The Deciders

There is nothing uplifting or cathartic about this post.  Nothing.

Friday evening, Carolina, an LPN at the Courtyard called me because to report my mom had some swelling in her left leg.  I called my sister, Tracy, and she drove over to NHC Place.  I drove down a little while later, in part because I was concerned when I learned an ultrasound had been ordered but it was uncertain when it would actually be performed, since it was a weekend.

Mom was comfortable and in bed when I arrived.  She smiled as she talked quietly to us.  Tracy and I stepped outside to talk amongst ourselves, then I asked to speak to Carolina, because I had obvious concerns about not knowing when an ultrasound would be performed and who, at NHC Place, was making the call to treat her there rather than have her transported to a hospital.

In situations like these, with my mom, Tracy is usually the State Department and I am the War Department.  That's just the way it works.  As we talked to Carolina in the hallway outside my mom's room, I became more and more uncomfortable that anyone there understood the potential gravity of the situation, given that my mom could have a blood clot in her left leg.

After I asked some pointed questions to determine who had made the call on medication and the short-term treatment plan, I got some assurances that Carolina and her successor later that night would check on her more regularly than normal.  Tracy decided to sleep there overnight, my mom's room.  As always, Tracy is doing the heavy lifting with my mom.  I worry about the burden she's shouldering.

I drove back down yesterday morning and stayed with my mom for a bit.  Tracy went home to shower, then I left a few minutes before the ultrasound was to be performed.  I had to get back to our house and get the boys ready, with Jude, to go to the Predators' NHL playoff game vs. the Colorado Avalanche at 2 p.m.

During the first period of the game, Tracy texted me and confirmed what we feared.  My mom had a blood clot in her left leg.  I left our seats at the the game and found a quiet place in Bridgestone Arena (not an easy task during an NHL playoff game).

I spent the next hour or so on the telephone with various people at NHC Place demanding to talk to the on-call nurse practitioner who was in charge.  For some reason, she initially refused to speak directly to Tracy and instead relayed information to the nursing coordinator.  I wasn't going to rest until I spoke to her directly, which eventually happened.

Thankfully, one of our closest friends - who happens to be the OB GYN/surgeon who delivered both of our boys - was at the Predators' game.  She graciously walked down between the second and third period of the game, right as I finally received a telephone call from nurse practitioner.  I handed my cellular telephone to Roseann and she quietly, but firmly, insisted on getting a full update on my mom, the protocol at NHC Place for situations like this and the standard of care.

Roseann's most pertinent and pointed question summarized what I had wanted to know.  "How would a blood clot like this be treated if it was discovered on a Tuesday?"  In other words, she wanted assurances the standard of care was the same on a Saturday as on a weekday, when a nurse practitioner would be on site.  I was so grateful to have Roseann there.  She's simply one of the best people I know.

In the end, Tracy and I were the deciders.  We had to decide whether to leave my mom where she was - resting comfortably in the Courtyard at NHC Place - or to have her transported to the hospital in an ambulance.  We tried to balance the difficulties and trauma associated with moving her and how tough it would be for her to possible get stuck on a stretcher in the emergency room against the fact that she won't see a doctor until Monday morning.  Not an easy decision.

In the end, we decided to ride it out at NHC Place.  Tracy stayed with her again last night and I'm headed down to see her now.

The hits just keep on coming.

God Bless the Humboldt Broncos

This morning as on all Sunday mornings, Jude and I awoke at 6:30 a.m. to the sounds of Joe restlessly and noisily going through his wakeup routine.  He wakes up like an old man - stretching, grunting and groaning - as he prepares to begin another day in the life of a 6 year old.

Within minutes, he walks into J.P.'s room to see if he is up.  Then, we hear them talking quietly.  Last but not least, he calls to Jude through the baby monitor we've kept in his room so we know what's going on upstairs with the boys, "Mom?  Can I get up?"  Of course, he's already up.  She replies, "sure, come on down."

We hear the pitter patter of feet upstairs - Joe's - J.P.'s morning routine is much quieter - and the boys suddenly appear in the doorway of our bedroom, as if by magic.

When I think about, it is like magic, in a way, that in the midst of our busy lives and of all that I have going on with my mom, God has blessed me at 51 years old with two healthy, happy and active boys. Magic, for sure.

What I'm thinking about this morning, as I finish my latte at the Frothy Monkey before the Sunday morning rush, is that there are 15 sets of parents in Humboldt, Saskatchewan, who will never get to hear their boys wake up again in the morning.  This, after a tragic bus crash killed 15 boys on the Humboldt Broncos, a junior hockey team with a long and storied tradition in the small town of Humboldt.

I can't begin to fathom how those parents feel this morning.  It's simply beyond my comprehension and, hopefully, it always will be.  To say my thoughts and prayers are with those families and that community is very obviously an understatement.  I think every parent has those families in their thoughts and prayers this morning.

It's so easy to forget how lucky I am to have my boys.  This is especially true on a weekend like this one, when we have three baseball games, two soccer games and a Davis Cup tennis match to attend.  And that's only Saturday.  Then, one baseball practice and two soccer practices to get to after church on Sunday.

In between the occasional bickering between them and the trips all over town for practices, games and sleepovers, there is love.  Just simple, pure and unadulterated love.  And Jude and I are so lucky and thankful and blessed to have that love in or lives.

God, be with those families in Humboldt who lost their boys.

The Monster

I guess the transition with my mom to the Courtyard had been going a little too smoothly because things took familiar turn yesterday.

I stopped by to see my mom yesterday afternoon, Good Friday.  I brought her some ice cream from Jeni's.  I was looking forward to a nice, peaceful visit before I got an afternoon run in.  I guess I'd let my guard down a bit, forgetting momentarily that the monster that is Alzheimer's disease waits for moments like that to renew its vicious attack on its unwitting and victims and their families.

It's a longer walk from the parking lot to the Courtyard that it was to Aspen Arbor and when I arrived, I entered the code and walked back to her room.  The door was partially closed, so I walked in and was greeted by a "full Monty" shot of my mom sitting on the toilet, something I've not seen before and really didn't want to see.  A CNA (certified nursing assistant) was helping her but didn't appear to be doing too good of a job of it.  I stepped out, ice cream melting in the styrofoam, to go bowl, and waited in the hall.  I chatted with another CNA briefly, then she stepped into my mom's room to help with her.

After a few minutes, they walked out and my mom was seated in her room, in a new wheelchair supplied by NHC Place.  It has a taller back on it, which is good for her back pain because it provides more support.  It's much heavier and bulkier than her old one, though, which limits her mobility.  She can't propel it herself like she could with the old one.

The toughest part was my mom was highly agitated when I sat down in her room to visit with her.  She was breathing hard, which is what she does when she's upset.  She didn't want any ice cream and I was unable to distract her enough to get her calmed down.  She was talking about wanting to "go downstairs," which she hasn't done in a while.  I think that's the last vestige of her time at Maristone, when she lived upstairs and had to go downstairs to eat her meals.  I heard that a lot from her after we moved her into Aspen Arbor at NHC Place, but hadn't heard it much since she had settled in there.

I pushed her in her wheelchair around the hall and back to her room, but still, I couldn't get her settled down.  In the end, I wheeled her back up front, with the other residents, and left her at a table with another lady, eating ice cream supplied by a CNA.  Go figure.

I don't know.  I guess I was hoping we'd get a respite from the Alzheimer's monster, at least for a few weeks.  I should have known better.

10

JP turned 10 yesterday.

10, so hard to believe.  He was so young, so very recently.

Last night, at bedtime, I actually pulled up the blog on my cell phone and read him the censored version of the what I wrote 10 years ago, the day he was born.  I left out some of the parts about Jude's surgery.  When I finished, he said "that was really good, Daddy."  I smiled.

After he went to bed, I made a late night trip to the grocery store.  When I got home, Jude told me JP had come down a few minutes earlier.  He couldn't sleep and was a bit out of sorts.  Among other things, he was worried about what his life would be like in 20 years.  He was worried that Jude and I would be older.  Interestingly, he also was concerned that he wouldn't be able to remember what it was like to be 10 when he was 20 years older.

He was worried about what comes next.  Well, I'm worried about that, too.  When I went upstairs and checked on him, he already had fallen back asleep.

JP's always had an old soul, seemingly from the very beginning.  In many early photos, the expression on his face belies his age.  At times immediately after he was born, I noticed in photos that it almost looked JP knew something that I didn't.  It wasn't a seriousness, not really.  It was more of a contemplative or knowing look, something in his eyes.

I tend to lean toward the nostalgic, perhaps too much so.  I kind of hope he doesn't inherit the part of his dad's makeup, to be frank.  Sometimes it's hard to live in the moment and enjoy the now if you're so close to memories from the past.

Also, at 10, I don't want him worrying too much about the future.  That's like staring at the sun, you know.  It can drive you crazy and, for sure, make it almost impossible to enjoy the present if you're worrying about what's to come.  That's not something I do and I hope he can avoid doing it, too.

----------------------------------------------------

I was 41 years old when JP was born.  Now, I'm 51.  So much has changed over the last decade of my life.  Much of it expected, I guess, buy much of it unexpected.  

It's crazy, but I remember wondering when he was 3 or so if JP would ever be a sports fan, like his old man.  Somewhere along the line, around age 4, the switch flipped and JP became hooked on sports.

He's his daddy's son, for sure.  Just like me, he loves the Dodgers and the Lakers and would watch sports on television all day long, if we would let him.  I worry sometimes because so much of his life revolves around sports.  Playing sports, watching sports or reading about sports.  Certainly, it's a currency that he and I can trade in and a language that we speak to each other.

JP fights me on it, but I really, really want him to be open-minded and try different things in life.  I feel remiss in that I haven't gotten him into some type of music lessons.  What I want for him, later in life, is to have the creativity that I think is only developed though expanding his mind in creative endeavors.

JP's a rule follower.  I worry, sometimes, that he's a bit risk averse, like Jude.  I want him to have the courage to take chances, to not be afraid to fail.  We talk about that sometimes and I point out that no one achieves true success, that they earned, without taking risks.

It's interesting because he's a paradox in some ways.  JP's sensitive, especially when it comes to other's feelings.  He's very empathetic toward others.  At the same time, however, he's tough.  For example, in baseball, I never hesitate to put him in difficult, pressure filled situations.  He has enough confidence and is tough enough to not let failure get him too down.  I've brought him in to pitch late in games - when a walk or two will result in a loss - partly because I know he is tough enough to handle failing.  Many of his teammates aren't that tough, so I don't want them to be crushed by failure in a key spot.

JP seems to perform well, maybe better, under pressure.  In baseball, I can think of three or four occasions - one last fall - when he rocketed a line drive late in a game with two outs, two strikes, all while staring down a pitcher who is bringing the heat.  Last fall, he struck out a ringer for the Oak Hill team - a player that played with us many years ago - with the bases loaded.  The kid, Drake, is probably a foot taller than JP, and he punched him out in a key spot and we held on for the win.  Those moments make me proud, as a father, because I'm not sure they can be taught.

JP's really taken to reading, a lot.  That, of course, makes Jude and me extremely happy.  I'm a voracious reader so it pleases me to no end to see him curled up on the couch, on his own, reading.  I want to steer him into a little more fiction reading, I think, because he tends to read biographies or, especially, books about sports figures.

Every parent-teacher conference we've had at USN, where JP goes to school, has been revelatory in the sense that it reminds us what a great young boy he is.  His third grade teacher couldn't praise him enough, academically and socially, when we met with her a couple months ago.  He's so smart, in school, and so considerate of others.  He's inquisitive and wants to learn.  He follows directions, listens and just loves school.  I love that about him.

I don't talk about it enough, but JP is maybe the best big brother ever to Joe.  He lets Joe tag along with him and his friends, whether it's playing sports or hosting a sleepover.  He plays with Joe all the time.  He doesn't hit him - not ever - even when Joe gets frustrated or angry and slugs him.  His tolerance and love for Joe are unbounded.

The bottom line, of course, is that Jude and I are so lucky.  God has blessed us with this gift of a son, our oldest son, JP.  These are the salad days with him, no doubt.

Happy 10th birthday, JP.  My son, my oldest son.  You have enriched my life in ways I never thought possible before you were born.  I can't remember life before you and I can't imagine life without you. I'm proud of the boy you are, at 10, and I'm proud of the man you will become, already.

  

Settling In (Again)

A quick one over coffee 6:15 a.m. coffee at 8th & Roast before Jude, the boys and I catch a flight to Tampa this morning, then drive over to Sarasota to stay with my longtime friend, Mike Corley, and his wife, Stacy. 


We got my mom moved yesterday at NHC Place, from Aspen Arbor to the Courtyard.  Tracy and Alice did the heavy lifting, although I reviewed and signed the contract after seeing my mom briefly in the morning.  Tracy handled the pre-admission paperwork, which was necessary because the Courtyard is, for all intents and purposes, a part of long-term care at NHC Place.  As I've said previously, it's more hospital-like.


One of the benefits of the move is that my mom will have a hospital bed in her room.  Whether she will sleep in it is another story.  Hopefully, she will, and the pressure ulcer on her butt will start to heal with treatment because she won't be sitting so much.


Tracy stayed with her last night.  At bedtime, she sent Alice and me a photo of my mom tucked into  her bed.  Comfortably?  Maybe not, in her bed nonetheless.  One day - or night - at a time, I guess.


The move went well and my mom seemed to adjust okay, at least so far.  The staff at the Courtyard appear to be excellent.  If that continues, it will be a big relief.  One thing I've learned during this process is how much I rely on a staff member or two who really seems to care and take an interest in my mom.  I think I latch on to one or two of those types of people to keep me in the loop and to make me feel a little better about her circumstances.


Tracy and Alice did a great job getting her room set up.  They've been spot on with that since she moved into Maristone in November 2016, Aspen Arbor in October 2017 and, now, the Courtyard. 


It's funny and a little sad, but I rarely have any telephone or in-person conversations with Tracy or Alice that don't involve my mom.  Typically, it's who is stopping by to see he and when, how she was doing when one of saw her, what a nurse or caregiver told us, etc.  I miss being able talk about other things with them. 


Alzheimer's seems to bring us, as a family, closer together in some ways, but also drives us farther apart.  We have so few normal moments we can enjoy together, where the specter of the disease is not hanging over our heads or on our minds. 


That being said, we work together as a team.  It's comforting for me to know I can count on Tracy and Alice.  It just is.


Now, back to the house to finishing packing for sunny (hopefully) Florida.  It's 35 degrees outside!    

Another Moving Day

I'm struggling to regain some semblance of equilibrium in my life as my mom continues her inexorable descent to the end of the line.  My emotions are frayed and my mind is numb.  As I told Jude over the weekend, I'm no angry anymore.  I'm just deeply and irredeemably sad.  Not some  of the time, all of the time.

We're moving my mom to the Courtyard today, out of Aspen Arbor.  It's just down the hall at NHC Place but it seems like it's a world away.  The Courtyard is on the long-term care side of the building, so the setting is more "institutional."  Aspen Arbor was much more homey and comfortable, for my mom and for us.  The residents at the Courtyard are generally in worse shape than the residents at Aspen Arbor.  Almost all of them are in wheelchairs and many don't speak much, if at all.

Among my many worries are concerns about whether a lack of interaction with other residents will accelerate my mom's mental decline.  The problem is that they just can't care for her anymore at Aspen Arbor.  She's wheelchair bound, incontinent and it takes more than one person to transfer her to the toilet.  And she has the pressure ulcer, which can be treated daily at the Courtyard.  Their is a nurse present all the time and more staff.

The move is the best thing for her, I know, but the transition is going to destroy her, I fear.  And I leave for spring break in Sarasota, FL, tomorrow with Jude and the boys.  Shit.

She is going to miss some of her friends at Aspen Arbor and I sure as hell am going to miss them, too.  The staff has been kind to her and us.  I always thought I would return to Maristone to visit, but I never have.  I hope I return to Aspen Arbor, but I don't know if I will.  Seeing her room, empty and devoid of her presence by the end of the day will probably knock me to my knees emotionally.  Ah, man, this is so fucking hard.

I surreptitiously nailed the framed photograph of my mom to the wall outside her room in Aspen Arbor a few weeks ago, to help her remember which room was hers.

A last glimpse of my mom's room at Aspen Arbor.  What you can't see is the bird feeder outside that Tracy hung next to the window.  My loved to watch the birds flit up to it, peck at the safflower cylinder and fly off.

Dreams

The night before last, I had a spellbinding dream, one of those dreams that seems to last forever.  Maybe is lasted five minutes, maybe it last a few hours.  I don't know.  I woke up once and as is the case with those type of dreams, I consciously and successfully fell back asleep so I could continue the dream.

In the dream, Tracy and I were driving with my mom, location and destination unknown to me.  I was driving and we all were as we are now, my mom in her current state, although I think she could walk and her physical disability wasn't as pronounced as in real life.  There was no wheelchair anywhere to be seen.

Here's the thing - we were lost.  I recall trying to navigate  using my cell phone as I drove, but I just couldn't get accurate directions to where we wanted to go.  My mom was beside me in the car - it was a sedan - and Tracy was in the back seat, trying to help me navigate.  None of us were particularly upset.  We were just confused and, well, lost.  I kept missing turns and it felt like, at times, that I was driving near downtown, on the interstate, in a strange city.  I didn't know which interstate or bypass to take.  

We stopped at a stranger's house and, somehow, she got in the front seat on the driver's side of the car, with my mom between us.  As she tried to give us directions, my mom gently pawed at her hair, shoulder and chest.  The woman was relatively tolerant but a little surprised, until I told her my mom had Alzheimer's.  She nodded and looked knowingly and sympathetically at me.  

At some point, perhaps after the rain woke me up briefly and I fell back into the dream, we were all riding a bicycle, still lost.  I was steering and pedaling, Tracy was behind me giving me directions and my mom was on the back of the bicycle.  I was terribly afraid she would fall off, but somehow she didn't. 

I found myself pedaling the bike in the grass along side a road I knew I needed to be on, but I couldn't get to it.  I was on the wrong side of a chain link fence that seemed to have no discernible end.  I couldn't find a way to get us onto the road.  I felt helpless.

In the last scene of the dream before I woke up, the three of us were sitting in a booth in a restaurant. My mom was beside me.  She looked at me and said plaintively and a wistfully, "I want to go home."  

She said it again.  "I want to go home."

"I know you do, mom," I said.  "I know you do."  

I woke up as the dream ended.  it was 3:00 a.m.  I got out of bed and walked around our house in the silence and darkness, determined to remember as many details of the dream as I could.  

What did it mean?  Maybe nothing.  Maybe everything.  

I want my mom to go home, too.