On this July 4th, as we celebrate America’s proud declaration of independence from Britain some 242 years ago, many of us are struggling with oppression and are fighting a vicious and prolonged battle of our own – Alzheimer’s Disease.
From a very young age, we all want to be self-reliant and to make decisions and take actions of our own free-will. Growing responsibilities (and life in general) can sometimes pose a threat to these freedoms, but over time we find our own ways to feel in control and happy with our independent adult lives. In his book, “Dementia Beyond Disease,” Dr. G. Allen Power says that there are seven ‘Domains of Well-Being’: Identity, Connectedness, Security, Autonomy, Meaning, Growth and Joy. When dealing with Alzheimer’s, ‘autonomy’ (aka independence) is the domain that is most immediately threatened and directly impacts our quality of life.
Dementia’s grip on independence is slow and steady… and irreversible (for now!)
It starts with small things like taking away the car keys, and progresses to the eventual inability to breathe or perform other basic functions of human life. Dementia transforms even the strongest and most reliable into the helpless and dependent, taking its demoralizing toll along the way. But it’s not just the diagnosed who lose their independence: it’s also their caregivers.
At some point along the caregiving journey, all of us realize that this can not be done alone. We rely heavily on our friends, family and each other to get through the day and to find time for ourselves. It’s a strangely ironic situation:
Caregivers become dependent on others so that others can depend on them
So what’s the positive spin to help us get through this battle? Well.. there are a few, actually.
Remember that although Alzheimer’s means a progressive path towards losing independence for the diagnosed, it doesn’t mean the same for the caregiver! You do not have to share the fate and become the ‘second victim’.
Finding paths to feeling good about your own sense of freedom and free-will will make you a happier, healthier and more effective caregiver. This might be through carving out a little ‘me time’ each day, or maybe just throwing a ‘Tea Party’ for you and a few friends every now and then 😉 Whatever works for you! The more help we get for ourselves, the better we can help others.
There are also high quality memory care options all across this great country that focus on prolonging the quality of life and independence for those with Alzheimer’s and dementia in a safe and controlled way. These communities have each patient’s self-respect and dignity at the forefront and help stave off the inevitable loss of autonomy as long as possible. Care communities and support groups are the caregiver’s allies in the war against Alzheimer’s!
So, on this day, while we celebrate our independence as a nation – let’s also celebrate those who we are dependent on – as they are who truly give us our own freedom and allow us to be the best caregivers we can be!