Family is everything, and (as I’m now learning) family is everywhere. When I first started caregiving for my parents, I was like a baby bird who had toppled out of her nest, huddled in the cold rain at the base of the tree. Lonely. Vulnerable. Uncertain. Two amazing parents who had raised and cared for five children had become aging seniors, both afflicted with a cognitive disorder and in need of daily care themselves. What now?
I’ve spent the last three years learning as much as I can about what is happening to my parents. My father’s vascular dementia and my mother’s Alzheimer’s have become the focus of my intellectual curiosity, my spiritual searches and my medical inquiries. I have become a part of this world, and this world has become a part of me. And the basic notion of “family” that I grew up with has morphed and expanded to include an entire subset of people with a similar focus. Family is everywhere. There is community in suffering. And while the focus is more on solutions than suffering, it’s always important to know that you’re not alone, you’re never on your own, you’re not the only one.
Many of us are going to end up caregiving for someone. If we don’t end up caregiving, we might be responsible for finding a carer or facility for someone we love. That seems very clear to me now; yet it’s not something that crossed my mind once in the first 55 years of my existence. And it’s not just our parents, folks! I have two close friends who were recently diagnosed with cognitive challenges. I’m watching my own mental health very closely. It is what it is.
We need to be there for each other.
We are all going to need to know more about our health care system, health care choices, the value of food, lifestyle and medications, and the care options available to the millions of us who will be afflicted — as the baby boomers continue to age with a life expectancy of over 90 years, and a startling projection that half of us will succumb to some form of dementia. Will it be a rude awakening for most of us, as it was for me, or will the media prepare us adequately? I guess that remains to be seen.
But ignorance is no excuse – it was no excuse before the Internet, and it’s certainly a lame excuse post-Internet. Whatever you need to learn is out there. I’m currently enrolled in (and doing well, by the way!) a free online course with MOOC University called “Understanding Dementia.” I will never stop learning and sharing, and I continue to be in awe of amazing people who are equally dedicated to advancing our common knowledge.
Speaking of amazing people…
Berni is a registered nurse, a caregiver and a writer. We met on Twitter, have hobnobbed on WordPress, and we bump into each other occasionally on Facebook. When I read her recent missive entitled “A Message to Students“, I felt it was one that should be shared widely. It’s clear, it’s informative, it’s compelling, it’s concise. And it’s current. You can read it directly from her blog here, and I’ve included an extract below. Thank you, Berni, for your eloquent voice.
“I am frustrated by the old culture of care, a system that is task oriented, risk-adverse, and controlling. We restrain people into chairs to prevent them from falling (often resulting in the person becoming agitated and pulling the chair over on themselves trying to get out). We disinfect everything, aren’t allowed to have communal food, can’t put interesting things on the walls and ceilings to look at due to fire regulations, and on, and on, and on.
We suck the fun out of their lives in the name of safety. Persons with dementia need the people who care for them to enable them to have purpose and meaning in their life, and to provide many small moments of joy throughout the day. We need to meet the person where they are living, in their reality, and accept them for who they are today, not pining for the person they were in the past.”
– Excerpt from “A Message to Students”, by Berni Baer
One thought on “Lesson #34: Learn How To Fly”
Thank you, Lorrie, for your kind words and for sharing my heart-felt missive to students. You are right, “Family is everywhere”, and that sense of family is the key to “living with” dementia and not “suffering” from it, whether you are the person with the diagnosis, or the person supporting them. And you are never alone.