Touching the Nightmare

I've spent an unprecedented and unexpected amount of time alone in recent months.

Pandemic aside, travelling for 122 days with only my dog and cat as traveling

companions (no offense Zoey and Marz), provided seemingly endless hours for

me to get inside my own head.  The thoughts and memories that revealed themselves when given the time and space to surface, were too often, terrifying and ugly. Yet it is these memories that so deeply define who I am and how I see the world. I tried to be brave and allow myself to remember what I have pushed so deeply inside.

    

I considered how I intend to euthanize myself rather than linger. Will I recognize when that time is?

I regretted that I didn't do more to find a way for Mom to keep her cat. 

I more fully realize, now, how the smaller our world becomes, the more important our

pets are.The only form of physical touch I receive on a regular basis anymore is from my animals.

I took that one tangible comfort away from Mom when I removed Gus.

I bravely allowed myself to recall how she would scream from the other room for us to come help when Dad was beating her. Why did I remain frozen in the bedroom? Never once did I come to her aid. Never once did I stand between her and Dad. Instead, I always did as he said: I took Lydia to our room, closed the door, turned on the TV and made "damn sure" we stayed there.

Every time.

I remembered how, once the physical fighting stopped, he'd hide her glasses and teeth. He was constantly afraid of her leaving him. She would stay in bed all day the next day. Often with her head under the pillow. Toothless and blind.

I forgot this little tidbit about their fights until this summer, when one stretch of road, or tree, or overlook, or something, brought it all back in technicolor. The furniture. The smells. Bowman Biscuit (later, Keebler) was a short walk from home. Every afternoon my ramshackle, blue collar neighborhood was filled with the luscious scent of baking bread and cookies. But I digress…     

I remembered her screams. The sounds of breaking glass, chairs falling, Mom being shoved against the wall, or thrown to the floor. The light and shadow filling our darkened bedroom from the old black and white TV. Lydia on the bunk below me, silent. Me in the bunk above, feeling my insides turn a little sick.  

These are the sorts of memories that come back to me when I’m left inside my own head.  

Arethusa Falls

After the day of hiking blunders I made the day before, I awoke the next day resolved to hike to Arethusa Falls. This day, however, was overcast, so I hung close to campsite in the morning, trying to decipher the clouds.  There was to be some altitude gain on this hike and I didn't want to be caught in a heavy rainstorm or lightening at the top of some mountain. I waited until nine o’clock. and given the lack of wind and the fact the clouds weren't getting any darker, I decided to go for it. 

We walked the two lane highway to the trailhead and found ourselves going up a steep, rocky incline from the get-go. I get cocky when a trail that isn't high in the Rockies. Sure, this goes up a few thousand feet feet in a short span of distance, but its not at 10,000 feet, is it? Every time, such steep hikes at low elevations consistently kick my butt. 

You'd think I'd learn some humility. 

This trail was no different. we went up and up and more up. No zig-zags. No hairpin turns. Just up. Over boulders and trees and huge roots. Up and up and more up.  At the trailhead, the sign said the hike was "moderate" and one should plan on one hour to get up to the falls and one hour down. I soon adjusted this for me and my conditioning to anticipate closer to an hour and a half up and two hours down.

After going up for over an hour, Zoey and I finally encountered a couple on their way down. When I asked if we were close to the falls, and saw the pity that filled their faces, I knew that we were not. The first part of the trail was over roots and boulders. The second part of the trail was over recently positioned trail logs. Huge trail logs. Some hit me above the knee, and I climbed over these on my hands and knees. Three trail logs were too big even for Zoey. She gave a mighty effort to get up and over them, but I ended up having to go back down over the log and assist her arthritic hips up and over.

I don't want to tell the other people who hike this trail that Arethusa Falls was a bit of a disappointment. But, they were. True. They are the tallest falls in the state. But I was hoping to get much closer to them than the trail allowed.  

There was such a great distance between the top of the trail and the falls, that there wasn't any thunderous sound of water or any cool mist to cool my overheated body. It was pretty, but not as dramatic as hoped. The trail reminded me a bit of the Hanging Lake trail outside of Glenwood Springs, Colorado. But the end result was nothing close to the endorphin high one feels when finally reaching Hanging Lake and the waterfalls that tumble into it.  

Then we had the dreaded downhill trek. Dreaded, because my right knee doesn't support me when stepping down steep steps, so every step down had to be taken with my left knee absorbing my body weight.  Oh how I wished I had some climbing sticks! Zoey does better if she goes first down and I let her take the lead again which she did with gusto until she almost went tumbling down the side of the hill into a steep ravine. She didn't didn't recognize the soft shoulder of the right side of the trail and lost her footing and fell off the trail with only me holding her leash. Between her furtive scrambling with her hind legs, and the adrenaline pumping through my body willing my hands to not let go of her leash, she somehow managed to regain her footing and get back up on the trail. She never approached the right side of the trail the rest of the way down.

In the end, the trail up took us two hours, to reach the top and took us three hours to get down. My legs were like jelly when we finally reached the bottom of the trail.  Zoey and I savored our last bit of water before hobbling along the road back to our campsite.  As though the gods were holding their collective breaths while we hiked, as soon as we reached out campsite, the clouds opened up and it began to rain. It rained steadily all night long.

While in New Hampshire - Part I

(Working title option 1: The Day Zoey Became a Service Dog)

(Working title option 2: Why to Begin a Hike at the Trail's Head)

We arrived at the Dry River Campground in Crawford Notch State Park late afternoon Monday. It was a nice campground with about thirty large spots surrounded by large hardwood trees. I got a trail map of the area from the Ranger-less Ranger station and studied how we might hike to one of the waterfalls that this area is known for. The map indicated that there were two approaches to the waterfall trail. One was to walk 0.5 mile along the highway to that particular trailhead. The other approach was to take what the map called a, "connector trail" that started at the back of the campground and ran 0.6 mile thru the woods ending at the desired trailhead.  I opted to take the slightly longer hike thru the woods and avoid the highway. 

Zoey and I easily found where the connector trail connected to the campground and began to follow the blue marks painted on the trees. It was a level path and I smiled at how easy this trail was to follow and how seemingly unnecessary the blue markers seemed to be. Soon, however, the trail took a turn and crossed a boulder field. These large granite boulders are the remains of glacial melting eons ago, leaving behind these huge river rocks. Also adding to the challenge were many large fallen trees that also now lay like debris in our path.  Once we were out of this boulder field, we resumed following the blue marks, which were now fewer and further between. Between the exposed tree roots, deep underbrush and the persistent river rocks on steroids, the trail was now a physical challenge.  The path was not nearly as discernible. I tried to walk towards a blue mark and stop there until I could spot the next blue mark before proceeding deeper into these woods.  A few times, though, this was not possible. No blue mark could be seen in the distance. These trail markers were no longer just on trees. Sometimes the mark was on a boulder. Other times it was painted directly on the rock where we walked. I would scan in one direction looking first high, and then low. Then in another direction, looking high, then low. When I could not spot the next blue mark, I found something notable in the spot where i stood, and then counted out my paces into the woods, turning to retrace my steps if my effort did not result in locating a blue trail marker. 

After over an hour of walking like this, I finally came upon a trail sign. Much to my dismay, it read my destination remained 0.5 miles ahead. How could we have walked for an hour and only advanced 0.1 mile? I later learned there were three different connector trails and I had somehow manged to navigate from one to the other, mid hike. I did take some comfort in knowing that we were, at least, still walking in the right direction. 

Our trek continued to become increasingly more difficult with the underbrush becoming thicker. I got off course at one point. I scanned and paced and scanned again. But no blue marks. So I paced off more steps and scanned again. Then paced off even more steps.  I turned to retrace my steps to the last known blue mark and was unable to locate it. I began to feel a sense of panic, right before I found a big blue mark on the ground, one I did not see before.  I looked ahead in the direction I thought the trail must go, and spotted another blue mark in the distance. We were back on the path!

I dropped Zoey's leash and let her follow freely behind me.  I was fairly certain we were the only ones in these woods and holding on to her leash while navigating over rocks and trees and exposed roots was becoming hazardous. However, her leash now dragging created sounds that had me turn around frequently thinking I was hearing someone approaching from behind. After about a half dozen unnecessary stops to turn around and canvass the woods behind us, only to find nothing, I began to ignore these sounds. We continued to shinny ourselves up over boulders and downed trees.

Then I realized I no longer heard Zoey behind me. I turned around to call her and was startled to see a man standing several yards behind me holding on to Zoey.

I said, "Oh! You scared me!"

He laughed and said, "Such a good dog." Then he let go of her leash and she came quickly towards me. I was annoyed by him not apologizing for frightening me and perplexed by him holding on to Zoey. The man continued to approach. He was wearing hiking gear and carried a day pack, so his presence in these woods seemed intentional, which gave me some reassurance. 

"I didn't hear you come up behind me," I said, offering him another chance to apologize for his poor hiking etiquette. Again he ignored me. Then I noticed he was wearing ear buds so I reasoned he probably didn't hear my admonishments. Once he was passed us and was a few yards ahead I said (assuming he wouldn't hear this either), "Will these woods ever end?"

"Eventually," he called back, while still in full stride into the trees ahead.

"Ass hole," I muttered.

Zoey was eager to follow this man. I didn't blame her. He looked like he knew where he was going - - and I obviously did not. I held on to her leash and let him get ahead and out of sight before proceeding.  I kept looking for the blue marks while Zoey held her nose firmly to the ground obviously tracking the man who we encountered. Not too soon after, I lost sight of the blue marks again and resumed my methodical pacing and retracing process. At one point, Zoey jerked me to the left in a direction that didn't feel right, but when I looked up, there was the elusive blue mark. I decided I'd let her lead and she confidently led me to the next blue mark. 

And the next. 

And the next.

It was Zoey's nose that got us out of those woods and back to the road where this connector trail supposedly officially started. Unlike my trail map, the trail's head had a warning posted: "Due to heavy rains in this area, portions are washed out. Take care and be sure to tell someone of your hiking plans before proceeding." 

It took us three and half hours to slog our way through these woods to the road. We still had the waterfall trail to hike. I looked at Zoey and she at me. We walked back to the campsite instead.

The Numbers Are In

On Thursday, July 1, 2021, I left Denver with the intention of being gone six weeks. On Saturday, July 31, 2021, I returned to Denver. Four weeks + three days. 31 days.

During those 31 days on the road, I spent:

    $919 fuel

      581 lodging (incl campground fees, motels (4) and HH donations)

      206 Vet bill (Zoey got into a tussle w another dog. This is the other dog's vet bill)

        68 new battery for Scamp

$ 1,774      TOTAL COST for 31 days on road; $57/day

Blessed Vulnerability

People often ask me if I am frightened to travel alone as I do, with just my dog and cat as my companions. I say, no. I am not frightened. I am not afraid to venture to places I have never been. I am not afraid to camp in designated campsites. I am not afraid of having car trouble or getting lost or talking to strangers at rest stops, gas stations or along whatever trail I may be hiking. But that doesn't mean all is carefree or that I approach my travels with a devil-may-care attitude. Quite the contrary. I accept my vulnerability and try to minimize any misfortune by researching routes and destinations with great care.  

Recently, however,  I mis-planned, poorly researched and rested on my arrogant laurels for one brief segment of my travels.  Spoiler alert: The Universe sent an angel named Michael E. who gallantly rescued me from my series of poor decisions. Here is what this kind soul looks like:

Dimmie invited me to camp on her recently purchased ten acres of mountain land. Her property was, sort of, en route to my intended destination. i read the first few lines of her directions and watched the video she posted of her road. "Four wheel drive not necessary," she wrote. "Just take it slow as there can be a few ruts here and there."  This where my arrogance came into play. The directions were to take highway 285 south to Johnson Village. Turn south to Salida. Turn west towards Gunnison until County Road 76. I stopped reading the details as I was so very familiar with this area. I thought I'd read about the last leg up to her property once  I reached County Road 76. What Dimmie did not write, nor did I bother to research, is that County Road 76 is on the Other Side of Monarch Pass, almost all of the way to Gunnison.  

Once I did eventually reach County Road 76, I had no cell signal and had to rely on her directions that I copied by hand from her online post. I gave myself smug kudos for planning for the lack of cell service in this old school way and continued confidently up the county road. Sixteen miles later, I found the Quartz Creek Properties sign as promised and turned left onto the dirt road that would take me to Dimmie's camping spot.

It was to be a four-mile climb uphill. Very UP hill. Within the first mile I knew I was in over my head. My front tires spun in the dirt and gravel, trying desperately to find footing. The engine roared as it fought to drag my 1600 pound trailer. (Mental note, the video didn't make the road look this steep.)  I soon learned that a running start was needed to crest each little incline. I continued white knuckling my way up until a curve in the road caused me to let up on the gas, and that was all she wrote. My van could not go up another inch. When I put it into park to consider what to do next, I could feel the gear slipping and the trailer's weight causing us to begin inching downhill in reverse. A few yards back at the curve, there was a wide spot in the road. I thought if I could drive back down hill to that point, I could at least be out of the way of any oncoming traffic. In my rattled state of mind I failed to turn the front tires in the right direction and all too soon found myself with a jack knife travel trailer that was just inches from slipping into the ditch. My situation looked something like this: 

Or maybe more like this:

I put the van into park. 

I pulled the emergency brake as hard as I could. 

And then I tried really hard not to have a complete melt down.  

I looked something like this:

Or maybe more like this:

And that is when Michael found me. He and his girlfriend came roaring up the dirt road in his four wheel drive truck. They hopped out of the truck and began to assess my situation. "Do you have any chocks?" he asked.

Chocks! Of course! Why hadn't I thought of that?  What I did, instead, in those few minutes I spent hyperventilating before Michael's arrival was to extend my recently repaired front jack in effort to stop the trailer from pulling itself and the van into the ditch.  This decision leaves me with having to repair my front trailer hitch jack, again. Sorry, Chris Shive (= another story for another time).

"Yes! I have chocks in the trailer!" I exclaimed a little too excitedly. "I just need to unlock the door." But the keys to the trailer were no where to be found. As I looked in the glove box, my pockets, the middle compartment, the passenger side floor and anywhere else I could think of for the keys to get the chocks, Michael quietly came up with a plan. "I can't find my keys," I lamented to him a little too distraught-fully. Michael told me all would be fine.  Not to worry. Just to breathe.  I felt my knees begin to buckle and thought I might vomit. In that same moment, I reached into my pocket for a fifth time and, voila!  There were the keys.

With the chocks securely in place, Michael presented me with his plan.  He would unhitch my van from the trailer and hitch it to his truck. Then he would drive my trailer uphill to my destination with me following behind in my van.  By then a second vehicle came along and this other driver helped Michael wrestle my trailer free from my van. I drove it up and around the corner to the to the next wide spot. After securing Zoey and Marzipan inside the van, I walked back downhill to assist hitching my trailer to Michael's truck. Soon we were ready to resume the uphill climb.  

I only had the intersection of where to find Dimmie's access road written in my notes and Michael was not aware of all the names the property developer had assigned to the roads.  At one point, he decided to not continue uphill and scramble across a thick meadow to ask at the cabin he spotted if those people knew the intersection I sought. Much to my delight, the woman answering Michael's knock was Dimmie herself. 

My trailer was deposited on the designated camping spot in short order. Dimmie was so confused. She first thought I invited two more friends up for the weekend. When she realized we three just met, she then thought that I hired Michael to haul my trailer up the hill. It took several attempts until Dimmie grasped the magnitude of Michael's kindness.  I tried in vain to give Michael cash but not only did he refuse, but looked a little offended by the offer.  Then he did me one better. He asked when I planned to head back down hill. I said bright and early Saturday, two days from then.  "Great!" he said. "I have lots to do on Saturday being that's the day Pitkin is having their annual Fireman's Ball and all. But I'll be back here at seven o'clock Saturday morning to get you safely back down the hill."

I stammered, and insisted that that would not be necessary. But he wouldn't hear otherwise.

And, two days later, Michael arrived as promised, just as the morning sun was beginning to lighten the lupine-filled meadow that lies in front of Dimmie's cabin. 

Her view looks a lot like this.

Michael drove slow and sure the four miles down to County Road 76. Just before reaching that welcome stretch of asphalt, he pulled over and helped me re-hitch my trailer to my van. He grew up in California, but spent his summers visiting his grandfather who lived in Pitkin. He moved to Pitkin four years previous. Bought a hundred year old house that he is refinishing. He paints signs for a living, and was looking forward to the festivities the town of Pitkin planned for that day, as he is one of the town's volunteer firefighters, and all.  After an exchange of emails and phone numbers, my animals and I continued on our journey west, leaving Michael standing in the road, waving us goodbye.

This is what the town of Pitkin looks like:

This is it's sign welcoming all. I can attest that their welcome is sincere. 

Michael E. of Pitkin is one of its legends.

Why I Drove 650 Miles in One Day to Taos, New Mexico, and Back

I've been looking for a camper trailer since before the pandemic hit. This virus has only fueled my desire to obtain a camper trailer. They're self contained, thereby reducing viral exposure to/from others. I have looked at a dozen different trailers in person since March. And I've perused hundreds of ads. I've messaged 30-40 trailer owners selling theirs, asking questions such as, "Do you have a clear title?" "When is the last time the bearings were packed?" I'm not entirely sure what the second question means, but I was advised to ask it, so I do. If nothing else, it makes me sound just a little bit more informed.

Perception is everything.

Most everything I saw in my price range was in need of some work, and I'm not a DIY fixer-upper sort by any stretch of the imagination. Then, I rented a thirty year old Scamp trailer to drive around on a recent family reunion in the mountains. I never towed a trailer before so I was a little apprehensive, but it all worked out. My vehicle was able to tow the trailer and I was able to manage towing a trailer on the road. After this experience, I became laser-focused on wanting a small Scamp-like trailer.

I realized I was going to have to increase my budget to get such trailer, and that I was probably going to have to travel out of state to find one. I saw used Scamps for sale in Texas and Utah, and a few in California, but none in Colorado. Then! One such beauty popped up on Scamp Finder site in Tres Piedras, New Mexico.  I looked up Tres Piedras on the map and saw it was thirty miles northwest of Taos. Taos is a five hour drive from Denver, so this meant I could, conceivably, drive to see the trailer, buy it and drive back with it, all in the same day. I don't drive after dark, so I always have to plan my road trips around sunrise and sunset times.

I messaged the owner LOTS before making the trip. She sounded like a lovely young woman. She and her two goats just moved to Tres Piedras from Spokane. She wanted to sell her Scamp to raise money for projects on new little New Mexican ranchette she purchased. She had a clear title. The bearings were just packed last summer. She said she had maintenance records for all the professional maintenance and repairs she had done to her Scamp. The trailer sounded PERFECT. The woman sounded honest. She revealed, after plans to come see the trailer were already made, that the cover to sunroof and cover to battery had both blown off. She offered a $500 price reduction if I'd receive as is, as getting the part in her remote part of the world was not easy.  I called around. The cover, and labor to replace, would run me approx $175. Her $500 price reduction seemed more than generous. She assured me it had been stored water tight since loosing the sunroof cover and that she'd be sure to make the opening in the roof road-worthy before I arrived.

On Wednesday, I got a cashier's check for our agreed upon price and fully serviced my own vehicle in preparation of hauling my new Scamp trailer home with me the next day.

On Thursday, Zoey and I left the house at sunrise and drove from 5:30 - 11:30 all the way to Tres Piedras, with two brief potty breaks along the way. About an hour and half from our destination, I texted the owner our status. She texted back that her dad was there making sure the sunroof was all sealed and she was busy gathering all of her maintenance records and other paper work.

Excellent, I thought.

Shortly after sending that text, we entered an extended No Service Zone for cell reception. I was glad I texted her when I did. I followed her directions, continuing south on the two lane highway about five minutes beyond Tres Piedras, to FSR 222. Then I drove along a poorly maintained rocky/dirt road about a quarter mile until I saw the sign directing me to her site number. Over a rock and down a steep short hill later, I spotted the Scamp in front of a rustic wood house (?) and knew I was in the right place.

The road leading to her ranchette.

An older man met me as I drove towards the house structure. Her father, I assumed. Nice man, but he had lost quite a bit of his hearing and all conversations with him were a struggle, always culminating in screaming the key words of whatever was being said.  Dad showed me around the trailer for the first five or ten minutes, with the young woman not making an appearance. After asking more questions than he could answer, he went into the house to retrieve the young woman. She was as friendly in person as she had been on the phone. She had a ladder positioned next to the trailer so I could see how they had sealed the sun roof.   

This was my first serious disappointment. The 16 X 23 inch hole in roof was covered with only a couple sheets of saran wrap and secured with masking tape. I immediately expressed concern. I brought duct tape with me. I mean, who doesn't bring duct tape with them on road trips, right? I got up on the roof to try and secure the plastic wrap. I was on the very top step of ladder and extended half a body length across the roof. Eventually, the young woman offered to help.

Then she showed me how the hot water heater worked. She said she didn't want to demonstrate turning it off, as it was busy making hot water in that moment. I didn't understand but decided to let it go, for now. I asked how to drain the hot water tank if I didn't want to haul the extra water weight. She confessed she had no idea. Inside the trailer, she showed me how water comes out of the sink. I asked how to drain that tank so I didn't carry that water weight. Again, she didn't know. I was disappointed to see that the shower dominated the floor plan. It was the first thing seen when entering the trailer. It also took up critical space if two people wanted to sit at dinette. The shower rendered the 2nd dinette seat inaccessible. I was less and less impressed with this hot shower feature. Also, of the four interior lights, three didn't turn on. This led to a screaming conversation with Dad about what he had done with the battery to make the lights not come on. After much yelling of repeated words it was determined that he didn't know what he had done with the battery to make the lights not work. Maybe the fuse was blown again? (All I heard was, "again".) The young woman screamed back at her dad that she didn't know where the fuse box was.

As she and her dad tried to troubleshoot the lighting situation, I sat at the cramped dinette to examine her maintenance records. Of the large pile of paperwork she left for me, it only contained two maintenance records from the previous July. That was all. No other records. When asked about prior records,  she said that she spent nearly $1,000 to make the trailer road-worthy as she had never taken it anywhere in the two years she owned it. I was under the impression she owned this trailer for many years. Her short-term ownership brought to rise a whole bunch of other unknowns. I looked under the trailer and saw worn our wood, exposed screws and rust. I was starting to get worried.

It was decided that, maybe, if we hook the trailer up to my van, it might cause the battery to turn on the lights. That didn't make any sense, but it didn't matter as it was then we discovered my electrical hook up in my van was not the same electrical hookup she had for the trailer. There was NO WAY I was going to try hauling this trailer 325 miles back to Denver with no brake lights. It was suggested I might get a converter at the U Haul in Taos. The young woman called the U haul place and, despite the poor phone connection, was able to discern that they did have such a converter. Zoey and I drove the thirty-two miles on into Taos to get the converter.

This thirty-two mile drive was thru a lot of desolate nowhere. But we did pass by an interesting "Earth ship" colony of half-buried berm homes. It seemed like a hold-over either from old bomb shelter days or the hippie era. As one looked across the stubble and sage brush covered range, houses like these popped up much like prairie dogs.  Here are some pics:

Earth ship (top) and berm home (bottom)

We also drove across a bridge that spans what is called The Rio Grande Gorge. This was the only time in our thirty mile road trip that we saw signs of humanity. Otherwise, this land is barren and almost other-worldly.

It took a bit of time to locate the Uhaul place. I was becoming cognizant of how much daylight I was burning trying to get this converter. Once back at the ranchette with the converter, it was quickly evident that this was the WRONG converter. The dad wanted to know why I bought the wrong one. I felt defensive. It was suggested that the dad go back to Taos and get the right converter from WalMart and that me and Zoey could "camp" there at the ranchette and wait for morning.  By now, clouds formed overhead. An afternoon rain shower was in the making. I went back inside the trailer to examine the sunroof one more time. I remained concerned how I was going to keep this trailer dry should the clouds open up.

It was all too much. I no longer felt excited. Instead, I felt only concern for this purchase. It was going to cost me every dollar I had managed to save to buy this. I wasn't willing to let go of all my savings for a trailer that only gave me concern.  I told them my decision to not buy the trailer, put Zoey back in the van and headed home. I decided to try and drive the entire distance before sunset as I didn't want this profoundly disappointing road trip to last a minute longer than necessary.

On the drive back home, I went thru the five stages of grief before coming to some clarity. I decided I really did want to own a camper trailer and that I really did want this camper trailer to be small and manageable with minimal frills. More important, I didn't want the stress and worry about what might break or fall off while using this camper trailer. I realized that feeling confident about my trailer is more important to me than saving a few dollars.

On Friday morning, I called Scamp Trailers in Backus, Minnesota and ordered me a brand new, thirteen foot Scamp that will be built per my specifications. Scamp only builds to order. There is no show-room or dealers. My trailer should be ready for pick-up in late March. Ayla likened this timeline to me being pregnant.

Long story short: I am expecting a new trailer in eight months... and I am so excited!

My First Baseline Dementia Test

Both of my parents died from dementia. More specifically, they died from complications brought about by the dementia.  This insidious disease doesn't kill the body, but it shuts down signals to other vital organs, which then kills the body. I think both died from some version of kidney/renal failure. By the time each passed, the disease had progressed to a point where it didn't really matter which vital organ function failed. I'm not sure who was relieved more when they died: Each of my parents, or those of us left to witness their decline.

I was rather clueless about the disease when Dad was diagnosed. Unfortunately, he was diagnosed after the disease had significantly progressed. We were made to feel that, "if only" he had been diagnosed sooner, maybe there would be more that could be done to intervene. So when Mom began to display different yet similar cognitive decline, I was quick to get her into her primary care physician. Nobody wanted the diagnosis, but I didn't want to be told I waited too long with her, as I had with Dad.

Dementia is a slippery slope. Cognitive decline is inherent with aging, so it is difficult to discern between what is "normal" and when the decline should be of concern. Mom was given "The Dementia Test" - - for lack of a better reference.  She was asked the day of the week, what city she lived in, who the President is and to count backward from 100 by 7's. Once you make it to 58, you are allowed to stop. Midway thru this test, the examiner lists five random objects and tells the patient they will be asked to recall these five objects later in the test.  The first time Mom was given the test, she struggled with the counting backward and recalling all five objects. Yet she scored high enough on this first test for us to be told there were no red flags. That her occasional forgetfulness and confusion were right on track for her age (80).

A couple of years, and more instances of forgetting later, she was administered her second Dementia Test.  It was the exact same questions asked before. But, this time she scored higher than she did two years previous. "How is this possible?" I asked her doctor. She clearly was starting to slip in my mind's eye, yet this rudimentary test did not support my observations. "Highly educated people such as your mother," the doctor explained, "are frequently able to pass this test. They are able to disguise their dementia for longer periods of time." At my insistence that SOMETHING be done, Mom was subjected to an MRI. Mom hated the MRI process: The confined space; The loud banging and clanging. And I felt awful for insisting she have one, but I was desperate to find help for her. I did not want the regret and guilt I had for my father's un-monitored decline to be duplicated with my mother's decline.

The scan was summarized as having normal amount of plaque build up for a woman of her age. Normal? Really?  We all KNEW, KNEW, KNEW something was up with Mom, but we were given no tools to address. Two years later, and another try at the Dementia Test indicated that now at 84 that the disease was probably present. We tried to keep her in her own apartment for as long as possible before moving her and her cat to assisted living. A year after moving into assisted living, her decline was so great that she lost the ability to keep her beloved cat with her. We basically sat back and watched over the next seven years this disease consume my mothers wit, intelligence and insight. She was reduced to a confused woman with only three or four stories about her life that she shared over and over (and over) again to anyone who might listen. When she finally died at the age of 92, most of her grandchildren and all of her great grandchildren had no idea what an extraordinary and vibrant woman she once was. Such is the true pain of this disease.

This is a legacy haunts me and my sisters. When one of us can't recall something or gets confused, we quietly confess to one another, or try to joke about how "it's" probably starting to happen to us now. I decided to take the proverbial bull by its horns, and get a handle on my own cognitive status. I wanted to have a game plan for how to address should the disease be present in me. I wanted to know what all they had learned about this disease in the twenty some years since initially navigating its' waters with Dad and then later, with Mom. I made an appointment with a neurologist. As I had no real symptoms or pressing brain concerns, I was given an appointment four months into the future. I'd like to say I almost forgot about this appointment by the time the date finally came along, but my truth is, I thought about this appointment nearly every single day since making it.

Ironically, the day of my appointment, I drove to the wrong office location. I

arrived early enough at the wrong location to still be able to drive to the correct office location, with enough time to still be seen by the neurologist.  After hearing my perceived justifications for making the appointment, the neurologist offered to get some baseline data on me. I was eager for this. Yes! Some data!  And then out came the same worn out and tired Dementia Test.  Seriously? Nothing else?

The five objects I was asked to remember were: Face-Velvet-Church-Daisy-Red. I am pretty sure these are the same five objects Mom was asked to recall back in 2002.  And, between you and me, I have been practicing counting backward by 7's from 100 for many years now. When the test was done, the neurologist said I scored a perfect 30 out of 30 score. "Good baseline data," she said. The neurologist commended me for already doing all the anecdotal things we are told to do to keep our brains pliable. I practice yoga, I (try to) learn new skills. I socialize and stay active.

And nothing else. The appointment was over.

In the nearly twenty years since first having Mom take this test, absolutely nothing has advanced in how we diagnose, or stave off the effects of dementia. NOTHING.

Face-Velvet-Church-Daisy-Red is my new mantra.
My plan is to fake them out for a few years, just like Mom did.