Alzheimers disease

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We just dough-not know…

It’s June and I haven’t written here in 2023. Where does the time go? I’m retired and busier than ever, but what is it I actually do all day? I know one important thing; I spend time with Daddy.

On National Doughnut Day this past week, I took Pop his weekly supply of snacks and drinks along with a favorite special treat: chocolate glazed doughnuts with sprinkles. Please don’t tell his doctor, but our local shop might know our names and what he likes, only because his huge smile when he enters this store is infectious. He wasn’t with me this visit, but they knew where this order was going.

As we spend time together, Pop usually shares stories and remembrances while partaking of his special treat. Mind you, even his deeper memories are not always chocolate glaze and sprinkles (with ALZ, it rarely is), but he holds his own and witty observations often surface. His biggest revelation this past week was the time he and his friend, Bill, walked from his house on Windomere Avenue to a local doughnut shop to take home a dozen to share with their families. Unfortunately, by the time they got home with the box, it was empty: “We just told my mom, ‘Sorry; we dough-not know what happened to them!’”  Daddy laughed and laughed.

On really good days, we have deep and meaningful conversation in snippets with daddy carefully verbalizing his thoughts. Stories, family lore, vacations, dog show adventures, friendships, and more tumble into vibrant stories of delightful conversation. He speaks and I soak up all I can, especially when his sense of humor takes over.

On the toughest days, I help him dig deeper inside his mental well to encourage him. Often times, he simply chooses to sit quietly in my company, look at family pictures, and wait for me to share the familiar stories with him. As he observes on occasion: “I haven’t forgotten, Bethy; I just can’t remember most of the time.” 

Sometimes, without warning, he looks deep into my eyes, straight inside my soul, and says, “I forget, but thank you for remembering for me.” Those moments of clarity are a divine gift. While often overwhelming, walking this path with him as the keeper of his memories in his greatest time of need is a gift to both of us.

June is National Alzheimer’s and Brain Awareness Month. 2023 marks ten years our family has “officially” been affected by ALZ. A decade…and according to St. M, 16.666% of my life. From mom’s diagnosis in 2013 to dad’s in 2017, we’ve tackled the good, the bad, the ugly, and everything in between. Some days are diamonds and some are stone; some minutes golden and others are full groan.

Alzheimer’s may be robbing the vibrancy of Daddy’s witty mind, but he has us and we have him. We continue to forge ahead on this unique journey together. We understand well how some things in life cannot be fixed, but are shouldered with love, help, and strength of others. His heart and soul continue to hold what his mind cannot, so we choose to follow his lead to “take what you’re given with grace and dignity and move on.” After all, we simply ‘dough-not’ know what the future holds anyway, but doughnuts, they make it all a bit easier to swallow some days.

Take care of yourselves, friends, as you care for others; be blessed and be a blessing.  

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Staying vertical

When asked, “How’s it going in your world today, Daddy?” His answer is likely, “Any day I’m vertical is a good day.” If asked about how he’s feeling, the answer will be, “Great!” because in saying so, he somehow makes it so in his unique world.

For example, I picked him up one day last week to ride around with me, running errands and gathering supplies. We even stopped to have some brunch outside a favorite local spot–no doctor appointments or vaccines or bad news, just a familiar daily experience of “noodling” around town. It was amazing to watch him simply savor riding in the car, looking at the colorful trees and leaves floating on the breeze, feeling the cool wind on his face, and interacting with others during our time together. At one point, we walked into a downtown bank to drop off some company materials for M and dad left with a lollipop and four new acquaintances who knew little about him other than he’s a witty, personable guy.

While Dad never sweats the small stuff (“preventative worry” was my mom’s job according to him), he embraces the small everyday pleasures with the greatest of ease. He rarely allows his unknown setting or situation to get in the way of being a decent human being. His brain may not hold names, dates, or many memories, but deep inside his heart and soul, kindness and decency prevails. He waves and greets, smiles behind his mask, compliments, thanks, and even holds the door for others. He finds purposeful, meaningful ways to interact and showcase his gratefulness for remaining vertical. As a former private pilot, dad often attributes life’s events and experiences to the weather–the various storms, winds, and pressures come and go whether he can fly in them or not. He simply chooses to be grateful for all of them because each season of life brings it own unique opportunities and blessings anyway. And oh how I marvel with the way he keeps moving forward vertically and in gratefulness for as long as he has voice in this world.

So today: When challenges attempt to prevail in your life, what purposeful ways bring fresh perspective and possibility for gratefulness anyway?

Stay vertical y’all, and as always, be blessed and be a blessing as you care for yourself and others. 🙂

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Transitions

“Love is the real force motivating this next chapter of my journey, Bethy…” He spoke the words softly to me as he hugged me up before I left him in his new apartment alone for the first time. We were both being brave and stoic, yet our eyes were watering. We both understood how this next transition ensured his continued care, safety, and quality of life as he lives with Alzheimer’s. The transition is simple, just not easy.

Packing and stacking of belongings, arranging and organizing of spaces, laying out and labeling everything (thank you, H!) culminated in a smooth and successful move for Daddy into assisted living. Our coast-to-coast little family answered the call and gathered together for a few days to ensure all went well for everyone involved in this next transition. Pop relished in the attention, feeling the support, encouragement, and love in making this decision and then getting him settled properly, because, you know, we have requirements. 🙂

For the second time in my life, we travel this familiar path with a parent. Dad’s journey with this relentless disease is entirely different from mom’s journey. His progression and various turning points often pass quietly, yet we find ways to negotiate the transitions as they naturally occur. While we may have doubts at times, he literally continues to walk (with his cane) into the situation like it’s a sales meeting…and yes, he still works an entire room of strangers that way (just ask the men’s group leader). Another huge blessing is Daddy continues to maintain his amazing sense of humor, and this will carry him well in his new surrounding. He’s a natural talker and if he doesn’t know you or cannot remember your name, he just fakes it, says something funny, and invites your participation and input. His gift of gab and storytelling are present no matter the setting. In fact, I’ve been warned he’ll likely be the voted in as “mayor” before we know it. 🙂

Because we’ve been straight-forward and realistic about this overwhelming situation, it has helped all of us roll up our sleeves and get messy with the details when necessary. We’ve had the tough conversations about his finances, his health expectations, his final wishes, and more. He makes it clear what he expects. As he likes to say, “I haven’t forgotten; I just can’t remember…so when I forget, thank you for remembering for me.” We have his plan and will work his plan each step of the way, just as he clearly expects of us.

Alzheimer’s may be taking away the vibrancy of Daddy’s mind, but for now, we take it a step at a time with expert assistance as a new part of his team.  Make no mistake, his heart and soul continue to hold what his mind cannot. He reminds us in unique ways how some things in life cannot be fixed, but are shouldered with love, help, and strength of others. In his unique way he teaches us how to covet each day, each memory, each opportunity as he holds on, and in turn, lets go. It’s showing up and paying attention in the moment while not being wedded to the outcome.

Our home is quiet as I wander on his side of the house today. I am weary from the buried anxiety and stress of these last few years. I’m “feeling all the feels” as my daughter says. There is also profound relief from the controlling need to serve as “benevolent overlord major general” and daily cruise director. (I did this for 34 years before “retiring”). As I told a sweet friend yesterday, I am simply excited to just be my daddy’s daughter during this next chapter of his journey…and I venture to guess, he simply is too.

Like most of life, this transition is simple, just not easy. I lean into my faith, hope, and love. And just as daddy observed, love IS the most powerful force of motivation moving us onward during each transition of his journey…it really is simple, just not easy, my friends. May you be blessed and be a blessing to others.

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The longest day…

Summer Solstice…the longest day of the calendar year when there is the most light available to us. Following this Solstice, the days gradually shorten and the nights lengthen.  Did you know the word “Solstice” is derived from Latin meaning “standing still” (Sol + systere)?  Many traditions throughout time have celebrated the Solstices; likewise western civilization celebrates the first day of summer (called Midsummer–see Shakespeare) as one of the most powerful days of the year for spiritual growth and healing.

Our day started about 4:58 am with Pop standing at my bedroom door asking if he missed coffee time.  The steady rains of the last night had ceased and daylight was dawning with the sun just starting to peek into his half-open blinds on his east window (my fault for not closing the blackout curtain there last night).  Startled, I jumped down, checked the clock, and softly padded to my doorway toward him.  I assured him it was early and the coffee would not start for another hour.  I walked him across the house back to his room to settle him back into his comfy bed, sitting in his recliner nearby until I knew he was fast asleep.  Unfortunately, I was wide awake…coffee and quiet time for me…

Ironically, the first thing popping up on my social media feed a little later was an update and positive message from the Alzheimer’s Association.  The organization annually uses the longest day of the year to shed more light on ALZ in hopes of raising awareness about this terminally mind-altering, life-changing, longest goodbye. Today, a favorite Fred Rogers observation surfaced once again:  “Some days, doing the ‘best we can’ may still fall short of what we would like to be able to do, but life isn’t perfect–on any front–and doing what we can with what we have is the most we should expect of ourselves or anyone else…” 

As a caregiver wrestling this relentless foe, I frequently find myself unexpectedly trudging deep in the trench with daddy at times.  While it’s the primary goal each day to simple encourage him while gently assisting him, he unknowingly and gracefully spends just as much time helping me cope with this process by using his wit and wisdom, his laugh, and his smile.

So on this longest day of the year, we chose to seek a little spiritual growth, natural sustenance, and healing tonight by taking a short drive to a favorite lake spot down the road from our home. We stood outside wearing our purple Life Is Good shirts with the sun shining through the trees and the breeze lightly touching our faces as we ate ridiculously large bowls of homemade ice cream.  As written before, daddy sticks to his philosophy to “take what you’re given with grace and dignity and move on.”  It’s his profoundly simple way of dealing, growing, and healing from all of life’s challenges every single day…most especially on the longest day of the year.

Note:  If you or someone you love is in need of assistance, please check out their website @ alz.org  for more insight. 

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Coloring hope in purple…

The doctor’s words resonated flat within the sparse conference room once they were spoken aloud:  “The results confirm ALZHEIMER’S.”  Pop was silent, holding my hand, staring off outside the window, and processing all we were rapidly being told.  “Probably stage 4, moving into stage 5 and definitely beyond moderate at this point.”  Alzheimer’s, this dreaded, debilitating disease we previously experienced, daily lived, and unfortunately understood too well with momma.  While not shocking in light of everything we’ve experienced these past 18 months, the immediate sting of this label is potent.

As we exited outside from this meeting, the color purple vibrantly surfaced in various ways–a poster of information, a sign of instructions, blossoming violets and phlox growing in the landscaped beds along the medical building.  A regal jewel-toned color, purple often signifies enlightenment, transformation, royalty, power, creativity, wisdom, dignity, devotion, grandeur, pride, mystery, and independence.  Purple is considered a rare occurrence in nature, symbolizing delicate, precious, and often sacred meanings (much like dad’s remaining memories and brain function).  Herbalists and horticulturalists believe lavender, orchid, lilac, and violet flowers along with plum, thistle, pomegranate, eggplant, and grapes increase imagination, calm confrontation, and re-energize the learning of new things.  How ironic is it the color purple also has come to symbolize hope and awareness for one of the longest family goodbyes in modern medical history?

Today, however, as Pop and I walked around the medical facility path from another appointment, these plastic beauties caught us off guard with their collective colors, fluttering leaves, and powerful messages written on petals gently swirling in the pre-rain breeze.  We stopped in awe to read the names, sentiments, and messages of hope, silently wondering where and how hope will emerge in the stark reality of Alzheimer’s disease.

Thankfully, even in our darkest moments, someone gratefully steps in to turn on the lights for us; today, ironically, it was daddy himself.  He announced in that particular moment he wanted to plant a purple garden.  So, yes, we’re planting a purple garden together in the next week…a place where nature, our existing imagination, and precious memories can grow even as they dim inside dad’s mind.  Somehow, daddy finds hope in growing something purple and knowing our time is limited, so we need not waste it.  Somehow, daddy finds hope in taking life day-by-day and being grateful for the little things, like a purple garden in our yard.  Somehow, daddy finds hope in talking, reflecting, sharing, and laughing as daily priorities.  And somehow, daddy finds hope in profoundly reminding me, “A secret in life is letting every situation be what it is instead of what you think it should be.  Take what you’re handed with grace and dignity and move on; let’s just make the best of this thing.” Consider it done, daddy…and here’s to coloring our hope in a glorious garden of purple.