The painting is called "Spring Matrix" and is by Frank Howell. It is a limited edition serigraph. Copies are available at FrankHowellGallery.com
We purchased over a dozen reference books on Alzheimer's and the care of those afflicted with it. Without exception, each book put a kind of "gloss" on the disease. Not one book we found really got down to the nitty-gritty clinical behavioral elements that would manifest as Alzheimer's progressed. . . . We were literally appalled to realize that the books had skimmed over the worst of it.
Mary Summer Rain
Love Never Sleeps: Living at Home with Alzheimer's is the story of the last few years of Mary Belle, whose greatest fear Alzheimer's disease became her final reality.
The story is told by Mary Summer Rain, author of over twenty books built around her own dreams, visions, and "quantum meditations." In Love Never Sleeps, she portrays Mary Belle's journey through the experiences of two women the author and her friend Sally as they cared for Sally's mother in their remote mountain home.
Lora: I'd like to start by asking about the beginning of this journey, the recognition of Alzheimer's. In Mary Belle's case, I read that she had been suffering for a while when you and Sally discovered what was going on. Can you talk a bit about the realization experience for Mary Belle?
Mary: Having been a highly intelligent and active individual all her life, Mary Belle just couldn't believe that her mental faculties were slowly diminishing.
During her more lucid moments, the realization of her degenerating mental capacity caused great frustration. For example, she became increasingly upset with herself for not being able to verbalize the precise wording for her thoughts. And a sense of mortified humiliation came when moments of lucidity fluttered to the fore of her mind immediately after an incident of lapsed hygiene had occurred, such as an accident of bodily function.
I personally find it extremely difficult to even imagine how it would feel to know that my thought processes were eroding, never to be restored; that I could no longer perform the most rudimentary acts of daily living; and that my once polite demeanor had turned abusive.
At this time, there is no cure for this disease. That kind of hopeless prognosis must be devastating to deal with and accept with any measure of conviction or grace. It would be difficult not to have a defeatist attitude regarding the cards that the Fates had dealt.
Lora: Do you think Mary Belle knew what was happening to her before Sally arrived on the scene?
Mary: On some level, yes, I think so. She knew that she'd been getting lost while driving in familiar neighborhoods. She knew her driving wasn't what it once was. She was aware of the cooking accidents that were occurring more frequently. She recognized an increasing inability to keep her medications straight. And she readily admitted to being more and more forgetful.
However, on the conscious level she had not given consideration to the possibility that these incidents were anything more than simple aging. She was using denial as an emotional shield, attempting to bar from her sight the face of reality.
Lora: How is it that Sally's sister, Judy, who was nearby and monitoring Mary Belle at the beginning, could have overlooked how far Mary Belle's condition had progressed?
Mary: She overlooked it in the same way that Mary Belle herself did. Family members also utilize psychological escapism and denial. They often choose to accept any reason for behavior other than Alzheimer's disease.
In this manner, people strive to maintain a distance from the additional responsibility and decision-making that's called for. They make a desperate effort to maintain the status quo of life's routine and to avoid any greatly disruptive element that could invade their sense of normalcy.
Lora: Could you speak to your own realization that Mary Belle had Alzheimer's?
Mary: When Sally and I first brought Mary Belle out to live with us, we initially thought we were dealing with her mother's purely physical, debilitated state, plus "some forgetfulness" due to aging. Not much time passed, though, before the true extent of Mary Belle's declining mental state and diminishing living skills became glaringly apparent.
We knew it was Alzheimer's even before the doctor was prepared to make the diagnosis. I don't recall our reaction as being anything more than acceptance. By this, I mean that we didn't reassess our situation, our decision to take care of her we just went forward with it.
Reality was what it was. A promise had been made. Sally had promised her mother that she'd never go to a nursing home, and that was pretty much that. I backed up that promise one hundred percent and we took each day as it came.
Lora: Before reading your book I knew of Alzheimer's but I had no idea how traumatic this illness was. Did you have any clue as to the magnitude of what you were taking on when Mary Belle came into your care?
Mary: Absolutely not. After we knew what was wrong, we purchased over a dozen reference books on Alzheimer's and the care of those afflicted with it. Without exception, each book put a kind of "gloss" on the disease. Not one book we found really got down to the nitty-gritty, clinical behavioral elements that would manifest as Alzheimer's progressed.
When Mary Belle entered each of those declining stages, our job as her caregivers became more complex, time-consuming, and difficult to maneuver, both physically and psychologically. We were literally appalled to realize that the books had skimmed over the worst of it. For example, there are many and varied ways in which an Alzheimer's patient slips into physical and verbal abusiveness. The books had not explained this in any detail, so we were not prepared.
Even many medical personnel we dealt with didn't recognize Mary Belle's behavior as being associated with the disease. They literally were not knowledgeable or experienced with the many and varied behavioral aspects of Alzheimer's.
We were incredulous that this kind of ignorance existed in this day and age on the part of the medical practitioners who were supposed to be there to help. But we realized that the information they needed just wasn't out there. From the physicians to the EMT's to the general public nobody had a clue. That blew us away.
It was because of this gaping hole in the information available to us that I decided to "tell it like it is." I knew that there was a void, and I felt called to fill that void.
Lora: What was the most challenging aspect for you in your three-and-a-half years with Mary Belle.?
Mary: For me, it was my lack of physical strength to actually deal with Mary Belle during her violently combative incidents. I could handle the verbal abuse. That wasn't an issue for me because I knew that the unkind words flung at us were not really coming from the Mary Belle I had known they were coming from the disease.
Lora: Do you think that it was more challenging for Sally, because of it's being her own parent?
Mary: Definitely. The patient who no longer recognizes the caregiver as a daughter or son is seeming to sever deep familial bonds. One day, Mary'd believe that her daughter was a visiting neighbor. The next day she might think that Sally was the plumber, come to fix the leak in the kitchen sink. The long-time experiential relationship between the two was now carried only by one one who still remembered all the love that once was shared between them. One who still loved, because she had not forgotten the past.
For Sally, I saw that the issue of abusiveness coming from her mother was a real psychological hurdle. How do you handle the fact that your own mother just threw hot coffee in your face and then brought the empty cup down with force on the side of your head? How does a daughter handle abusive name-calling from her own mother? How did Sally feel when her mother stuck her tongue out at her, or bit her, or tried to shoot her friend me in the back with a shotgun? It's a heavy load to have to carry, this loss of a parent's normal kindness and nature, the trusting and familial bond.
Lora: Clearly, caring for Mary Belle was a spiritual practice unto itself. It seems that you must have remained rooted in the moment to be available to face the rapid changes in her behavior. Can you talk a bit about predicting the unpredictable and being ready for anything with an Alzheimer's patient?
Mary: I like your analogy of being rooted in the moment. For someone committed to being an Alzheimer's caregiver, that ideology is never more paramount to successful effectiveness. An Alzheimer's patient can be as sweet as a Krispy Kreem doughnut one minute, and then in the blink of an eye grab the nearest lamp and swing it at you.
Staying rooted to the moment is a basic rule a basic tool, if you will for every Alzheimer's caregiver. You never turn your back. Expecting the unexpected is the Number One Rule.
And the physical abuse isn't the only aspect of the disease to be ready for verbal abuse comes hand-in-hand with that. Mary Belle could be extolling our kindness and generosity one minute, and the next, telling people that we don't feed her and that we're starving her dog.
The unexpected becomes the norm. The aware Alzheimer's caregiver knows this and is always on her toes.
Lora: When you and Sally decided to bring Mary Belle to live with you, you say in your book that you both thought this was the "spiritual" thing to do. Further on, though, you acknowledge that this course of action is not the only possible correct and loving choice. Could you amplify on that?
Mary: Whenever difficult decisions have to be made in my life, I always find myself seeking the bottom line: What is the most spiritual thing to do? The decision to take Mary Belle into our home and care for her for the remainder of her life here on this earth was generated from that foundational concept. It was the spiritual thing to do, and there were no doubts, no indecisions, associated with that.
And Sally had previously promised that her mother would never go into a nursing home. The only way to keep that promise was to bring Mary Belle home with us to live out her days. We never regretted the decision.
However, the fly in the pie regarding this decision-making criterion is that, more times than we'd like to believe, the "spiritual" thing to do is not always what we envision it to be. We forget to factor in a wide variety of extenuating circumstances, personal aspects, financial elements, contingent complexities, and so on.
In the case of deciding where to best care for an Alzheimer's-afflicted parent or loved one, the most spiritual thing to do is to never stop loving that parent, no matter where that loved one ends up. See what I mean? Our experience with Mary Belle has taught us this.
I believe it's an invaluable spiritual concept to grasp because, for those whose lifestyle or life circumstances make it impossible to care for a loved one in the home, a nursing home placement does not equate to lesser love or caring. It's not the placement; it's the continuing love that matters.
Lora: Is there anything you or Sally would like to add?
Mary: We would like to convey the dire need for honest information regarding this disease.
Every EMT, physician, and nurse, especially, needs to be informed about this disease, because someday they're going to be confronted with it. Someday, they're going to have a need of that knowledge. And the same goes for Jane and John Q. Public. Alzheimer's touches one out of every four people in some way, whether through personally contracting the disease or having a loved one afflicted with it. Whether it's yourself or a loved one, decisions must be made, and good decisions depend upon knowledge.
We want to thank you, Lora, for giving me this opportunity to share this experience with your readers. It's always hard talking about this, because it brings back so many memories. Yet I feel that the experience and the resulting book were a part of my purpose here, one that I never expected. Life's so full of surprises!
And finally, Sally and I want to express that having Mary Belle with us indeed enriched our lives. Unbeknownst to her, she taught us some profound spiritual bits of wisdom.
She taught us that love doesn't have to be reciprocated in order to keep it strong within the heart. She instilled a greater measure of patience and acceptance. She heightened our awareness level and brought our priorities into a more defined clarity. Most of all, Mary Belle taught us that, no matter how bad it gets, no matter how dark it becomes, no matter how tired you feel, love never sleeps.
Mary Summer Rain is a visionary author of twenty books, including the deeply insightful "No-Eyes" series and a guide to dream symbology, and numerous works articles on spiritual philosophy and the ancient wisdom of Mother Earth.
She also has created two children's books: Star Babies and Mountains, Meadows, and Moonbeams. In addition to Love Never Sleeps, scheduled for June, Mary has another book being released later this year, titled Tao of Nature.
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