When speaking to groups of caregivers, I often think of the phrase "parenting our parents" as having a negative connotation. While I completely understand the analogy between caring for a child and caring for an elder in decline, I feel the phrase itself is demeaning. Yet, I've had to use references like this, myself. Sometimes, it's nearly unavoidable. But I do try.
In the article Why You Can't Parent Your Parents ,I compare an elder's life to a rose - the promise of the bud, the full bloom of maturity, followed by the loss of petal after petal as the rose diminishes until all that is left is the nub of death. That rose still bloomed. That rose still "accomplished things." It shared its beauty, its fragrance, its reminder that life has seasons of joy. That rose may have been part of a wedding bouquet or a congratulatory birth gift. It may have grown in someone's yard, humble yet lending beauty and enjoyment to all who walked by. That rose did leave a legacy, as do our elders.
An op-ed piece on The Bulletin titled Defending the Dignity of Those With Dementia, by the Rev. Tadeusz Pacholczyk, Ph.D., who serves as the Director of Education at The National Catholic Bioethics Center in Philadelphia, brought these thoughts back to me. I felt, after reading his wonderful article, that I needed to address this idea once more. I also know I'll never stop writing about preserving the dignity of our elders, because this is something so dear to my heart.
As a caregiver to multiple elders over a long period of time, I've faced many challenges. Many of these times, there were people who disagreed with me as when I joined in my father's world to try to make the life in his brain a good one, since he couldn't live his life in the reality the rest of us saw. Some would have said that my helping him "finish his career" was demeaning. To me, it would have been demeaning to keep telling him he was wrong; to keep telling him he didn't finish his medical degree; to keep telling him he no longer was in charge of local public health issues. To me, helping him feel he mattered was one way to preserve his dignity.
Every family is different. I can only tell my own stories and say what worked for me as a primary caregiver. My extended family joined in the best they could, each with a little different take, but it helped Dad survive with some self respect in tact. No one was hurt. Dad was comforted.
I've written many articles on preserving our elder's dignity and touched on the topic in hundreds of others. Interested readers may want to go back to Can Caregivers Take Away Dignity by Overdoing the Help? and Marking Our Journey: The Importance of Ceremony During Life Stages and Beyond to read examples.
In this article, I'm honored to be able to give a little push to Pacholczyk's excellent article on this topic. Throughout the article, he quotes many experts in caregiving. One of many quotes I agreed with down to my soul was this:
"Steven Sabat, writing in The Journal of Clinical Ethics, challenges the reduced expectations for quality care for those with dementia: ‘Is his or her personhood recognized and supported, or neglected in favor of the assumption that it barely, if at all, exists...do we assume that the afflicted rarely if ever recognizes the need for company, for stimulation, for the same sort of treatment he or she would seek and be given as a matter of course in earlier, healthier days?'"
Pacholczyk himself writes "Those suffering from dementia challenge us in a particular way towards the beautiful, and at times heroic, response of love..." To get the full impact of his work, you'll need to read Defending The Dignity Of Those With Dementia. Please take the time to do so.
Published On: October 30, 2010