Living with Alzheimer’s

Report 6: Fun With Alzheimer’s

Yesterday was one of the most enjoyable days I can remember.  In fact, I barely slept last night out of sheer joy. This even though there has been no slowing in the rate of my decline since the last time I wrote one of these reports, and even though I was completely worn out from a recent two-week trip to the East coast. It was, simply put, a very, very, wonderful day.

From early afternoon until deep into the night our home was the setting for the largest party we have ever hosted—or even attended, for that matter.  Under four big canopies spaced across the lawn, and on our big lanai there were tables laden with food, coolers full of iced drinks, and bouquets of orchids and roses.  The smell of barbequing arising from several different grills, all well attended by interested parties, complemented the excited laughter of people dancing on the grass to the Palauan songs, both recent hits and Golden Oldies, which Julian sang as he accompanied himself on his keyboard.

All this was in celebration of Bobby’s 80th birthday, a celebration that brought together about 75 people (estimates have run from 50 to 100), not all of whom knew each other, but all of whom seemed to be having a good time.

We had been of two minds about that trip back East. Neither of us is as strong as we were just a few years ago. My stamina and physical strength would be taxed by this and Bobby, who now requires oxygen, travels with heavy batteries and a portable compressor.  After all, our biweekly trips from Hilo to Honolulu and back for my Leqembi infusion can leave us exhausted. But. . .We decided to roll the dice and take advantage of this chance to see, in all likelihood for the last time, beloved East coast friends and family.

The genesis of the trip was an invitation to a surprise birthday party for one of our dearest friends.  In fact, she and her husband are more like our siblings than just friends. So, we knew we would go if at all possible.  Then the issue was settled for us when we learned that our son and his family would be coming down from Canada for this event.

Our flight East was scheduled on an infusion day and our return to Hawaii the day before the next one, thus giving us a good two weeks to spend time with friends and family, from Maine to Virginia, finishing up at that surprise birthday party.  All packed up and ready to go, we boarded our flight in Hilo and set off for Honolulu and the infusion center.  But when we arrived, we found ourselves confronting a possible disruption to our carefully planned schedule.   

Early that morning I had mentioned to Bobby that my right eye was acting a little odd. Things at a distance seemed blurry when I covered my left eye.  Over the next hour or two I think I must have gotten accustomed to this, because when she mentioned this to the nurses who were prepping me for the infusion, it came as something of a surprise.  It was still there though, and the nurses decided my neurologist needed to hear about this before going ahead with the Leqembi.  He was in his car at the time, but they were able to reach him on his phone. After a roadside consultation, Bobby and I were rushed to the emergency room in wheelchairs pushed by the infusion nurses.  Any anomaly that might have indicated a stroke, or anything associated with it, needed to be understood before I could be infused.  The best and fastest way to do this was to get to the ER and its MRI. It turned out that the emergency was not in my eye, but in our schedule.  The departure of our overnight flight to Boston was drawing ever closer with each minute that passed. Everyone involved took that reality very seriously, and I was in and out of the ER in record time. There was no sign of a stroke, and Uber got us to the airport just as the plane was loading. 

Oh yes, after we returned, I saw our ophthalmologist and she soon found that the problem in my right eye was caused by a film which had formed over the lens that had been inserted years ago when I had a cataract removed.   This was the first I had heard of such a problem.  She said that it was easily fixed by having the lens laser scraped.  As I write this I have yet to undergo that scraping.  I have an appointment next month and I will keep it, but I can’t help being a little nervous, even though I have been assured that it is painless and very quickly done. If there was one thing that I learned as a kid, it was “do not put anything in your eye.”

Our trip to the East coast was exhausting but also deeply rewarding.

The surprise birthday party was a huge success.  For me, the big surprise was that it actually was a surprise. This was a very complex event, planned and executed by her husband and two daughters.  I have no idea how many people kept the secret for the month or two leading up to it.  But I do know that she had no idea what was waiting for her when she opened the door to the restaurant.  I can still see the stunned look on her face when she saw us and many other people, rising to their feet in the darkened room to greet her. 

So here I am, writing about another birthday party.  At which I had a very good time, perhaps not in spite of Alzheimer’s but, at least in part, because of it.  It was no surprise that I could not remember the names of many of the people who came to our table to say hello.  Most, but not all, I recognized as someone I knew and liked, and even those I didn’t recognize seemed glad to see me, but I could name only one or two.  I am used to this by now, and I am pretty sure most, if not all, of them knew that I have a dementia, because they provided their names as we hugged or shook hands.

As the evening progressed our two small grandchildren, along with their new friends, our host’s two small grandchildren, appropriated the lower reaches of the room, especially the area underneath the tables and chairs.  Their new playground gave them plenty of space in which to create some pretty rowdy games. This seemed to be ok with all the adults, probably because many of them were also grandparents.  But at one point things might have gone south if I had been more my old self.

While trying to have a conversation with the other three people at our table I was overcome by a flurry of stickers the kids began plastering to my face and neck and hands.  They started rather tentatively but when I didn’t react they fell to work with gusto.  I ended up with layers of stickers stuck onto each other, covering my whole face, including eyes, nose, and mouth. Once they had expended all their ammunition they fled, giggling.  Of course, the other people at the table were highly amused and so was I.  But it was a bit puzzling that I had been so passive.  I had done nothing to stop them, let alone reprimand them for doing something which, had I done at their age, would certainly would have been brought to a halt by some adult.  And if it had happened to me at an earlier time in my adult life, I don’t think I would have put up with it without at least trying to stop them after the first two or three stickers were applied.  As I thought about this later it seemed to me that somehow ALZ was changing me in ways that I had not expected. I won’t say that dementia made it fun to be outfitted with a mask of stickers, but I do think it made it very easy to bear.

Bobby here: Alzheimer’s is very strange; or perhaps its strangeness comes out of the person who is carrying it around in their brain.  I agree with Peter that years ago, he would not have passively been stickered.  However, I can testify that he has become a perfectionist in many things.  This is particularly noticeable in his writing, be it something like this report or a short email.  All must be correct and I, who used to be a perfectionist in many things, am quite happy to drop that and say, OK, that’s fine.  Done.  Is this because of his underlying personality and character from before?  Or is it what happens randomly when the amyloid and tau come and go in his brain? 

That party happened toward the end of our trip East. The next day we said goodbye to our son and his family, visited our twin nieces, and packed.  We flew out of Dulles the following day, after having one last visit with an old friend. The trip home was made difficult by our exhaustion but happened with no incident.

Once I got back on my feet, Tintin and I set to work organizing things for the party we were organizing for Bobby.  We made a good team.  I was full of ideas which she could either accept or reject.  She had other ideas, usually much more feasible, that I was happy to go along with.  We wanted it to be big, with as many of our friends and family as possible.  Having lived on the Hamakua coast of the Big Island for 15 years, we have come to be very fond of quite a few of the people here.  We also have friends on Oahu.  Tintin, who in 2013 came to stay with us to go to college, has a big local network and Julian, who came a few years ago, has relatives living just down the road. Our motive for going all out was our wish to celebrate the person who keeps our small ship sailing so happily along.  Of course, inviting so many people meant it was going to be a lot of work.  But, in our enthusiasm, that didn’t matter.  It also meant that this was going to be an outdoor event.  Somehow, the fact that we live on the (very) rainy side of this island did not enter into our decision making.  

We had set a date and sent out a few invitations (beautifully designed by Tintin) before Bobby and I left for the East.  Now, in the two weeks remaining before the big day, we pulled out all the stops: putting out the word to all our friends and relatives in the State of Hawaii. Naturally, every effort was made to guard against my failing memory.  So, for example, I created an elaborate spreadsheet to track who was coming. This worked moderately well, but it wasn’t perfect. In the days that followed the party, we realized there were a few people who I thought were invited but apparently were not since their names were not on that spreadsheet. At this point in my life I am not surprised by this and remain thankful it was my only screwup.

This was to be by far the biggest party we have ever had here, but it was far from the only one.  For years we had co-hosted a big New Year’s Day party with our friend from across the road, the late Brent Gallagher, but no longer. We also have had parties for Tintin and Julian.  His was the most recent: almost an all-night affair.  Bobby and I abandoned it early, but not until Tintin and Julian had gotten me to explain to their fellow Palauans how I came to be involved with their country. 

Then the party for Bobby’s birthday happened.  It was great.  The food and music were wonderful, and Bobby was welcomed into her 8th decade with a well-deserved celebration.  Tintin had fixed up a remote microphone, which she used to broadcast a blessing before we ate.  Unfortunately, our dog George, inspired by my stentorian barking voice, decided that folks would rather hear him bark at a stentorian level and since he was standing right next to Tintin, she was a bit unnerved by all of this and the blessing went unheard.  Before then, though, I had a turn at the mike and barked out some words in as close to the stentorian voice of one of those great WWII correspondents as I could manage.  Here, lightly edited, is what I said, or rather barked out:

It is May 1945: The last great battle of World War II is raging on Okinawa.  A young American sailor stationed in the Philippines is wondering if his baby has been born yet.  And then on the 24th of May, in Chicago’s St. Luke’s Hospital on the shores of Lake Michigan, Barbara Derry Webster arrived! AND THIS WORLD BECAME A MUCH BETTER PLACE!

About 700 miles east, in Rome NY in the Mohawk Valley, two-year-old Peter Weston Black suddenly became aware that it was his destiny to find a certain someone. But who?  And how?

Forward 32 years to July 1977: George Mason University, Fairfax, Virginia.  PWB, now with a PhD in Anthropology, starts a new job at this new University.  Summer school is in session, classes are small, most of his students seem to be less than interested. Still, he is lucky to have the work to pay the bills through the summer. 

After a day or two it becomes clear that one student is vastly different: smart, funny, interested; a grown up, a fellow smoker and a good conversationalist, and, not a lot younger than her professor. Like no student he had ever taught before. Yes, this is when the two finally meet. 

However, lightning does not immediately strike. Instead, a friendship arises.

She is at Mason to finish her undergraduate degree, having dropped out of college 12 years ago on a matter of principle. Leaving New England for New York City she found work as a secretary in a Wall Street law firm, only to rise rapidly to become the first paralegal on the street while taking several courses at NYU.  Later she moved to the DC area where she worked for one of Washington’s great labor economists, while at the same time pursuing her interest in the hospice movement.  This led to a trip to London where the movement has its roots.

Time passes: she finishes her degree. Even though he had given her a B on one of her papers, they are still friends.

Then multiple sclerosis attacks her body.  To obtain medical insurance she takes a job in a small government agency that helps to regulate the financial system and begins a 23-year career as a civil servant. On her own initiative she reaches out to the agency’s staff in what would later be called a Diversity, Equity, and Inclusion program.  She also helped to shut down more than a few predatory criminal enterprises.

She writes a very well received book about M.S., which he reads in draft.

They continue to see each other once in a while, as friends do. He comes to see her strength in the face of hardship and pain, never losing her balance, never succumbing to self-pity, always ready to pick herself up and to move forward.  No cruelty, no greed, but a gentleness and deep respect for herself and for others—with the exceptions of certain blowhards, charlatans, criminals, and politicians.

At long last, on an evening in 1983, they look into each other’s eyes, and suddenly he knows, and she knows this truth: They have found the person they are meant to be with.

They married nine years later. 

WHY WAIT SO LONG?  THAT’S ANOTHER STORY.

But I will say that we celebrated our 20th anniversary in Palau where one evening we renewed our vows on Eang’s beach.  A “re-wedding,” people called it and so it was.  Our daughter Soty, Tintin’s older sister, made a wonderful Peeps cake and we were surrounded by many friends from near and far.   A beautiful evening under the stars, with the sound of the waves, and so much music and so many hugs and smiles. A very precious memory.

So now I’ve had my say. Except for this one last and perhaps most important reason we still are together.  She always laughs at my jokes. Including this one.

 I am happy to say that hosting a huge party is far from the only way I have a great time these days.  Even though Alz is diminishing me by the day, I can honestly say that I am enjoying myself in one way or another on almost every one of those same days.  Somehow, I seem to have just put aside the darker side of my current reality.  And recently I have discovered a way to use Alzheimer’s to have a very good time simply by dialing the phone.

There were seven other people in my immediate family.  Sadly, over the years that number has gotten smaller and smaller until now there are only the three of us: myself and two of my younger siblings. Sadly, one has full blown Alz and the other is almost certainly coping with some form of cognitive impairment. Even more sadly, both live thousands of miles from here, so we haven’t seen each other since last year. Luckily, long distance calling is now pain-free, so at least we can talk without going bankrupt.  So, I call l them quite often.

Up until a couple of days ago, our conversations were rather stilted.  They were happy enough to hear about what was going on here and could be counted on to offer a few comments as I bemoaned our national politics (our dad had a brief career in local politics and we grew up in a home where politics, local and national, were much discussed). But a sustained conversation was quite rare. One would have a hard time putting thoughts into words and seemed to have very few retrievable memories for quite a long stretch of their life. The other was talkative enough but for some reason we rarely hit on a topic that could get us really excited.   Now we have found a topic which totally interests the three of us and about which each has a lot to say. I am definitely not talking about Alzheimer’s disease here. Instead, it is our common heritage.

We grew up together and we all still have vivid memories from our childhood. Since there are several years between each us, our childhood memories do not totally overlap and the ones that do are memories made at significantly different ages.  I have several that predate their appearance on the scene, and they have some of events which occurred when I was no longer living at home.

Yesterday I called them both. As soon as the conversation lagged, I said that I had just realized that there are three stories about our father that they probably hadn’t heard because they were so young when they happened. This news was greeted with great interest. I told these three anecdotes at some length and with more than a few flourishes. With lots of excited laughter each call went on for quite a while, with one person after another bringing up a family story, only some of which I already knew. Both of them said that we should do this again soon. I am looking forward to dialing them up in a day or two because those calls were just so much fun!

It’s been almost more than two months since I started to write this, and I need to end it soon.  Bobby has been working on our new website for almost as long and she is almost done. She even has a link ready for this report.

Before I close I am glad to tell you that earlier this week my right eye was lasered and it is now as good as new. It was far from a high stress experience, and I am very happy I decided to do it. On a less positive note though, I should also tell you that since my last report I have definitely become more prone to foul ups and errors, that my walk is less confident, and that my memory, agility, and general competence are all failing in one way or another. You get the picture, I guess.

Of course, since my 83 birthday is just a few days away, I really do not have grounds for complaint.  And, despite occasional very dark and fearful late night moments, I really do not have any at all.  I know and feel that I am lucky to be alive and as healthy as I am, living a life I could only have dreamed of when I was younger.  One wonderful moment occurred recently when Julian, Tintin, Bobby, and I played trilingual Scrabble.  Tobian, Palauan, English—words from any of those languages were accepted and knowing their meaning was no prerequisite.  What followed was an hour or so of laughter and great jokes.

Speaking of dreams—were we? My brain continues to generate amazing dreams.  The latest is not exactly X-rated, but it’s close.  It seems that either big pharma or some other bad actor began marketing an innocuous looking small white pill that, when taken with a glass of water, immediately induced a state of intense sexual arousal. The consequences of this scientific breakthrough were far from good. Demand soared, regulations failed (the regulators couldn’t resist taking them) and chaos overwhelmed everything.

Yesterday was Tintin’s birthday.  The four of us went to one of Hilo’s nicest restaurants, one that looks out over Hilo Bay, for her birthday dinner.  In its own, relaxed and quiet way, this was also a very special celebration.  We first met this amazing young woman in Palau when she was a very young girl (the youngest person in her family). She eventually came to live with us to go to college and then, after graduating and moving to Texas, returned to stay with us because she knew that we would be needing her help to stay in our home.

Bobby here: Peter and I do talk often about the future and how we will manage. He worries a lot.  I tend to be relatively sanguine about this because in my mind one cannot know such a thing in all its complexities until it happens.  This does not mean that I don’t spend time worrying about the future.  I do.  And as Peter fails, and I try to pick up more of what he needs, I often blanch at any thought of the future. I do think that for us all the talking we do about Alzheimer’s prepares us in some small part for that future.  Just lately, his mood has darkened and, of course, there is no way to mitigate that.  Such an uncertain future we face; but everyone, whether or not they recognize it, faces an uncertain future. We are lucky in our knowledge of a good part of what the future portends for us. 

Thanks for reading this.  Since you have gotten this far perhaps you would like to join Team Honohina. You can register for the Walk to End Alzheimer’s on September 20 in Hilo and join our Team Honohina all without donating to the Alzheimer’s Association. 

 However, it is a fundraising event so feel free to contribute in our names.

Peter’s page is at: https://act.alz.org/goto/PeterBlack
Barbara’s page is at: https://act.alz.org/goto/BarbaraBlack
Team Honohina is at https://act.alz.org/goto/TeamHonohina

Peter Black, Honohina, 2025           Return to Home