right care for your loved one; ways to prevent caregiver “burnout” and take care of yourself during the challenging days ahead; how to be an advocate for your loved one; and reviews of books that deal with caregiving topics.
I’ll also discuss the emotional and human aspects of being a caregiver, sharing with you my perspective of caregiving as one of the most spiritually enriching and meaningful experiences a person can have. While I have had many careers in my life – including technical writer, office manager, graphic designer, and publications department manager – the role I’ve most identified with and which seems to recur most often in my life is that of caregiver. It is a role that has shaped who I am today more than any other set of experiences.
If you’re a parent, relative or friend of an autistic child, this site might interest you because of the over five decades of experience my family has had with autism. So much has been written about autistic children recently but not as much about autistic adults and certainly not much about low-functioning autistic adults well into their middle age years. While I don’t know if our experiences are typical (or if there really is anything such as “typical” in autism), I am happy to share our recollections in an attempt to add to the knowledge base of autism in general and adult autism in particular.
What you might also find interesting is that ours is a story of an entire family coming together in the effort of caregiving. In his 52 years, Bobby has never spent a night away from his family, never been hospitalized, institutionalized or lived in a group home. His home has always been wherever his parents have been, a feat they have miraculously accomplished well into their senior years despite facing their own significant health issues. And so, our story has now segued into one that has become more common in our society as the population ages and healthcare resources become more scarce: It is the story of the disabled caring for the disabled.
Beginning with the end . . .
I started this website on April 6, 2011, almost two weeks after my father, Kendall Blessing, passed away at a local nursing home after a long illness with prostate cancer and a series of strokes. My first posting is the obituary I wrote for him. It might seem strange that I’m starting my website on caregiving with what is most certainly an ending, a death in the family. However, I have found much of caregiving is about transitions, and although sad and difficult to comprehend, death is the ultimate transition we will all face. It somehow seems quite appropriate to begin at the end and work my way backward in time through my family’s history of caregiving and forward into the future as we continue on with life after Dad’s death.
I thank you for visiting my website and reading my essays. I’ve subtitled my site, “A Caregiving Blog for a Caring World” because I honestly believe there is more compassion in this world than any other emotion. I hope at some point you’ll feel comfortable sharing your comments with me and perhaps even your own caregiving stories.