Alzheimer's & Caregiving: Looking for Home
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"I want to go home..."
“But we are home, Daddy! Don’t you see the old oak and swing where you loved to sit?”
“Yeah. But I just want to go home…”
As a neurologist, I am often asked by caregivers of persons with dementia whether it would be a good idea to travel back to the home place, even though it may be quite different than it once was.
My advice is almost always the same: don’t take them back, especially if it is uninhabited, or if the appearance has changed significantly over time.
The most enduring characteristics that make the homeplace special are the people who were present there, and the experiences and love that were shared. Those cannot be found on a rotting porch.
Persons with Alzheimer's disease always look for home.
"Home" is not a physical place. Rather, it is a conceptual place residing deep within the emotional self -- a place of comfort and warmth and familiarity, where they are known and loved.
It is the squeaky old chair that rocks them to sleep. It is the favorite blanket, drawn in more tightly as the disease progresses. It is a mother's lullaby.
The smell and feel and sound of it, and the memories evoked, take them to a happy place.
We can provide this journey back “home” through person-centered care; care which places more importance on the human being with the disease than on the disease itself; care which validates them in the present.
I’m not talking about only reminding them of “the good old days.”
I’m advocating stirring up the hues of the past with reminiscence, then dipping into that rich well of the self to spread vibrant hues on the canvas of the now…the timeframe in which we can actually make a difference for the good.
“Now,” which only death can steal; where dream meets life and life meets memory; where there are no expectations or regrets; where passing units of time infinitesimal bring the world afresh: innocent, wonderful, unknown…
where “self” is ever redefined in context; where God and we may co-create; where, though briefly, birth and death embrace at love’s behest; where to exist is to begin and to begin is to hope and to hope is to live;
let me only and always play on your stage, and in each singing, dancing, praying, praising line, take my cues from Love alone.
- "Life in the Present" by Daniel Potts from A Pocket Guide for the Alzheimer’s Caregiver
Don't take them back to the old home place.
Wrap them up in it, now, through person-centered care.
Daniel C. Potts, MD is a noted neurologist, author, educator, and champion of those with Alzheimer’s disease and their caregivers. He was chosen by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, serves as an AAN national media spokesperson for Alzheimer's disease and other forms of dementia, and is a faculty member at both medical schools in his home state of Alabama. Inspired by his father’s journey through Alzheimer’s disease and his mother’s dedication to caregiving, Dr. Potts seeks to provide hope and support to those in like circumstances.