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.

One Step with a Sister Smile

Every day. Every day, before taking the first step of fifteen up a flight of stairs, I glance over to my right. This picture hangs among many … so delicate it is in my line of sight. Never do I ever pass by without thinking of my sister – if only for a second or two. This isn’t to say she’s not around. A few hours and a quarter tank of gas, I’d be at her front door. “Go west, semi-old man … “, and visit your slightly older sister sometime!

We weren’t old back then, for sure. The two of us hung out together a lot. Not surprising a picture showing off our smiles exists because it happened on porches, in boardwalks penny arcades, cheap family motel suites, and while we donned off-white cherub choir robes. We had each other to bounce smiles off of when happys and giggles hid behind adult stresses and concerns swirling about our home.

Yes, I do think about my sister when passing by this picture. Today, more than a few seconds…

…It’s because we’re so much alike – today, yesterday, and tomorrow. As adults, those three days, no matter when they fall on the calendar during any year, provide us with,”you, too?” moments. Times when we connect experiences together are wonderful. Separately thinking or acting lives in worlds, separated by concrete and time, come together in seconds through a phone – vanishing the weeks gone by during which we didn’t connect.

I stopped in to see our dad this afternoon. As usual, he was talking to my sister and chatting up the news of the day. She listens, he talks. So goes the daily long-distance phone call between the oldest of three and her father. I, the middle child – an appeaser and quite possibly the eyes and ears on the ground – am very comfortable checking in to see if all is well with the man who now struggles with names and occasional logic patterns. These are the smiling roles both my sister and I gladly play in the theatrical performance of a one-man, late stage in life, show.

We communicate ideas and thoughts just like we used to do in those rooms and arcades. Just now, the skeeballs, sandy footprints on the boardwalk, cherub robes, and baseball cards on the front porch have been replaced with “What to do’s?”, and “What to thinks?” about our dear dad.

Dad is fine, kinda. No worries, yet. The “You, too?” moments now are connected with wordy sentences sounding like answers we don’t really have at the moment. “Oh, you heard him say that, too?”, or “Man, I think I feel the same way …”. followed by a bunch of back and forth wadda-ya- thinks?

We know these moments aren’t unique to us. Thousands of sons and daughters have these conversations every day. Perhaps you are chit-chatting ideas back and forth over wires or airwaves with someone you love much as I love my sister? She and I are really trying our best to pilot this plane we have no idea how to fly.

For now … and today, after stopping in to see him, we went out for lunch. The usual Wednesday Canal burger satisfied my hunger while he decided a conversation about the local road construction was the best use of his time. Actually, this was a relief from politics and money … his usual go-to. Sure, names were a problem and I was glad to help. So goes life.

I have a sister, never forget how and when to smile, and never miss that first step. We were young once. I still feel that way when I see that picture, if only for a few seconds. There will come a day for me, possibly, when I lose my ability to remember names, places, or experiences. If that day comes, I want to smile….

I believe that is the first step in any process … no matter the challenge. I’m just one of the fortunate ones to have a sister by my side. If only in a picture fifty years old hanging so delicately in my life most times, that’s perfectly fine; however, I like the phone calls, too. I think she’d agree.