Light

April 24, 2019

Turning over in bed this morning, I paused for a purposeful stretch, allowing my muscles to luxuriate in the  space provided to them. I noticed the subtle soreness in the quadriceps so my brain voluntarily explains to itself that it would be a good idea to fit in a recovery run after yesterday’s 5K race. Race is a loose term for me these days. Running does not mean the same thing to me as it once did, now nearly eight years after completing my first marathon. Running, these days, is a singular portion of the effort to stay brain healthy. I re-joined the local “Flying Feet” group to provide accountability, routine, and friendship in running. If I take a moment to grade myself on the three components for which I joined, I give myself a solid C. I am not engaged with scheduling runs outside our group runs which occur once a week, some of which I have skipped. The routine is no routine. The first few weeks I mapped out on my calendar when I would fit in running and then that dissolved into busy-ness and lack of motivation. As for the friendships, I am so happy to re-connect with a few of the “regulars” with whom I ran years ago. However, these days I feel more benefit as a solo runner, allowing my brain to flow freely and explore the emotions and the stress that build over and over again.

 

As I complete my adjustment in my very comfortable bed, I am careful not to disturb Jerry, or Turk, our loyal doggie family member who is stretched out on the rug on my side of the bed. If I move around too much Turk will awaken, perform his best downward dog, and look at me with urgency to get outside.

 

Without any warning at all, like a tornadic force from deep inside my core, emotions are suddenly unlocked during my movement. In these early morning hours, I am at my most vulnerable and exposed. The area of my mind that self-protects has not yet punched in for the day, allowing the dark, scary thoughts to surface. My instinct was to scream, to release whatever the ache and darkness was that bore a path through my insides, climbing to my heart, then my throat, and out through my mouth. Involuntarily, I clamped it down. Don’t wake them. Then the sobs come, as if vomiting with tears. I worked hard to muffle the noise and the movements that accompanied the sensations. What was happening to me? Before I could finish that thought, I received an image from my visit with Mom yesterday. Instantly, I recognized what was happening. Each visit with my Mother, who is 91 and living, or dying, with vascular dementia, I take great effort, and focus, to see her inner and outer beauty, I see our relationship, the bond of deep love that makes my heart burst. I hear myself explaining to my friends, or, my friends explaining to me, “How wonderful you still have this time with your Mother!” Yes, truer words were never spoken. It is wonderful. Being able to see her smile when I come in the room and greet her, “Hi Mama.” Holding her small, warm hand covered in translucent skin. Kissing her soft cheek and turning my head so she can kiss my cheek in return. Doing what I can to hug her as she lays motionless in bed, or while she sits in her massive wheelchair. In fact, when timing works out, I climb onto the hospital bed, squeezing myself between the side rails and Mother’s body, cupping her shoulder with my left hand and patting her right shoulder with the other. I press my head into her chest where I hear her heart pounding out a familiar rhythm. It’s amazing and beautiful, even when tears sneak to the corners of my eye and fall onto her beautiful teal green sweater. I am holding my Mommy and isn’t that a wonderful thing? I will miss this feeling when she leaves.

 

Boom! There it is. As if someone pushed rewind on a rarely used VCR taking me back in the movie I’ve already watched. I see images through distracting tracking lines across the screen. The lines are the distortion of disbelief that this is happening all over again. This scene of the film is where the disease of dementia steals clear thinking and logic. Where the knowing of current events, ages, names, years at school, marital status, careers, and connection to people living or dead becomes warped and confused in a hazy day to day existence. When Mom speaks it is often to tell stories about friends and family members, now deceased, as if the events occur in real time or a few days ago, or last weekend. During my visit yesterday she told me of an adventure she had with Bob (still alive) and Helen (passed) Dubel returning to play golf. The funny thing here is that Mom never really played golf and says she doesn’t like it even as she tells me the story. Perhaps they played as a foursome, with Dad (passed), when, together they attended Western Maryland College.  She will talk endlessly about “the boys” getting home or going to school or getting to bed on time. When questioned, “Which boys Mom?” The reply changes but might involve my Brother and his childhood friend, David Crow. In fact, for several days in a row, Mom talked endlessly about the Crow family, mentioning her old friend Ruth Crow (passed) and all the plans they had, or, recalling what they just did. Then there are the tales of Margie (passed) and Bob (passed). When Mom’s Father died suddenly from a heart attack when Mom was just sixteen, Margie, Mom’s older sister, and Bob (Marge's husband) watched over Mom, their friendship and deep connection brings them front and center to her current experience. Every now and again, Mom will call out to Margie, mistaking either my Sister Wendy or me, for her. It makes me wonder if in this end of life stage, the veil drops and all of those she held dear are returning to guide her way. The stories developing out of a blending of past and present, alive and dead. I’ve avoided the word “dead” but decided to just state it plainly. (Continued below)

 

 

My beautiful Mama. What do her eyes see?

(Photo credit: Wendy Smith Phillips)

 

Mother’s story is becoming more closely matched to that of my late Father who slipped away incrementally over years from Alzheimer’s Disease (Click Here to learn more). Alzheimer’s, a form of dementia, is clever and systematic. It shuts down areas of the brain beginning with mild symptoms like confusion or repeating questions, then loss of words and speaking gibberish, advancing to take away walking, motor skills, and eventually swallowing. When there is no swallowing, no eating or drinking, death is inescapable. 

 

Mom is effected by vascular dementia (Click Here for more information) which results from impeded blood flow to the brain. If you can imagine the damage done by plaque in the arteries and how we understand the heart to become effected, similarly, the brain suffers from this lack of nutrition, oxygen and life. Over time, the brain’s operating system fails. Vascular dementia also occurs as a result of a stroke. In some cases damage is reversible. Mom seems to be on a continuous decline versus the spotty disfunction of a few months ago. Is it possible that she has developed Alzheimer’s Disease? Does it matter? I mean it is what it is right? (I am not really fond of that saying but sometimes it just fits.) Right, let’s just get through each day making Mother as happy and as comfortable as possible. Yes! Agreed. But then there is this, if Alzheimer’s Disease is present, co-morbid with the damage done to the vascular system, could it impact our family? Indeed it can and most certainly will, depending on specific factors. 

 

If you ever took Statistics as a class in high school or college, you will recall the “if this and if that then this result will occur” reasoning. I’m talking about very basic statistics. I took the class as a Pass/Fail option at Towson because it fulfilled a general elective. I didn’t love the class and I don’t love this game of what ifs and plugging facts into formulas in order to answer the question, will I develop the disease? With Alzheimer’s Disease genetics can play a role. (More on Genetics here). Although there is no cure, just recently talk of prevention of the disease has begun. Exercise, a heart healthy diet, staying social and continued learning are four factors that may build a protective barrier. (More on prevention information here.) Back to Mom.

 

If I speak my truth, I will tell you that I am hurt and I am depressed when I visit with Mom because I cannot relay to her the latest developments in life. I long to exchange dialogue with her about my daughter’s upcoming prom and graduation, or, the story of our visit to Arizona to become oriented with her college campus, classes and the amazing planetarium and observatory in which she will follow her passion! I share the information and she will respond, sometimes very appropriately, but then we get lost in the weeds of her disease.  I want to explain that Denny is finishing his junior year already, his junior year! Wow, how time seems to steal away like a thief in the night! I want her to understand the advances in research funding to find prevention and a cure for Alzheimer’s disease and how my (not so small) voice, along with about a thousand others continue to tell our law makers what we need to move the needle of this solution forward. Does she get what it all means? Does she know that I am working toward a peaceful resolution of this disease for Dad, for her and for all of her children, grandchildren and great-grandchildren? I hope so, but the connection is becoming distorted, the tracking lines interfere with the playing of this movie and I am heart broken all over again.

 

During the time since my Dad passed away, on June 17, 2017, I developed a practice of looking for the gift within the disease. This current experience of sinking into the dark energy seems to consume me fully, making the blessings more difficult to find. I do my best to maintain a positive - social media kind of image -  "I'm good, life is good, I'm so blessed", however, the power that hides in the scary thoughts takes over. When I am home alone, I long to scream, a gutteral scream as I hide far beneath the blankets. There is a strange embarrassment, or impatience I feel. I am better than this, I can overcome this and I should....right now dammit! But seriously, of all the times that berrating myself is inappropriate, this clearly is one of them. Self-love and self-care is what is required here, now, and throughout this journey no matter how long it lasts. And then, at the time when Mom does let go and re-joins Helen, Ruth, Marge, Bob - and especially Dad, the deep, deep pain will linger and I will dance the dance of grief again.

 

Letting go of a scream, regardless of what those around me perceive to be happening, is a very personal expression. It is the movement of a dark and painful truth moving it's way to a light that warms the darkness and allows the depths of love to emerge. Suddenly, my eyes are open and I see the bright sunshine pouring through my window, it covers me and I know that I am loved, I am adored and I am supported. This journey of love for a parent living with dementia, letting go of her one moment to the next may try to kill me but I will bathe in the light often so that I can shine that light outward to my dear sweet Mama until her eyes can no longer take in all that I want to share with her.

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