“In the final analysis, the experience of loving a person with dementia is a unique, mutual spiritual path. It is a spiritual path in which we learn to love generously, without constraint, without praise or thanks, sometimes despite a slap in the face. It leads us to our own freedom.”
That’s Dr. Richard L. Morgan, Ph.D., talking in his book No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia.
“Reaching this point spiritually is not easy,” this retired minister and counselor concludes. “It requires self-care; it does not ask for martyrdom.”
I caught up with Dr. Morgan—who co-authored this book with Dr. Jane Thibault of the University of Louisville’s School of Medicine—after learning of his long involvement with Alzheimer’s and dementia patients. Richard’s decades of experience resonates with key aspects of mine as I cared for my wife Martha over 17 years.
As mentioned before, I’d always thought that illnesses and diseases were physical issues that needed to be treated as such. But when our family was flattened by Alzheimer’s, I began to understand that this insidious disease also is embedded with emotional, psychological, and spiritual issues that need to be recognized and dealt with however we can—as are other crises. Both victim and caregiver can be gripped by fear, guilt, bitterness, alienation, depression, and stigma. Not to mention that dark secret we caregivers carry that I shared in my last post.
Richard recalls the time he learned that dementia patients live in their own world. He was a nursing home chaplain then. “As I attempted a homily during a worship service, a woman blurted out: ‘This is the nearest to nothing I ever heard in my life,’ and promptly wheeled out of the chapel, followed by most of the residents. That soon ended my homilies for people with dementia.”
Richard spent most of his career as a Presbyterian pastor in Morganton, NC. In his spare time, he authored or co-authored 23 books. Retired at 62, he now lives with his wife in a continuing care community outside Pittsburgh, where he volunteers to help in the memory care unit, visiting 40 residents or so with Alzheimer’s or related dementia who “live in comparative isolation.” Now 89, Richard “feels God’s call to be their advocate and caregiver. And this calling has become my passion in my retirement years.” He’s also a co-founder of Clergy Against Alzheimer’s, a multi-faith network of UsAgainstAlzheimer’s.
I’ve yet to read No Act of Love Is Ever Wasted (2009) but I’ve looked closely at enough excerpts to know it would have been a valuable resource were it available in 1997 when Martha was diagnosed. As a consequence, I’m making it available this week as a free book giveaway. More on that later.
I asked Richard what he’s learning from his experiences with dementia…
Me: How has your approach with dementia patients changed over the years?
Richard: Back when I was a nursing home chaplain, I followed the staff’s concept of “reality” when they asked their residents such questions as What time is it? What’s the weather like? Who’s the President? What’s going on in the world? I failed to understand that people with dementia are NOT involved in the present; they are living in another world. The staff was locked into the medical model, and I went along with that although I tried to be a friendly visitor.
Now what works surprisingly well for me is being able to help people remember their past. I use pictures of their family, pictures from Reminisce magazine and from other places to help trigger their long-term memory. It was a year or so ago that I began to use Lester Potts’ art work with amazing results. People who never spoke or who talked in garbled language became lucid.
Note: The late Lester Potts was a saw miller in rural Alabama who’d shown no talent or interest in art until after he was diagnosed with Alzheimer’s. Samples of Potts’s art are shown below; more can be seen at www.lesterslegacy.com. Richard co-authored the book ‘Treasure for Alzheimer’s’ to show ways in which dementia patients have reacted to these paintings. He shares his insights in a short YouTube conversation with Dr. Daniel Potts, the son of Lester and a distinguished neurologist and dementia advocate in Tuscaloosa.
(You may remember that a passion for art also blossomed in my wife, which prompted a resurgence of Martha’s confidence.)
CM: Humor arose from time to time when interacting with my wife. Have you encountered any in your relationships?
RM: Yes, one couple comes to mind. Both the husband and wife had dementia. The husband asked me to help him get a divorce, and his wife asked me to help her marry him.
CM: What’s been your toughest assignment?
RM: Even though I’d been a Hospice chaplain, being present when a resident was dying is the hardest.
CM: What do you see as the most important need for a person with dementia?
RM: To consistently visit them while being a friendly, non-anxious presence. This is especially true for residents whose families rarely if ever visit.
Also, from a spiritual point of view, it’s vital to connect in ways that acknowledge their souls (or spirits) are still present, even if their minds and verbal skills may not be. For example, if I’m with a person of Jewish heritage, I may share a Star of David or a Menorah. With a Christian, obviously the cross of Christ, or we may sing a well known hymn like Amazing Grace or The Old Rugged Cross.
CM: Are the emotional and spiritual issues of a patient and caregiver being addressed any more today than when you were first involved with dementia?
RM: I helped start a caregiver support group here nine years ago. I’ve listened to their heart-wrenching stories of the burden they bear for their loved ones who suffer from this disease. Caregivers tell me they’ve found legal and medical assistance, but nowhere can they find emotional and spiritual support.
CM: What do you consider your worst mistake?
RM: Not following up on my visits. Since then, I’ve learned to be more intentional.
CM: From your experience, what are the most important things you would emphasize to a caregiver?
RM: First and foremost, take care of yourself. You can’t care for your loved one if you neglect your own needs. I know this mantra has been repeated so often it’s almost a cliché. But it’s nonetheless true. Whatever your situation, try to get help. You can’t do it by yourself. Try to enlist family members and friends in the care. It’s not always possible, but it is essential.
Finally, commit to listening patiently to your loved one. Even accept their anger and dismay in a loving way. I know this can be hard to do, but somehow, some way it’s vital to your loved one’s health and wellbeing—and to yours as a caregiver.
CM: Finally, can you sum up what you continue to learn from those with dementia?
RM: Live in the moment with them. Accept them where they are in their world, not yours. Never argue or contradict what they’re saying. Even use “therapeutic lying.” In other words, talk with them about whatever they want, whether you consider it to be true or not. Finally, this took me a while but I’ve come to understand that these persons are friends with souls, even if their minds are gone.
Thank you, Richard, for sharing with us your hard-won wealth of experience. There’s a richness of wisdom here that goes far beyond the issues of dementia.
If you’d like to put your name into the hat for the free giveaway of Richard Morgan’s book No Act of Love Is Ever Wasted, here’s what to do:
- Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to email@example.com between this Thursday, December 14, and next Wednesday, December 20, by 11:59 PM EST. Indicate that you would like to be included in this month’s book giveaway and put in the subject line: BOOK GIVEAWAY.
- One person will be selected at random from those entering. I’ll send you a congratulatory email on Thursday, December 21. You will have 48 hours to respond to my email. If I don’t hear from you by then, someone else will be selected at random.
- For more detail, click Book Giveaway.
May each of you have a wonder-filled Hanukkah and Christmas season that transcends any and all our biases and fears. I’ll be taking a break through this season. In fact, I just saw our 6-year-old Olivia Grace in a Christmas pageant; I hadn’t realized that Jesus’ mother Mary hopped around so much. And I heard 9-year-old Nelson give a speech on “What’s So Unique about Redheads.” Unique indeed. We’ll reconnect in 2018.
P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.
P.S.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon. Think about giving it to a friend or family member this season who’s burdened with a worrisome crisis.