From an early age as I used to visit family members who lived in nursing homes, I got the sense they were treated differently. Sometimes it was because they weren’t dressed in their own clothes but rather hospital gowns. Sometimes it was because they were sleeping in rooms with other people they didn’t know. I was a kid; I didn’t quite understand it, but I knew it was different. I remembered when I was hospitalized at the age of 5 with pneumonia. I got to wear my own pajamas, sit with the nurses at the nurses’ station while I ate popsicles and to pass the time, I read books to other kids who were there. I felt so special! Nursing homes didn’t seem to make people feel that way.
Fast forward to now. In my 50 years of life, I’ve now come to believe that my experience as a child receiving care was not like the experience of an Elder. In fact, the experience of an Elder living life is vastly different than a younger person. We live in a world that values youth, vitality, quickness and instant gratification. A thoughtful, methodical, measured approach is not always viewed with enthusiasm.
I am developing a hypothesis that I want to share with all of you. The reason societies have certain negative practices, policies and systems in place to support Elders is because we have a fear of aging. We are afraid of the natural process of growing older. Is it because we fear losing certain abilities, both physical and cognitive? I believe the answer is yes.
Let me back-up a little. Have you had the experience of buying a greeting card recently? Occasionally, or maybe always, you don’t want one that has sappy rhymes. You just want funny. Take a quick test the next time you pick out a humorous card. Count how many cards you have to open before you find one that doesn’t mock, ridicule or generally make fun of age or of getting older. Maybe it’s about being “over the hill” or maybe it’s about cognitive loss, hearing loss, or so many candles on a cake that you could start a fire.
Better yet, go to a party store and find the milestones birthday aisle. You’ll see special multi-colored decorations for a 16th, 21st and 30th birthday. You’ll also find the black decorations to commemorate the years that some people won’t admit to, like “being 39” again. There are black balloons that say something like “Over the Hill” and there’s the “Diaper Birthday Cake.” Yes, I have a picture of it and you should be appalled.
I’m a believer that humor is an essential component in our lives, but this isn’t humorous. This is an expression of something else. What happens when we experience fear? We can flee or fight, think anti-aging. We can marginalize a person, group of people or a situation. In some cases, we may completely ignore someone or something with the hopes that they or it will go away. Or we may make fun of it to keep it at bay, to not let it get too close. This is true for dementia as much as it is for growing older, and what if you’re doing both?
We are all working so hard to change the culture of care for elders and those living with #dementia. We have changed language and practices, we have written and read many books, attended numerous trainings and workshops and we know and have seen that all those steps on the journey have made a difference. And yet doesn’t it seem that we still have so many people to reach and so much to do?
Our cause needs to broaden. The work we need to do goes beyond care communities for #Elders. It involves us, our families, friends, colleagues and the vast number of people we have yet to meet. It involves everyone. It involves people living with dementia- their families, friends and other care partners as well.
Pioneer Network has been the leader in the culture change movement. We have been the disseminator of information, best practices, tools and tips as well as the connector to the array of organizations that are directly helping change the culture of care for all of us, no matter our abilities, disabilities or where we live. One of those organizations, #Validation Training Institute is the leader in providing an evidence-based method in communicating with, caring and supporting #elders living with cognitive decline. It’s now time for all of us to tackle this broader mission that is the foundation of both organizations, to change our culture of #aging to one that is life affirming, respected and humane. Let’s organize and walk this path with each other…together we can make a difference!
Penny Cook, MSW
President & CEO, Pioneer Network
Penny is the President & CEO of Pioneer Network, a non-profit organization dedicated to changing the culture of aging and the care and support provided to elders. She has been with Pioneer Network since January, 2018 and has worked in the field of aging and health care for over 25 years.