I write in my book: “Every crisis—be it health, financial, family, or relationship—carries a significant spiritual dimension. Learn to recognize it. It could save your life.”
A crisis like Alzheimer’s has the capacity to destroy families. I began to realize this early on while reading a book by Frena Gray-Davidson, a professional caregiver: “The process of Alzheimer’s disease is connected with losses, difficulties, and agonies. The central difficulty, however, and one that has been largely ignored by Alzheimer’s professionals, is the crisis of dysfunctional caregiving.” (My emphasis).
She continues in Alzheimer’s Disease Frequently Asked Questions: Making Sense of the Journey: “The dysfunctional aspect of caregiving has been allowed to become the so-called norm of Alzheimer’s care…(this) disease touches us at the very root of our deepest, darkest terrors…Alzheimer’s disease brings us face to face with the central crisis in our society: the crisis in which the parent does not meet the love needs of the child. We live in a society of the emotionally orphaned.”
But Ms. Gray-Davidson is a woman of practical hope, not gloom. Otherwise, why write a book for caregivers?
“Even if you have been one of those millions of orphans who never experienced enough love, you can still learn to be a good caregiver and, in doing so, you will become healed. This is the most powerful message that Alzheimer’s disease carries in the heart of its own darkness: the disease itself can become a source of light and love.” (My emphasis again).
Yet she cautions: “Remember, however, the warning of Trappist monk Thomas Merton: ‘He who attempts to act and do things for others…without deepening his own self understanding, freedom, integrity, and capacity to love, will not have anything to give others.’”
When I first read her book, I began to realize, dimly, how intertwined issues of the body and mind are with those of the spirit. Two decades later, I realize that her insights helped set the cornerstone for my search for survival, healing, and meaning. Shortly after turning 50 in 1997, my wife Martha was diagnosed with early onset Alzheimer’s.
In trying to cope with our family’s new, bizarre landscape, I soon realized that I was in as much need of healing in my own way as Martha was in hers. Long forgotten resentments were embedded within us both. Martha could quickly direct her anger at whoever was in her line of fire. I, on the other hand, felt my approach was more righteous by keeping mine stuffed inside. While growing up in comfortable, middle class families, Martha and I were each in our own way, to one degree or another, “emotionally orphaned” children.
Our family has had to deal with Alzheimer’s, but I’ve seen enough other families trying to cope with other kinds of crises to recognize this culture's emotional starvation.
Corrosive spiritual issues lie hidden in the heart of many such crises. These can go by many names, such as neurosis, denial, obsession, fear, manipulation, anxiety, guilt, shame, bitterness, depression. Regardless of what I call such issues, I learned over the 17 years of our journey that I had to face them or risk the potential dissolution of our family.
My faith tradition is Christian, and with uncertain steps I was drawn more deeply into this tradition than I imagined possible, hoping to discover some meaning, some way out, some ground of stability.
You may come from a different faith, or you may say, “I’m an atheist; I don’t have a faith.”
But to quote a mentor: “We all have faith. Either we have faith in our problems, or we have faith in God and his solutions.” Or if you prefer…Do I choose to focus on my problems or do I focus on a power far greater than myself and the resources it offers?
I’m talking about trying to survive, not score theological points.
Many of you have read my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. If you have, you should realize by now that my trying to focus on God and his solutions rather than on our problems was most difficult for me. In fact, when I told my mentor this was the hardest thing I ever tried to do, I broke out laughing when he retorted, “I didn’t say it was easy, Carlen. I said it works.”
Regardless of your belief or mine, I suspect each of us is faced with a similar difficult decision: Do I want my family to be consumed by this crisis? Or do I want us to be drawn to some higher ground, a ground of wholeness?
That in a nutshell describes the arc of our family’s story that I try to tell in my book. An arc that bends ever so fitfully from a powerful undertow of pain, fear, and alienation to a palpable sense of our Creator’s embrace, an embrace of Martha, our children, and me with a love deep, intimate, and true.
Welcome, new readers
The number of this blog’s readers expanded dramatically recently. After one of my posts went live nationally on the Alzheimer’s Association’s website, 200-plus new readers have signed on. Thanks for signing up! By now you should have received an email pointing you to the archives of my blog, which I introduced in September 2015. Feel free to refer to these to catch up on topics that interest you.
Are you feeling lucky?
On occasion I give away a book that was important along our family’s journey. I’ve already given away Ms. Gray-Davidson’s book above, but I’ve decided to offer it again. It was that significant to me early on. It’s practical and it’s hopeful. Even though it was published in 1999, most of it should hold true today except for references to the latest research, which can be found on the Internet.
Anyone is eligible to enter this giveaway, whether you subscribe to my blog or not. Simply send an email to email@example.com between this Thursday, November 10, and next Tuesday, November 15. Indicate that you would like to be included in this book giveaway. It will help if you put in the subject line: BOOK GIVEAWAY. One person—maybe you!—will be selected at random from those entering. I will send you a confirmation email on Wednesday, November 16. You will have 48 hours to respond. If I don’t hear back from you by then, someone else will be selected at random. For more details, click Book Giveaway.
Thanksgiving and Christmas are around the corner
If you think our story is worth sharing, perhaps you would like to give my book, A Path Revealed, to family and friends who might also find value in it. Or maybe your book club would like to read and discuss it. You can purchase the book several ways:
1) At your local bookstore or at a Barnes & Noble, which may not have it on the shelf but can be ordered. 2) On Amazon. 3) Via my publisher Paraclete Press, which also offers discounts for multiple copies. To do that, contact Sr. Estelle Cole by phone: 774-801-2030 or by email: firstname.lastname@example.org.
P.S. 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.