Wherever you look…

Part I

Dad has settled in (well duh…he’s swimming now of all things!). We are still exploring and finding various rhythms to our days and our nights of what works, what doesn’t, what won’t. We are simplifying everything. And we are re-connecting. We’ve bonded differently as our roles have switched.

What follows next is deeply personal and profound—what follows is Dad’s current reality; a description of a lived life winding down and everything that that entails—well, most everything. I’ve thought a lot about how much exactly to share in this particular post—I wanted Dad’s reality to be learned as the important teaching it is and has to be but I would NEVER compromise Dad’s dignity. EVER. So, this post comes attached with a LOT of vulnerability and trust. I know you will read it as it is intended—with love and compasstion. Because…

… Dad cannot Elder us, we cannot learn from him, unless we bear full witness and understanding to the moments as they are lived; until they are made real. We cannot best learn from Dad if we are concerned about privacy issues, or embarrassment (his or ours), or if we talk only of “the good times,” or if we don’t want to know the hard stuff, or if we ignore the fact he is likely to die sooner rather than later. If we don’t know this stuff, the hard stuff, it only perpetuates the sad reality that we, nowadays, don’t do death well. And we should regret that. We’d just as well put him back in Brookdale and give him a call every now and then (“out of sight…”) if we are in any way afraid of, or inconvenienced by, disability, dying, and death.

The fact is, there is nothing to be fearful of—or embarrassed about or shied away from—when needing to keep a beloved and aging elder present, fully present, in our lives. If done well, which is the intention here, and from the heart, all heart, Dad’s dignity, and our respect for him, will only grow. And then life will have more meaning for us all (this is one reason I am so in awe of, and so grateful to, each of you who remain interested readers of Dad’s Journey—by reading, you are engaging with him and allowing him to impact your life. THAT humbles me and makes me proud of him. So, thank you.).

Let his dignity and esteem grow, here, now. Let it grow in your heart—where you will keep memory of him.

And then, choose love.

Always love.

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It goes without saying: caring for a person through their end-of-life journey can have enormous ups and downs—whether that be mood swings; physical challenges

for lunch and dinner, we eat upstairs so Dad gets some exercise climbing the stairs in addition to the walks we try to take daily—his motivation? “Hey, ya want to eat, don’t ya? That’s where the cookies are Dad!” But I am right behind him every step;

feelings and emotions

joys and sorrows; happiness and frustrations; giggles and laughter… tears;

gratitudes and regrets; pride

“I got out of bed myself this morning;” And recently “I went swimming!”

and embarrassment

“Dammit, I didn’t make it, I’m sorry;”

humor

the passing of gas—aka farts!—are now attributed to Sammy! “Sammy, why do that?” Even when Sammy’s not around.

and boredom.

The list is only restricted by the daily occurrences of simply living a life at a much, much slower pace…and with two disorders impacting a beautiful brain. These ups and downs are for both the one cared for, as well as the ones providing the care. I feel it all in my own body as I am re-calibrating to my new reality too: my new pace, my new way of being (and proudly at that); and a new appreciation for what Dad might be feeling within his own body—even though there is NO possible way for another to understand what dementia and Parkinson’s feels like. I honestly do not think Dad, himself, understands what dementia and Parkinson’s feel like. He’s simply living them.

Dad has these ups and downs and it seems they can change hourly. Contentedness can give way to frustration when he has to use the restroom NOW, as demanded by his bladder, when the rest of his body can take upwards of 10 minutes to get organized and move from here to there. Or when he’s trying to get a bite of Kristin’s homemade blueberry muffins to his mouth when his arm freezes on him. He has an awareness this is happening; and when it happens, he doesn’t understand why he can’t make his body move. Because the syndrome attacks a part of the brain that controls physical/motor coordination, Parkinson’s demands a lot of mental “motor planning” so that every step, every bite, is a mindful step and bite to keep himself from falling and to hold on to the common dignity of eating independently—all while those neuron connections are slowly disintegrating. Setting a good daily schedule helps with some of this, as any good kindergarten teacher would tell you; and lot’s of encouragement and re-teaching on a growing number of “taken-for-granted” routines also helps: “Well done, Dad. Step. Step. Take another step. Raise your foot, now this one. Lean forward. I’ve got you. You’ve got this; you’re safe.” He can still feel proud when he pleases others (he was SO proud of himself when he got in the pool—he couldn’t wait to brag to Pat!). And he wants that. He says “sorry,” and “thank you” a lot. His true nature remains one of gratitude and kindness.

On the whole, Dad is doing okay (but this is me determining that)—both the dementia and the Parkinson’s are on the moderate (though progressive) side and managed much of the time. Daily, while there are times when Dad is very alert, with his characteristic eye twinkle and quips at humor (I mean, c’mon: Sammy doing ALL the farting? Some, yes—not all!); and very strong, when he can take upwards of three walks a day; there are also moments of deep uncertainty, confusion, weakness, and “freezing” (fairly regularly, as I shared above, his body freezes during eating and walking times—it’s like he all of a sudden forgets how to do something even in the midst of doing it; a gentle nudge of a limb or voice command helps to “unstick” him). And there are impactful short-term memory lapses/losses. Dad will set out to use the bathroom and can forget how to get there. He will say he’s ready for bed and will ask, as we are walking to the bedroom: “Where are we going?”

But don’t play “Name That Tune” for money with him on classic country western music—his long term memory is robust (another characteristic of dementia). Kristin and I are having little choice in re-learning Johnnie Cash, Merle Haggard, Chet Atkins, and Dolly Pardon’s greatest hits. (Okay, we might be liking them—just a skosh. After all, I still remember playing a 45 vinyl of “Rhinstone Cowboy” when we lived in Toppenish! Young’uns…*sigh…. You can Google “vinyl.)

He uses his walker full time—and shuffles his feet with a stride of about 4 inches. Edema in the lower limbs and feet is just the way it is now; and we’re nursing a sore right knee that he may have strained going down a stair the other week. He can’t understand why he drools now. He’s starting to have swallowing issues as food particles and saliva more frequently seem to “go down the wrong pipe.” He is not independent on just about everything.

And he has “night terrors” almost every night (monitors connect his bedroom with ours). Night terrors. I wish I could ease the terror from those fearful dreams.

Think of everything you do during the day…EVERYTHING. And then imagine going 5 times slower and needing someone right there with you for every movement. And yes this includes showering, and shaving, and toileting—sometimes reaching 10 or a 12 visits to the toilet a day.

Everything.

His reality.

His whole life now.

AND he is amazing and beautiful and kind and grateful.

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A brain “on Parkinson’s” is a wicked thing to both have and witness:

Parkinson's disease (PD), or simply Parkinson's, is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms usually emerge slowly, and as the disease worsens, non-motor symptoms become more common. The most obvious early symptoms are tremor, rigidity, slowness of movement, and difficulty with walking. Cognitive and behavioral problems may also occur with depression, anxiety, and apathy occurring in many people with PD. Parkinson's disease dementia becomes common in the advanced stages of the disease. Those with Parkinson's can also have problems with their sleep and sensory systems. The motor symptoms of the disease result from the death of cells in the substantia nigra, a region of the midbrain, leading to a dopamine deficit. The cause of this cell death is poorly understood, but involves the build-up of misfolded proteins into Lewy bodies in the neurons. Collectively, the main motor symptoms are also known as parkinsonism or a parkinsonian syndrome.

(Wikipedia, 2022)

There is no cure for Parkinson’s.

Dad has all of these attributes/symptoms and the degree to which they manifest changes—often hourly (btw, interesting side note: the comedian Robin Williams had the same diagnosis, especially the Lewy body dementia.) None of this is by Dad’s choice. All of this is about a brain in a certain state, as predestined ages ago, through evolution, genetics, inheritance, environment, and lifestyle.

And yet, things could definitely be a lot worse (“worse” is a judgment word and I’m working on eliminating all judgments). So, perhaps it’s better to say things could be “just different” in the level of care and supervision he needs. Although he has a look of concern, concentration, and consternation on his face most of the time, unless he is very relaxed in a chair and feeling safe, his moods now are tending toward the positive and content much of the time. Family who have seen him since he’s moved here do notice the difference. He’s no longer calling his children at 2:45 am (and no, it’s not because I’ve taken his phone away—wait, check that. He’s calling just one of his boys now at those hours, but he isn’t using his phone to do it.). Still, we prepare for things to become “much different.” And we live “in the moment.” And then “in this one.”

Being a lifelong farmer—a person who counted on his body to get him through physically demanding, 14 hour days, three seasons out of every year—these habits established within his mind a certain way of being that old-age, Parkinson’s, and dementia now shout, with brutal honesty, “Never shall you ask that of this body again! But you will forevermore remember who you used to be!” He remembers what he could do when younger, things that now he can no longer do. This brings him frustration, worry, angst, embarrassment, shame, a dependance he never asked for, and sorrow at times; and then… resignation. It is also a reality that I MYSELF remember what he could once do—and I’m experiencing, every day, all the things he can no longer do for himself, and by himself, as I stand in service to him. I know who he was (this once-invincible, quasi-superman who never took a sick day in his life); and experience daily who he now is (a new citizen of a strange and unrecognizable land with no return ticket to the place he once was).

But we are working on it all, in each moment, in our shared presence. He and I both are consciously turning these moments of potential angst into something different. Because it doesn’t have to be “that” way. Like, ever.

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[This is the end of Part I; it was getting too long so I decided to split it into two parts—WHY this piece was written, though, is in Part II, in a couple days: it may be Dad’s most important Elder teaching for us all with a potential life-altering takeaway—notwithstanding surprising a son by wanting to go swimming]

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T plus 19 days… and counting.

Special Note in case you haven’t picked up on timing—I aim to push out two posts every week—one on Friday, the other Monday-ish (unless he surprises us—we think skydiving may be next, I don’t know!). I don’t want to overwhelm you all even though you are in full control of when/if you read. Just, thank you for reading and being interested in Dad—we have so much more to explore.