It is, hands down, the most popular image I’ve shared, with thousands of like, comments, and shares. I’m not surprised, because Teepa Snow‘s quote is a direct challenge to the often-expressed belief that dementia robs a person of who they are, makes them say and do things that they’d find humiliating, and leaves them essentially as an empty shell. A secondary belief is that the way we as caregivers and bystanders react to someone with dementia can give them as much dignity as possible despite the disease.
Honestly? Even typing those sentences makes me sick to my stomach. That’s how much I disbelieve those perspective.
Here’s what I do believe:
I am sad to admit that there have been times when I was embarrassed by my father’s dementia-induced behavior. I was embarrassed when he yelled at someone working at the local Social Security Office when we were trying to get him properly enrolled in Medicare. I was embarrassed when he spoke with a friend and I saw their confusion because his words didn’t make any sense at all. I was embarrassed when his disinhibition allowed him to say things to people that he never would but for the disease. In each of those instances, I was embarrassed because I didn’t think my father was behaving appropriately and I apologized for his behavior.
And my embarrassment and apology meant that in those moments, I did not see him as worthy of respect--my reaction robbed him of his dignity. Typing that sentence makes me sick to my stomach, too.
As I came to realize that those and other behaviors (eating with his hands, for example) were driven by the disease, I realized that he was doing the very best that he could with his eroding brain. When he says or does things that aren’t appropriate according to our ordinary social mores, I might explain so that others can understand that we are seeing a disease in action, but I no longer apologize. My father is disabled, and his disability is not inconsistent with dignity.
So, what does it mean to treat a person who is living with dementia with dignity?
There may be specialized instances of treating a person who has dementia with dignity (in bathing, helping with incontinence, and so on) but these general principles are a good start. What would you add? How do you respect your loved one’s dignity? And if you believe that dementia has robbed your loved one of his or her dignity (and you’ve waded through my arguments to the contrary) how do you work to restore that dignity?
Author: Julie Fleming
Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011 and with vascular dementia in 2014, until he died in 2017. And she had to learn it all the hard way. Sound familiar?
Click here to enter your name and email to receive:
10 Tips - Comfort for Caregivers.
Are you and individual or corporation that would like to assist others in this journey?