Head bent, I contemplate Dr. Michelle’s directive “… quick, write a children’s story with animals … then use those animals as substitutes for the Disney characters in your storybook about Dave.”

I puzzle over what kind of animal would be suitable to replace Eeyore, the sad donkey who had lost his tail in Winnie the Pooh. And what about the other Pooh characters in my story? She wants me to write a book using literary characters of my own to replace the Disney ones. I’m hoping Electra might give me some ideas.

ME: “ Well, we’re finally back. Had quite a call from Dr. Michelle. She said I couldn’t use Disney characters in my presentation, which, in addition to other cognitive-communication programs I plan on presenting, also includes ‘Dave’s Tale,’ the book I wrote for my Grandson, Joey. Said it would be a copy-write violation and suggested creating my own story with characters to substitute for Disney’s.”

ELECTRA: How are you going to write a book that quickly?“That’s a tall order, with the conference only four months away! Can you write a book that fast?”

We find ourselves once again inside my 2007 home. I watch as I hang up the phone before leaving with passengers in tow,  heading back to my time traveler, Electra, who is still parked out back. As always, she anticipates leaving for parts unknown, unknown to her but not to me.

Head bent, I contemplate Dr. Michelle’s directive “… quick, write a children’s story with animals … then use those animals as substitutes for the Disney characters in your storybook about Dave.”

I puzzle over what kind of animal would be suitable to replace Eeyore, the sad donkey who had lost his tail in Winnie the Pooh. And what about the other Pooh characters in my story? She wants me to write a book using literary characters of my own to replace the Disney ones. I’m hoping Electra might give me some ideas.

ME: “ Well, we’re finally back. Had quite a call from Dr. Michelle. She said I couldn’t use Disney characters in my presentation, which, in addition to other cognitive-communication programs I plan on presenting, also includes ‘Dave’s Tale,’ the book I wrote for my Grandson, Joey. Said it would be a copy-write violation and suggested creating my own story with characters to substitute for Disney’s.”

ELECTRA: How are you going to write a book that quickly?“That’s a tall order, with the conference only four months away! Can you write a book that fast?”

ME: “I don’t know! Geeze, I wonder if Walt had to get permission from the author of Winnie-The-Pooh to ‘Disnifey’ his story. By the way, I’m curious, who was the author? Can you find out?”

ELECTRA: “On it! Here ya go … well, sort of; the information is very long and complicated, spanning over 30 years. Winnie-The-Pooh, published in 1926, was written by British author and playwright A.A. Milne. When Milne died in 1956 at age 74, he willed the stories to four beneficiaries. However, his widow sold her rights to Stephen Slesinger, and at some point after Slesinger’s death, his widow sold those rights to the Walt Disney Company. Sooo, now think about this … there are still three beneficiaries who retain some ‘piece of the action,’ so to speak!”

ME: “You mean to tell me that in addition to Disney having certain rights to the story, three others are still involved?”

ELECTRA: “You betcha, and it gets even stickier since the ownership includes more than just the stories.”

ME: “Wadya mean… more? What else?

ELECTRA: What else, you ask? Have you forgotten about the illustrations? That’s what else!

Milne did not draw them. The illustrator was E.H. Shepard, famed for his 1908 ‘Wind In The Willows’ illustrations. It was Shepard who gave life to Miline’s stories.

ME: “Ummm, that certainly does make the copy-write issue very complicated!”

ELECTRA: “And it’s even more elaborate. Here’s what else I discovered from my other engine, ya know, Google, the search engine …”

The UK copyright on the text of the original Winnie the Pooh books expires on January 1, 2027, at the beginning of the year after the 70th anniversary of the author’s death. The illustrations in the Pooh books remain under copyright until the same amount of time has passed after the illustrator’s death which is on January 1, 2047. And that’s British copy-write law. It’s different in the United States. In the US, copyright will not expire until 95 years after publication for each of Milne’s books first published before 1978.

“And, now get this, it includes the illustrations.”

ME: “No wonder ASHA is so strict about compliance with copy-write laws. Guess that leaves me no choice. I need to write a book, but I need time to think about the how!”

Leaving Electra with our passengers buckled into their seats, I hurry down Electra’s air-stairs and walk swiftly to the “Discovery Meadow Path” next to my development. A slight breeze carries the scent of wildflowers, perfuming the warm air. I slow down and begin strolling along the ground, compressed from years of repeated mowing, making for an easy walk, wide enough to separate us humans from the tall grasses, buzzing bees, birds, and insects.

The summer scents and sounds are a pleasant background, adding to the enchantment of this magical place. But, as always,  it’s the clouds that become my focus. Looking up, I study them, their shapes, and what they remind me of. There, off to the East, looks just like an Elephant, and next to it, a wondrous mountain. But as I walk, with the wind gently morphing the clouds from one shape to another, I note the elephant has lost its trunk, and its front is now its rear and vice versa. To me, that elephant in the sky now looks like a skunk, with its previous long trunk now a long tail. It was then that I knew … a moment so obvious. The moment of discovery and I shouted out …

EUREKA!

My passengers, still in the corner waiting for me to make up my mind, listened as I ruminated out loud. Suddenly my thought process was interrupted when they began peppering me with questions.

PASSENGERS: “Wadya mean … ‘Davey-Sitter?’ “Why haven’t you mentioned this person before?” “How long has he/she been around?” “Is this person one of us?” “Blah Blah Blah!”

ME: “Ok, Ok, let me explain. You are my forever friends and  ‘Davey-Sitter’ is not. This person never reached passenger status.  Indeed ‘Davey-Sitter’ was expunged from my life shortly after Dave’s death … now watch out for the date. It may ring a bell, different from the telephone one you heard me answer previously. I’m talking about a mental bell. Dave died on November 15, 2007. Get it? That’s the same date as the upcoming ASHA Conference.”

PASSENGER #1: “Oh, so you never really got to go to Boston … right?”

ME: “Right, but pretend you don’t know that. Keep it to yourself. When Electra flies us into August, I’ll be answering the same ringing off-the-hook phone, just in a different month and on a different day.

PASSENGER #2: “OK, but before we leave, you better answer the current phone, cause It’s still ringing.”

I grabbed the phone and once again greeted Dr. Michelle, who wanted to know my decision. I told her, with great enthusiasm, how excited I was to present at the ASHA Conference, assuring her I would include “Dave’s Tale,” the book I had written for my grandson.

PASSENGER #2: “Whew, just in the nick of time. I was afraid Dr. Michelle would hang up before you got to the phone.”

ME: “I don’t think so, circumstances would never have allowed that to happen. Time travel just doesn’t work that way!”

PASSENGER #1: “Yea, I think we got that. But before Electra transports us to August, with yet the same phone ringing off the hook again, we Passengers talked it over and want to know more about ‘Davey-Sitter.’ Why wasn’t this person allowed to become one of us… you know, one of your passengers?”

ME: “Oh, you folks, although I love you to the moon and all, you’re asking a very difficult question. ‘Davey-Sitter’ is the nickname I gave to my paid caregiver assistant. Yes, that’s right, I couldn’t do it alone. No one person could take care of Dave, especially not me. But, there’s so much to tell, I just don’t know where to start.”

PASSENGER #1: “How about, ‘Begin at the beginning and go on till you come to the end: then stop.’ If that advice was good enough for Alice when she was in Wonderland, it’s good enough advice for you.”

ME: “Alice was in Wonderland and, in a way, so was I. Always wondering what I should do next during Dave’s tedious return to infancy. The best way I can explain why ‘Davey-Sitter’ never earned passenger status is to use idioms. As a writer, I don’t much like them but … they do come in handy.”

PASSENGER #1: “Just ‘go for it, we are all ‘on pins and needles!”

ME: “Basically I could sum it up by saying I was ‘between a rock and a hard place,’ or ‘between the devil and the deep blue sea,’ or ‘between Scylla and Charybdis.’ You know what I mean … I was in a ‘Catch-22’ situation.”

PASSENGER #2: “So we can assume you were stuck! Can you simplify, using only one word to explain why you were stuck?”

ME: “Hmmm, yes, of course, it was — ABUSE.”

After a collective “OMG,” from the passengers, Passenger #2 asked …

PASSENGER #2: “Just who was abused, you or Dave?

ME: “ME!”

Another collective “OMG” was followed by PASSENGER #1 who asked …

PASSENGER #1: “How were you abused? Was it physical, psychological, emotional, or something else?”

ME: “Not physical but certainly the others you mentioned. Add to that intimidation, subtle threats, frequent bullying, theft, and abuse to my home.”

PASSENGER #1: “So, next question … Why didn’t you fire this ‘Davey-Sitter’ and get someone else?”

ME: “As I said, it’s not that simple. Assistants are ‘few and far between.’ When Dave was evaluated by a physical therapist, the safety recommendation was a two-person-assist.  Meaning it would take two trained assistants to transfer Dave safely from bed to wheelchair or commode. My ‘Davey-Sitter’ was very strong with skill sets few had. Add to that, the difficulty of finding any assistant able to work a 12-hour shift consecutively during the work-week.”

PASSENGER #2: “You said 12 hours — That’s a heck of a shift! What about the other 12 hours?”

PASSENGER #1: “Uh Huh, and you said during the work week. That’s Monday through Friday! What about weekends?”

ME: “Both great questions. It was only a 12-hour shift for about 4 years. For the first 10, I worked from home in my upstairs virtual office. Dave was busy watching old OSU football games, looking at newspapers, cutting out articles, or napping downstairs and the doors were alarmed in case he might wander outside. When work took me to one of my nursing facility clients, I simply brought Dave with me.”

“At first, he was safe staying in the rehabilitation department of whichever contracted facility I had a meeting. However, as his Alzheimer’s advanced, and this was no longer feasible, I enrolled Dave in an Adult Day Center until his agitation became so severe that I was asked not to bring him back. By then, no one person could take care of him for more than a short shift. Dave required institutionalization. During his stay in a locked Dementia Unit of a private CCRC, Dave’s neurologist trialed him on a variety of pharmaceutical cocktails. Once the correct meds were established, I brought Dave back home. That’s when I needed an assistant who could manage him 12 hours a day, 5 days a week.”

PASSENGER #2: “But you still haven’t answered my question! Who took care of Dave the other 12 hours.”

ME: “ME!”

PASSENGER #1: “And what about the weekends?”

ME: “ME!”

PASSENGERS: “But HOW?”

I told the Passengers that the answer to ‘HOW’ had to be postponed since Electra awaited and we needed to fly on to August. However, I did explain Dave received hospice care during the last year of his life, allowing me to reduce Davey-Sitter’s daily hours from 12 to 7, retire from work, and stay home with Dave.

But the Passengers were insistent, wanting to know more about Hospice. I had to explain the hospice year was yet another long story needing to be postponed and to get ready to depart.

ME: “Buckle up, we are about to leave Blog Post #28 and continue on to Blog Post #29.”

“Are you ready to Go Electra?”

ELECTRA: “Ready!”

ME: “How about you Passengers? Are you ready?”

PASSENGERS: “Ready!”

ELECTRA: “And away we GO!

Stay tuned to learn more …

ELECTRA: “Thanks for the sing along, but, before we takeoff, can you tell me how come you left out the last stanza?”.

ME: “Ya mean … When they’ve all had their quarrels and parted, We’ll be the same as we started …?”

ELECTRA: “Exactly! So, did your friends have quarrels which you didn’t? And if not, did you remain just the same as you started?”

ME: “Hmmm, it’s complicated. As far as the first line re quarrels, thinking back, the answer is YES. Many friends did have quarrels and some even parted, as in … they got divorced. But DJ and I never parted, despite quarreling for a year or so before and after he was diagnosed with Alzheimer’s.”

ELECTRA:  “And the quarrels were about …”

ME: “We quarreled about money. We quarreled about the house. We quarreled about travel. And we quarreled about our future. But, our quarrels were always one sided with me doing all the complaining and DJ contributing only silence. In actuality, since a quarrel is between two or more people, I guess I could say, we never did quarrel. However, that, by itself became the main issue since resolution was impossible leaving me in a state of anxiety.  This went on for over a year until I suggested we go to a marriage counselor. DJ neither agreed nor disagreed so I decided to seek help on my own. My Medicare plan selected a psychologist based on location and during the initial phone interview I explained my fears re: Dave’s condition. Then I was told he was unable to schedule an office visit until Dave’s questionable condition was medically diagnosed. So, I was stuck.”

ELECTRA: “How did you get unstuck?”

ME: “Several months after that, I received an afternoon phone call from DJ’s best friend and Mellon Bank co-worker. I had just walked into the house after having had lunch with an old friend. The phone was ringing. I rushed to pick it up. A familiar male voice said, ‘Hi, Dylan, it’s Michael,’ and then, in a somber tone, ‘there’s something wrong with DJ.’ It only took those few words to push us both down the preverbal rabbit hole. I held DJ’s hand tightly as we fell, headlong, spinning into the bizarre world frequented by others who have dementia along with caregivers who came along for the wild ride. Along the way we met many a Mad Hatter, Cheshire Cat and a slew of Kings and Queens.”

ELECTRA: “What about the next phrase in that stanza? The one that says, ‘We’ll be the same as we started.’ What about that? Did you remain the same?”

ME: “Easy peasy— No! Neither of us were the same as we started. No-one ever is. Obviously, since we all change  physically, emotionally, and psychologically along with whatever situational adaptations we make, staying the same is impossible. As for DJ, by the end of his life, he was reduced to the infant stage of complete dependency, while I, after years of trauma, although left with PTSD (Post Traumatic Stress Disorders) became more independent.

ELECTRA: “Speaking of moving on — our  passengers are buckled in and ready to go so — where to next?”

ME: “It’s obvious, we’re going back to the future — or at least as far forward as 2007. Remember how cold it was just before we left? I had had an important phone call from ASHA asking me to write an article for the June issue of their Leader magazine. (Read article here.)

ELECTRA: “Of course I remember … I never forget anything! You needed time to write that article so we left the you from 2007 to complete your work while I transported the you from now along with your passengers back to 2001 which we are now ready to leave. So, shall I take you forward to that same winter day?”

ME: “No! Although I want you to return forward to 2007, let’s land, once again behind my house, but put us there on a warm summer day. Hmmm, let’s go now to the afternoon of July 16.

Stay tuned to learn more …

Obviously, neither I nor Electra, nor any of our passengers could wait six months to continue the saga being developed on my blog, Sky Writing. Thus, the flow of my story, including the magical details of what happened after the article was published, must now be interrupted. Time to fill in a pivotal gap.

Can you guess what that gap might be? One of the words in the article, “Still Traveling the Road” will give you a hint. Go ahead guess…

Maybe you guessed the word ‘Traveling.’ Well, although Electra takes us back to 2001, ‘Traveling’ is not the hint word. How about the word ‘Road?’ For sure that’s an important word but, nope, it’s not the hint word. The hint word is “Still” which infers the continuation of travels I had already started.

There was no doubt in my mind about where we needed to go next. I said goodbye to my 2007 self before putting on my coat, gloves and boots. Then after leaving through the front door, I trudged once again to the backyard. Time to consult with an awaiting Electra.

ELECTRA: “Good, you’re back. Glad that phone call didn’t take too long. Have you decided where we’re off to next? Everyone wants to get going.”

ME: “Absolutely, we need to go back. Back to 2001!”

ELECTRA: “I can get us there as soon as you say GO. But, you know me, I’m the curious and nebby sort, so why are we going back 6 years? details please. ”

ME: “Because ‘Still Traveling the Road’ is the second of two strategically important articles. Thus we need to return to 2001 when the first article was written. It’s imperative to explain the magic that happened after the first article before I explain the magic that happened after the second.

ELECTRA: “OK, what’s the title of the first article?”

ME: “It’s ‘Traveling the Road and Sharing the Load of Alzheimer’s Disease.’ Back then ASHA had won a big award from the Society of National Association of Publishers (“SNAP”) for my article.”

ELECTRA: “Yea, I remember now. ASHA invited you to receive the award on their behalf at SNAP’s annual awards dinner and ceremony. As I recall, you were quite nervous.

ME: “Yup, actually, I was a wreck. I hadn’t been away from Pittsburgh for over five years and had to fly to Washington, DC. It was the first time I left Dave overnight since his diagnosis. Plus I left him with a new caregiver further intensifying my anxiety. Just thinking about it makes me nervous all over again!”

ELECTRA: “I feel your anxiety in my wings which is not good for either of us. And it’s not good for our passengers. Come on, climb in, buckle up and, before we leave, take a deep breath. I know you’re still really cold so, like in the musical, ‘Frozen,’ put a song in your heart and ‘LET IT GO.’

ME: AAAH! Let it … GO!

Stay tuned to learn more …

ME: “Hello…”

MARAT: “Hi Dylan, it’s Marat.  I’m here with some of the ‘Leader’s’ editorial board members.”

ME: “What a nice surprise. It’s been a while since we last spoke. How are you and my old ‘ASHA’ buddies?” 

MARAT:  “We’re all good. Just finished conferencing about our next edition of the Leader magazine. Your name came up and we were wondering how you and Dave are doing. It’s been five years since the publication of your award winning article, ‘Side by Side.’ Are you still using newspaper articles to communicate with Dave?”

ME: “Ahh, I’m as well as can be expected given Dave’s condition. He’s declined significantly over the past five years. In fact he’s now on hospice. His ability to communicate using newspaper prompts lasted about two years. And even during those two years, I had to adjust the program to meet his declining abilities.”

MARAT: “Oh Dylan, I’m so sorry to hear this. But given how long it’s been since Dave’s diagnosis, I’m not surprised. I think it’s been about 10 years, is that right?”

ME: “Actually, Dave was diagnosed with early onset Alzheimer’s disease 12 years ago. But, don’t forget, I started seeing personality changes when he was in his late 40’s and I had my suspicions even then.”

MARAT: “It’s been a long haul, that’s for sure. Do you have any new words of wisdom for our readers? We have space for a short article in the ‘Leader’s’ next issue.”

ME: “Nothing directly related to oral communication. But, I did create a storybook about Dave for our 2 ½ year old grandson, Joey. The book had a wonderful effect on their relationship.

MARAT: “Hmm, sounds interesting. Do you have time to talk more about this?”

ME: “Sure Marat, I always have time for you and ASHA.” 

It all started when Joey was afraid of going near Dave because the Alzheimer’s caused Dave to look, as Joey said, ‘Scary.’ 

MARAT: “That must have broken your heart.”

ME: “It did. But, upon realizing Joey had never seen Dave any other way, I decided to write a book about his Grandpa and include pictures of a well Dave, doing fun activities like hiking, swimming, boating, horseback riding, etc. I compared what Dave was doing to pictures of “Winnie the Pooh” characters doing similar things. I called the book, “Dave’s Tale.” 

MARAT: “I like the title — it’s short and sweet.”

ME: “Well, you know me, even though it’s, as you say, ‘short and sweet,’  the word ‘Tale’ in my storybook has a deeper meaning. 

MARAT: “Wadya mean?”

ME: Well, many weeks ago I read a Disney version of ‘Winnie the Pooh’ to Joey who was upset because of the sad expression on Eeyore’s face. When I suggested Joey kiss the ‘boo-boo’ on Eeyore to make the donkey feel better, he did so repeatedly.  But, of course, Eeyore’s expression on the page never changed and Joey became frantic. Needless to say, I put the Disney book away. 

So the word ‘TALE’ in my storybook’s title is a pun referencing both the sadness in the story of Eeyore loosing his ‘TAIL’ and the sadness in Dave’s story or ‘TALE’ of loosing his walking and talking due to Alzheimer’s.

MARAT: “How did the storybook influence your Grandson?” 

ME: “After reading the book to Joey and explaining why his Grandpa Dave looked so sad, Joey’s reaction was empathetic. I suggested we sit together and read the book to Dave. Joey enjoyed this activity so much, he asked me to read it again and again. Afterwards, he gave Dave a kiss on the cheek and a hug.”

MARAT: “That’s so beautiful! Did Dave react?”

ME: “Yes, he began to focus on each picture and even remained alert as I read the story. Because of its calming affect, I started reading the storybook to him before meals. Dave was then able to take a bite of food or a sip of water which he previously had great difficulty doing because of fatigue and/or agitation.

MARAT: “Perfect!I This is a wonderful, functional example of improved nonverbal communication. It’s a great story. Can you write an article about this for the next ASHA Leader?” 

ME: “Most certainly and thanks for the opportunity!”

Stay tuned to learn more …