Is There Anything Funny About Alzheimer’s Disease?

Insights from a Male Care Partner 

February 2012 

YES! NO! SOMETIMES! IT DEPENDS (“depends” - the ultimate double entendre’). So many answers to an apparently rather straightforward question! Again, in case you’ve forgotten already what the question was (in which case, please skip the remainder of this essay and seek out your nearest neighborhood clinical neurologist specializing in dementing diseases for an emergency appointment), the titular teaser of this rumination is, “Is there Anything Funny About Alzheimer’s Disease?” Of the suggested four answers, let me deal with the fourth, i.e., “It depends!” is a legitimate, appropriate answer to the question of humor and Alzheimer’s. Here’s why. 

My wife, Kathryn, was diagnosed August 23, 2009, as a recipient of this dread disease, but in the early stages. We threw ourselves almost immediately into the fray, sensing the need to dispel the shadowy stigma associated with this dementing disease, a stigma, which often figuratively and ultimately literally sucks the very soul out of recipient and care-partner alike, out of family, even out of long cherished relationships. 

Our involvement locally led to opportunities nationally, which in turn led eventually to my dear wife’s participation on the Alzheimer’s float in the January 2011 Rose Parade in Pasadena CA. As the float negotiated that first 90 degree turn down Orange Avenue (or Colorado Avenue - I forget which) on that cold, cold January morning, we heard the shrill, amplified voice of some self-styled local celebrity happily informing the shivering, frozen-blanket-encrusted crowd in words close to the following, “Ladies and Gentlemen, now approaching us from your right is the float entered by the National Alzheimer’s Association, populated by Alzheimer’s victims and some of their care takers (!). These are the folks who can hide there own easter eggs, even year after year.” There were few chuckles to validate his crude rudeness. Not funny in the least.  I suggest "insulting" is more apt.

So, can Alzheimer’s Disease ever be funny? It depends! It depends on who is telling the joke or describing the incident. It depends of who the intended audience is. And, it depends on how much and what kind of and how much “skin” the teller has in the “game.” Ultimately, it depends on what the teller’s motives are. Someone who has the disease, who has maximum “skin in the game” for example has every right to tell the joke, to describe an experience. The parade barker certainly had no skin in the game, thus performed without rights. 

Anyone who is trudging down the Alzheimer’s path wearing the dementing disease moccasins, as recipient or care partner, has earned the privilege and right to tell the story, to recount the personal tale. For everyone else, it seems to me, it depends on the motive. If the intent were to demean, mock, belittle, disparage, denigrate, run down, deprecate, depreciate, downgrade, play down, trivialize, minimize, make light of, pooh-pooh, ridicule, treat lightly, scoff or sneer at (I wanted to cover every possible negative motive), the right to tell vanishes. The tale is offensive and insulting. Holy ground, in my opinion, is being trod upon by someone wearing unbuckled galoshes more suitable for the pig sty or by the jack-booted monster of the 1930’s and 40’s. I exaggerate only slightly. 

Me? I have skin in the game. I am a proud, severely tested care-partner of a brave, intrepid, determined recipient of the disease. I am empowered because of my role as care partner to tell a story or maybe even a joke. Even so, I must pass a test; my motive must be pure. If my intent is to mock, belittle, etc., I am no better than the parade barker or galoshes guy. If my motive, rather, is to bring clarity, educe compassion and understanding or to have or create a smile or a tender remembrance, the gates spring open wide so the story may enlighten, enliven, or even encourage. 

I had such an experience about a month ago. (Reader alert! If you don’t appreciate men discussing women’s intimate apparel, read no farther, please!) Some of Kathryn’s bras had grayed, probably due to the occasional black sock sneaking into the white wash I was doing. The undergarments were indeed gray to even the most casual observer. They begged for replacement. When worn with a white blouse, such a mis-colored bra gave the unaware wearer the appearance of sporting a small flak jacket under the blouse or perhaps even a locked, loaded and accessible weapon in a oddly colored shoulder holster. Who’s to know? Women, rightfully so, are uncomfortable with men who glance furtively at places other than their faces. Yet, the gray bra, hidden only slightly by the white blouse was more invitation to gawk that it was a piece of clothing to cover. 

The care partner cannot chose the duties or responsibilities to be fulfilled. The tasks, pleasant or not, fall on them. So, the case of the gray bras forced us to go shopping. There were no convenient or suitable choices. It was either shop or forget about white blouses. We chose the former. Sometimes, an effect of Alzheimer’s Disease is a declining self-confidence or decisiveness. Kathryn is experiencing some of this and recognizes it. She is comfortable with my filling in (usually, I suspect.) Our shopping route was predictable, Steinmart, Walmart, Costco, Smith’s Marketplace, Target (the “g” is spoken as a “j” and the final “t” is silent, rhyming with “Tarjzhay.”) I dutifully wanted to be sure Kathryn got what she wanted and was comfortable with her selections. I also did not want us to dally. We had some other obligations. We had earlier in the day borrowed all eight of the “Harry Potter” DVD’s from our daughter and were scheduled to watch the first three that afternoon (and evening and night, etc.) 

We entered the first store. I asked the clerk about the location of the lingerie’ department. The area around the check out desks where we stood became eerily quiet. I received in response a glance first at me, then at the woman in back of me who happened to be Kathryn, and finally a slowly uttered direction to the requested department accompanied by unsmiling, questioning face. We hand-in-hand sauntered to the spot and both began looking. Let me just say the experience never varied in any of the stores we shopped. My taking the lead in seeking out bra departments was always met with stilted responses. The women in those departments, both customers or clerks, veered away from me, sheltered their conversations with others, and sort of sneered. 

I, on the other, had became familiar with the rating system, though that is probably not the right word for it. There’s cup size, A through E. (I silently wondered if there were anything like the sizing system for shoes to fit my father, who required a Triple E. I suppose so.) There’s the circumference measurement, roughly equivalent to a man’s chest size measurement. There’s the presence or absence of the wire, the padding, the decoration and the color (although we, I mean she, were only interested in white, proper size and comfortable.) There’s also variety to be found in the kind of material, cotton. various synthetics, but no wool or offerings from the green world such as hemp or bamboo. 

In stores where we found something suitable, she went into one of the dressing rooms. Often she would call out to for me for assistance. I was wise enough not to just barge back in those mysterious cubbies. I would tell the clerk the issue we were dealing with and then barge back there to help her. Even though there were a couple of close calls, nothing ever happened to embarrass anyone. It sort of reminded me of the time I unthinkingly entered an empty bathroom in a rush, which happened to be designated for women, and upon hearing voices of women entering the room, thought about telling them they were in the wrong room, then realized my mistake and shut up until they left and I could escape. Back to the theme in order to conclude this tale. 

We managed, despite sneer and raised brow, to get what my dear lady needed and wanted, and returned home. We laughed about the commotion we had caused, the looks and humphs we noticed. I especially became aware that some considered me to be of the rudest sort of blatant deviant, checking out bras for padding and cup size. Judge not for the whole story is not told in the appearance of a thing! 

We have since shared the story with others in the same circumstance we are in, husband as care partner and wife as recipient. We laughed, big, with each other. We all had skin in the game. One recounted his experiences of a similar sort, trying to dress his lovely wife in tights. You, dear reader, do the imagining. Space does not allow me to. But, “Is there anything funny about Alzheimer’s Disease?” It depends! But make sure you have skin in the game!

Blank the Idiot

By way of introduction, here is the Family Idiot. I want to write about the family idiot. You may already know him. Instances of his idiocy are legion, embarrassing and remarkable. While needing no introduction, he must be nevertheless, necessarily be further introduced. My intent is make him so familiar to you, you may even find space in your life, not much space, just some, for him. Read carefully, but empathetically. On occasion, he deserves it. So, his day started off well. Thousands of Utahns have visited the Romney Mine at the Utah Museum of Natural History, planted uncomfortably in the old George Thomas building, once a library, first building on the right on the President' Circle at the University of Utah. Beautiful new digs have been raised near Red Butte Gardens to reflect Utah's natural history and remarkable geology, reflected so movingly in the structure itself. The move is on. In discussions with the protagonist of this saga, it became apparent the Romney Mine would be neither moved nor replicated in the massive new edifice. It was time to put the mine to bed. Miles and Janice were both gone. None of their progeny were of the miner’s bent. So a day was designated to receive at the hands of Janaki the remaining collection of mining pieces, gathered by Miles, displayed by the museum and enjoyed by the public. Miles had collected them over his fifty plus years as a noted figure in western mining lore and activity. The items, with some difficulty, were packed in the back of the family idiot's car. Some wooden handles were well decayed. Most of the steel was encased in rust sarcophagi. The heaviest piece, a massive pneumatic drill and attached 25 foot hose, took six people to put in the car. Unfortunately, there were only two, Janaki and the idiot. Listen carefully. Here is a sample of his idiocy. He believed the two of them, one bowed by years and the other blessed with the figure and musculature of a late-twenties young lady, could heft the steel beast into the truck. Indeed they managed. The young lady strained. The age challenged idiot grunted. After 15 minutes of strain and groan, the drill and hosing lay uncomfortably in the truck. The idiot is still counting hernia nodules. The other items, rusted drill bits, lengtheners and miscellaneous mining tools, were later splayed across the floor of the idiot's garage, awaiting distribution to the surviving children of Miles and Janice who wanted a mining memento of their parent's professional lives. Turns out none of the other surviving progeny of Miles and Janice wanted any of this rusty old stuff. Rosanne decided to take a couple of pieces back to Las Vegas. Mike and Hannah wanted nothing. So, the idiot used the stuff to build some interesting yard art. Then Mike decided he would like the pneumatic drill. The Idiot told him it was the core of the yard art. Mike demurred sourly. The idiot then negotiated his way to the Chase N. Peterson Building on Campus to attend the monthly lunch of the Find Old University Men, men invited by President Peterson who were his vice presidents when he led the campus. These people like and respect one another and enjoy talking about current issues (What's up with the shenanigans of former President Young, now at Washington?), politics, religion, the fine arts, life as aging citizens, and so on. The idiot was able to participate, even hold his own, without exposing his shortcomings and deficiencies. Later in the day, the idiot, his wife and his sister decided it was time to let their hair down, a figure of speech lacking efficacy in this case. They enjoyed a wonderful repast at the Sampan, having ordered fresh and deep-fried spring rolls, Asian and Thai salads and a concoction of tofu, prepared in such a way as to remind the uninitiated of either essence of unborn whale, or perhaps, dolphin boogers. The one who ordered that, whose name cannot be spoken, did not finish it, not even close. The rest of the food was wonderful. Being sated, the trio, generously counting the idiot as a full time equivalent person, headed for the big movie screens on 33rd South and State Street to enjoy a highly recommended movie, The Big Year. They got there a little early so as to get a good seat selection. They needn't have hurried. Just 10 minutes before the feature, Movie Studio Number 2 was empty. But the seat selection was good. They chose three seats part way up the inclined seating terrace. Eventually, 3 other couples joined the idiot and his lady companions and seated themselves so as to not be in front of anyone nor behind anyone. MacArthur Genius recognition was not required to make these arrangements. It took but seconds. The noisy, silly previews began. Who in their right minds would ever watch this stuff? Even the idiot was easily dissuaded from attending any of the offerings. Ah, then the main event. It started slowly, telling the story of The Big Year, a competition in the birding community to spot the most individual birds of different species in a given year. After a slow start, it got really bad and never recovered. The idiot of course tried unsuccessfully to defend his choice. No dice. It was a terrible movie. They drove home, criticizing every aspect of the thing. When they got home, wife expressed a desire for a snack, maybe some cereal. The skim milk was so old, was lumpy, a greenish off-white, and exuded an odor redolent of aged, water-soaked drywall. The idiot volunteered to go to the local Fresh Market to redeem himself, only to discover he didn't have a wallet in his pocket. He searched in idiotic frenzy around the house and in the car without success and drove in fright back to the theater. Although no one was in the theater and a show was not screening, there was no sign of said wallet, which contained identifications, credit cards, $350, and miscellaneous health and reward cards. The idiot left in a profound depression. It became obvious after much review of the events of the evening, the only answer to the loss was that the wallet had slipped out of his vest side pocket as he squirmed and hid his face, not wanting to see the embarrassingly bad movie. What a loss! What an idiot! An usher obviously came in to clean, discovered the gold mine and pocketed the find, telling the manager that all was clean and the next movie could begin, poor pity the unsuspecting customers. Arriving home in a deep funk, the Idiot proceeded to contact those credit card companies still open for business to put a stop on expenditures. Why would they have used the credit cards by then? There was enough money to feed and fuel the thief for days. The idiot also listed automatic charges which would need changing when the new credit cards arrived. He stayed up most of the night, alternately berating his Idiocy and sorting through other actions, such as obtaining a driver's license and talking with financial advisors about protections from identity thieves. After 3 hours of restless sleep, he headed for the Motor Vehicle Department on 3rd west. There was already a line when he arrived, but the Idiot's Idiocy was just beginning to kick into the proverbial high gear. After a 15 minute wait for the doors to open, the Idiot marched obediently to the person responsible for parsing the supplicants to the proper clerk. Turns out the Idiot's clerk didn't work at this site. They don't do driver's licenses there. He had to go to 28th West and 47th South. Off went the idiot. His wait there was about 15 minutes, not bad, but it was already 9 AM. The return of Idiocy in the Idiots life! The rules had changed. He needed a passport and proof of his citizenship, such as a social security card. Off to home for idiot to retrieve said items. He retrieved them and rushed back to the proper office. Idiocy accelerated! When he got to the clerk, she looked at the documents and discovered the Idiot had brought his wife's passport, not his own. Fortunately, he and the clerk could still laugh. But, back home the idiot drove, and retrieved his own passport. Back to the proper office. When the IDIOT arrived, the line was now 1/2 hour long. He successfully negotiated that hurdle, found a seat and waited for his number to be called. It was No 150. The register beckoned No 134, not bad the Idiot thought. The next number called was 742. The next 10. The next 437 and the next 328. Each one took about 10 minutes. Two hours and 30 minutes later, 150 was called, randomly. The IDIOT approached the clerk hesitantly, knowing full well there would be a problem and he would have to head home again. The clerk examined the materials, asked for an eye test, declared all was in order, asked for $23, and sent the IDIOT on his way. The clerk even sympathized with the IDIOT's financial loss. The ordeal was over, except the pain of loss. But no. The pain was not over. The Idiot took a moment to look at his new driver's license photo. Who in the hell is that, said he, not recognizing the grotesque mask in the picture. He glanced at a mirror. There was some resemblance, but the Idiot hoped he would never have to use his driver's license as ID. It could be just about anybody. So you have met the idiot. There is an old saying from Pogo who said, We have met the enemy and he is us. You have met the IDIOT and the above is the rest of the story. Tis I, said I. Now why don’t I tell you something you didn’t already know?

A Thousand Thoughts, Metaphorically

Kathryn is at this moment dining with 4 cousins. They call themselves "The Jacobs Ladies." They are descendants of Emma Jacobs, or perhaps even one generation back from her, or maybe it was Sheraton Jacobs, the wonder grandfather born on the banks of the Sheraton River in Iowa in 1846. However these five women may be related, they are indeed and they convene once a month, approximately. One recently lost her husband to frontal temporal lobe dementia. Another lost hers to a plane crash. A third husband decided to open the closet door. A fourth still has a husband. And Kathryn is beset with Alzheimer's disease. When they convene, it is industrial strength convening. No sip of water, a genteel salad and a peck goodbye after a friendly hour of fluff. Not at all! This is the real thing. They have been known to listen and remember and giggle and remind for 5 hours, much to the consternation of the locale chosen for the monthly gathering. And that's where they are now. So perhaps it's a good time, a convenient time to update and remember. The changes in Kathryn seem now to occur almost daily. Short term memory selectively fails. That is, she remembers things of major impact such as the three hour discussion we had yesterday with a kind, competent, compassionate professor from BYU who had come to help us talk with a young man deeply troubled by his own sexual preferences. That discussion, Kathryn remembers well. On the other extreme, if we discuss two things for her to do, she often forgets the first, and sometimes in proceeding to do the second, she will be distracted and wander off to do something else and thereby also forget the 2nd item on the list. Each day when we rise is a guessing game for her as to what the day is and what we are going to do. It is difficult because she can't remember the first two events if I mention three. I am not yet skilled in handling this in the best way. I don't get angry or even perturbed. I just am not satisfied that my communications are as effective as they could be and should be. Kathryn has become increasingly obsessive about things. She left a shoe in the car of one of her friends who took her for an overnight stay to Bear Lake. She mentioned the missing shoe several times a day. She wanted to call Dearie, her friend, but would forget about it almost immediately. She has obsessed about the death of emory boards (we have hundreds now), the right kind of eyeliner (they are multiplying in the drawers), skirts (DI knows us by name and takes us immediately to the skirt department), watching special news shows on Friday (Fareed Zakaria or 60 minutes (neither of which have we ever wateched), how to meet the imagined expectations of our social worker at the Alzheimer's office, and so forth. Kathryn has a noticeable loss in her ability to think clearly and logically, For example, she cannot remember where she leaves things. But then she will look for them in the oddest places. She looked in her purse for the lost shoe. She has looked in a glasses case for a notebook. She has looked for her glasses in little boxes not big enough to hold them. We used to joke that Kathryn had her own organizational mantra, "A place for everything and everything in a place." She used to remember where those special places were. She no longer can, yet she thinks she can, and so puts things down "in a place" and it becomes a mad scramble to find them because there is no logical reason from them to be where we eventually find them. And the constancy of the loss hurts her. I wish I could take away that hurt and pain. I can't always do that. What is happening with our children is becoming a jumble. The most difficult for her has been her trying to keep track of where Adam and Whitley and their kids are in their journey. She just could not remember if they were still interviewing for the job in Seattle, or if they had accepted, or if they had bought a house, or if they had moved there yet. It still goes on to some extent. She talks to friends about our family and I amaze at how convoluted the communication is. Yet, what difference does it make? Most people don't pay that much attention to the status and lives of other folks' children, so there is really no point in trying to remove the twists and curls from Kathryn's communicated time line. It just doesn't make any difference. I think everyone in the family will remember the months devoted to trying to teach Kathryn the intricacies of the MP3 player. That was before we went to Belgium. I remember when Mom first went to Rowland Hall to teach. They gave her a Mac computer to use at home. She was the master of it quite quickly, at least for the kinds of things she needed to do. Less than 10 years later, the MP3 player became a major hurdle. It simply did not compute as far as she was concerned. It was impossible to connect the dots for her. Yet she kept asking and we all kept trying. Now, the situation is much more difficult. She can word process on the iPad if I set it up for her. Same with the iMac (desktop.) I set it up. She types. I file. I send. I store. I retrieve. I proofread (as best I can without hurting her feelings.) She can't do any of those things. She has great trouble with telephones, even though she has her own. She doesn't know when to talk, how to answer, and so on. It just plain hurts, folks. Yet she is still driven by the urge, the drive to learn and fend for herself. Truly remarkable. I can still see much of your Mom in there. Some things are gone as far as this life is concerned. Her love for us is not. Her drive to work hard is not. Her long term memories are not (whereas most of mine are!!) Her love of people is not. Her warmth and compassion are not. The ability to make sense of today is the problem and will continue to dissipate. I will say that I have spent most of my life trying to prove to her that I am almost good enough to have her. (If you don't know what I am talking about, go to the blog entitled "I Think I Have Made A Terrible Mistake." You'll know why.) This is my real chance and best opportunity

Shall We Dance, The Good Lady Said

Dance As Obsession

Kathryn made it clear to me very early in our relationship; she was, is and always will be a dancer. As a child, she relished her weekly ballet lessons. She danced in junior and high school, mostly on the stage as budding ballerina. She danced in high school, mostly ballroom cadences to the big band sounds of the time. While we were in Russia, she must have gone to see Swan Lake 5 times, each with a new visitor or friend. She has followed the current reality shows, “Dancing With the Stars” and “So You Think You Can Dance,” as much as time and prudence will allow.

Dance As Metaphor

Ours was a whirlwind courtship. We first met on a blind date, arranged by our already married friends, Lorin and Judy Pugh, who could not have suspected the immediacy of our attraction for one another. I think my feelings began shortly after her mother answered the door on the first date and Kathryn skipped happily into the room, total elapsed time from recognition to love measured in fractions of a second. She was a bit slower, yet both of us knew we had perhaps met our soul mate by the end of that first, marvelous date, spent snowshoeing with the Pughs. That was mid February 1965.

On April 1st of that year, she challenged me, saying, “If you kiss me again like that, I’m going to have to marry you.” I gladly accepted the challenge. Seconds afterwards, she asked if I were familiar with the movie, “The King and I” starring Yul Bryner and Deborah Kerr. I was, suspecting she was intending to say something about the tendency of my hair cut to evolve into a Yulian doo. Rather, she asked if I remembered the line Yul used when it was clear that they shared feelings and were attending a royal ball of some sort. I did not. Kathryn reminded me that he asked, profoundly, “Shall We Dance?”

To Kathryn, the question symbolized the covenant, eternal in nature, two people must be willing to make before proceeding to the alter. It must govern all their actions fthereafter. We talked long and late that night and over the coming few weeks, not because there was doubt. We were exploring and trying to understand the nature of the commitment. Neither of us could possibly know what awaited us as we surged ahead with life. We did know, however, we both were committed to the big Dance. It is now some decades later. Looking back, I realize the complexities and elegance of the dance we have performed so far, and am deeply pleased by it. Though not done perfectly, it has been rendered with deep love, commitment, openness, and joy. We will continue to dance our metaphor.

Dance as Entertainment

The Dance, Waltz, Foxtrot, Tango, Cha Cha, East Coast Swing, Triple Step, Nightclub Two Step, etc are ours, not that we do them particularly well. It’s just that we do them together. They are romantic. They are fun. They are good exercise. They are tools of sociability. We’ve danced together at a small club in Brighton when we were first courting. We’ve gone to Lagoon when there was a dance floor there. If Saltair and the Rainbow Rendezvous had survived, we would have danced there. We’ve danced at church parties, high school reunions, private parties, etc. Lately, we spend most of our dance time either at the Murray Arts Center on South State Street or at a Senior Center on 10th East between 2nd and 3rd South. There are live bands in both places. There is some overlap in the clientele so there are always familiar faces. We’ve become very well acquainted with many folks at the MAC, but especially Dave and Becky Farnsworth, with whom we trade stories about our and their travails. Olga and Ed, both professional dancers, have each tried to teach us steps. The memory bank at this age just is no longer capable of holding the instructions to muscles required to do new moves. We’ll just be satisfied with what we can do now.


Dance as Approach to Life

When the third year of our stay in Russia was coming to a close, I began to note some difficulties Kathryn was having in doing things she had previously done well. I thought it due to the fact we were both getting older. Between the time of our return in mid 2003 and our departure for Belgium in early Spring of 2009, there were other signs of cognitive disability, which I again took as signs of aging rather than illness.

The pressure of our situation in Belgium however greatly exacerbated the problems and we sought church and medical counsel. We were instructed to come home as quickly as possible. One week after returning, we had a diagnosis of early stage Alzheimer’s Disease. Though we were both totally ignorant of it, Kathryn had probably experienced the first signs of Alzheimer’s savage toll during our last year of service in Russia. The pressure in Belgium inflated the symptoms. As we got our arms around the diagnosis, we began sharing the news, first with family of course and then with close friends. In response, one couple sent us the following couplet:

Life is not about
Waiting for the storm to pass.
Rather, life is about
Learning to Dance in the Rain.

Once again, dance entered our life’s equation. The commitment made, “Shall we Dance,” had long been sealed. The last line of the storm refrain has become our mantra, our hallmark, our motto, our refuge. We shall dance by learning to dance in the rain. The theme has expressed itself in many ways, from volunteering at the Huntsman Cancer Institute and the Road Home, to becoming deeply involved in the local, state and national fight for recognition of the immensity of the Alzheimer’s Disease epidemic, now just breaking over us. On the other side of the coin, we are living life now to the fullest, dancing in whatever way we can, as often as we can, however, wherever and whenever we can.

Learning to Dance in the Rain involved us in one of the most beautiful and emotional experiences of our lives. We were in the midst of a 15 day odyssey down the Colorado River through the Grand Canyon. Tour West was our guide, supplying 10 persons to address every aspect of our trip. Joe and Lee Bennion had arranged the charter and found 18 folks willing and able to make the trip. One day, we hiked up a small, narrow canyon, whose stream fed the Colorado. We agreed to hike that sacred canyon in silence. We came to a wide spot in the draw, perhaps 12 feet wide by 60 or 70 feet long, at the bottom of towering canyon walls, perhaps 100's of feet above us. We were signaled to sit and take in the beauty and serenity of this place, holy and sacred to the Indians who had lived here. After being lost in our thoughts for perhaps 20 or 25 minutes, Katrina, one of the guides, a beautiful young woman with a powerful singing voice, began serenading us and the canyon. Our reverie deepened intensely as she sang. Soon, she announced a number she had written herself. It was about the thoughts of a lover, recalling the beautiful memories of a relationship now ended, I supposed through death, and how much she wished she or he could be with the cherished lover again. I was overcome as she sang, knowing that if Kathryn’s disease took the course of all Alzheimer’s cases, my lot would be the same as the absent lover Katrina was singing about. I began to weep, almost uncontrollably. Everyone knew it, but I could not stop. The song came to an end, and Katrina then invited Kathryn and me to dance a waltz, there in that canyon on a dance floor of pebbles and rocks weathered and eroded for 2 billion years into round, smooth stones. I thought I would collapse. How could she have known how much we love to dance? How could she have known that “Shall We Dance” was the theme of our lives? How could she have known that we were intent on learning how to dance in the rain? She played a slow waltz. We danced the best we could on that uneven floor, now holy to us, scraping one-two-three, one-two-three, one-two-three over and over again, awkwardly turning and swaying, stepping and pausing.



We both wept and smiled, knowing that there could be no better place to dance then than there, in that canyon, on that day, with those people, to that music. At the end, many of if not the entire company, wept together and shared a moment as one and in our individual odysseys that will never be forgotten, nor perhaps repeated. It may however just be repeated over and over and over in the minds of those who were there. One dear friend, Lee Ann Taylor even named the experience, "Our Three Hanky Hike." Bert Bunnell later offered that the event, which included all of us, may have constituted a signal to the troubled souls many believe inhabit that place at night that there is beauty, love and even healing for them in that place because of our last dance in Blacktail Canyon.. It is one of the most cherished moments of my life and gave perfect voice to our leitmotif, “Shall We Dance.”

All We Have Is Today

A huge part of the individual Alzheimer's experience, as least from the vantage point of a couple dealing with early onset of the disease, is the uncertainty of what lies ahead. Someone once said, "When you have seen one case of Alzheimer's Disease, you have seen one case of Alzheimer's Disease." Clearly the meaning is that all cases are different. A reading of individual stories and hearing experiences of friends, fellow recipients and care partners gives one the full panorama of possibilities. On the one hand, there is the well known member of our community who has been bedridden, incoherent. and totally dependent on others for years. He recognizes no one and says little that makes any sense. There is the story of a mother of a friend of ours who until her last moment was friendly, kind, talkative and interested in life although she had no idea of her family and children. They were all blank slates to her. There is the story of our neighbor who was diagnosed on one day and passed away of the disease a year later. There are too many stories of spouses who have of a sudden morphed from the kind and gentle mate to an uncontrollable, angry, and dangerous person, needing to be shut away from others for fear of harm or injury to himself or others. And there are those who find themselves in rest homes and care facilities, no longer able to care for themselves or recognize family or spouse, becoming romantically entangled with someone else. And last of all is the story of someone whose spouse is in a rest home. He visits her regularly but spends a lot of time at dances and other social events basically hustling companionship.

We see and hear about these stories all the time. As Kathryn is recognized on the streets, at the gym, at the grocery store or wherever, people feel free to come over to congratulate her for her strength, courage and openness and to share their stories with her or us. None have happy endings, but some are simply devastating. Here he stand on this side at the gate, enjoying life to the fullest, but also waiting for the train to pick us up for some unfamiliar, unknown destination. We talk often about the future. Kathryn sometimes obsesses about the it and, depending on my lifespan, whether or not I will marry. I keep reminding her that such a discussion is irrelevant. Then I buttress that irrelevancy by proclaiming in the most loving terms I can muster that I find that thought repugnant and outside the bounds of possibility. It is unthinkable.

Well, why do I write about this particular theme now. Alzheimer's is ever present in our lives. But this morning, after a difficult, strenuous exercise stint at the nearby Lions Recreation Center, skirting the bedlam below where children in four different games attempted to play basketball accompanied by the screams of family, friends, coaches and team mates, we went to the local Fresh Market to pick up a few items. After a long pause in our conversation and as we left the building, Kathryn glanced over to me and said, smilingly, "All we have is today." "No," I said. "All we have is today, our memories, and hope." And, I will add to that, Each Other!

What Santa Does After The Christmas Rush

We're in California, Pasadena to be specific. (Actually, that is no longer true. We were there. We've come home. But, try to imagine us there. The following was written while there. Got it?) We're participating in the annual Tournament of Roses Parade. Adam and Kathryn are two of the featured few, designated to ride on the float. The float is a joint project/product of the cooperative efforts of Pfizer Corporation and the National Alzheimer's Association. The float is called the boomer express, named to signal the nation concerning an oncoming tidal wave of the disease, powered largely by the baby boomers who are beginning to turn 65 this year. Given that Alzheimer's is an age related disease (the older you get, the more likely you are to become a recipient of the disease), we will see a huge increase in onset of the disease, projected to be around 15 million in the next couple of decades, requiring an accumulated expenditure by then of some $20 trillion dollars, should no cure or attenuating medication be found or developed. We don't have that kind of money.

So all of us involved in the ALZ cause (individuals, associations, corporations, etc.) are doing everything we can to the raise awareness, remove the stigma, pressure governments and corporations to act together, quickly and seriously, to address the topic in mass. The Boomer Express float is part of that effort. Kathryn and Adam will ride and wave, along with about 23 other folks. It has thus far been a very fun experience.

Last night, Thursday, we went to the location where 12 of the floats are in the final stages of construction and decoration. Everything except the frame on every float must be organic. They have developed special glues, tools, and rules to assure and regulate the process. It's hugely intricate. The Boomer Express is about 50 or 60 feet long, with structures rising to about 30 or 35 feet on top of it. It's an old railroad steam engine and passenger car. Because of the weather and age of the participants, most will ride inside the car. Each float is the beloved recipients of more than 20,000 volunteer hours to complete it. A year is required to design and produce the finished product. Themes for next year's parade are already being discussed and finalized.

This morning, Kathryn and I walked the parade route. By 8:30 am, spaces on the edge of Colorado Avenue were being claimed by intrepid parade watchers. They will sleep out tonight in what promises to be rather cold, cold weather. The street is a place on this day for car enthusiasts to show off their work, from racing vehicles to street rods to chopped body muscle cars to ancient, rare vehicles. We saw one, a white Humber, that I have never seen before, truly a classic.
The parade will be fun to watch. Adam and Kathryn will ride. Smith and I will watch from the grandstand. Whitley, Laine, and Rosie will be somewhere out on the parade route. A not to be missed experience.

So where does Santa Claus fit in all of this? Last night, as we walked around the construction area, looking at the various floats, we discovered what Santa Claus does after he's finished with distributing gifts to deserving boys and girls. We met him. He's a large man, not only rotund but tall, about 6 foot 3 inches. He wears the red cap rimmed with white fur and topped with a little bell. He indeed has a flowing white beard, white eyebrows and lashes, and snowy white hair. Last night, the hair was a little in disarray. However, no traditional Santa Suit. He wore work boots, besmirched Levi's and white t-shirt, spattered with paint, glitter, and all sorts of flower seeds, pieces of stems and leaves and other organics not familiar to us. We stopped him as tried to rush by us on some urgent errand. Who was he really? Santa, of course, was his reply. We asked if this is what he always did after the rush of toy deliveries. Yes. He said it was his way of relaxing and he's done it for countless years. He laughed in a familiar, jolly sort of way, excused himself, and sauntered off down the street, happily whistling "Jingle Bells." Adam and Whitley and Kathryn and I and our guard traded looks of astonishment. So that is what he does. We had no idea. Later, I found out one of the hazards of his work. I headed for one of the portapotties, dispersed by the thousands around the grounds. I found one apparently unoccupied and swung open the door. There was santa again, standing straignt and tall, about to leave the little plastic cabin. I excused myself, but before I could depart, he exclaimed as he disappeared out of sight, that he was just removing glue from his beard, a common malady in this kind of work. So, that's what he does after Christmas. I have picture proof of same. I just hadn't remembered he wore glasses. Maybe it's only for close up work. Happy New Year!!!

Ruminations on a Quiet Tuesday

Contrary to a Tuesday morning 69 years ago today, which I certainly do not remember, but which has nevertheless influenced my life greatly, this morning for us is a gentle and warm day of thought, pursuit of individual interests, and time spent together at home and perhaps on a neighborhood jaunt. While Kathryn sews, I write.

The changes imposed on the world by Pearl Harbor

Sixty nine years ago!! The beginning of World War II, in a formal way, for the United States. We had been involved before this, promoting ourselves as democracy's arsenal and underwriting the valiant efforts of the British. The attacks on Pearl Harbor sucked us into the conflict in ways unimagined by the Japanese and by the German's who declared war on us as soon as they heard the news of the Japanese infamy. While thought to be a nation of indulged, selfish, cowardly materialists, we proved to be a formidable foe from the outset. Our young women and men surged to military recruiting offices to respond to the call and to retaliate. Our business might united, partially under the leadership of my Uncle George, to become a design and construction colossus, turning out massive stockpiles of war materiel for every ally, even the Russians. Even though the viciousness of the conflict over the next four years, led to revenge atrocities performed by our military, especially in the Pacific, we largely came through this gargantuan conflict with our values intact. We had raised a standard of service, help, compassion, and freedom envied and sought after by almost all of the modern cultures of the world. The Marshall Plan basically resurrected Germany from the potential of decades-long struggles with poverty, famine, and desolation. We governed Japan back to a competitive, humane, free society. Russia, on the other hand, under the "leadership" of Stalin, influenced the communist leaning world to isolate themselves in the long, bitter cold war, which though thought to be officially over, still resonates to some degree in a few countries, such as China, North Korea, Russia itself, Cuba, and Venezuela.

The evolution of the role of America and the Military

When Eisenhower left office after an interesting, productive presidency, he, whose background was military, warned us to avoid the tentacles of the coming military/industrial complex. He coined the term to name that growing relationship where arms manufacturers enticed military and political leaders to purchase the latest, greatest military technology to once and for all put the power to end all wars in the hands of US leadership. Since the late fifties, there has always been the touting and acquisition of the latest new weapon. A book titled "Grunts" exposes the deceit and costs associated with this path, and the expense to the country of following it, not just in dollars, but in the destruction of the bodies and souls or our front line military. Today, we live in a country where our military budget exceeds that of, as some claim, all other nations combined. Our congress and senate demand the latest military hardware, offered by the arms manufacturers as that weapon which will finally replace the front line soldier and put an end to conflict and slaughter. The threat of nuclear annihilation has not stopped the front line slaughter. The newest aircraft technology, including Stealth aircraft, has not. Drones have not, nor has satellite imagery, nor any other created weapon of the past 60 years. Yet, we keep spending. Our current financial crisis and resulting political warfare, in which comity and compromise have been ground into the dust of politics at its worst, seem unable to do anything but agree on the need for an outrageous, unjustified, and continuously unsuccessful purchase of the wares of military hardware suppliers. And what happens to the front line soldier? These men and women, called on to invade foreign countries, called on to route the "enemy" in street to street, house to house, battles, are undersupplied, under protected, under treated if wounded, and often ridiculed if the real wounds are not physical but psychological. I cite as examples in the Iraq war the lack of body armor for the troops, the lack of armor and protection for the humvee's, the Walter Reed Hospital debacle, and the sluggishness of the Dept. of Veterans Affairs to meet the needs of those who coming home, wholly or partially intact. And yet our politicians continue to buy the latest gadgets and have no intention of reducing the military budget. Frankly, our foes are winning. They entice us to fight in their homelands. We have no idea where the enemy are or who they are. They kill us at will. And we spend our nations financial and human resources at a rate leading directly to moral and economic disaster. The future is indeed bleak!

And Now?

Now that I have that off my chest, let me return to the topic of the blog, Ruminations on a Quiet Thursday. It seems that we have been running constantly for the last several months to play the Alzheimer's symphony. We speak at meetings for the Elderly. We speak at meetings of those who provide services to the elderly. We appear on TV. We have radio interviews. We review films. We meet in Support Groups, We help Kathryn's National Committee meet their objectives. We have our own support group of Early Stage Recipients and Care Partners. We talk with friends. We read about ALZ. We exercise and eat the way we do because those regimens are thought to slow the advance or maybe even encourage the building of new neural pathways. We listen to pitches about supplements thought to be helpful. We examine our personal papers and investments in preparation for what may be coming, as best as we can predict it.

But, of a sudden, there is a lull. We looked at today's calendar. We looked at the calendar for the rest of the week and month. We see exercise. We see Utah Watercolor Society. We see dancing. We see a few social gatherings. But, for the rest of the month, there is literally nothing on the calendar, other that 2 support groups, until the end of the month when we go to California for support of the Alzheimer's float in the Tournament of Roses Parade. We see time to paint, to write, to dance, to walk, to relate, to think. And we welcome the new visitor, one we shall call "calm and pleasant pursuits." Hence this Blog.

What Has Been Done?

For the record, I would just like to record what we have been doing. Ted Capener worked with us to prepare us to be interviewed on his program, Utah Conversations. That will air this coming Sunday, on Channel 7, PBS, at 5:30 pm. We participated in and talked at a Utah County gathering of seniors, encouraging them to become more aware of the coming Alzheimer's tsunami, and about how we have responded to our own reception of the disease primarily with openness. Kathryn participated in the Washington DC announcement of the Maria Shriver study on Women's and Alzheimer;s, by giving the opening remarks at the conference organized to discuss the book on the day of its announcement. We have been interviewed by Jennifer Napier-Pearce for a story on KUER about Alzheimer's. This was aired four times on Sunday, 12/5 and Monday, 12/6. Wonderful comments. Last night, we spoke on a panel reviewing a film we had just seen called "I Remember Better When I Paint." And we, primarily Kathryn, of course, was the subject of a wonderful article and terrible picture in the Desert News, called "Life After Diagnosis," authored by our dear friend, Elaine Jarvik.

What's Next?

Not much. Ted Capener's program shows Sunday. We go to support group tomorrow. We go to California on the 26th. Kathryn's YUPO paintings may be featured on the cover of the catalog for next year's Gala. There may be an art show of the work of Alzheimer's Artists at the Peter Moore Gallery. We will have once a month phone calls from and with the Early Stage Advisory Group. We will go to Washington DC next May, seeing the Lloyd's either on the way or in DC. Nothing else specific on the agenda. So, what's next, for the most part? Living, loving, reading, writing, painting, walking, enjoying and learning to dance in the rain. There is much of life after diagnosis.