Perfectly OK

“Hey, it’s Dad. You should come in. There’s a guy playing the piano in about an hour. Thought you might enjoy it”

Hard for me to resist. As a pianist, this message from dad garnered my musical attention. I do get flyers from his facility noting special events and didn’t notice this, however, things change. In the midst of a stupidly busy schedule, finding time to meet dad’s needs and enjoy a pianist was hard to pass up.

I quickly loaded frozen foods into my commercial freezer, stacked rolls and buns neatly on trays in my van, organized paperwork in half-time, and waited in line at the local bank … all in enough time to arrive five minutes early. Dad was seated in his usual comfortable chair against the same wall to the right side of a wonderful grand piano. Luck would have an empty chair to his right. A casual son-hug and welcoming smile greeted the 2 pm concert.

… and so did a nice lady who walked into the ornate room with song sheets in hand.

To my unexpected surprise, this was an afternoon sing-along. Not classical Chopin or beautiful Bach, but nonetheless a shifting of my mental gears toward “You Are My Sunshine” and “She’ll Be Coming Around The Mountain”…

And you know what? Perfectly ok!

Listening to delightful Debussy or magnificent Mozart is centering. I love piano music of all eras. Playing baroque through modern piano literature has invited joy into my life for decades. Listening to concerti, sonatas, suites, symphonies, operas, Broadway shows, and beyond has immeasurably changed my life.

Yes, music is extremely important. (The arts, in general, are.) No more than fifteen years ago, dad was active in my barbershop harmony chorus. As I directed, he dutifully sang in the lead section. This day he hadn’t lost his wonderful voice through song, although, following the lyrics was a struggle.

We sang together. Melody and harmony. Thirty minutes of a son interweaving notes around a dad’s melodic existence as only he knows. Some correctly sung, some not. And, that was certainly OK. Perfectly fine.

“What a cool musical metaphor painted on the canvas dad and I have!” This crossed my mind as we sat together winding our way through “Grandfather’s Clock”.

So many times over the years dad has maintained a path – dementia led – that isn’t really solid melodically, and I’ve had to find a way to harmonize with it. Have it make some sense, in a way – try to improvise a solution that’s pleasing, kind, and sympathetic. All the while, keep the intent of his melody intact.

After the sing-along, we had to part ways quickly as my schedule became my boss once again. Too many events and not enough days to … well, work. Dad was very happy an effort was made to come in and see “the guy” play piano. With a hug and a smile, about forty-minutes ended.

During his week-ending days, he most likely forgot that “concert”. Routine took over. I am sure meals, daily care, and other activities began to occupy brain space otherwise used for “Let Me Call You Sweetheart” memories. Again, certainly OK. Perfectly fine.

I’ll take all this as a win – both for dad and me. Sure, it wasn’t capricious Copland or happy Haydn who occupied our time; however, it was classic dad for a half-hour as only he can be … as he is.

Next time there’s a concert invite in my message inbox, I’ll still go regardless of the “performer”, of course. Never know what surprise awaits that will engage my interest.

Warning though. If it’s anything related to dancing, there will be no video or blog post. That’s an art form – albeit very important – you won’t see me do. Not pretty.

… And not even close to being perfectly OK.

My Friend at the Tower

(Before reading the following, there’s an update. Ron DiFrancesco is now my friend. He is the last known survivor of the south tower. I didn’t Google. Strangely enough, no more than two hours after posting this blog, a video appeared on my Meta feed. Unsearched. Unasked. And now, unmasked in my world. I have no answers, still, as to why so many perished on that awful day. As to the possibility of my “illogical” question? Asked. Answered.)…

… with that in mind, I wrote:

I do remember September 11th 2001.

This short entry won’t be a recollection about what I was doing on that beautiful Tuesday morning. Instead, it is what always crosses my mind every year on this day. Every. Year.

Not saying this is a unique thought at all. It’s different, however. Many others may have the same. What an awful day it was, so the odds are pretty good.

My mind goes to whomever that very last person was who got out of the first tower before it fell. Who was it? Did this person actually survive the immediate aftermath of all the debris enveloping that entire area? Most likely there was some idea a second plane hit the other tower … maybe?

…and then I assume whomever it was, they didn’t survive unless he/she had enough time to run far enough away.

Curiosity keeps me interested enough to, oddly, not google for an answer as to “who?” this may be … even on the remote chance someone exists who fits the query.

… and I’m not even sure it’s logical?

All I do know is heroes went in and didn’t come out. Jumpers weren’t suicidal. They were our fellow Americans who needed to escape the fiery furnace for one last breath of freedom – whether voluntary, or not. People died that day in planes and buildings, who expected to return home – which is, sadly, the only thing logically that connects from that Tuesday.

I think this is why I don’t really want an answer to my, possibly, illogical question. That day didn’t make a whole lot of sense. Like you, I’ve listened to so many tributes and read a copious amount of September 11th recollections and remembrances. Also, many analytical articles have passed through my hands.

With all that, those mid-morning moments still make no sense. What a waste of good, human souls who had so much to contribute these past twenty-five years.

I don’t know who the person is I think about? Maybe he/she doesn’t exist in the scenario that may not have even happened.

All I know is what did happen on September 11th is still real in my brain. A time in my life as unique to me as to you. All of us alive at that time can’t forget how awful it was.

… and I am very satisfied just letting this go at that.

No real answers.

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.

Nothing Can Be Something. Just Don’t Know What?

There’s nothing like nothing.

Pretty much a whole day wasted on bills, errands, to-dos, and miscellaneous, mindless meddling in necessary life’s mundane activities. One planned trip around a corner branched off into two more “why not since here?” scurries to other “whys?” in the road where, of course, another destination awaited.

It’s not those payments, plans, and preparations didn’t need to be done. Today, however, wasn’t the day designated for such fun. It was to be hours of relaxation after a short commitment this morning at a local school. We are to be the masters of our time, not the other way around?

Convenience took over. I know of no other explanation. A “why not?” theme took over my symphony of serenity. I stepped up to the podium expecting to conduct one small errand. Considering the well orchestrated list of bills and preparations on a list – well scored in my portfolio sitting quietly to my right – I had no choice but to lift the convenience baton and begin directing.

All my players were close and within cooperating distance. So, “why not?” … without regard to the time it was going to take. This was, in retrospect, not a little minuet as it turned out. More at hand an extended, multi-movement opus including multiple stops, some electronic communications, busy traffic, many players of varying expertise, and time … lots of time. A rather complicated score to handle with little preparation.

For one who was only prepared for calm and relaxation, quite a change.

As the coda came to a close around six-thirty this evening, a curtain of relief came down on the stage. The orchestra quieted down to a welcomed silence. No more traffic. No more time. Done.

And so nothing like getting no relaxing in … and nothing like that feeling of getting a lot done when not expecting to.

Is this a paradox? So says google: “A situation that appears self-contradictory or illogical at first, but actually reveals a hidden or deeper truth.” I thought so at first, but not really.

Nothing happened I wanted to do, but a lot got done I didn’t want to do … but am glad got done – after all was done.

Maybe it falls along that procrastination fine line? You know you “should” do a thing … keep putting it off … glad it’s done when finally finished?

Don’t want to read too much into all this. Find it mildly entertaining I spent valuable time being slightly irritated – giving into impulses to satisfy non-urgent obligations … only to be happy about it later. The self-diagnosing psychiatrist in me would simply like to know what condition this is.

If there isn’t one, that’s fine. I’ll just go back to the refrigerator, crack open a pack of chocolate chip cookies and a diet soda. Life can be more easily understood under a sugar high, anyway.

Good news. The next few days I have less bills to pay, less planning to do, and just a little prep. work for next week’s partial work schedule and hopeful relaxation carve-out.

After all, if Bernstein and Karajan were allowed breaks from their prestigious podiums, I should be given respite from my life’s directorial responsibilities once in a while, too.

They’re Little, Little

It’s not uncommon to see a family of deer in our neighborhood. Usually four – a mom, dad, and two fawns. They wander about in back yards, a local graveyard, grassy areas surrounding evening walkabouts, and an elementary playgrond. During this particular evening, an after dinner stroll was, apparently, necessary near our high school. The “kids” were playing with each other as mom and dad paid particular attention to slow moving dusk traffic. I was part of that as my Mitsubishi took a u-turn up a block to make a return trip. A wooden fence provided just enough of a photo distraction between my parked car and these cervid creatures to avoid any nervous movement from them for a few seconds. Within a minute, it was time for another family adventure across the way … and they were gone.

Like I mentioned, this encounter isn’t unique for our neighborhood. Within a four block radius (+/-), deer are spotted on the regular. Sometimes there can be an octet of brown beast-ettes roaming lawns, minding their lives. Nobody really pays a bother. Once in a while, a garden takes notice as one of its vegetable or flower residents is, unfortunately, relieved of its residency. Such goes the “neighborhood”.

What do we expect when eighty years ago one lonely house stood alone four blocks away? This deer family’s ancestry had free, unobstructed reign over acres of land. Before two schools and dozens upon dozens of houses were built, this area was, yes, a bit swampy … but it was their home. Now they are still free, yes; however, dodging hundreds of over the speed-limit cars, skirting over paved roads, and avoiding as much human interaction as possible…

… even those pesky Mutsubishi pull-overs who insist on that one “please hold still” picture. The comment, “They’re so little, little”,… came across from my passenger side. I laughed. A much needed smile.

Why bother mentioning, right? Well, I needed it. Sorry, cute deer family. You were needed.

Seven hours of unnecessary, frustrating, aggravating, over-the top technological indignation precipitated this deer, oh so dear, encounter.

My phone died during lunch while I finished off a left-over Subway sub from the day before. It just went blank. No warning. No. “Hey, Doug .. guess what? I’d like the rest of my life off now. Please make sure you have everything in order. Let me know when it’s a good time for you and then I’ll sign off…”. Yeah, no.

You’d think a trip to the phone store – in the middle of an already $%*&^ busy three days – would be easy?

“Hey, my phone decided to check out…ideas?”… I felt was a timely, honest question to ask the sales representative who inquired why I stopped in.

“There’s one customer ahead of you now. Would you mind waiting?” I’ve had no issues before, so, no. Thirty minutes later finally at the service desk, the system doesn’t recognize my pin number I’ve AWLAYS used to reach my accout. I, obviously need a new phone. (Data storage – or some such conflagrational contraption corruption is the issue) … They can’t access my account. One more attempt, I’m toast. So off to a corporate store to use picture ID.

Corporate. Wait forty-five minutes to be told ID can’t access a business phone. Yeah, me!! They need to call another corporate line for voice authorization. The representative was kind, however, her tablet had spinny circle unkind issues going on and couldn’t connect IN AN INTERNET PHONE STORE (to add emphasis to my rising blood pressure issue at this particular time). In the mean time, two older church ladies in line behind me – who waited just as long – were anxious to get to a church function. I graciously allowed them to take my spot because God didn’t want me to stay in this situation any more… I am very sure of this.

Back to store #1. Stuck. Suggested I go back home to my PC email. That I do. Second floor, through the garage up the steps. My sales rep. wanted to send an email verification to that email, but IT wanted to send a verification code to my PHONE. Why? Because at this most unfortunate of times, my email decided to log out. In order to log in, of course, it wanted to send a two-step verification code to my freakin’ PHONE! Locked out of email. Locked out of my phone.

Locked out of any sense of sanity.

Oh, and everytime I come into the house now, I have to take off my shoes because there’s new carpet. This is a separate issue. Never mnd.

George Gobel once said, on the Tonight Show, “Did you ever get the feeling the world was a tuxedo and you were a pair of brown shoes?”. I felt that way in the middle of all this yesterday. Unconnected with the world. No cell. No email. No help. No texting…. And, this is sad, angry, and kinda upsetting at the same time. Something for all of us to look into. So connected to our electronics. Ugh.

Anyway.

I had to navigate through a zero-sum gain for over seven hours. Tried an office computer away from the house where, apparently, they changed the password?… No luck. It was an afternoon where an additional cell phone “could” have helped to coordinate codes, but it was tied up at, ironically, a funeral. I finally got into my email through another cell phone four hours later, called store #1 to re-send an access approval code, and walked out with a new phone. That process was an hour.

Another battle has ensued since with all downloads, password changes, email configurations, and just old guy problems with new technology. Yesterday was ridiculous. I know it became necessary. A pin number couldn’t open my account. Four simple little digits turned into multiple trips and a stir pot of frustrated stew. I, truly, had better things to do yesterday. Unfortunately, this is where all of us are. Technology in our hands. I need a phone.

These phones are getting better and faster. My new one has twice the memory. Couldn’t get a trade value for the old one. Not sure why? At this point, don’t really care. Has little, little value to me now. After all, it is dead to me.

It isn’t possible to write every detail from yesterday. I am fortunate no medical team was necessary to assist in my hours-long ordeal. I, truly, didn’t know we had so many masons capable of building that many brick walls so quickly in our small community. Gives me hope for the trades around here.

They’re so little, little in the long run. These problems. At the time, boy do they seem monumental. I guess this is the lesson from yesterday. Seeing that family – and the comment which followed – forced me to think. Was I over-reacting? Probably. Yet, the situation required frustration. I could only stay patient for so long. I didn’t yell at anyone who was trying to help. That’s completely unnecessary. When it comes to technology, I guess they only did what they can do. If a button says, “do this”… that’s all they can do. Step A has to happen before step B?

My multiple car-alone conversations yesterday, however, …well. Let’s say they weren’t sermon material and leave it go at that. I do hope my church ladies made it to their event and the little, little ones had a pleasant evening with their family.

As for me, I hope to the deer, dear heavens I don’t need another new phone any time soon. If I do, hide all the bricks, please.

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.

Little Boy, Big Boy

From where I stand, this is one view of our local Norfolk Southern rail yard. Off in the distance is the Rose Yard. It’s where hundreds, if not over one-thousand men worked at one time. Building, painting, repairing cars for transport all over the USA. I haven’t come across any employee – retired or current – who isn’t proud of earned sweat from a day’s wage.

A few weeks ago, the Big Boy steam engine came rolling through on its nationwide tour. Definitely a treat for those employees and all train enthusiasts locally. My vantage point to see it at the Rose Yard – not as an enthusiast, but as a fortunate food vendor – was spectacular. (Much different than it would have been as if I was standing where I am currently).

Yes, a Big Boy. Thousands upon thousands across America waited for hours to see it rumble through their two-stop sign towns. If only for a few seconds, it became a story they can pass on to their grandkids. Videos swarmed Facebook and other social media sites. “Where to see it..” maps and guides were posted on dedicated websites. In its own way, the Big Boy months-long event was a bring-America together spectacle for all to see and experience.

I live in a railroad city. Altoona, Pa. was known as one of the major manufacturing hubs for rail car building. This is why Norfolk Southern chose us to host one of their two-day events for the Big Boy. Huge daily turnouts to meet and greet the steel-wheeled celebrity, political photo-ops, employee appreciation rallies, and merchandise give-aways … all to enhance the engine’s allure and historical stamp on our country’s railroad heritage.

I mention all this simply because had I not been invited to be a caterer for one of the events, this engine would have steam-rolled through me with little consideration. None. I had no interest in seeing it. With this said, shame on me.

Yes, shame on me for not wanting to – at the very least – TRY to get a ticket for viewing. A once in a lifetime thing like this … and I treated it like an order at McDonald’s. What’s the big deal, right?

Noticing all the pre-press and hubaloo sirening down from afar, I could have suffered from social media fatigue, I guess? Too many “same perspective” videos of this engine being welcomed into multiple towns of various sizes, colors, and shapes? Locals here complaining of pre-ticket mis-management, maybe? Whatever the reason, I couldn’t get off the platform and board the excitement train.

All this changed. That moment Big Boy came barreling down into the Rose Yard, I was my nine-year old Christmas morning, pajama wearing, pumped boy once again. There was something happening inside. Just pure joy. All the lethargy disappeared. Yes, my camera phone video saved is almost exactly the same as all the others, however, for me it frame a different perspective on my life.

… On how not to be so quick to judge.

Something unique about seeing this special train that evening. As someone who knows nothing about these metal mechanical machines, I flipped from steam stupor to Big Boy bliss within seconds. All the locomotion finally made sense surrounding its arrival. The engine enthusiasts weren’t that crazy after all.

I pre-judged the event and the folks who were excited about its arrival. Not in a bad way, of course. A better word would be, “dispassionate”, I suppose. But, this is on the same track. Every time a conversation, article, newscast, or social media pop-up feed came, warning light arms dropped down and my caring car came to a halt.

That car in which I traveled did make its way to the Rose Yard. Yes, It was a concession van, but nonetheless a vehicle. Norfolk Southern corporate staff couldn’t have been nicer, as an aside here, and the employee event went off without a hitch. As I remained behind to clean and organize for a multi-day event coming up, all the tah-dah had dispatched, few people remained, and Big Boy sat almost alone on a track only two minutes walk from where I stood. The timing was perfect. Just me and a huge machine. History along with a guy who plays the piano and sells food. Quite the contrast, I suppose. This was the moment I regretted ever questioning those who spent weeks anticipating its arrival.

They weren’t wrong.

Look, I’m in my last third of life … if things work out. It’s highly likely I will continue to make judgements about people, places, and things. We don’t make life changes and stop our own huge personal engine (at least at this point) on the spot. We can only try to learn as we barrel down our life’s track.

One small detail I did find out. This engine was getting assistance from two other diesels connected behind. Kinda makes sense. It was built in the early 1940’s, so for a machine running eighty-six years, …. quite understandable.

For us as well. We don’t make any changes in life without support from good friends and family behind us – encouraging us to be the best we can be. It’s not easy, … especially as age and habits set in.

There won’t be another Big Boy event in Altoona – at least in my lifetime for sure. I am so glad my business afforded me the opportunity to learn a little life lesson. Without that chance six weeks ago, I would have missed being a little boy again … if only for a few minutes.

We need moments like those. Win-wins. Small life lessons coupled with happy experiences.

Here’s hoping the next “Big” thing to come down the social track is met with a little less skeptical short-sightedness on my part. Can’t guarantee it, however I can at least try to be more accepting and give myself a chance to be surprised.

Big Boy wanted this to be an awesome experience for all of us. After all, this is what its whole national tour was designed to do.

Just so happens I got an extra life lesson bonus.

“Just Me…”

Minutes disappear. Hours melt into days. Weeks and months become unrecognizable. Whatever the current year is – in a life previously filled with work, family, church, and hobbies – it isn’t relevant anymore. No time, or date, is vital to my dad’s day-to-day life now.

He has dementia. As you may know from previous posts, this condition is his reality.

What’s important to him are multiple calls, every day, to me from the activity room phone. “Just me. Calling to see if anything is going on today. Ok.”, he says then hangs up. Usually this is the message on voicemail. I can’t pick up a majority of the time due to my schedule. Thankfully, this message comes in on the other end of a redial button. I have my doubts dad would have recall to pull out a ten-digit cell number from his shrinking brain.

I am grateful for these messages. So thankful. Even though they overload my queue, when deleting messages, I always keep his last message. Always. One never knows what dozen, or so, words will be his last.

Returning a call is difficult. The facility number rings not only to that hand-held, but also to other phones as well. Besides, even if I call back immediately, his mind would have him take a u-turn back towards the dining hall, or back a hallway within seconds from hanging up. No matter, it’s good.

Always good to hear his voice. Only a matter of a day or so before I get in to see him. My minutes and hours are noticeable and very regulated by a tight schedule – one shared within a few seconds after dad sees me enter his room.

“OH, hey! Nice to see you…”, as his eyes light up , posture straightens, and arms immediately move toward lacing a worn pair of sneakers. “You want to go somewhere? What have you been up to?”

“Hey, dad”, .. as I scan the room for anything out of place … any irregularities from a man who is very, very meticulous about his pens, hats, chapstick, clothes, belt clip, and toiletries. “I’ve been getting your messages. Sorry I haven’t been available to answer.”

“I’m sure I’ve called you. Just don’t know how many times. Was it today at all? Where are we going?”,

By this time, those worn sneakers on his feet need a destination. So, a walk from his room down a long, ornate hallway begins as does a wonderful conversation between a father and son. Details about my work. The experiences in my daily wheres and whens have to be passed to him. He enjoys hearing of my successes and failures. My ups and downs. I know these don’t process in a normal way, however, he connects to me. To my experience, my life, as he needs to during the three minutes we walk in that hallway.

Finally ending in an entrance/exit, we depart. Final destination: somewhere. Could be a dollar store, hobby shop of my choosing, quick lunch, or simple walk through a grocery store for ginger ale and cookies. Wherever we go, my goal is his experience. His glance at new faces, new places. Fresh air and sunshine. Minutes, possibly an hour, or two, away from his norm to shake off a few old days and put new ideas into a brain stressed with anxiety, stress, and confusion.

“Stop sign sentences”, as I like to call them, are so enjoyable. Every jaunt around town, the same one is repeated each time. Meaning, when one is started as we leave his facility, it is often repeated at most of the stop signs. Usually in the form of a question answered once – yet asked again, … and again .. and again, I find myself challenged to answer differently. It’s a puzzle to be solved for me. For dad, just another intersection in his brain where logic and memory take a left turn.

These short trips always come to an end. Confusion usually follows our return, unfortunately. Life, for dad, is simple yet complicated. No responsibility. Everything is looked after.

Complicated in the worst way possible because nothing makes sense … and he kinda knows it still.

The phone messages are so nice for me to hear, yet I know he is struggling with what to say. He is trying to stay connected. I love this. Like before, I always want this and don’t want it to stop.

“It’s just me.” will be silent some day, however. This is the nature of dementia.

It’s my nature to keep up with what he needs as best I can. In as much as he needs connected to me, I need this from him. As to me … “Just me”?… I need him to add value to my life – to still be interested in what I am doing even if it’s only for a few fleeting seconds. That connection is so important.

… and I’m perfectly fine with both of us staying in touch with each other the best way we know how.

He can push redial as many times as he wants. Yes, it will go to voicemail most likely. At least it’ll be a few more seconds I can save in the archives for a later time…

… when the phone stops ringing and a very important voice in my life is silenced by a disease nobody should ever have to endure.

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.