Razor Thin

One issue stuffed in a crisis envelope. This stressed, mental note has been finding its destination in my voicemail recently. More than three times these past two weeks, my dad has been calling about this one recurring problem.

I am happy to hear his voice. It doesn’t matter to me what the issues are. Most times, one particular problem occupies his mind – and we address it together when I can. This time, however, a challenge has him on edge more than normal.

And we haven’t solved it as of this post.

His electric razor has walked away. Gone the way of bladed glory, as it were. Apparently, it couldn’t be shaved from imminent banishment.

Multiple messages. I feel his pain when he calls. What’s he supposed to do? Limited capacity all-around is his world now. These little inconveniences to us are big deals to him. His life is, quite literally, razor thin. One small detail out of place – for a man who lived his life in control of everything and was extremely organized – is so alarming and frustrating.

I get it. This is why I do everything I can do to meet him where he is in his world. He says, “I can pay for a new razor”, I say, “Sounds good to me. We can go get one when I’m free. It will be soon, dad.”.. “I don’t know what happened to my razor. It’s missing..”. “I know, dad. Thanks for letting me know. We’ll solve this together.”

These are the few times I’ve been able to answer my phone. Most times: rinse and repeat – just without a response.

Did get an hour to go out for lunch yesterday with him. I could tell he was a bit emotionally nicked up due to a blade razor shave earlier in the day. Simply not his comfort zone. A triple-head, electric razor, clean shave has no equal for him. With few pleasantries left in his early morning routine, dad should have an enjoyable four-score+ facade trim. He deserves at least that.

We will, probably, never know to where the elusive Braun ran off. It’s conceivable there was a charger conspiracy in the facility. Probably they needed an outlet for their frustrations and took the razors hostage. We’ll await their demands.

In the meantime, Dad’s on edge, for sure. He and I will fix this. One mental note will be answered with a few kind words, some dad and son time at Best Buy with another lunch to follow, and a less-stressed father returning to a happier state of mind.

For now.

This is dementia. A world most of us don’t understand. If we are in the throws of it ourselves, we won’t understand it then, either. What a freakin’ mess.

It’s a mess I don’t mind cleaning up every time dad needs me. In person, or through a phone call, we mop up the problems one at a time … together.

If this is what what it takes to navigate his razor thin lines, I’ll help him. Every, Single, Triple-Headed crisis at a time.

…We’ll Go With That

A few days since writing about dad. Not bad considering dad’s struggle with dementia. Life, for both of us, has been predictable. His life’s schedule pretty much the same: three squares a day, two daily activities, a nap here-and-there, etc … my hours filled with concession events, music obligations, planning and follow-ups.

This week has offered the two of us three opportunities to go to doctor’s appointments. Fortunately, these give a dad and son minutes to get caught up. Whether it be a PCP, dermatologist, or cardiologist, .. quality time is quality time.

“Quality” defined as simple conversation. It’s dad asking why we are at a particular place – seeing a certain person – for a specific reason … then forgetting why we’re there five minutes later. Additionally, he’s always concerned about my well-being. Am I doing well? Have I been busy? I’m happily conflicted wondering if he is connecting the dots in my life, or just asks because it’s in his fatherly DNA.

Such is the nature of dementia. As I’ve written before, none of us know what’s processing inside the mind of someone who lives with this disease.

I am merrily mindful, however, that he leaves voicemail messages when I can’t answer my phone.

I don’t have enough space to save all his voicemail messages, so keeping only the most recent one is my habit. Always having his “potential” last one will never leave my side. (I still have my mom’s last recorded message from over fourteen years ago). His available lexicon is still unique enough to vary the eleven seconds I hear nearly every day.

This morning was: “Hey, it’s Dad. Just seeing if there’s anything going on that concerns me. Guess we’ll go with that.” … and so began and ended the call.

With a little phone rustle on either end, this is standard. No extra fluff. To the point. I’ll gladly receive these calls every day … and, sometimes, two/three times in the span of twenty-four hours from this phone:

Always around eleven seconds. Always different words.

“That” means something on this specific phone call. Just what (?), I’m not sure. Could be the current waiting room situation we find ourselves in right now? This is the second of three this week with the last tomorrow morning. He’s had a situation needing addressed we’ve waited for an appointment. Finally, today, it is being followed-up on. Don’t believe he knew, or remembered, this morning when his message arrived during the early dew-laden hours.

At least I don’t believe so? Picking him up an hour ago, the usual smile with anticipation greeted me at his door. “Hey, what’s up?”, softly came across a warm, paternal portal. “You have another appointment, so how about we grab your favorite hat there and, probably, that warm jacket because it’s a fall day out”.

“Ok. Whatever you say”.

After missing the turn-off fifteen minutes later, we arrived here at his destination. “That” has been accomplished. ✔️ As far as I know, he’ll go with it so far.

… and continue to in the future because he trusts my judgement. My decisions with regard to his care are never questioned.

Trust is embedded in his “that”. He’ll, instinctively, go with it. Our relationship is built on trust. It’s a bridge built over (early on) tumultuous waters he and I were able to calm down together over the past decade.

This has been the small miracle embedded in his dementia diagnosis. The “gentile peace” both of us are experiencing continues to grow from the fertile demented ground. A trust blanket keeping our relationship warm month by month, year over year.

I trust – as long as he is able – a community room phone will continue to call out. He trusts enough to say the words, “We’ll go with… ” yes, ” … that”, to me regardless if it’s a scoop of his vanilla ice cream drizzled with hot fudge, or another medical appointment.

To him – at the end of his routine day – it’s quality time with me.

I’ll take “that” anytime, any day of the week.

Twenty-one, Or So

“I have plenty of stuff here that can be used. Whenever you have time to look at it. No big rush”.

Another message. Another twenty-one, or so, words gratefully left on my voicemail Friday. I don’t interpret these words to mean anything other than dad reaching out for verbal companionship – for a connection. Words, themselves, don’t really matter.

(As aside here, I didn’t really listen to him – or anyone – as a teenager, anyway, …. but let’s not let that get in the way here. 😃)

These words don’t matter. His intention does. His need for a momentary connection to his son – even if it was in a thirty-second voicemail – counts a lot in his life. And mine. I want him to hear my voice … in person, or recorded. He needs this.

As I’ve written before, it’s difficult for me to answer most times. Life is, well, busy. None of us who are on the forefront of caregiving can set aside our schedules. We want to, but can’t. Even if I had all the time and money available at my over-extended fingertips, it wouldn’t be healthy to commit 100%, anyway. The emotional balancing act in which we engage is challenging. Rewarding, yes. Tiring, yes.

Following each call – answered or voicemail – I do try to see him within the next twelve hours +/-. Not always possible, of course. A good percentage of time my schedule allows it – which leaves a small “bad” percentage.

Thus, that message Friday, sadly. It’s Sunday morning and I felt the “no big rush” empty hours creep into my life last night. Before Saturday’s church service, an unsettled hush occupied my mind. An urgency to see dad without the time to follow-up took the place of prelude preparation and sanctuary service. Granted, this was over an hour before because I arrive early to help open the church. Yet, this didn’t lessen the malaise I felt…

… Initially. I write, “Initially”, because within five minutes of entering through our side doors, my ears caught a very familiar voice coming from our fellowship hall. An elderly, tenor male voice echoing around our large gathering hall was easily recognized as one of Zion’s recently retired clergy. Sitting as a dedicated grandfather … dutifully watching over playful grandchildren was his job at that moment. Neither of us realized another task was at hand.

A casual, “Hello, usually nobody is here …”, turned into much needed twenty-one, or so, minutes gratefully exchanged between old friends as I was the organist/pianist during his long and rewarding tenure at Zion.

“It was nice to see your dad last weekend in church”, began this wonderful conversation between friends. An observation warranted because Pastor Scott attends regularly with his family.

“Yeah. I felt it was a good idea to bring him to late service … and then see if he had enough energy to go to our church picnic afterwards.”

A larger door opened at that point. Not one to the church. One to my conversational soul. One that isn’t opened very often, surprisingly. (Although, I do talk to others on occasion including the current pastor, secretary, and a few good friends).

So many ask about dad – how he’s doing. The, “what’s going on with him?” umbrella-in-passing kinda query. I don’t mind, but a quick, “he’s fine” seems to satisfy questioners as they move on with their lives. I get it. I don’t hold anything against anyone. Lives move and gears grind in the engines of every one’s schedules, families, and jobs.

There was something different with Pastor Scott’s words. Granted, he’s a pastor. With that comes a certain expectation of compassion. This wasn’t it. It was just a normal guy – a good friend sincerely asking about my dad.

… so we talked and laughed. Life as it is in this net of dad’s dementia. No advice given. “It must be difficult for your dad to manage what’s going on inside his brain”. “I think it is?”, was my hesitant reply as I am not sure what path ideas take inside a person’s brain who has dementia. As someone who knows dad, he continued, “I guess he feels comfortable in his own way and is, at least, trying to manage”.

“Yes, he is”, I candidly replied.

This comforting dialog continued for another twenty minutes. Life between a dad and son through the consoling and sympathetic casually dressed clerical collar of a retired pastor. Benevolent brotherhood at it’s best. I could only image dad sitting off in the near distance nodding in agreement as friendly phrases graced my ears. Almost like dad was saying, “It’s ok. No big rush. Believe me. No big rush”, through the words Pastor Scott was speaking.

I didn’t expect to be playing my prelude last night with light-heartedness when arriving over an hour prior. That time with Pastor Scott provided an unexpected education. This journey with dad isn’t about one-way messages on an answering machine. It’s not even only two-way conversations when I am actually able to answer the phone, or take dad somewhere for a treat.

We can bring others into the conversation to help more often. To untangle the net. To help straighten out the bent thoughts and crooked, confusing conversations between a caregiver and “patient”…

It IS an opportunity to allow myself, and others going through this, to be brave enough to ask for specific help – to open up for conversation. Allow follow-ups when the, “What’s going on with your dad?”, questions appear unexpectedly. “Do you have a minute to talk?… I have a few concerns.”, wouldn’t be a bad thing once in a while if the timing is appropriate.

Who knows? Laughter and meaningful dialog may happen?

After nearly three times twenty-one, or so years of my life, it’s still hard not to do everything myself. If this journey with dad is teaching me one thing, stopping to learn, laugh, and listen to another person is a good thing.

Dad would be happy to know I am learning this lesson, finally.

Buckets and Pails

“With age comes wisdom, but sometimes age comes alone.” — [Oscar Wilde]

I hope this never comes to pass with dad. Meaning, he should never, ever, feel left alone – abandoned by his family. Notably, this son.

Dementia has a pail-full of confusing problems. I don’t have a ladle big enough to scoop out enough ounces to have it all make sense to me – let alone empty the humongous bucket dad must carry around 24/7. This is what occupies my time – my thoughts – a few minutes every once in a while. He and I are at an emotional well together.

He can be sitting with me holding a spoonful of dripping hot fudge over a serving of vanilla ice cream, or miles away tucked into a routine at his facility. Regardless, dementia is constantly filling up pails and buckets with confusing signals, information, and “whys”.

His pail ripples with same-old-same-old to him. What goes in is, possibly, new information, yet old to me and the very kind assistants who are patient with him. What hat should I wear? (That is the same every day if we go somewhere) Is my razor charging / where is it? (Same every day) … Will I be back for my meal? These question, I hope, are not stressful, but I know dad. I know he worries. These are his ripples.

My bucket is a bit different. I don’t worry about him. Not about the care he’s receiving. The guidelines I use are health and safety. Are they being met? Yes, absolutely! Where he is couldn’t be better.

My emotional ripples are bigger than that. Like I mentioned, I need a bigger ladle.

It had been a few days since I was able to get in. Yesterday, finally, in the midst of a few ridiculous rainstorms and high humidity, a nice walk down toward his room was a welcome relief. Usually a knock, or two, is all that’s needed to get a nice welcome smile to greet me. Not this time. Another attempt. Nope. Third time. Silence.

Off to the activity room to check on a possible group event. Maybe he was otherwise engaged? Nope.

I knew not to fear the worst. Dad is in pretty good health, so any idea of an emergency wasn’t warranted. Fortunately, a nice aide was able to help with a spare key.

As I figured, dad was sleeping as soundly as I’ve ever known him to be. This was an odd time for him to rest. No illness or other reason for this came immediately to my mind. We rustled him up, slightly, and I said my usual, “Hey, Dad..”, to see if he wanted to get out a little bit.

“…how about just going back to sleep and I’ll see you later?”, noticing his very different demeanor.

“Huh? … hmmph, ok”. And with that, a creased pillow found his head, once again, nestled into a very warm, comfy spot. I carefully refolded a blanket over his shoulder, said a soft “goodbye”, and gently closed the door behind me less than a minute later.

Walking back down that hallway felt different. Dad was alone, but not really. We were at that stupid well. My bucket was, again, filling up with confusing information. Is his age catching up to him? Is this advancing dementia? Was he simply bored on this particular day? Did he not recognize me, thus, not want to go? Am I looking too much into this?

Was this selfish of me to want his company, yet be unfulfilled? What’s the answer here?

I just don’t think there is one. And this is the problem with dementia. So much information, yet each case / each diagnosis is so different. Not only this, each connection with individual family members is unique. Everyone brings flawed buckets and pails if they care to have real, meaningful, beautiful bonds with a dementia striken loved one.

No matter the age-related situation, no elderly person EVER should be alone. They are the lifeblood of wisdom, unique energy, laughter, generational compassion, and historical preservation.

My dad has his set of problems now. Yesterday, I felt he was alone for just a minute or so. That’s on me. That’s my moment at the well. It’s my bucket to bear. Unfortunately, his pail is dementia – whatever it has to be one any given day, any presented moment.

Like I always say, “The other side of reality is getting a great guy little by little, so for now, I’ll take whatever dementia let’s me have on this side at the moment.”+

This way, he’s never alone. Nor will he ever be.

What’s the Good Word?

Dad has a difficult time finding the right words most times. “It’s just not coming to me…”, so often mutters within his struggling conversations with me. Questions or comments in his direction trigger this reply a lot.

This is a symptom of the underlying disease of dementia, of course. Patience rules the moments. I try to get information. “How was your day?”. “Tell me about how you feel now.”. “Are you glad to get out for a little bit?”. I don’t know – even after years – if these are good, or appropriate, questions? All I want to do is stay connected to him as long as I can.

As I struggle to find connecting questions on this journey with dad, I find my inner voice saying, as well, … “it’s not coming to me”. What’s right and proper? A brain, aware and alert most of the time, finds it difficult to locate a quizicle query … an interesting issue to trigger dad’s synaptic senses.

This, probably, is a common frustration for those in my circle of known, and unknown, friends holding mental hands with dementia suffering loved ones. Has to be common? Communication. Conversation. What was once normal, everyday who, where, and why, … is now one way remembrances as blank stares and misplaced whats disguised as whos dominate discussions.

Yet, we love them the same. Even more, I would argue.

My point of all this is … why write it? Why briefly point out dad’s unique, but common, response restraint? Problem finding the right words – the correct, perfect reply.

I know my dad. He’s a perfectionist. Even with his life’s setback now, this trait is still deeply embedded. I do believe he may want to answer the best way he can. “It” may just be that perfect word he can’t process anymore. That perfect word isn’t coming to him.

A son, laughingly must admit, carries the same gene … not to a fault, however. I allow some things to slip by.

What couldn’t get by me was that perfect word this evening. Truly, “it wasn’t”, yes, “coming to me”. This was a moment I felt a connection to dad and he wasn’t even around. Ironically, we planned on his attendance, but scheduling prevented it.

Simply stated, a guest pastor was in attendance at our evening service. I had a moment beforehand to mention how much I enjoyed his remarks at a funeral a few weeks past. As the organist at many a funerals, I heard many eulogies. At this particular service, his words were, well, ….

… and here’s where I got stuck. The pastor and I could have easily been dad and I mired in traffic for a few awkward moments -with a few glaring differences, of course. No dad and son. One pastor and organist. Both, supposedly of sound mind.

However, still one blankly staring back at his friendly guest pastor thinking, “it’s not coming to me..” What’s the proper and right word to compliment a pastor on his exceptional message on the death of a beloved friend, pastor to us all?

As I spoke a few wiggly words, none seemed appropriate. Each worse than one prior. The pastor’s kind, but confused smiles confirmed my suspicions. It was a “good” message? I “enjoyed’ what you said? None lifted itself on angel’s wings, for sure. “Nice job”? As the few minutes swooped into mild embarrassment, we parted ways with no damage done. We’ve been friends a long time. He knows … I know. A little lighthearted banter before worship in his mind.

For me, not so much.

A chance to be dad. To understand how he must be. “Be” in a moment where the right word/phrase isn’t processing. I can’t imagine living in that space 24/7 … especially when in a car being asked questions you KNOW you should be able to answer … just can’t find the words. Or, remember.

It’s been eight hours now. You know, I STILL don’t know what, exactly, to say. It was a lovely funeral. Of all memorials I’ve played, his words are in the top 10%. This is what I ended up saying to him.

That’ll have to suffice. I’m not happy with it. Doesn’t seem enough. What he said about our dear friend was amazing, poignant, caring, and compassionate. With those, I am not satisfied. They’re not what I want to say.

Maybe dad has it right, after all. It may be best to just admit, “it’s not coming to me”, and move on.

Well, in any case, having that connection moment with dad was kinda cool. Dementia has its unique set of problems. It’s nice to know we can share these little problems together.

Together in spirit, that is.

Next time in the car, in a grocery store, or at one of his favorite ice cream stops, … we’ll have another, “it’s not coming to me” moment in person.

It’s anyone’s guess as to which one of us will be waiting for a reply. All good as long as the connection is maintained.

That’s the blessing in all of this.

A Statue’s Seamless Touch

A call came. Not unlike any other from the facility at seven o’clock as the morning sun snuck through my bedroom drapes. An aide from Dad’s place spoke of his distress as I listened with partial attentiveness – not from lack of compassion, however. The five days prior exhausted most of my gas tank. This Friday morning was to be rest. Simply, … sleep. Recuperation. Body repair.

I, truly, didn’t need this distinctive ring.

It was a responsibility call. The aide was asking for guidance. She, clearly, met dad at a medical crossroad – as often happens considering the road on which he travels. Dementia requires navigational assistance. Assistance defined as caring people who help guide the way and clear out as many obstacles as possible.

He had, what appeared to her, a medical issue. “We needed to ask you what you’d like us to do… ?, as she continued to explain his troubles. I realized his situation required my personal attention. Ten minutes later, I found myself – once again – making the very familiar trip on rt. 36 north toward Altoona.

No more than an hour later, we were in an emergency department bay. This time, not as critical as other days, but nonetheless, there. Dad and me … talking over, and over, the recent moments’ events. The hows and whys that suddenly escaped his memory, needing to be repeated to soothe an anxious mind, passing the minutes which turned into two hours. As he finally drifted into a calm sleep, I took the time to slip out. The mid-morning sunlight was a welcome relief on this tired set of bones.

Slowly turning a corner around the ER, I noticed a statue off to my right. On more than one occasion I’ve passed by this way as the ER department isn’t easily accessible from the main lobby. “That’s odd …,” I thought, “… I don’t remember seeing this before”. Sure as the sun was a relief on my weary shoulders and my body was exhausted, this statue didn’t just magically appear.

It’s “The Healer’s Touch”. Rather than try to write summarize what it represents, here is the plaque:

I am not a descendant of the Shona tribe. This, probably, goes without typing. Traveling to Zimbabwe isn’t in my plans and I don’t have any friends who are remotely connected to that area of our world. Up to that moment, my only tie-in to Zimbabwe was a world map hanging in the front of a seventh-grade geography classroom.

A bond did happen at that moment, however. Not the words I read, but from the statue itself. That shiny object caught my eye after all. It was meant to. Not just me … but everyone who walked past. It’s meant for reflection and, of course, to honor the nurses who care for all in need.

For me, who is clearly not a nurse or Shona healer, I stood there – bonded to this statue: one body larger than the other … connected to each other by arms that are, by all indications, hard to see where they begin or end. The artists from this tribe know how to reach into the heart of compassion and caring. In its simplicity, there is no separation. As one suffers and hurts, so must the caregiver meet the patient in that space.

And so it is with Dementia. I needed this reminder. Self-care is important, of course. The old saying, “One can’t do another’s care if not taking care of oneself.”, is important to remember. When call comes in during the early morning hours however, my needs become secondary. When sitting by his ER bedside and the conversation circles back to the same five sentences every eight minutes, my needs become secondary. As he stares blankly at me wondering why the ambulance didn’t take him to his house, my needs become secondary.

Dad was still sleeping when I returned to the ER bay fifteen minutes later. It wasn’t soon after then, attendants took him for CT scans and other testing. Standard procedure for his distress, I assume.

Fortunately, nothing serious came of this visit. We’ll check it off as a fortunate medical mis-step with a mental ramp exit. He received excellent care for about five hours and arrived back in familiar surroundings just in time for a late lunch.

This was one of many he and I have experienced together. During the many visits though, I’ve missed seeing this particular statue. Odd, since my catering business has served the employees there multiple times as well.

This was the moment, the morning, to stop and be reminded of my role in his life I guess…

… and for all us in this role as caregivers to be part of the Shona tribe. Healer’s, possibly, a world away, but seamlessly connected together to each other and to our loved ones struggling with Dementia.

We have an important job to do. They need our affection, compassionate communication, and silence when appropriate. Let’s strive to be their statue. Have your never ending arms rest on their heavy burdened shoulders.

… and always take the call.

A Bridge Crossed

There’s not a vinyl bench back seat from a 1970’s era paneled station wagon anywhere, I figure, without the question, “Are we there, yet?, immortalized in its seams. Far rear-facing, or middle seats, those words ran upside the back of many father’s necks either every twenty minutes, upon seeing exit ramps, or a mother waking up from her passenger side nap.

I was just as guilty as my siblings on long trips to the beach. As our seven-plus hours stuffed wagon began its final leg, I, more than my siblings, uttered those four annoying words. More out of excitement, probably, than as an enticement for punishment. Boredom after hours in the brown stretch box could have been a reason as well.

Funny how it always worked for every child who did speak these words. It never seemed to happen coming back home. Silence ruled the hours. Human nature ruled the time. For us, school was fast approaching because our vacation – most times – was at the end of summer. If, some years, it happened to be near the start of June, coming back to summer work schedules (even as young kids) weren’t something in our bag of exciting things.

So, “Are we there yet?” .. was a thing. I’m going to presume it still may be? This I don’t have any personal experiences because I’ve had no opportunities to be a back of the neck listener. No chance to turn around and say, “Don’t pick on your sister, young man!”… Not being a dad has afforded me no opportunity to hear that four word phrase.

I do have a dad still – and was recalling that particular phrase when he and I were out and about the other day. Side by side, fifty years later, in a less rickety automobile, minus three humans, a dog, and polyester brown and orange shorts. Yes, just the two of us talking the day through when he asked, “Where are we going?”.

This question caught me off guard, but only a little. With his limited recall and short-term memory loss, I wasn’t surprised. It was only a few minutes prior when I did say we were headed out to shop at Sam’s Club. Leaving his facility shortly before that conversation, however, was a trigger to new stimulation, … new brain input. This is how dementia works. I find it fascinating.

I do enjoy watching how dad navigates his way around (and through) this remarkable time in his life. He adapts. He survives. He gets frustrated and calls me to connect, but disguises it as a need he wishes to be fulfilled.

“Where are we going?”, still hung out there.

The question was asked and required a quick response as we sat at three cars back in a construction zone. I could sense his eyes looking over at me with excitement. After all, he was happy to be out with me – in the sunshine – somewhere other than staring at the same tan walls he’s been accustomed to for a while. My reply came swift with little forethought:

“Well, I guess when we get where we’re going, you’ll know where we are, Dad.”

“That kinda makes sense, in a way, Doug. I don’t know what you just said, but I believe you.”

There’s a lot there … in a few words. We laughed the whole way to Sam’s Club – and, I don’t know why. Both of us found this exchange to be hilarious. Honestly, I was on the same mental track as dad. We connected and every second escalated into more simple moments of fun.

As is my dad’s personality, once arriving at Sam’s – in the public square (as it were), his demeanor change … back to business, “helping his son” by pushing the cart for some exercise. I got that and was more than willing to meet him where he landed, mentally. All good.

I write this to give hope to anyone helping a loved one with dementia. They are still driving their car. Yes, it’s quite different. You can still be in the back seat wondering, “Are you there yet?” with them? Are they safe and healthy while on their individual destination?

Just now, as the adult with them, patience, humor, love, and compassion rule the day. Also, the trip isn’t only hours, it’s years.

Along the drive, though, are rest stops when you can laugh with them – unexpectedly – while heading somewhere.

It’s a wonderful experience for me. Mainly because I never know what tomorrow invites in with my father/son relationship. All I know is …. if I could ask him, “Are we there yet?”, one more time … and have him answer, “Almost, the beach is just over the bridge …”

… I’d do it in a heartbeat.

Two Paths, Two Falls

Hidden among hills in Western Pa is this waterfall. Not far off Rt 22, heading west from Altoona – about halfway to Pittsburgh – is Buttermilk Falls. Down a bumpy cement road and through only a few rural, tree-shaded intersections, one arrives at this quaint park. It is serene. Mere minutes from the Rt 22 metal melee, a small parking lot invites all to park life away from all its problems.

This is Fred Rogers’ place by extension. Several remains of his grandfather’s (Fred McFeely) estate are visible at the park while Mr. Rogers life and times are memorialized in small wooden plaques along a simple walkway toward the waterfall. The falls themselves are in the Hires Run Valley which is a tributary to the Conemaugh River.

A recent visit here was necessary. Weeks of unexplained delays of plans, expected overlaps of multiple schedules, and usual busyness required something – anything – to free myself from all of it. A 4-day planned vacation fell through. Family matters prevented one day from happening. A personal medical issue, another day. Home repairs and maintenance another. Just did not end.

I know this isn’t only me. Life happens. One drop at a time of little issues then all of a sudden the bucket is full. We’ve all had it happen.

These mind-heavy issues didn’t immediately disappear once my car door closed over a small, shale parking space under a small grove of trees; however, a few deep breaths of forest air during the first ten minutes’ paces sure did help. Allowing the time – between each Mr. Rogers plaque – to empty my bucket by a few drops. Reaching the waterfall forty-five minutes from the start, I can say my bucket was a little lighter. Not much, but a little.

One can walk under the waterfall to meditate, take pictures/videos, or stand there and get relief from a hot, sunny day. Visitor’s choice, as could be said,

The four hour round-trip visit ended with a return back to my normal: Preparation for a busy event week coming up and four church organ services (including a funeral Saturday) this weekend. Life as I’ve known for so many years

Life as I’ve known it ..

… without mentioning, to this point, caregiving for a family member with dementia. “Caregiving” as an umbrella term to cover five years of in-home care and then then, most recently, sixteen months in an assisted living facility.

Yes, I wanted four days away. The emotional struggle dealing with a day-to-day overflowing bucket of emotional ups and downs had reached its crest. I’ve done the best I can meeting his needs. His health and safety are always on my mind. Beginning with a simple wrong turn in his car leading to a dementia diagnosis five years ago, this slow river of mental decline has eroded his solid rocks of reason.

It, really, isn’t any different from thousands of other experiences caregivers have when walking side by side, day by day, hand-in-hand with one walking down dementia’s path. Over the years, we’ve shared all the steps -together. The initial diagnosis and subsequent frustration, loss of driver’s license with understandable disappointment, confusion over simple tasks, and momentary blank stares.

..also wonderful, complimentary words that were rare during those rough teenage years. Frequent phone calls from the assisted living facility stand as a testament to our solid relationship. He has my number firmly implanted in a small brain cell … not to be forgotten at present. We have a connection.

So, this dementia path, for us – for me – is rough. It isn’t ever intended to be an easy one, I believe. It is taken on as an unpredictable, day-by-day, who knows, let’s see what tomorrow brings … and hold each other’s hand path to somewhere. (Ironically, as I type, he just called needing white medical tape – an obsession of his. No worries. We will go out in a few hours and find some).

Four days and an almost full bucket. I did lose a few drops with the help of my good neighbor, Fred Rogers. By all accounts, Mr. Rogers was a great dad. Plaques leading to the falls testify to this fact. He was a wonderful man – as everyone knows.

I wouldn’t trade my dad in for him, however. As things are, I always say we are losing him a little at a time every day, but the other side of reality is getting a great guy. I wouldn’t have said this years ago. We had a tough time.

Being his caregiver and sharing this path with him has been a joy. We’re not at “his” falls yet and I am finding my bucket to be, maybe, a bit bigger than anticipated with him as we walk together.

When alone, however, I have to be mindful of a full bucket. All of us who take care of .. and love those who suffer from dementia, need to provide self-care.

Our path is different from the one shared with our loved one. The old saying, “you can’t take care of someone else if you don’t take care of yourself first”, is so true. Spiritual, physical, and mental health are so important first-and-foremost.

There us a sign at the beginning of the Buttermilk path: “Be the kind of person Mr. Rogers always knew you could be”. I take this to heart.

There are two paths .. two falls. Two destinations. Being at Buttermilk Falls reminded me of this.

Fresh air and Mr. Rogers. Not a bad combination.

Flowers That Remember

I walked into our local florist today. Exactly ten years after one sad day, a month and five days since my last post, and ten minutes after sitting alone in a restaurant eating breakfast … I entered into an array of color. Expecting to buy a small spray of forget-me-nots, they had none. My vase of expectation remained empty as I left, but hope is never defeated.

It will take a few hours to re-visit the small blue flowers because I must attend to my business. It is a difficult day. Ten years ago, mom died from cancer. She is one of two small – never to be forgotten – flowers I expected to have close to me now. The other? A recognition of the shrinking brain known as dementia. Forget-me-nots are the symbol of this slow moving disease that slowly peels away reason and sense from those we love.

Within the beautiful arrangement that is my life now, I have a recognition of a life gone from cancer and a life present with dementia. Two wonderful flowers in a vase on my mantle today.

There’s no denying a reality. What is … is. Conversations repeated, forgotten sentences, anger over recognized loss – yet a small understanding, still, of a diagnosis in the early stage … all of this in a bouquet known as dementia. A reality so many experience daily. I am understanding this path with every inhaled scent and sensibility I can gather as two of us walk together. We are pals. We are stemmed together, yet trying to maintain our independence at the same time.

It is difficult. Especially today, it is hard.

Does he remember that day ten years ago? Is it meaningful? Is a forget-her-not in there somewhere? I believe it is … and he should water that memory as best he can.

I have my sad – and wonderful memories – of that day. I always say, “When mom died, it was the best day of my life. I started a new journey, … a new me. She was exceptional. A fantastic mom. That said, I had to grow up. My biggest supporter (and crutch) was gone.” I began anew. The past ten years would not have been what they were had mom not died.

Do I miss her? ABSOLUTELY!! Do I miss the “old” me? No.

So, here life is. Two forget-me-nots – not in a physical vase yet. No picture to show here … just words. Words one will never hear again and another may hear, but not fully understand.

I am ok with both.

I’m not ok having over a month go by without writing a blog entry, however. It is life, though, and quite acceptable when gaps in a shrinking brain require my attention.

Dementia sucks. Cancer sucks. That said, I do intend on keeping hope alive later today. Forget me not as I press on toward finding small blue flowers of hope.

Morning Sun’s Facetime

In between the occasional seasonal sneezes, drilling sounds from a necessary garage door repair to my left, and anxious, happy doggie barks inside, this sun provides me much needed calm. Warm facetime across a right cheek as I sit comfortably on a rocking wicker chair – morning feel good massaging a pre-Friday, 7:45 a.m. sore body. Ninety-four million miles away, yet immediate relief after two days of uphill crazy-town, mental drive-throughs with peoplefolk.

It wasn’t their fault, I guess. Better to dismiss it away than to get in the weeds trying to figure out why conversations and activities go the way of ridiculous. Especially in business dealings, I find myself in the land of the lost when folks don’t consider time or effort valuable … especially when spent on their behalf. Nobody needs a bucket of praise here. Just a simple dribble from the faucet of respect would have been nice the past 48 hours.

And so I sit, quite peacefully, on a well-accepting agreeable chair while the sun’s 8 minutes of aged warmth reaches my face. It feels 100% amenable to what I need right now: Quiet in the midst of drilling, barking, and sneezing.

Connecting to what has been around for 4.6 billion years is better … for now. Sitting on a back patio wicker chair for a few precious moments, away from everyone except two guys repairing a garage door, is what repairs a soul. Breathing in the history and snugness this sun provides, while allowing the denim cushion on which I sit to ease in the day, fades away all the discoloration from days past.

These are the nice carve-outs we need.

I don’t expect life to be a perfect, tasty pie of sweetness all the time. It’s rough. Days are challenging – we know this. Gosh, the past year-and-a-half, right?. Life is difficult. My family will soon experience how so.

Monday, I expect life to change drastically for a loved one. That day’s decision will affect a lot in his life, although the sunshine rising early on the days remaining in his life will remain steady. Schedules, friends, hobbies, and other constants he has known are going to adjust because the independence he has known is being driven away. His license, most likely, will be, sadly, taken away. I hope this won’t be the case, but the glaring exit ramp ahead is too obvious to avoid. Mental traffic has been congested and we need to clear the roads ahead for him.

… And it’s up to the son, his loving siblings, and the sun, to find a way forward for a dad who has been challenging at times, a loving father as only he knew how to be, and companion to me across many a lunch and dinner tables.

This will be a few days from now. As it stands, Father’s Day is Sunday – the day before a doctor’s appointment happens soon after sunrise. I have a small gift wrapped for him. I wish I could wrap the sun for him and reverse time instead of the gift.

My past few day’s inconveniences are minimal compared to his potential life-changing few minutes. This carve-out helps me look at big picture things. It’s time to think. Ninety-four million miles away, yet so close is the sun and a son who is thinking about his father.

My hope is he will find his morning sun’s facetime soon after we leave the office.

Find your morning sun to set aside crazy-town peoplefolk and focus on others who have life struggles ahead. They’re under the same sun. Eight minutes of aged warmth will reach you … and touch the faces of those who reach an age when life just isn’t the same anymore – like dads who did the best they could.