Losing autonomy as an adult is frightening.
Instances where independence and freedom become threatened are disempowering and demoralizing. In my career, I see this regularly in the lives of individuals diagnosed with dementia and their care partners. And for different reasons, this also happens to be how millions of women feel right now. A compromised sense of independence impacts wellbeing, health and wholeness, resulting in an individual feeling less valued as a human being.
Is there any greater threat to identity than to limit a person's sovereignty?
A few reflections for your consideration:
- Are there places in your life presently where you feel stifled from being or expressing your full and true self?
- Does your sense of personal freedom feel compromised? Is your identity or safety in any way challenged?
- Do you have the support you need to feel safe and comfortable in most situations?
- When was the last time you felt afraid about your health and wellbeing and the supports, resources and means available to help you through?
As we observe our nation's independence, we can consider our personal freedoms and how we use them. We can reflect on how this impacts our health, the health of our family, our communities and the nation at large. Though America is founded on an idea of freedom, our history as a nation of “free” people is deeply flawed and sadly fraught with cruel and inequitable policies and behaviors. We can look at most any aspect of community life, such as care partnering and dementia, and see how many threats to independence, stability and sustainable support there are (health care, financial security, access to resources). A closer look reveals a complicated situation and quite frankly, prejudiced policies, which primarily impact women to the tune of billions of dollars in unpaid hours of labor each year.
We’ve come a long way in this field. The hallmarks of diagnosis, the availability of caregiver peer support programs, education, and community awareness have all improved. While science marches forward with increased federal funding and strong initiatives to prioritize the pursuit of a cure, the day-to-day lives of people with dementia and their care partners are sadly not improving. How this translates for an individual and their family still largely hinges on personal finances, access to expert care (proximity to a health care center with specialized neurological care) and the right support and connections to secure guidance, tailored to their own circumstances over time. In short, it’s complicated and fraught with inequities and obstacles outside individual control.
In a country grounded in a great many personal liberties, so much is compromised by the will, self-interest and greed of others. How can we expect those on the front lines of family dementia care to protest and pursue more humane, inclusive and sustainable policies and community care? We can’t. They are exhausted. We can, however, do what is necessary in every realm of American society where injustices and oppression persist. We start by listening and then locating the individuals who are leading legislative and community initiatives to get important decisions benefitting caregivers and women on the ballot and organizing voices. Then, we speak up, we vote and stay engaged as if it was happening to our own family. When we can broaden our sense of what family means, it isn’t hard to imagine. Caregivers do this to survive and to navigate years of isolation, just like so many others in our nation who need more support. They need a community to thrive. And just like caregiving, it’s never wise (or safe or helpful) to go it alone.
But there must never be a time when we fail to protest.
~ Elie Wiesel
