Uncle

On the way through Arizona Friday, we stopped in Scottsdale so Dad could see his one and only brother, Phil.

Uncle Philip’s Alzheimer’s is much further progressed than my father’s. After much struggle, the family has placed him at the Silverado, a nursing home for those with memory issues. Phil was placed there just two weeks ago.

Located in Scottsdale, the Silverado is a pleasant place, and not like the nursing homes I remember. The furniture and the wallpaper are all more reminiscent of a comfortably nice hotel. There is no acrid smell of hospital and incontinence. But the characters are the same: the slack jaw gapes, the sunken and sallow faces, the quiet torpor of the empty headed, the infirm and enfeebled, their brains like so much pudding. And the staff that speaks in that unmistakable slow enunciated and somehow condescending tone that we affect with 2 year-olds and 92 year-olds. “NOW, RUTH, WOULDN’T YOU LIKE SOME ICE CREAM? THERE YOU GO. NO, RUTH, THAT’S JOHANNA’S ICE CREAM YOUR ICE CREAM IS RIGHT HERE. COME SIT OVER HERE AND WATCH THE TELEVISION, YOUR FAVORITE SHOW IS ON, THE ONE WITH ALL THE ANIMALS. “

Aunt Gay met us there. We wandered about for a bit until we found Phil wandering about the halls.

He is a tall and animated soul, huge eyes, huge mouth, and was afire at seeing Dad, rushing at him arms flailing.
“Look who’s here.”
“who?
“Darrell”
“Darrell? God you little bastard!!”
He threw some fake punches, he embraced my Dad, he gestured and grimaced.… He was very happy with a great wide toothy grin, a shuffling gait, a wild-eyed agitation and happiness.

And clearly not the man we all knew, the smooth talking, quick-witted and commanding presence of Philip.

Dad immediately started in with stories of the long past. Dad had been working himself up with expectations of reliving the conversations of the past with his Brother. Phil and Dad would talk once or perhaps twice a year, usually a long phone call recounting recent conquests and accomplishments, and then reliving old stories of feats of their youth.

It had likely been more than a year since they had spoken. And Dad was really hoping to awaken Phil’s mind with those same stories. As we drove that morning from Tucson to Scottsdale, Dad was sitting in the passenger seat and I could see him mouthing words, rehearsing the memories and stories.

But Phil is almost completely gone. Yes, he clearly remembered the names, had big reactions to the name of his track coach Payton Jordan, and the infamous Cousin James “a wild sonovabitch”, “man was crazy!!” But Phil was having trouble finishing sentences, often replacing lost words with the babbling of the mouth: “They really had a great- a great- bleybleybleybleybleybleybley” A tongue-wagging lip-burbling vocalization finished his thoughts when he couldn’t grab the words.

That is where Phil is now. 2 or 3 years old. He recognized his wife, his brother, his daughter. He has flashes of biting wit, this example being typical we were told: His eyes are closed, his head downcast, and Elaine, my cousin just arrived from New York, is recounting her time and eventual escape from the world of hedge fund analysis. She saying that the manager was taking all the wrong positions… .more on biotech… more on gen-tech…
Phil pipes loudly… “OH… he’s a MORON!”

We spent almost 5 hours sitting around a table out in the courtyard. We fell into the natural dyads, Dad and his Brother, Mom and Gay, myself and Elaine. Dad was to comment several times after that he had to keep reminding himself that was his brother, that it was not his brother, neither did it look like or act like the man in command of life he knew.

It became time to go, Dad signaling that we needed to get on the road. We walked with Phil and Gay and Elaine out the RV.

In the moments of his saying goodbye likely for the very last time, Dad came to me, and with my arm around him, he laid into me about taking over the driving, how he was the one on the Fire Department they had train guys to drive… he said, gesturing at me with pointed finger: “Kiddo, I know more about driving than you ever will.” I admitted that was true. He laid into me about how he had trained many a man how to drive bigger trucks than this, and he was “not crazy even if your mother thinks so.”
“Do you want to drive us out of Phoenix?” I offered. A pause. “No, no, I am a bit shaken from all of this.” His brother was still hovering in Gay’s arms just a yard away, swaying in the breeze of his nearly empty skull.

He was not yelling, just forceful, and saying these quick few sentences as the rest of the crowd, Mom, Elaine, Gay, Phil gathered and exchanged embraces. But it was out of character and was surely borne out of the emotional meeting (and I hope not my squirrelly driving). Early in the meeting, Dad actually smacked the table to quiet the gathering “HEY, this is about MY BROTHER…” This is so out of character. Smacking the table and raising his voice. The last time I saw him upset like that it was 1972. He never yelled, was always gentle.

As we headed down the road, he was weepy, wet eyed, emotional. He sat in the back with Mom. I drove through the traffic of Phoenix as my vision blurred with tears.

Dad: “it just shocked me” “today was tough for me” “”today was emotional for me” “I feel like someone came up and ate my brother” “I wasn’t expecting this” “That was not my brother”

These phrases have kept on, even now at 10pm, some 6 hours later. He repeats the stories that he was rehearsing about Phil, he tells those things he was always proud of, he returns again to how shocking it was to see that his brother was already gone. That he should have come earlier. That something had taken his brother away. “Something came and ate my brother.”

A monster had been feeding on Philip’s mind, its brain-lust insatiable. The monster had almost finished his repast, and is looking forward to desert. The medulla’s final functions of swallowing and breathing will be its tiramisu and brandy.

And Dad’s monster, which he calls Mad Cow, is fully tucked into its meal, having finished the soup and fish course. The main course of father’s mind is laid upon the table. His personality is still there, cooling on the plate. His infinite patience, his gentleness, his silly humor and bad puns, his deep cherishing love of his wife. These are here, but so much is gone. His confidence, his sense of direction, his memory for events of the day. Instead there is fear, confusion, doubt, and resignation.

Tears stream down my face, sitting here at the booth of the RV just past dawn. The younger brother will go the way of the older brother. My father is disappearing.

Saturday is our last day on the road and some 300 miles across the base of California and to home.

Driving rules

I have been doing a fair amount of the driving. When Dad drives, Mom has to navigate. When they were alone, it had come to be the only working arrangement. Mom can’t drive because Dad isn’t up to navigating. He has always been a map fuddler, a double checker, and a doubter of directions or his own hunches about where the map and the world met. He never really believed a sign that said “Hwy 10 N Left Lane 1mi.” He could comment at such a sign “They probably aren’t talking about the same Hwy 10.” But he was a famously good navigator on vacations and at the Fire Department, maybe because of his essential doubt and inquisitiveness.
But add to that doubt his increasing inability to remember from 15 minutes to the next…
“I don’t know where we are going.”
I tell him.
And in another 15 minutes: “I have no idea where we are.”
I try to reassure him by telling him the itinerary for the day. Or I just try to ease the anxiety. He feels that sitting shotgun with a map in his hand, that something needs to be done. “That’s okay Dad, feel free to look at the map, but I know just where we are and where we are going. Enjoy the scenery” Oh. He is certainly deflated by this, by the small and large detours we have taken around his participation.

He has now stopped asking.

And we have started talking through his past, his childhood, his life in the Fire Department.


The GPS is both a boon and a boondoggle. Its good as an outside authority to be relied on, allowing Dad (and the rest of the crew) to relax and stop cross referencing the 13 sources of map info: my phone, my computer, 3 atlases, 2 or three RV guides with directions to parks, and the oft-discounted actual road signs. “I-10N”. What does that mean? Is that the WAY to I-10 or are we on it now?

And S.H.E., the voice of GPS, is very self assured. SHE becomes strident when you disregard her directives. SHE is always taking the “business route” and avoiding straight shots to interstate onramps. Once you ignore her, every intersection we approach she pipes up “Turn right at Hibbard ST” Turn RIGHT at HIBBART ST. Then take another RIGHT.” Always trying to get me to turn around. I get a little giddy ignoring her increasingly worried and insistent requests for me to change my ways.

This is a boondoggle, as it upsets the crew. They are aware of and have experienced her dalliances, but my mutiny against the navigator runs deep. I only use her as one thought about what the world is, SHE is but one interpretation among the 10 or twelve. I appreciate her thoughts, but until I can uncover her underlying desires, I can not act solely on her admonitions. It would be like voting based on the suggested ballot of a newspaper without knowing its editorial stance. Or reading a scientific report funded by “The Responsible Forest Stewardship Council” without knowing the bona fides of the members of that council. Corporate Fiber Industry Conglomerates? Or local conservation groups?

Regardless of my rebelliousness, I have become driver. Mom gets to crochet, Dad naps and has his intermittent stomach upsets. And I get to drive “the rig”. I think will borrow “the rig” later this summer and drive it somewhere. But bring bikes and backpacks along. Leave the poodle at home. I will smile broadly both inside and out while refering to "my rig." As in: "I was really ready to get off and I had my junk ready, but my rig was broken. I tried to borrow my buddies' rig, but nothing doing." Wayne and Marge would appreciate the sentiment, and could relate.

Dark and Light. More.

White Fence National Monument.

When I discovered a way to go from Carlsbad up and over and down and go to White Sands National Monument, I was, well, "excited." We were all "excited" to avoid driving through El Paso, more than we were thrilled about white sand, no matter how monumental. I am of the prejudicial opinion that if Modesto is the armpit, El Paso is the unwashed groin of America, rubbing itself all up against Mexico at about 4 am, having crawled into bed stinking of tequila and cigarettes, groping weakly, then belching and spitting up, and immediately passing out as the rays of the bitch of the new day pierce the thin greasy curtains of the Sleepy Inn. Mexico gets up and showers, grabs all El Paso's clothes and money. Feeling doubly inspired by her gut, she squats over his insensate form and deposits a wet shit on his back.

So, yes, we were "excited" to have an excuse not to go through El Paso. The thought of going to a monument to white sand sent giggles of cynicism through Mom and I. Dad misheard where we were going and asked "White Fence?" From then on it was "White Fence National Monument". Seems just as likely as getting excited and national-monumental about some white sand.

Cynicism was proven wrong. It is true that white sand is not impressive in small pails or in sacks from the hardware or craft store. But if you put an immense unfathomable amount of it all in one place, it really is, uh, monumental.
That is probably true of almost anything in the universe. Get about 140,000 times more of it that you ever thought that you could have in one place and then make that just a small corner of the amount of it that you have. Do that with just about anything, and I you get a "National Monument."

And they shoot missiles off nearby.

We had a picnic.
I took a nap on top of a dune.

Dark and Light

Carlsbad Caverns.
Yes! The caves! Dark!

Pretty much an amazing place. Even if it's theatrically lit, and you dutifully walk down paved paths. That is necessary for it to exist at all.


Posted a photo here of what was one of the very few features in the entire cave that did not have a posted name. We named it the "Devil's Boob". The name is so obvious there was no need for a damned sign. Every thing else was named the Devil's something down there. The Devils' Pit, the Devils Column, the Devil's Washboard, the Devil's Underwear Drawer, the Devil's Girlfriend's Face Product He Hides Behind the Shampoo When She Isn't Coming Over, Only She Notices, And So Deliberately Leaves Underwear Tucked In The Bottom Of The Bed And A Pretty Sock Here And There.

Dead Funny

Mom and I were talking about death while sitting around the concrete picnic table. She asked me about hospice volunteering. She shared her experience as a nurse and the daughter who sat with the father and the mother and the mother-in-law as they lay dying. Both my Grandmothers died at our house under her care.

We talked about Oregon's Physician Assisted suicide laws and the truth on the ground about end-of-life care. She bemoaned the continuing lack of adequate knowledge and sensitivity about pain management, the many times nurses and doctors acted as if the perseverance through discomfort was a virtue, the reliance on opiates a moral failing.

We have been without a law such as Oregon's, whom some 400 or so souls have availed, and yet many Doctors and families have responsibly aided in making death a passage rather than a violently resisted secret and shameful termination. This is the same medical tradition that treats pregnancy and birth as a disease, so why would death be treated any different?

But many have always know how to ease the transition. It happens all the time. Does it hasten death by a day or two? Perhaps. If you prescribe enough morphine to alleviate pain, and that pain is exponential, you will eventually suppress breathing to a nil point.

So we were talking, back and forth, and agreeing. Dad joined us. She brought up Pa, my grandfather, and his failed suicide and eventual death some 4 days later. How angry he was that he had failed. Then we talked about his father, my great-grandfather, and his two attempts. The second took. First he tried carbon monoxide, the tailpipe trick. But the car stalled out before he had completed his crossing over. Revived, he was angry. Furious. Pa said to him "Don't get mad at ME, I'm not the one who didn't put enough gas in the car."

We cracked up, laughing at how that story reveals my grandfather's "bedside manner" and compassion. Or lack thereof. Laughing, Dad said: "Making a note for myself: get a full tank." More laughter, with him following up with "but, no, I would never, have never thought of that."

Will he ever? It's a different blood line, and his disease often robs the will and any real self by the time it would be a "seemly" or "timely" to take such an action.

But Mom has already started scheming. Yesterday, as I drove the RV and Dad was standing outside in our path directing us, it was: "if you just keep rolling..." A pause. Then we laughed.

The Laundry Incident.

Earlier this evening I helped Dad carry a couple of loads to the laundry. When we got there, I started loading the clothes into the machines and he started looking for the quarters that were in his hand before we left. He must have looked for them for at least 30 seconds or a minute and I was sure he was going to have to go back the 100 yards to the rig to get them. I asked him to check his pockets again, and sure enough, they were there the whole time! I mean, wow. IN HIS POCKET. I tried to keep my frustration at bay while I firmly thumbed the quarters into the slots. 

Facing away and slopping soap into the machines I said: "So, have you heard that the native American elders had a tradition of taking a long last walk into the forest when they knew the end was coming? Interesting, huh?"

And for those of you who have been there when the shoe I was looking for was found on my foot or when I have arrived at the office to finally realize I forgot the pants: Shut up. That's different. This is MY DAD.  

Yesterday, Day One.

March 7^th

 Got up, finished packing, went to the airpoart early. Had a quick flight to Seattle, upgraded to first class for the Seattle to Dallas leg for $100. I usually try to recoup this in wine, but kept that urge for thrift under wraps.  Uneventful, really, the whole thing.  Noted a first class passenger in first row smack his seat-mate briskly to wake him to reset the seatback. He then got up to get his bag from overhead, and he was wearing sweatpants!  I could see his undies and his belling peeking from under a fuzzy comfy shirt! Like traveling on an airplane is much like having the flu and staying at home sipping juice and having mom bring you a grilled cheese sandwich and you get to nap and watch tv all day.

That's fancy pants getting his luggage off the carosel. Note the fab backpack, carhart jacket, hoody, plus sweat pants and walking shoes! He’s ready for anything!  The princess in the background was laughing giddily all the way up to the point where she starting peeing on his city hikers.

 

The taxi driver was too blind to read maps or to see and discern road signs. I wanted to tell him to find another line of work, but then I couldn’t think of a really good alternate job for him that didn’t require good vision. I know there are many, but I was operating with marginal time, and was trying to navigate out of the airport to a RV park from the back seat using hunches and my iPhone’s mapping feature. 

 

Mom and dad met me at the entrance to the RV park, and we flummoxed one of the old-timer gate gaurds by refusing the ride on the golf cart. I love how much Mom and Dad choose to walk. They are walkers!

Mom noted that no one was out at the campground. It was a beautiful night, warm with a breeze, and we sat watching and counting airplanes coming in to land some 7 miles away.   It seems everyone else was in their rigs watching t.v.

Mom asked sardonically “now why would you be inside when you could be outside counting airplanes?”.

 

Dad had a little trouble with getting the awning put back. And was pleasantly surprised several times that I was going to be with them the rest of the trip. How nice to get that treat over and over!