[OOPS! I’m sorry! I inadvertently sent the “One Life’s Legacy” post two days early, on Wednesday of this week—I hit the wrong button. That was a mistake and I apologize for that. I send posts on Friday afternoon which gives me plenty of time to revise and edit. I unpublished the post as soon as I could which removed it from the Substack app but, unfortunately, if you get these via email, the system does not pull them back once they are delivered to your inbox. I wanted to keep up with my original timelines so I am formally publishing “One Life’s Legacy” again with an apology if you receive it twice. There were only minor tweaks between Wednesday and now. As a “bonus,” I’m sending this, a second “post from the frontier of Dad’s Journey Home” so you have something fresh to read on this Friday in a cold and wet January—should you decide to want to.
And thank you for that. Thanks for your continued interest in Dad’s Journey Home—“to read” is an act of commitment and effort especially nowadays with everything else that competes with your attention. Believe it or not, new research is showing you are becoming a rare breed—a reader willing to devote more than one minute’s time to material that is heavy in content and concept. Realizing you are taking time from your life to read these posts makes me very, very grateful. You are meeting my Dad right where he’s at—his sons could not be more proud nor even more thankful.
~ Kert]
Now on to the rest of our true story—already in progress.
It’s 2:12 a.m. …as in “the very early Thursday, January 12, morning” am.
“Kert”
(His elevated voice over the intercom monitor. I had been hearing his babbling dreaming-aloud voice earlier. This time, I heard my name clearly.)
“Kert, I need you. Hurry.”
Me: Are you calling me Dad?
(Usually his late night/early morning calls are because he needs to use the bathroom. But he has a specific tone, word choice, and cadence of voice when that is the case. This isn’t that case. Dang.)
Dad: Yes, hurry up, I need you.
Me. What do you need Dad?
(Depending on his need, sometimes I can solve his issue simply by talking him through it through the monitors. And sometimes not. This is going to be one of those “not” times.)
D: I’m falling out of bed. I need your help. The blanket is stuck and I can’t move.
M: Dad, you’re not falling. You are fine, please go back to sleep.
D: Yes I am, Hurry up, I need your help. I’m almost on the floor.
D: HURRY UP.
(It takes 11 seconds to walk from my bed to Dad’s bedroom at 2 o’clock in the morning. Maybe 13 if I have to shake the sleepy cobwebs from my own brain—16 seconds if my right knee is hurting as I limp down the stairs—the very last thing we need is for me to fall down the stairs and injure myself at 2:12 a.m.…or at ANYTIME for that matter. I turn on the hallway light so we can see each other a bit through the early morning darkness. Dad is laying, reclined, in his chair exactly as I left him when I tucked him in four and half hours earlier—only the blanket on his body is disheveled likely from him tugging at it. The blanket was not “stuck” on anything. He was not “almost on the floor.”)
Me (silently to self as I walked to him and then stood at his room’s threshold): “Dad has dementia. Dad has dementia. This isn’t Dad, this is Dad on dementia.”
Me (out loud now): Dad, you are in your chair and you are laying down. You are not falling out of your bed. What do you need?
D: I’m not? It feels like I am.
(I can tell from the look on his face, which is panicky and unfocused, and from the energy emanating from his body, which is tense, that he’s in one of his “other states” of mind and being. Partly a dream- (night-terror) state; partly a faraway dementia fog of disconnection.)
M: No Dad. You’re in your chair. Feel this.
(I tuck the blanket tightly against his sides so he can feel that pressure. I press his shoulders back into his chair and lightly press his forehead back into his pillow. Touch sensation and pressure that is confident, firm, and with loving intent, can be very soothing and reassuring. It’s working—even at 2:14 a.m. in the very early morning.)
M: See? Feel that? You are safely in your bed. You are not falling. I wouldn’t let that happen. Feel where your body is now, Dad. You are in your chair. Do you need something else Dad? You are safe. Anything else?
D: Oh. I don’t think so. I guess not.
M: Now, it’s time to go back to sleep. Go to sleep now Dad.
D: Okay.
(His body relaxes. His tone, cadence, and manner more calm. Eleven seconds to walk back upstairs to my bed. A few minutes later, through the monitor I hear his breathing deepen—he has fallen back to sleep.)
In other words, we are really only brains.
In a very real sense, our entire bodies are essentially one big brain. I’m just being all biological and physiological here—laying aside, for the moment, all things Soul. All the connections of peripheral nerves throughout the body, attached to every square micro-millimeter of tissue through sensory neurons, are merely extensions of our brains.
We are quite literally walking and talking brains.
And at 2:12 a.m., in the very early morning, we should also be quiet and sleeping brains—the time when the brain does its vital repair, rewiring, pruning, and rejuvenation work on itself. Unless your brain is on Lewy body dementia. Then, all bets are off. What the brain “should” be doing, at that time or any other, is completely thrown out of whack by the ravages of dementia.
All perceptions and sensations are “felt” in the brain. When you stub your toe, or burn a finger, pain results but only because a series of nerves have carried a sensory message to the brain which then registers the sensation as a perception and thus “responds” appropriately. Like, “Ouch, that hurts!”
The exact same is true when the bladder or colon is full. Nerve endings in the linings of those organs send electrical pulse messages to the brain so that it can respond appropriately. Like by calling your son in the middle of the night to use the bathroom. The fuller the organ, the higher the pressure against the corresponding nerves; the greater the electrical impulse, the higher the urgency to respond. Or to get your caregiver son to respond!
Brain: “Hey body, you better do something pretty quick or YOU are going to have a whole different set of problems on your hands. And that’s not gonna be pretty!”
[Side note: we have evolved some very remarkable systems and shortcuts in our nervous systems that make this typically understood pathway, as I’ve explained it here, not quite accurate. There are other regions of the body, specifically the heart and the digestive system (of stomach and intestines) along with the vagus nerve, that seem to function very similarly like the brain in our skulls. We’ve also evolved a “timing shortcut;” meaning any message “felt” by the brain in a peripheral limb takes time to get to the brain—and sometimes, time is of the essence especially if danger is involved (danger of injury for instance). It also takes time for the return message to get from the brain back to the toe, and your toe might not have that time before something bad happens. So to mitigate and prevent too much pain and damage from occurring, our central nervous systems evolved a shortcut that allows the peripheral limb (toe, foot, leg, finger, hand, etc.) to react very quickly, even before that original message gets to the brain itself. That impulsive and hyper-quick reaction message: the flinch, the pulling your finger away from the hot flame, or the dodge away from an incoming projectile, doesn’t come from the brain, it comes from your body’s evolutionary nervous system’s shortcut.]
We are remarkable organisms within our humble place in this universe!
Throw a condition like Lewy body dementia in the mix, and you gain a whole ‘nother appreciation for something we take WAY too much for granted…most of the time. That being our normally high-functioning, organized, and efficient brain—including its vital and necessary capacity to rest in order to repair and rejuvenate itself (otherwise known as sleep).
A neuroscientist wanted to understand better the possible brain-based connections elderly patients who were diagnosed with Parkinson’s disease may have had—and how they differed from normal brains at the intra-cellular level. At the time, there was great variation among these patients in how Parkinson’s was manifesting—in other words, their conditions “didn’t all look the same.” So our doctor friend dug deeper in the only manner that would allow for conclusivity in diagnoses—he conducted autopsies on the brains of those who died from the disease. He conducted his neuropathological research while he was a 27 year old Fellow at the Alois Alzheimer laboratory in Munich Germany. He conducted this research in 1912.
His name was Fritz Jakob Lewy.
Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.
LBD affects more than 1 million individuals in the United States. People typically show symptoms at age 50 or older, although sometimes younger people have LBD. LBD appears to affect slightly more men than women.
Diagnosing LBD can be challenging. Early LBD symptoms are often confused with similar symptoms found in other brain diseases or in psychiatric disorders. Lewy body dementia can occur alone or along with other brain disorders.
It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more help due to a decline in thinking and movement abilities. In the later stages of the disease, they often depend entirely on others for assistance and care.
(National Institute on Aging, 2023)
Dad has every single one of the symptoms noted above for Lewy body dementia. Every. Single. One. In fact, he has virtually every single symptom on the entire chart to one degree or another. And he has more symptoms as well as a consequence:
Movement problems and Lewy body dementia
Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:
Muscle rigidity or stiffness
Shuffling walk, slow movement, or frozen stance
Tremor or shaking, most commonly at rest
Balance problems and repeated falls
Stooped posture
Loss of coordination
Smaller handwriting than was usual for the person
Reduced facial expression
Difficulty swallowing
A weak voice
Dad has every single one of these symptoms as well. And sleep disorders are additional symptoms. And most of his symptoms seem to be progressing at a more rapid pace. Lewy body dementia is all encompassing.
ALL ENCOMPASSING.
(Did I say the disease Dad has is all encompassing? If not, I meant to). And it dominates a person’s entire life—24/7/365. Which happens to include 2:12 a.m. on Thursday mornings.
Dad was diagnosed with LBD about six years ago following a prescribed visit to a neurologist in Yakima. We have no idea how long this journey, Dad’s Journey Home, will be moving forward. On Monday of this past week, we met for the first time Dad’s new geriatric physician in Kirkland—we moved his care from the professionals in Yakima to those much closer to home. And we have him seeing a practitioner who specializes in geriatrics—the first time for Dad seeing a doctor like this. Dad’s blood lab work, every single test and component, came back 100% within normal ranges—his blood labs look virtually like mine! Inside the rest of his body, excluding the neck up part, Dad is incredibly healthy. And he still cannot believe it.
But then you have to consider that “neck up part.” He didn’t do well at all on any of the cognitive tests.
Dad…
Cannot draw the face of a clock.
Could only recall two words that start with the letter F (“farm” or “farmer” not being one of them!)
Was not able to recall a single word from a list of words a mere two minutes later.
Could not repeat a string of 5 numbers. Could not state a 3 number string in reverse order.
Could not copy a shape that was presented to him.
Would not even attempt to count backwards, by 7s, from 100.
Did not know the current month. Did not know the current day. (Although he did remember the year was 2023).
Could not tap his leg, the signal the assessor wanted, whenever she said aloud the letter A from a series of random letters.
Okay, enough.
Of all the tests the doctors and social workers could provide, it is the cognitive testing that gives Dad the greatest angst and worry. You can draw blood from him all day and he won’t bat an eye, but present to him a cognitive test and his entire being, his energy, changes. And he’ll perseverate on it for days. And he has.
Because Dad knows. And he doesn’t like to be reminded.
But we liked his new doctor. “I hope he can help me,” says Dad multiple times—even as we were in the exam room waiting for the doc to enter.
Me: “What do you mean by that Dad?”
Dad never really puts words to what he means when he says that: “I hope he can help me.” But I know what he means and wants. He wants to be cured from his horrible disease.
It’s not hitting home to Dad that there are no cures for dementia, LBD, or Parkinson’s.
No cures.
My Dad is still in denial—or holding out hope for an outcome that can never be. And as you’ve read in past posts, he was never Eldered to attain the grace needed to accept an unchangeable condition without succumbing to numbing despair and depression. That Eldering would have helped—so know, please, he’s helping YOU now. There IS grace to be found in every condition you cannot change.
But here’s the thing…
My Dad is not Lewy body dementia. And he’s not Parkinson’s. He’s just my Dad—just that, only that. It’s just this now. And now, until he dies, he, (we), reluctantly lives with dementia.
And that’s okay. It’s gotta be okay. Wishing it were different would mean we would not be blessed with the grace that even dementia can bring to our lives. And there IS grace here.
Even in the very early mornings of January Thursdays.
It’s now 3:48 a.m., in the same very early morning, only an hour and thirty-six minutes later:
“Keeeert.”
“Keeeert.”
(In a more calm, rational, “with it” tone. Dang.)
Me: Are you calling for me Dad?
(I know what’s coming.)
D: I need to go to the bathroom.
(Eleven seconds to walk to his room.)
T plus 194 days…and counting. Sleep well…and soundly. And may you dream of only joyful things. If you can do that for most of your nights, please consider yourself blessed. Because you are.
Kristin is; I’m just along for the ride with Dad. Kristin makes this entire service to Dad possible. Thank you Jim! We appreciate your kind words and thanks for your continued interest and reading.
You and Kristin are amazing.
Kristin is; I’m just along for the ride with Dad. Kristin makes this entire service to Dad possible. Thank you Jim! We appreciate your kind words and thanks for your continued interest and reading.