Tuesday, January 30, 2018

While she moves it, I will lose it.

I have this ball of anxiety sitting in the middle of my chest.  It makes things like eating, breathing and generally being happy slightly difficult.  After last week and Saturday specifically, I keep waiting for the ball to drop.  Onto my head.  Like a cartoon anvil.  Yeah. 

I may or may not have sought assistance from an herbalist/horticulturist to assist me here.

I'll start with Saturday's escapades.  Casey and I walk in and he asks how the carpet got stained.  I'm like "whaaaaa?"  He says "yeah, there's a huge stain."  And then we look into it further and it's not a stain, it's a big fucking puddle.  My mom comes traipsing out of her closet, which was completely dark, we had no idea she was even in there and scared the shit out of us.  Honestly, I don't know who was more scared- her or me.  We're like "Where did this water come from?"  She, naturally, has no clue.

We follow the water into her closet and then the out and to the bathroom.  There is water all over the floor.  The toilet tank is dripping like a mofo.  It's 11:15am.  WHERE THE FUCK ARE THE NURSES?! 

I instantly switch into Producer Jess mode, which means I'm out the door before Casey even gets the water off in search of someone to punch.  I find a nurse in the dining room, serving lunch.  Does anyone else feel like a nurse shouldn't be serving lunch and should be helping patients or at least keeping a fucking eye on the patients? 

" xxx I need a maintenance guy in my mom's room NOW."  My voice is low and growling.

"Maintenance guy, I don't have one."  The nurse says.

"Well, there's water all over the fucking floor in my mom's room. You better get someone in there IMMEDIATELY."   The nurse gets a look of pure panic on her face.  There are very few people that see this particular side of me.  The few that have usually end up in tears. 

I go back to the room and Casey and I are met by my cousins who had come to take Mom out so we could go through her stuff and get rid of stuff.

With mom out and distracted, we took a video and began the cleanout.  I emailed the video to both the executive director and the nursing director.  It's fair to say that I'm still livid about the situation.   I threw all my anger into the clean out and was happy to say that it allowed for a completely impartial trashing.  None of the "Oh, I know she'd like this" or "this is so sentimental!" crap.  We were able to fit all of her clothes into her closet and dresser.  It was awesome. 

Fast forward to Monday.  Still nothing from the director of nursing or from the executive director.  We pick my mom up, I turn in the keys and take mom out.  Good fucking riddance.  Before we left, though, we found mom, in a temporary room upstairs, flopped sideways on the bed, obviously not checked on at all.  We discuss with the nurse on duty and she said she didn't even know my mom was not staying in her room and was actually looking for her until she ran into the maintenance man who knew where my mom was.  NO ONE HAD TOLD ANYONE THAT MY MOM WAS IN A DIFFERENT ROOM!?  WTF?!  There is absolutely no communication from anyone in the old facility.

My mom has started wandering.  For someone to have eyes on her or know where she is is of the utmost importance for us.  Her new facility is secure (meaning she can't get out without someone being with her).  I know she will be safe.  I know she will be on a schedule.  I know she won't be alone and by herself in her room. I want her happy. 

Friday, January 19, 2018

Something smells fishy....

To quote one of my favorite kids books of all time - Yesterday was a terrible, horrible, no good, very bad day.   Yesterday sucked very large, hairy donkey balls.   Today isn't really much better but I'm in a slightly better head space and I'm in one of my "get shit done" modes.

I was a wreck yesterday.  Crying, snot, the works.  It was ugly.  The funny thing is, I finally got a decent amount of sleep and I wasn't tired when I woke up.  And then the phone calls started.  With the phone calls, accompanied the lying.  The later in the day, the crankier I got.  The crankier I got, the more I wanted to cry.  I felt useless and like I was not winning at whatever game was being played. 

Casey said to me yesterday that I'm waiting for that whole "AHA!! I CAUGHT YOU FUCKER!" moment with the retirement community.  Seeing things clearly (or maybe not quite so clearly yet), I'm definitely wanting that "AHA!" moment.  It's not that I want a monetary gain from this, I just want what every woman wants - to be told that we're right.  I want them to admit "You're right, we aren't equipt for this.  Never were, never will be."  That's all I want.  I also want them to admit they're completely understaffed and that as much as they're saying they are, they totally are not. 

Have I got you saying "But Jess, what happened?!" yet?  No?  Well, this is the part where you find out anyway.

I woke up yesterday, watched some kitten videos on facebook and my phone rings.  It's the assisted living facility.  My heart always gets a little thump-y whenever they call.  I'm always worried that they're going to tell me that my mom has injured herself or something worse.  While she hadn't injured herself (this time), it was slightly worse. 

Backstory: a few weeks ago, I got a call from one of the nurses letting me know they had to stop my mom from walking out the door to go to Meijer.  My mom had gotten it into her head that she wanted Tostito's chips for some reason or other.  They stopped her, but called to let me know that they had done so and that she was agitated.  Honestly? I would be too if I couldn't get my chips and salsa on.  The difference is, though, the whole dementia thing.  It's not safe for the woman to be wandering around outside.  This kicked off the whole thinking about switching her to a specific memory care facility.  I started doing the research and got on the waiting list at two facilities that I had decided were best for her.

Fast foward to yesterday.  The nurse calls and says that I need to be made aware of certain things.  She says that the night before my mom "ran" outside in her nightgown to get the maintenance man to fix her tv (she couldn't turn it on).  It was 15 degrees outside last night.  Not the smartest thing to do to be sure.  The story didn't end there.  Yesterday morning my mom had been found standing outside dressed in pajamas and her coat and boots, waiting for the bus to go to her hair appointment.  This was apparently around 9am.  Her hair appointment was at 1pm that day.  The nurse then went on to explain that the director of nursing was suggesting that I hire someone to essentially babysit her during the day.  To which I was like "Um, isn't that your job?"  Why are we paying so much money for an ASSISTED LIVING facility if they aren't 100% assisting?    I told the nurse thank you for letting me know, I understood that it was a safety thing but a conversation like this needed to come from the director of nursing herself.  The nurse was quite taken aback but agreed.

Ten minutes later, the nursing director called.  She apologized and then went into her spiel that it is a safety issue, blah blah blah, that they had tried to stop her from going outside but she's so fast and couldn't stop her.  And that was when I about laughed.  At the time I was laughing more at the my mom being so fast bit than anything else.  I told the director that if they wanted me to hire someone that I needed something in writing.

Two hours later, the director calls again.  She's all "I'm so sorry, I feel horrible about this..." So why are you calling to rehash this lady?  She then says "If so and so hadn't been coming in, we wouldn't have known she was outside.  There's no telling where she could have ended up.  We had no idea she was outside..."

Half an hour after I got of the phone it hit me...  "...we tried to stop her from going outside, but she's just too fast..."  "...found your mom outside this morning..."  "if so and so hadn't been coming in, we wouldn't have known she was outside..."  

SOMEONE IS LYING TO ME ABOUT THE CIRCUMSTANCES.    I had laughed during an earlier conversation because the director said there was someone at the nurses station at all times.  I can't count the number of times that I've been in and there is NO ONE at the nurses station.   Not only that, but these people are supposed to be checking on my mother EVERY HOUR.   But then, the director herself says they wouldn't have known she was outside?!  WTF is going on there?! 

Just writing this is making my brain hurt and my anger boil beneath the surface. 

Thankfully, I also got a call yesterday that an there is an opening at the secured memory care facility.  The movers have an opening on Jan 29th.  SO, now I have to plan a move in a week.  Yep... That's what I've got to do.  Oh, and there's the whole telling my mom thing, too.  This is going to be a fun weekend.

xoxo Jess

Tuesday, January 09, 2018

The "Normalized" Schedule

Day two of waking up before the sun comes up. This right here is why I don't like it when the kids are on break.

Sure, it's nice the first few days - sleeping in, snuggling up in the morning, staying up late and being goofy.  Then, the laziness begins.    The sleeping in and staying up late leads to a horrible pattern so difficult to break.  You tell yourself that you're going to go to bed early so you can get yourself back on your schedule and you succeed on getting the kids to bed at their normal bedtime.  Then, at maybe 10pm, you send yourself to bed, fall asleep reading around maybe 10:30 only to be woken up by the alarm clock at a time that you truly believe is too early for a civilized society when in reality it is a normal time.

Alexa, courtesy of my Amazon Echo, woke me up when she was supposed to.  I love that thing.  I'm still slightly paranoid at her listening all the time, but not enough to really bug the shit out of me.  (If the CIA is listening, they've got a straight line to our sex life.  Pretty awesome, huh guys?  Fifteen years of marriage and we still have passion! Yeah!)  I haven't figured out to snooze the thing yet, so I turned it off.  And this morning, I fell back asleep.  Casey came in and woke me up rather gently. I don't remember if he actually said anything or just rubbed my back.  There may have been a well-placed Felicity style "Hey" in there.   I propped myself up on my elbows, phone in hand, and checked my email.  Who would I have to deal with this morning?  Nobody important?  Cool.  And then I fell asleep again, phone in hands, propped up in a weird pose.  I "woke up" ten minutes later.

As I trudged (and trust me, there was trudging) to the bathroom I heard the kettle boiling.  I love my husband.  He was making me coffee.  I did the whole shower thing, got dressed and that finds me here.  Giant cup of coffee in hand, I have responded to the emails that were important, sent clients updates and now... Now, I'm ready to crawl back in bed. Please and thank you. 

Today, the "Hustle" light shall remain dark at my desk.  Lucky, the unicorn, shall stare back at me in shame.  I shall make myself get out of the house with Casey just so I stand a chance of staying awake.  I have only been up for an hour, but feel that I have been productive enough.  I am hoping that the cold air outside will shock my system into actually doing something more.  We'll see, though. I'm ridiculously tired.

Monday, January 08, 2018

The Ghost of Christmas Now Past

Christmas 2017, at 3:54 am, I started writing this particular blog post.  I just started transcribing and refining.  It's yet another insight into the wonderful world of living with a family member with vascular dementia. 

I find myself hoping that someone out there is dealing with the same stuff as me.  Is there someone else out there that feels the same way I do about this?  I mean, I can't be the only one, right? Hello? Anybody out there? Houston, I have a problem and I'd love a little help...

Without further ado, here you go...  The post that I'm calling The Ghost of Christmas Now Past.

Christmas 2017, early morning: 3:54am. 

It was the stacatto of the dog going completely apeshit that prompted Casey to get out of bed and head downstairs.  It took a minute for me to register that Kara (el doggo) was indeed barking at my Mom.    I had FINALLY fallen asleep a little more than an hour ago, the whole time convinced that if I did actually fall asleep something horrible would happen.  Instead of the traditional Christmas saying of "sugar plums dancing in their heads" I was envisioning my mom falling out of bed or getting up and trying to go up the stairs for one reason or another and then falling.  Why the hell did I buy a tri-level and then proceed to invite my mom to spend the holidays with us again? I'm a horrible daughter.

Turns out she was in the kitchen, hence the dog barking.  Thankfully, there was no falling involved. Casey helped her back down the stairs and to the bathroom (which was her ultimate goal).  He came back to bed and I found myself 100% awake, mind playing 100 different scenarios.  It was after a couple of minutes that I realized that she would probably need help, so I grabbed my robe and headed down the stairs.  She did, indeed, need help, so that's what I did and then took her back to bed.   I tucked her in like she was a little kid and as I stood in the doorway, turning off the room's light, she looked at me and said, almost lucidly "At three o'clock in the morning, the enthusiasm has died down."  

I responded with "Yes, mom.  But that's only because it's 3 o'clock."  I said it like a silent promise.  Like when the sun rose, everything would be better and I would be more "enthusiastic" at a time that wasn't right now.  

Realistically, I'd love to be more enthusiastic.  It's hard to be, though, when you see your elderly parent deteriorating to the point where they cannot function on their own.  Honestly? I'm amazed she even knew it was 3am.  With her dementia progressing, I'm all for the little victories and knowing it's 3am? Definitely a point for the win column!  I'm also 100% sure she mostly knows where she is.  Is that a bit of an oxymoron? Maybe? She knows she's not at home.  Win.  Unfortunately, this is probably the last time something like this will occur.  Spending the night on Christmas, while wonderful and supposedly magical is anything but.  Spending the night on Christmas is nerve wracking and chances are pretty good that I will not get back to sleep.  Especially with the sun right around the corner.  I think the kids even set an alarm.  They were plotting for an 8am alarm, but I think it's going to be a lot earlier.    I'm also thinking that chances are pretty good my mom will get up and try and wander around the house.  Thankfully, if I fall back asleep, we have the bark machine to alert us.  Kara really does not feel comfortable with Mom in the house.  "STRANGER DANGER!!"  

I THINK I have officially compartamentalized in my head that this is the last Christmas that my mom will be spending with us at home.  Going forward, the trip will inevitably be made to her place of care.  As a kid, my Mom always had me and her piano students volunteer at an old folks home around Christmas.  We would play a Christmas program for them; there would be singing.  One year the ballet studio that I was studying got involved and there was dancing as well.   I always hated it.  I looked at it as a chore.  My Mom knew this.  She would tell me "They need some Christmas cheer."  Looking back, I find it hard that she actually said those words, but the essence of them was certainly there.  It was more we were doing it to bring a smile to peoples' faces.  Now, though, I find myself shifting into the mindset that visiting my Mom on Christmas will be the chore.  The sad and annoying chore that I don't want to do.  Christmas will now be a chore.  That's where the compartamentalizing thing kicks in.  I have to turn that part of my brain off so I can deal with what I believe to be the problem at hand.  I ultimately hate myself for it.  "Come on kids, we have to go see Abuelita!" I'll say.  Everyone will begrudgingly get into the car, we got there, there's the bribery of McDonald's involved. 

So, back to the present.  Why can't I just enjoy the time I have?  Why do I have to turn it into a chore?  I have to figure that one out.  I have a year to do it... There I go procrastinating again.   In the meantime, though, I've been wringing my hands, stressed about having her herere.  Funny, I still very much think that things have to be 100% perfect for her.   She always demanded perfection in the past and one of my hang-ups was that nothing was ever good enough for her.  I always ALWAYS felt like such a failure because I could never meet her standards.  

Casey keeps telling me "She's not going to care.  She doesn't understand."  And, as per usual, he's right.  That doesn't mean that I didn't clean the kitchen at midnight before I went to bed.   

I really really really really want to find a way to handle this, because honestly it's going to get a lot worse.  There is nothing that I want more than to just enjoy this time with my mom but I continually feel more and more pressure and more and more frustration.  I haven't been able to compartamentalize the disease vs the person.   I love my mom, yes.  I hate the disease, yes.  This fucking sucks.  

Fueled by Coffee

Today, I am channeling all the love from the arabica beans lovingly chopped into coffee grounds and brewed to absolute perfection in one of the best Christmas presents ever, my Chemex pour over coffee maker. 

FUCKING LOVE!!!  Who knew coffee was this awesome?    My friend Stazi would argue that she has been trying to tell me this for years, but let's face it- I've always been a little late to the game as far as addictive stuffs.  I mean, look at my love for Las Vegas.  And then, waiting 39 years to try some illegal in the state of Indiana edibles (was in Las Vegas at the time).  I also didn't have a "proper" cup of coffee until I was 39 either.  It's been a pretty awesome year.  Hell of a good last year in my 30s.  Not done yet, either!

And there I went on a tangent.  I was saying that today's post is fueled on coffee.  Love love love the coffee.  I've needed it, too.  Right now,  even as I drink what I think is my 4th cup this afternoon (now I'm thinking of the caffeine headache I'm going to have if I don't keep this pace up moving forward), I have a minor case of the sleepies.  There is nothing that I would love more than to crawl in bed and take a nap.  Ain't no rest for the wicked, though. 

Today it was back to the grind after a prolonged Christmas vacation.  The kids went back to school, both Casey and I went back to work.  All clients have been contacted, followed up with, stuff scheduled and thus we get back to doing what we love and live for.    I've also been dealing with making the tough #adulting decisions. 

You all know the story- mom has vascular dementia, yada yada yada.  We are now on the waiting list for the memory care facility.  The move, when it happens, will be crazy fast.  Everything has to be in place and today has been the whole making phone calls to begin that process.  I can feel the tension creeping up my back.  I feel like one of those "Help us meet our goals!" thermometers that people fill in when there's a fundraising thing going on.  If I had to describe where I'm at, I'd say I'm about half way up my back.  I'll be happy when this is all settled.  The worst part - Mom won't be able to take her piano.  This piano, and she reminds me all the time, has been with her since the 60's.  It's been around longer than me.  It's been around longer than my parents marriage and divorce.  I'm not 100% positive but I'm fairly sure that it has been overseas and back.  I'll have to get my mom to tell me the story if she can remember.  I know I've heard it but now I'm the one that can't remember.  Hahaha!

Whatever the case may be, the piano cannot come with her.  Just can't do it.  When we moved her into assisted living there was downsizing from her home to a 2 bedroom apartment.  It was that move that I was like "Oh my god, my mom is a Hoarder."  No, not a hoarder, just in a house for over 20 years and that shit accumulates!  Now, 2 years in assisted living in a 2 year apartment and I have to consolidate down to a room that is going to be slightly bigger than my current living room.  TL:DR - not that big.   This is gonna be fuuuuuuunnnnn.  (That was sarcasm, people.)  The piano situation - here's our options:  1) Sell said piano.  That makes me sad. Someone will see the graffiti my 7 year old self made and possible, if they can dislodge it, a Luke Skywalker action figure with built in lightsaber from the early 1980s.  Option 2) someone in the family takes it. 
The idea has been thrown around of even offering it to some of the family in Panama.  Something tells me that will be ridiculously expensive, though.  So far, no takers here.  I don't have room and as much as we're like "Yeah! Piano!" We're all kind of standing around, looking at each other saying "Errrm, piano?"   Option 3) Donate said piano to someone one or somewhere.  Honestly, I'd rather sell it and put the money in my mom's account.    Did I mention that memory care is fucking expensive?  My hatred of the fact that a nice place for my mom is not covered by insurance, or at the very least PARTIALLY covered, pisses me off like nobodies business.  That's another story entirely, though. 

You'd think that after so many years of feeling like an utter disappointment and feeling like there was nothing in the world that I could possibly do to make my mom happy I'd be okay with this feeling of being completely inadequate.  Nope!  Some people have daddy issues.  I have Mommy issues.  Have you seen Bad Mom's Christmas?  I laughed and cried during that movie because the relationship between Mila Kunis and Christine Baranski was spot on.  You want nothing else to please your mom, but nothing you ever do is good enough.  You know this, but rather than be like "Fuck it!" You keep trudging forward, attempting perfection, even though there is nothing you can do to get you there.  Yeah, fairly sure I need therapy.   And more coffee. 

There's not enough coffee in the world... and my cup is currently empty.  I think I'm ready for bed and ready for tomorrow.  (Crap, it's only 5pm.  Well, this sucks.)