The Colorado Trip

After we visited Carol’s sister and her family in Wisconsin last Thanksgiving, we all said the next trip was going to be to see Carol’s folks in Fort Collins, Colorado.  It was going to be awhile because I used up what little vacation time I had taking Carol to various doctor’s appointments.  I earn eight hours of personal time every pay period.  Then COVID hit. Nobody was going anywhere for a while.  As every month passed, Carol would get antsy about going.  “Can we go now? I want to see my parents!”  I had to keep telling her month after month that Colorado’s governor had the state locked down tight.  Finally, in August we thought we had our first opportunity.  But the in-laws were feeling a bit puny and told us to wait.  We waited a couple more months, then Carol had another fainting spell.  She didn’t break anything [a big relief].  I texted her dad that I want to get Carol to Colorado while she can still remember her parents.   They said “come on out”.

The first couple of days of driving went almost without incident.  The first night, we stopped in Terrell, Texas.  Greg would have been jealous because there was a Buc-ee’s truck stop across the street from the hotel [Greg LOVES Buc-ee’s].  The second day’s driving had one foul-up, and it was my fault.  The plan was to drive north through the Texas Panhandle, then take US-287 northwest from Dumas, Texas through a small corner of New Mexico, link up with I-25 north and cross into Colorado where we would spend the night in Trinidad.  The only problem is I missed the turn to US-287 and kept going north.  I wondered why we hadn’t passed Dalhart, Texas, but soon I was greeted with a “Welcome to Oklahoma” sign.  Oklahoma? WTF?  It turns out I kept going north on US-87 instead of US-287.  Moral to the story – don’t rely on your memory to navigate.  I backtracked toward Dumas, found a shortcut to Dalhart and got back on track.  We crossed Raton Pass without incident.  We were in for a bit of a shock when we got there.  Earlier in the day, it was 91˚ F in the Texas Panhandle. When we rolled into Trinidad, Colorado a couple of hours later, it was 59˚ and dropping.  This was the first bit of “foreshadowing” for our trip.  The next bit of foreshadowing came the next day.

We woke up thinking the drive northward to Fort Collins was going to be a piece of cake.  Mother Nature had other ideas.  Our first shock came as we were getting ready to leave.  It was 26˚ outside, and ice was covering my car.  Thirty minutes later [after I chipped the ice off my car], we headed north on I-25.  No sooner do we get on the freeway than we were greeted with a sign – “Road Closed 30 Miles Ahead – Find Alternate Route”.  This became the unintended theme of the road trip, but more on that later.  We had passed a sign that pointed us to La Junta, which is 60 miles east of Pueblo in the part of Colorado I call “occupied Kansas.” I had joked to Carol “want to go to La Junta?”  Ten minutes later, the joke was on us – we were going to La Junta, like it or not.  At least the road was clear, and I found a route that took us to Rocky Ford [where they grow the good cantaloupes]. US-50 took us back west to Pueblo, and in so doing right by my old high school, Pueblo County.  Thirty-nine years after graduating from there and it’s still as unimpressive as it’s always been.

We finally made it to Fort Collins a couple of hours before dinner.  There was an enormous forest fire to the west in the mountains, so everything was a bit hazy.  Carol’s folks live in a retirement community.  It’s more like a retirement condo since it’s all one building.  Lisa and Josh made it from Wisconsin the previous night, so they were already there when we arrived.  Carol’s aunt Sandy came up from New Mexico.  It was good to see them.  I wasn’t sure what to expect from my mother-in-law because she had said some harsh things to me on Facebook about Carol’s condition and whether I was doing enough for her.  There was a bit of tension when we walked in [at least I felt it – I can’t speak for her].  After the usual catching up on family things [mostly, who died], then came the usual parade of photo albums.  Carol recognized most of them.  She didn’t seem to have a problem with them.

Two days later, we got another shock – a foot of snow.  We were told to expect some snow on this trip, nut we were surprised at the amount.  Usually when it snows, it’s gone by the next day because it’s so dry.  Not so this time.  It got cold, it stayed cold.  And because the temperature stayed cold, so did the snow.  The conditions made for tough driving.  Luckily, I remembered how to drive in snow, and I think my Florida license plate scared off everyone around me. 😊  The snow and the cold resulted in us being cooped up inside.  We didn’t go anyplace except to venture out for take-out.

On our drive to Colorado, we saw numerous signs on the highway that announced "silver alerts". The definition of a silver alert is when a person aged 65 or older with dementia or Alzheimer's disease is reported missing and believed to be in peril. Carol just turned 60, but she fits the definition.  One fear I had while we were traveling was that Carol might wander off while my attention was elsewhere (bathroom break, shower, sleeping). I asked her not to go anywhere without me because I was afraid that she would get lost. On the first morning (Saturday) we were in Colorado, she tried wandering off while I was using the restroom. I caught her in the hallway before she got too far and explained why I didn't want her to be alone. She said she understood, but it went in one ear and out the other.  It happened again Sunday morning while I was showering. I got out of the shower and noticed the room door hadn't closed completely. I got dressed and looked all over our floor - no Carol.  Where to start then? Earlier in the morning we ran out of toilet paper. She was target-fixated on getting more. I headed for the front desk, thinking she might be there. I lucked out - she was there, asking for toilet paper. I was happy to have found her, but my nerves were shot in the process. Am I overreacting?

After that bit of trauma [mine, not hers], everything seemed to click after that.  On Sunday we got almost a foot of snow. The good thing is that I didn't have to drive far in the snow. The six of us [my sister-in-law Lisa and her husband Josh, Carol's mom & dad, the two of us] just sat inside and yapped about anything and everything.  There was a Packers game on [Josh was happy], then a Broncos game [the Chiefs crushed them], and no sound on the TV [it's broken]. It was 12 degrees outside - a good day to do nothing.  Josh and I spent a lot of time doing nothing while Carol’s folks brought out photo album after photo album.  Carol got a great surprise on Monday when her high school friend Anita paid a visit. She brought tea and croissants, and pictures from "back in the day". When they were discussing memories, Carol's memory was there - she remembered it all.  She can’t remember what her sister looks like, and she can’t remember my name, but she can remember the good old days.

Tuesday came, which meant Lisa and Josh had to drive back to Wisconsin so they could go back to work.  We were going to leave the same day, but Hurricane Zeta was supposed to be going through Louisiana the same time we were.  I haven’t driven through a hurricane, and I wasn’t about to start.  We delayed our departure by a day.  The good news is we missed the hurricane.  The bad news is we didn’t miss a winter storm coming through New Mexico.  We managed to make it out of Colorado and back over Raton Pass without incident, but that soon changed after we got off I-25.  We headed back towards Texas the way we came when we came upon a New Mexico State Patrolman.  He told us the road was closed because of the snow.  When we told him we were headed for Amarillo, he told us our best bet was to get back on I-25, drive down to Las Vegas, then take a shortcut to I-40.  We made it to Las Vegas and found our shortcut, but things got dicey from there.  As we traversed the “shortcut” it was obvious the snow plows hadn’t done much.  Then Carol began to sigh…loudly. When she does this, it means she’s anxious.  This was after only a couple of miles.  After eighteen more miles, then I became anxious.  I turned around and headed back to Las Vegas, abandoning our “shortcut”.  We got back to I-25 and headed south, hoping we’d intersect I-40 somewhere.  It turns out the “somewhere” was Albuquerque.  Instead of a shortcut, we added more than 300 miles to our trip.  The road was snowy, icy, and gave me a lot of stress.  I thought we might make it to Tucumcari, but because the road was crappy we opted to stop at Santa Rosa.  It was a good thing we stopped because traffic had backed up from the Texas state line.  I was exhausted and in no mood to fight any traffic.  We were both very glad to find a hotel.

The next day our destination was 30 miles northwest of Fort Worth, near Denton.  It was a long slog to get there – not because of the distance, but because of all the road construction, 18-wheeler accidents, and generally shitty traffic.  We experienced numerous delays, making a two-hour trip to Amarillo three-plus hours.  We decided to make this our last stop and push on all the way home.  We encountered three traffic jams east of Dallas, and then four more in Louisiana on I-12.  It made for a very long driving day, but we finally made it home.  Carol enjoyed her short visit with her folks very much.  I was too tired and crabby to enjoy anything – I was just the driver.  The next time we go to Fort Collins, we’re flying, COVID be damned.  I have given both of my boys permission to hit me if I ever talk about driving there again. 

It Finally Happened

Since Carol was diagnosed with dementia, I’ve been reading bits here and there about what to expect.  One thing I read told me that people with dementia might get physical as they get upset at something.  Today is that day.  The day I had been dreading for a long time finally happened – Carol attacked me.  Well, she tried to, anyway.  Luckily, none of the punches connected.  It all began innocently enough. Today was a day off from work and I slept in.  I hadn’t planned on doing much today – maybe go to the grocery store, probably clean the toilets, do some laundry before the Colorado trip, and maybe watch a German soccer game.  Other than that, there was nothing planned for today.  That lack of a plan came literally crashing to Earth while I was streaming some music from Amazon.  I heard a thunderous crash.  I ran upstairs to see what happened. I got to the bedroom and found Carol standing there.  She was ok – she hadn’t been harmed.  That was a big relief.  A bookcase in our bedroom that contained hundreds of compact discs fell over.  Luckily it didn’t fall on top of her, and miraculously there wasn’t a cat underneath all the rubble.  CDs are just things that can be replaced.  Not so Carol and our cats.

I moved the now-empty bookcase into the closet in the adjoining extra bedroom.  I figured if I got it out of our bedroom, it won’t mysteriously fall over and again and maybe hurt somebody.  As I trudged back and forth between our bedroom and the empty bedroom with hands full of CDs, Carol planted herself in the exact wrong place – in my path, right between the two rooms.  I had asked her to go away because she wasn’t being helpful, also because I didn’t want to slip up and yell at her.  She lied down on our bed.  She was out of the way, quietly supervising my clean-up progress.  She asked me to look at “something.”  I asked her what that “something” was.  There was a whole pile of “something” on the floor and I had no idea what she meant.  Then I took another arm full of CDs and put them in their new hiding place.  When I returned to the bedroom, she was looking at a Tupperware container of paper towels.  She stashes these paper towels all over the house.  The next thing I know, she’s screaming at me to go away.  She advanced at me like she was going to hit me with both fists.  I didn’t want to get hit so I intercepted both fists before they could connect.  Then she started screaming at me to get out of the house and not come back.  I told her that pile of compact discs on the floor wasn’t going to clean itself.  I also told her since I’m paying the mortgage it’s more my house than anyone’s.  That probably wasn’t helpful, but when someone is yelling at you to leave your own house, one gets a bit defensive.

What now?  I retreated to my backroom office, fired up the A/C, and started to write this while she calms herself.  Here I will sit for now.  I just hope she calms down before she remembers where the knives are…

 

An Update...

Since the trip to the ER in June, it has been quiet around the house.  No fainting spells, no bites from hungry mice.  But it's almost too quiet.  Since this COVID nonsense broke out, I have been working from home.  That means from 8am to 5pm, I’m in the backroom, doing whatever I have to do to stay busy and productive.  While I’m in “the office”, Carol is upstairs.  I don’t know what she does up there.  I’m not sure she knows either.  Everyday around 11am I go upstairs and tell her “I hear Chick-Fil-A calling.”  Her eyes light up at the prospect of getting to leave the house, even if it’s just for a few minutes.  We go there, we get our usual chicken nuggets, and then we come back home.  I go back to my hole and she goes back to hers.  In the beginning, she used to come back to my hole and ask if she could just sit there.  In between all the mind-numbing teleconferences that that seem to be accomplishing little other than the appearance of keeping busy and doing “work,” there she was – a most welcome sight.  But lately, she stopped visiting.  She tires very easily.  She’s been going to bed around 630pm.  And there she stays until it’s time to get it up and do it all over again.  Welcome to Groundhog Day.  Wash, rinse, repeat.  She sleeps, and I’m alone with my thoughts.  That’s not a very good place to be these days.   Will her next birthday be her last?  Will our next anniversary be our last? Will I ever retire or will I work until the day I die?

What is a husband to do?  Jigsaw puzzles used to interest her, but she can’t do them anymore.  Games are out of the question.  She used to beat the snot out of me at Scrabble, but that was then.  Sometimes she’ll sit with me and watch a movie, but now she has a very short attention span so she won’t watch for very long.  When I take her to get something to eat, she wonders where we’re going.  She’s slipping away, bit by bit.  I miss the love of my life.  I am at my wit’s end to try to figure out what to do with the time we have left, however long that will be.  I could write more blog posts, but I fear that would lead to self-pity and misery. 

At the end of this month, we’ll finally get to leave this house and go to Colorado to visit her parents.  It’s been hard for them as well.  They live in a senior living facility [it’s NOT a nursing home].  The governor of Colorado has been ruling the state by decree since March.  I don’t know if it has been because he’s overly cautious, or because he likes governing without a legislature.  That’s for the citizens of Colorado to decide.  We had been trying to go out there for several months, only to be told not to come for whatever reason.  Some, not all, of those reasons have to do with the governor’s actions.  About three weeks ago, I texted my father-in-law to tell him I needed to get Carol to Colorado so she could see them while she can still remember them.  Finally, we got the green light.  We will be driving out there.  I won’t risk Carol’s health with busy airports.  But again, there’s a nagging thought – will this be the last time?

One sign of normality has crept back into our lives.  Next week I go TDY to Terre Haute, Indiana for week.  The boys and Mark’s girlfriend will look after her when they can. There are some days when they have to do some living for themselves [work, school].  In those times I’ll have someone from an organization called Home Instead look after her.  I received a visit from one of their staff today.  They hadn’t been here since January [the last time business took me away], so they just wanted an update on Carol.  How’s her health?  Good.  Are your emergency contacts still the same? Yes.  Still have the three cats? Yes.  Does she still have the same doctor? No, we have a new one.  And so, it goes – everything [I think] has been arranged.  Have I forgotten anything?

Father's Day Weekend

Father's Day weekend started out innocently enough. It's Friday afternoon, I'm in the back room (my COVID "office"), and I'm running out the clock on another work week.  Then she told me about a dehydrated mouse lying in the sun.  She put a paper towel around it and gave it some water.  Then she showed me the mouse and I put it in the shade.  I went back to the "office".  That's when the fun started…

An hour later she came to the back room and said "you're going to hate me.  The mouse bit my thumb." Right - after 36 years I don't think "hate" is in the relationship vocabulary. I called immediate care for advise what to do. The nurse told me to take her to the ER.  I told Carol "congratulations - you just bought a trip to the ER".  We were there for an hour.  Now she gets rabies shots.  We have to go to the outpatient clinic for one more shot (four shots total).  When I was a kid, I heard horror stories about rabies shots, that they were given with large gauge needles through the stomach.  Today they’re given just like flu shots.  A few days ago, after her third shot, I got a letter from the Department of Health.  They concluded there was little to no risk of rabies.  She'll get the last shot next week anyway 

Saturday was quiet. It was a day to just lie around the house.  Sunday was another matter.  I was up until 2am, as is my wont on Saturday nights.  I got up at noon, to be greeted by Carol in a lot of pain. Her face was green. That's never a good sign. The pain was on her right side.  She said maybe she banged her hip on a counter or something, but she wasn't sure.  Given where the pain was, Greg thought that maybe it was appendicitis.  So I went upstairs to shower because I didn't want to look and smell like Saturday while waiting in the ER on Sunday.  

After I was done, she said she needed to use the bathroom.  She was hurting quite a bit, so I walked with her because I didn't want her to fall.  We got to the bathroom and the pain was too much - she fainted.  I was there to keep her from hitting her head on the hard floor.  Greg was upstairs and I yelled to come help me peel her off the floor.  Oddly enough, though she hurt too much to sit, she could stand.  I knew I couldn't get her to the car.  I had Greg call the ambulance.

Sitting in the ER with Carol was a stroke (mine) waiting to happen. She had been to radiology for x-rays.  No broken hip, CT scan was ok.  Maybe she had a urinary tract infection. It took awhile to get a sample the hospital could analyze. An hour later we learn there was no urinary tract infection.  While we were waiting for all the tests to come back, Carol decided she wanted to do some housekeeping.  After I helped her put her pants back on, she decided she wanted to fold up all the sheets of her hospital bed.  All the while, she's hooked up to the machines that were monitoring her vital signs.  I had visions of her fainting again and me peeling here off the floor again.  I also thought if this happened, I wouldn't be so lucky to catch her.  She just did what she felt like doing, her husband's mental health be damned.  Luckily she didn't fall again.  After all the tests came back, the conclusion was that she had a really bad upper leg muscle cramp.  The doctor told me that incidents of bad pain can induce fainting in dementia patients.  Five hours after we arrived at the ER, we were finally able to go home. My stroke will wait for another day.

A postscript - Today we got the bill for the ambulance.  It wasn't inexpensive, but luckily I have the means to pay it.  Carol looked at the bill and asked "why are you doing this for me?" I reminded her of everything that transpired on Father's Day weekend.  She doesn't remember any of it.  I certainly do.

No Crises for April or May

There aren’t any crises to report this month.  That in itself is a positive.  Today Carol talked me into going for a walk around the neighborhood.  It’s the last day of May and it’s already in the lower nineties in Northwest Florida.  Since my profile resembles that of Buddha these days, I couldn’t turn her down.  We walked around the block and she asked me about the places where I used to live.  I told her all the places, including Pueblo.  I said that’s where we met and got married.  Every now and then I ask her “remember me? I’m the guy from the courthouse,” which usually prompts a “yeah! I remember you!”  After I told her about all the places I lived, then it was my turn.  She remembered coming from Lamar, Colorado.  Then it was out to California for a long time.  She told me about her Grandma and her kids.  “Do you remember their names – Cindy and Sandy?”  “Yeah, those were the kids.  Where are they now?” I told her.

About a week ago, she misplaced her wallet.  This concerned her because it had her driver’s license and some cash [but no credit cards this time].  It’ll turn up somewhere in the house, but I’m not going to lose my own sanity trying to find it.  I went online the other day to replace her license, but found that she was eligible to have her license renewed for a few years.  I jumped at the opportunity and filled out the renewal paperwork.  This was the proverbial blessing in disguise because last year I had to get my license renewed.  I needed either a birth certificate or a passport to prove my identity.  She doesn’t have a passport, and since she lost her memory we don’t know where her birth certificate is.  But since I could renew it online, I can take my time about getting a copy of her birth certificate from Prowers County, Colorado [Lamar].  She doesn’t drive anymore, but having a driver’s license is a big deal because it’s her only photo ID. We expect the renewed license in the mail sometime the first week of June.

She is worried about seeing her parents.  She just wants to “go home.” Carol has some idea that things aren’t normal because I’ve been home a lot.  When we visited her sister in Wisconsin last fall, we all made plans to have a family reunion in Fort Collins in June.  Those plans have since gone out the window.  Her folks live in a senior living facility.  It isn’t a nursing home, but it is a place that “the virus” would put the residents at risk.  For now, the only people allowed in the place are people who are there to clean, and people who are delivering food.  If we went there, we wouldn’t get past the front door.  She really misses her folks, but going to Colorado at this point is out of my hands.  Maybe we’ll go in July.  If not then, we’ll try August.  We’re on a month-to-month slip.  It all depends on Colorado’s governor.  I think the “family reunion” plan is gone, but we’ll still make it there sometime.  Greg and Mark are both in their twenties, so they’re cordless now.  They have their own things to do like work and college.

Lately she has taken to letting our cats outside for a few minutes at a time.  When Alex was still alive, he was our only “outdoor” cat.  He would come home to sleep sometimes, eat and read his mail [ok, maybe not the last part].  Alex passed away a few years ago, and we had to put down the next-oldest cat [Bizzell] a couple of years ago because his kidneys stopped working.  That leaves us with Blackie, Smokie, and Cleo.  They’ve been indoor cats since we fostered them ten years ago.  Her letting them outside concerns me, because sometimes large birds around here like to snatch up the smaller critters for dinner.  They don’t know what cars are, and probably wouldn’t know to move out of the way if one approaches.  They don’t know what dogs are.  We don’t have a problem with dogs on the loose here, but every now and then we’ll see a stray.  I’ve said before that I’m a dog lover who is trapped in a cathouse.  I’m allergic to cats, but Allegra allows me to tolerate their presence.  I’m fairly attached to them now.  Smokie and Cleo talk to Carol.  When they do, it sounds like they’re saying “Carol.”  Blackie is the one who talks to me.  Smokie likes to sit on her lap while she’s watching TV.  When I come to bed, he’s sleeping next to her, but then he gets off the bed when it’s bedtime for me.  I have to remind her to keep the cats inside.  When I awakened from my Sunday morning medically-induced coma this morning, I heard scratching at the front door. I knew what it was, but Carol asked me “what is that noise?”  I opened the door and showed her – it was Blackie.  She didn’t remember letting him out.

While I was watching another German soccer match, I asked Carol if she remembered my name.  The answer was “no”.  She doesn’t remember having Greg or Mark.  She’s been having trouble eating lately.  Things sound good to her, but once she starts eating, she almost stops immediately.  Anything and everything make her feel nauseous.  I asked her if she wanted anything to eat.  She said she wanted something round.  “Like a hamburger?”  “Yeah.”  It’s the same with anything to drink. We have soda, water, and Power Ade, none of which appeal to her.  She said that maybe iced tea would do the trick.  I found a jug of peach-flavored Arizona tea in the pantry and put it in the refrigerator.  Maybe that will work. 

The tree people are back.  She still talks to them, and they to her.  I’m not sure what is discussed, but for now the tree people are ok, and they’re staying outside.  Since this COVID-19 madness started, I’ve been working from home. We have a room in the back of the house where I can do work [such that it is].  The other day she came in and asked me if I was ok.  She looked very concerned, like maybe I had a heart attack or something.  I assured her I was fine.  I don’t know what prompted that.  Maybe she remembered the time I went to the ER with chest pains on 4^th of July weekend several years ago.  It was not a heart attack.  I had some bad back spasms that worked around the left side of my chest to make it feel uncomfortable.  I had the feeling at work earlier in the day and didn’t think much of it.  I felt it again while we were out having dinner.  She insisted I go to the ER, and I didn’t feel like arguing with SWMBO.  The doctors confirmed what I already knew – no heart attack.  Maybe something in her synapses triggered a memory. I don’t know.

Lately she has taken to having conversations with her reflection in the mirror.  I keep telling her that it was herself that she was taking to, but she seems convinced the person in the mirror is someone else.  I guess as long as the person in the mirror isn’t threatening her, I shouldn’t worry about it.  Strangely, she’ll keep the bathroom light on and the door closed because “somebody is in there”.  I’m tempted to get some white shoe polish [the liquid kind] and write “THIS IS NOT REAL” on the mirror.

The Head-Banging Never Stops…

This is going to be short.

The best thing about banging your head against a brick wall is it feels great when it’s over, or so I’m told.  Whoever came up with that phrase didn’t have to care for someone with dementia.  Why do I say that?  Because the head-banging never stops.  A while ago, I told you about a product called Tile, and that it helps you to locate things that have been misplaced.  However, it only works if the person you want to help cooperates.

About two months ago, I had to go TDY to Indiana.  Carol had $100 in her wallet, as well as her driver’s license, which is her only photo ID [and which I’ve replaced once already].  I gave the money and the license to Greg for safe-keeping in case they were needed, such as if she had to be seen by a doctor while I was away.  A couple of weekends ago, Mark visited us during his spring break.  While he was here, Carol asked Mark to help her look for her wallet, because it had the $100.  Once Mark told me this, I turned on my phone and activated the Tile app so the Tile I put in her wallet would start squawking.  The good news is that the Tile worked as it was intended.  The bad news is that it wasn’t with her wallet.  Then I asked Greg where the money and the license were.  He told me that Carol had taken them back to put in her wallet.  I didn’t bother to ask Carol why she removed the Tile from her wallet, because it would have been an exercise in futility. 

After the letdown of not being able to find the missing wallet [it’s in this house somewhere], she complained about a missing set of keys.  Her key chain had its own Tile.  When I activated the Tile for her key chain, same result – a squawking Tile that was easy to locate, but no keys.  She took the Tile off the key chain, just like she had with her wallet.  The hits just keep on coming…

Why do I bother?

This week I started working from home because of COVID-19.  Also, this week, Carol decided she didn’t want to take her evening meds.  Ever since she was put on a morning and evening meds ritual, she’s been complaining about having to take the same thing over and over again.  Then she said she didn’t need them because she falls asleep easily and doesn’t need them.  I’ve explained the evening pills weren’t for sleeping, but to help her mind.  That message hasn’t stuck and probably never will.  This evening, I asked her if she would take her pills, and she said no, she didn’t like the way they taste.  This time I said “you’re getting further and further away from me”.  She said she wasn’t going anywhere, and I explained that wasn’t what I meant.  I told her “sometimes you don’t even remember my name.”  I still have a hard time convincing her that she has two kids.  She doesn’t believe me.  I can’t MAKE her take her meds, and I don’t know how to convince her to do so.

Why do I bother?

I know why I bother, but it’s no comfort.  I know how this will end, but I fear the end will be coming sooner.

Her Brain Threw a Knuckleball Today

Just when I thought we’ve settled into “new normal”, Carol’s mind threw us a knuckleball.  She now has conversations with herself whenever she sees a mirror.  She thinks the person she sees is an actual, living, breathing entity.  Every night she’s usually in bed by 8pm.  But last night she was up until 1am [way past her bedtime].  She thinks the person she sees in the mirror lives here.  With Mark away at school, it’s just Greg, her, me and three cats that live here.  But she always thinks there’s more people here.  She went about making her a bed to sleep in the spare bedroom.  I have to tell her without raising my voice [I do that when I’m frustrated] the it’s not really her, it’s just a reflection, a “mirror image” of her.

Today she wouldn’t shower because her reflection hadn’t done so yet.  It took me 45 minutes to convince her that the person in the mirror really isn’t someone else.  She looked at me and said “I know.”  Her lips said that, but I wasn’t convinced her brain said it.  I was going to cover the mirror with a sheet so she wouldn’t have to see it, but it’s mounted too close to the wall to be able to cover it.  Lisa suggested taping newspaper over it.  That might be the ticket.  I just don’t have any newspapers.  We don’t subscribe to the local rag.   I guess I’ll have to buy a few.  Maybe I won’t have to – we’ll see.

When she told me that she knew the person in the mirror wasn’t real, I asked her to prove it to me by taking a shower.  She did it!  After she came downstairs, all clean and dressed, I asked her “how do you feel?”  Her answer surprised me – “I’m free!”  She said she had been “putting all my stuff into that”, but now that she understands the reflection isn’t exactly “real” she feels unburdened.  I hope that feeling lasts.  I know her brain is giving her a hard time, but I can’t be doing things this intense every day.  If I do, I won’t make it to 60.

The "New Normal"

Since Carol [aka She Who Must Be Obeyed] got her dementia diagnosis, we had to go through quite the period of adjustment to where everything is somewhat stable.  As Bill Rutherford told me, it was going to take a while to figure it out, but we’re finally stabilized into a “new normal”.  What would have been unthinkable a couple of years ago is now a daily thing.  These are just some of things I can think of off the top of my head…

I am her Pez dispenser

She Who Must Be Obeyed doesn’t drive anymore.  She made this decision when she got her cancer diagnosis.  She has since kicked cancer’s ass, but now with her being cognitively- impaired, she decided to stick with the whole “not driving” bit.  Accordingly, I’m the one who goes to the pharmacy.  Since I know what meds she takes and when she’s supposed to take them, I arrange her pill box.  She has taken that one step further.  When she remembers that it’s “pill time”, she brings me her pill box.  I take the pills out and give them to give her.  She’ll ask me “haven’t we done this already today”?  And I tell her “yes, we do this two times every day”.  She nods, takes the pills out of my hand, and takes them.  Sometimes [usually at bedtime, whenever that is] I have to chase her down and dispense her meds to her.  Sometimes my mind will be elsewhere [usually Netflix] and before I know it, she’s already asleep.  I have to wake her and give her the meds.  Luckily for me she’s able to fall back to sleep fairly quickly.  Although my head doesn’t tilt backwards on a hinge, and I don’t have a hole in my throat, I feel like a human Pez dispenser.

Inanimate Objects are Migratory

In this house, things have a tendency to be in a different place than where you last saw them.  It could be a tissue box, a cat litter box, a trashcan, her pill box, the TV remote, my car keys, or even my toothpaste.  Whenever I ask She Who Must Be Obeyed how something gets from one place to another, she doesn’t remember having moved it.  For my own sanity, I concluded that everything in this house has grown legs.  If she isn’t moving things around, that’s the only possible explanation.

The Tree People are Seasonal

The other day I asked She Who Must Be Obeyed if she had seen the “Tree People” lately.  The answer kind of surprised me.  She told me she hadn’t seen them in awhile because there weren’t any leaves in the trees. This solved a mystery for me.  When we visited her sister Lisa in Wisconsin for Thanksgiving, all the leaves were off the trees [they actually have four seasons in Wisconsin, unlike Florida].  I asked her then if she saw the “Tree People”, and she said “no”.  I didn’t ask why, so I left it at that.  But the last time I did ask why, and she told me.  They only go up in the trees when there are lots of leaves on the trees.  Mystery solved!  We have more than one “spring” in Northwest Florida.  Since we don’t have harsh winters here, sometimes when it feels like spring the trees are tricked into growing their leaves.  But when it gets cold here [it does happen sometimes], the trees shed their leaves again.  This happens several times a year.  I expect when the leaves do reappear [and disappear again], so too shall the Tree People.

What Used to Be Bad is now Good

She Who Must Be Obeyed used to really dislike certain things to eat.  I don’t know whether this is due to dementia or that her taste buds got all screwed up by chemo.  Here are just a couple of examples.  Take chunky peanut butter, for instance.  For a long time, I have been safe in the knowledge that I was the only one in a family of four that likes chunky peanut butter.  Everybody else goes for the creamy stuff.  Recently, I discovered that we were going through chunky peanut butter faster than I can eat it.  Then I found out why – she’s been eating my chunky peanut butter!  I asked her why, since in the thirty-five plus years we’ve been together she has gone out of her way to express her disdain for chunky peanut butter.  She just says “I don’t know – I like it now”.  The same can be said for Whataburger and Bundesliga soccer.  She used to think Whataburger burgers tasted like cardboard [silly person].  Now she likes them.  Before she got sick, whenever a Bundesliga match came on the television, she’d flee the room.  Now she watches them with me.  She likes to see the ball being passed all over the field, and she likes that the action never stops, unlike American football where the average play lasts six seconds.  She also likes to make fun [with me] of the players who act like they’ve been shot whenever they receive the slightest injury.  She appreciates the game now.  Maybe it’s just a passing phase…

A Year Later...

It has been little more than a year since Carol was diagnosed with dementia.  At the time, we had no idea about what to do or whom to ask about what could be done to help her.  Luckily I had a medical professional in my corner, Nurse Jackie, who told me Carol needed a head CT immediately if not sooner.  Also luckily, I guessed Grouch Marx’s “secret word” that would get a doctor’s attention to get the ball rolling [in our case, the word was “hallucinations”].  Lastly, I have a work environment [co-workers and my employer] that understands our predicament and unanimously told me “take care of your family first”.  Two of my closest friends/co-workers [Bill and Tom] told me “it’s going to take time, but things will work out”.  So far, they’re right.  Not everyone is so lucky…

The most frustrating part of our experience has been learning how to navigate the twists and turns of medical bureaucracy.  Sometimes I felt like an expression I saw on a T-shirt years ago – “Patience? Hell…I’m going to kill something!”  Of course, that shirt was made in the context of deer hunting rather than me being a homicidal maniac.  One time it was having to fill out the same paperwork many times for different people in the same hospital.  The hospital in question is a Catholic hospital, and one would think that since the Catholic Church has more money than God, they would have enough money to invest in information-sharing technology.  To give them credit, some branches of this hospital are good at sharing information.  For instance, Carol’s neurologist is in Pensacola, 45 miles to the west of us.  The labs where we can get her lab work done for the neurologist done are 30 miles to the east of us, in Sandestin.  Those locations in Sandestin, like the neurology office in Pensacola, can access the patient portal.  But the imaging lab and the blood work lab in the same hospital as the neurology office hospital still rely on paper copies of everything.  Although they are in the same building, they don’t have access to the patient portal.  Go figure…

I got a boost of confidence a couple of months ago from a friend of mine who lives in New Jersey.  He is a psychiatric nurse.  He read my last blog about Carol and her visions of the tree people.  Rather than argue with her about whether or not the tree people exist, I just tell her that although she can see them, I can’t.  And then I ask her questions about them, and she tells me.  I got a message from him telling me that my handling of the “tree people” issue was “textbook”.  I thanked him for the feedback.  It was good to hear from a professional that I was doing something the right way.  Thanks, Ed!

Carol and I went to Wisconsin to see her sister Lisa and her family for Thanksgiving.  It was my first vacation in five years, and it was the first time Carol and I made a trip out of town without our kids – ever.  Lisa had been to see us in June, and we told her we’d do a return visit in November.  I cashed in frequent flyer miles, and it cost us a whopping $22 to fly round-trip.  Lisa practically ordered us to do as little as possible, and we obliged.  Our money was no good in Wisconsin.  Lisa had noticed a marked improvement in Carol’s demeanor since her June visit.  Carol was more “with it”, was engaging in conversation, and was “happy”.  Carol told us she would like to see her parents, so Lisa and I put our heads together and said we’d all meet in Fort Collins [that’s where her folks live] in June 2020.  We missed the last family reunion years ago, so we’ll be making this one.  Wisconsin was good for the soul.  We’ll see about Colorado.

We saw Carol’s neurologist the day after Christmas.  He asked if the medicine he prescribed seemed to be working.  He asked specifically about Quetiapine [Seroquel®].  Having done my homework about each of the meds he prescribed for her, for once I felt smart enough to answer his question.  I told him “if the idea of the Seroquel is to get her to stop seeing the “tree people”, so far it isn’t working.”  He doubled the dosage for that medication.  He shared with us that many neurologists are loathe to prescribe anything to help their patients, and he was incredulous that some doctors are that way.  I think we lucked out when we got this doctor.  Carol has improved a lot with his treatment.  I told him that everything else he prescribed for her seems to be working.  She doesn’t forget who I am anymore [so far, knock on wood…], and she remembers her kids.  She still misplaces things from time to time, but I do that too for that matter.  We haven’t had any major episodes since she misplaced her wallet and I had to replace all the credit cards [we found the wallet, BTW].  The times of sheer panic have gone.  I told the neurologist about Lisa’s observations of her visit in June and our visit in November and the differences between the two.  He seemed pleased enough that we don’t need to see him until after we get back from Colorado.  We were on a three-month revisit cycle, so now we’re down to twice a year. 

For whatever reason, there has been a turnover of doctors at our local medical center.  For the first fifteen years we were here, we each saw the same doctor.  But when his last kid graduated high school, he pulled chalks and moved to Pensacola.  We got another doctor who was from Kazakhstan.  I liked him.  But his wife couldn’t deal with the warm climate here, so he had to move on elsewhere. The internal medicine doctor we saw that got things in motion for us is no longer at our local clinic, much to our sadness.  We really liked her, but other opportunities lured her away.  Last week we had to see a new family practice doctor to do the whole “transfer of care” thing.  She seems like a nice doctor, and time will tell whether she is a good doctor.  This week we hit a snafu.  The “new” [or should say “latest”?] doctor wanted lab work done to aid her evaluation of Carol, her new patient.  So far, so good.  We knew the drill – show up to the front desk, tell them we’re supposed to get lab work done, and tell them that Carol is fasting.  Things didn’t go as we had planned on Tuesday [Dec. 31^st]. 

We showed up at the lab bright and early [neither of us are ‘morning people’]. The lab tech said "there's no lab order for your wife in the system". He hands the paperwork back to me to take to family practice. I told them what the lab tech told me and they said "this should fix it". I got back to the lab, and the lab tech said that the doctor Carol saw yesterday (new doctor to the clinic - old doctor left for "new opportunities") didn't put the order for lab work under her own name, but under the name of the last doctor, whose last day was Christmas Eve. I walked back to family practice, told them what the lab tech told me, and added "I don't have time to keep doing this. We'll be back Thursday!" I dropped Carol off at home, went to work, then I called the clinic, asked for a patient advocate. They don't have one, but the operator put me through to the family practice supervisor. When all I got was a voicemail, I let her know that she's going to be on the receiving end of a very loud and very angry complaint. 

About an hour after I left the phone message, I got the call back.  I thought maybe I’d scared her off with my voicemail, but she braved the Wrath of Tony.  When I explained to her our predicament [Carol’s dementia], she was sympathetic.  As it turns out her mother also has dementia and is confined to a wheelchair, so she knew exactly what my frustrations were.  She looked up Carol’s “order” [or lack thereof] and pinpointed the problem immediately.  I told her “this may come off as crude and rude, but fix your shit!”  Her response was “we’ll be ready for you Thursday morning”.  Today is Thursday, we showed up, and true to her word, they were ready for us.  The lesson – if you don’t speak up for yourself, nobody else will.  Be fearless when confronting bureaucrats.

To be continued…