Saturday, December 3, 2016

December 3rd, 2016

Hey there.  Thanks for reaching out to ask about my mom.   I just got back to town from an extended trip to see her so let me take a few minutes to update you.  Before I get started, I should tell you that her name is Mary Lou, but many years ago, a friend of mine started calling her ML and we have all been calling her that since and will refer to her with that moniker in the passage that follows.

Was planning for a 5 day trip to say 'hey' and give moral support, but she was in a bit worse shape than  expected.  Physically, she was as strong as a 90 year old ox, but her mind was wandering and was not retaining information.  She could easily recall everything that had ever happened in her life with the exception of stuff that happened since her fall.  To remind you of the situation, she was on an outing in August with her place and as she was walking down a set of stairs, put her cane on a metal drain grate on the final step, it slipped and she fell and banged her head on the stair railing.  A CT scan at the time showed no serious damage, they sewed her up and sent her home. Several weeks later, she was complaining of headaches and her doctor said to take Tylenol.  The bottle showed she could take them six a day, which she started doing.  This doctor knew of her spill and this diagnosis was negligent at best...more on her another day as I need to remain silent due to possible legal action..  ML then started to become disoriented, waking up in the middle of the night not knowing whee she was and such...I got a Skype call at 4:30am her time in one of these states and it was scary as hell.  Mentioned last time that my sister took her to a specialist on election day and they discovered a large blood clot on her brain, which is where I left off last time.

Her follow up appointment with the specialist was on Tuesday after arrival, so we had a couple of days to do things together...like go to buy shoes at Nordstrom and have a throw down at her guiltiest food pleasure...Taco Bell.


I indulged so much that I clogged her toilet the next day.  More on that family trait later.

We go to the neurosurgeon on Tuesday and I get to see the CT scans.  The one from right after her accident, which showed little damage,  and the one they took a week previous, where  you can see this massive white blob on the side of her head opposite of the one she hit.  That was a surprise but learned that it is common as your brain sloshes around up there.  The doctor said we could leave it be and hope it would dissipate, or open her up and try to drain it.  I know she was scarred at the prospect of surgery.  Anytime you cut someone open is a risk and that danger increases exponentially with someone that is 90 years old.  The stats we were shown was that it was successful over 95% of the time for younger folks, but dropped to 76% in the elderly.  The doctor made it sound like it was a routine thing and my feeling about her going through with it at the appointment was a coin flip.   ML, who from my earliest memories has pleaded to not be kept on any life support and willingly signed every DNR (do not resuscitate) declaration, was adamant that she just wanted to let it run its course and did not want to be lying there as an invalid.  For some family perspective, my grandmother, her mother-in-law, went in for surgery when I was in my 20's and she never went home again, so that is in the back of all our minds.  We all sat around and discussed options and to be honest, felt that we put pressure on her to say yes, which she ultimately did.  I don't feel good about my part in that and constantly fought the urge to subsequently say that she should not go through with it.  They didn't waste any time and scheduled for Thursday... two days later.

Game time came on Thursday morning and she was a cool customer, especially as she'd never been on the receiving end of a surgery in her life. I hoped that relating the experiences of my six knee/ankle visits to the ER helped demystify the upcoming proceedings.  It didn't take long and we were able to see her a couple of hours later.  Other than the two 2" scars on the side of her head, she looked normal, but she was definitely not all there.



In some ways, she was exactly like before  cause one of the first things she wanted when they let her elevate her head 35 degrees at 9pm that night was a broom to clean up the room.  Maybe it is nurture or that we are both Virgos, but I remember coming home from ACL surgery, still cloudy from the anesthesia and before the pain meds wore off,, and the first thing I did was grab a broom to sweep up the kitchen.  When the time came that she was able to get up and go to the bathroom, I'm sitting there as she is shuffling back to bed and there is a trash can in the room that was slightly askew and even in her delirious state, I watched as she instinctively paused and aligned it straight.

She spent three nights in the hospital.  It was supposed to be two, but the way the medicare works, she had to stay three nights in order to get her after care paid for.  I was fortunate to not be dealing with the administrative side of this process so can't tell you why, but you instantly realize why medical costs in the States are out of control.  Those three  nights were brutal.  Hour upon hour of listening to her ask the same questions over and over just not able to comprehend what was going on.  One of her first questions was "why are we here and where are we going?"  Pretty deep for a stoned college dorm but disturbing as hell looking at your mom with two new holes in her head.  We've all heard about people dealing with relatives that have dementia or Alzheimer's, but seeing someone you love not having a clue about where they are, or who you are, is absolutely soul crushing.

OK...take a moment and remember these five words...Face, Velvet, Church, Daisy, Red.

That first night was in a room with two other post-op patients, and all the moans of pain and nurse activity was surreal.  One of the saving graces of my moms post-op condition ws that she felt absolutely no physical pain, but her mind wouldn't turn off and she would not go to sleep.  Her ramblings must have provided some entertainment to the other inmates.  At one point she finally nods off for an hour and am sitting there in the dark and merciful silence when the guy behind the curtain  in the bed next to her starts talking to the nurse.  She asks him about his surgery, which had something to do with his back cause he is not allowed to move at all, and then he goes into a 15 minute version of  his life story...his coming to God moment that his life is all about getting back to his two teen age kids.  He had three kids but one died young.  He explained that unbeknownst to him, while he was at work, his pregnant wife was smoking crack and the baby came out all messed up and died young.  Then his work as in construction dried up due to the 2008 market crash and he had to take jobs at the Home Depot, where he fell off a ladder and broke his back.  Bad surgeries got him on his feet but not enough to do construction, so he has been driving a forklift to make ends meet.  His spine deteriorated to the point he ended up back for this surgery and that he prayed he could be normal enough after to take care of his kids.  Will never ever forget that moment.

Night two still found mom being disoriented.  There is a thing called Sundowners Syndrome where people with dementia get worse in the evening, and she exhibited this in textbook fashion.  At one point in the middle of the night (even heavy sedatives wouldn't knock her out), we're talking and am not sure who she thought I was, but it's clear she doesn't think I'm her son.   She wants out of wherever she thinks she is and reaches out and grabs my knee and says, "Look, we've been friends a long time.  You've gotta get me out of here." Disconcerting but funny. 

 I think the worst of her ramblings was about my sister.  A traditional running trope in our family is that, as the baby in the family, I have always been the favorite.  Never mind that my sister is a Princeton/Stanford grad and wildly successful in her field while I am an unemployed burnout, I've always gotten off easy and can do no wrong.  My sister is the one that organized for her to sell her house after my dad died and moved her to a swanky retirement community near her place so she could keep watch on her, and I get to swoop in a couple times a year and be the fun kid that takes her to Vegas and Taco Bell.  At one point during a particularly fucked up rant, she says to me that my sister has always wanted her jewelry and now she can get it since she is locked up in the hospital and that she is now expecting to be sued by her.  Very hurtful stuff that was easily overheard by my sister who was standing in the hallway.  I wish I knew why, and they don't out an out yell at each other, but it was not cool that they kept butting heads about issues where they both were in agreement.  They called me a couple times to resolve disputes about points that were not debatable...like that she cannot leave the hospital and taking certain meds.  During her more whacked out moments, we had to speak to her like she was a 5 year old...things like eating your vegetables before dessert... and I know that in that situation, I got to be the good/lenient parent. 

Sedated, and obviously a fall risk, someone needs to take her to the bathroom.  Additionally,  hospital gowns leave little in the form of privacy.  The nurses did the dirty work in the bathroom, but I saw things that I can never un-see.  I was relating the stories of Grandma to the kids and when I started sharing this part of the experience, the Boy said stop and when I tried to push through, cause I had to get it out of my mind, he almost yelled at me to 'please stop'. I informed botht he kids that they had better get used to the idea of changing my poopy diapers someday or at least work hard to make enough money to hire someone to do it for them.   Speaking of nurses, they are either the most incredible people or are the biggest sadists.  Probably a little of both.  I posited this thought to someone along the way and asked if there was another profession that was similar.  They said elementary school teacher.  Hmmmm...really?

After the hospital, she was in no shape to go home, so she ended up in a Skilled Nursing place.  Her retirement community has three sections.  Independent living, where her apartment is, is a deluxe apartment complex with all the amenities but no live in care givers allowed as you have to be able to live on your own.  Then there is the Assisted Living section where you transfer to when you need care givers and there are 24 hour nurses on call.  This is where she was going to have to go if her dementia didn't get better and she knew that once you go there, you never get out and that thought above all others is what made her give the surgery a go.  The third section is Skilled Nursing where the inmates/residents can stay when recovering from surgeries like she had.  I saw a ton of broken hip patients.  It was comforting that it was still in the same complex, but she didn't like it one bit.  The ramblings had lessened but still would come around at night.  Things like "lock the door" even though there are no locks on hospital doors or  "let me get my stuff from upstairs" when there is only one floor of the facility repeated on an endless loop.  There was a near constant flow of people in the room...to take blood pressure, deliver her meals and give therapy. so was hard to just relax.  One of my best traits (I think) is that I can change any  subject, which was invaluable in this case as she was obsessing about her situation.  She was a Fox News devotee and we agreed to not have that fight, so to distract her, looked for shows we could both agree upon so we could lose our thoughts into something else.  She loves the show Blue Bloods, which apparently runs 24 hours a day on some channel.  I had never seen it but has been on for at least 6 years and was game as I am a Magnum P.I. era Tom Selleck fan, but found Blue Bloods to be awful.  Donnie Whalberg proves that talent doesn't get distributed evenly in a family and the whole thing felt preachy.  My mom even complained that Tom Selleck drinks too much (Scotch with a back splash).  I didn't care too much cause it was all about putting her at ease,  but then we stumbled on a channel way down on the dial called Buzzer that played old game shows all day and night.  Was a perfect choice as it didn't matter that we'd get interrupted by the nurses, plus those shows were so great.  Old Match Games and Family Feuds were my favorite.  Next to each of the Match Game celebs they all had ashtrays, and you realize how far we have come in access to dentistry cause yellow snaggleteeth were the norm..  Charles Nelson Reilly and Brett Sommers were fucking riots.   And I was envious of Richard Dawson cause he obviously had the cushiest life...always with a perfectly glowing tan and totally buzzed.  Life must have been good.  Let's Make a Deal was another winner, but the biggest find was one I had totally forgotten.  Cardsharks.  I wish you had seen it with me...there was a black guy that won four days in a row and he was dressed in immaculate late 70's disco attire with the big lapels on a shirt unbuttoned to the waist with gold chains gleaming and an absolutely perfectly manicured  huge Afro.  The show centered around picking cards that were either higher or lower than the one before and he would explain the  rationale for his choices with aplomb before each card was drawn.  He finally got taken down by this adorable Hawaiian woman with ultra tight t-shirt and the tightest high waisted bell bottoms that had to be a foot wide and covered her shoes. After each correct card, she'd clap twice and do a little jump.  We laughed and commented on these shared cultural relics and it made us both relax for a spell.

The nurses at this place, mostly CNA's (which stands for Certified Nursing Assistant) and later the ladies my sister hired to be her baby sitters, were all Filipinas.  I know I've touted how much respect I have for these people, but have to reiterate just how amazing they are.  Nothing fazes them and they are always happy.  And they aren't dummies either...was chatting with one at length one afternoon and asked what she thought of their new President Duterte.  She replied with 'what do you think about Trump'.  N'uff said.  The lady that cleans our apartment once a week is a Filipina lady and there is something about their inherent good naturedness and giving spirit that makes me want to be a better person.  The lady that comes to our place in Taiwan to clean left her home when her daughter was 4 years old so she could make money to send home so her kids could go to school.  The daughter is 22 years old now, just graduated from medical school in respiratory something or other and they have not seen each other in 18 years.  She doesn't say it with sadness but is proud of her daughter.  They talk every day on the phone and yesterday, she showed me some pictures of her.  Smoking hot.  Equal parts heart wrenching and inspiring.  Before my mom could take a shower, they would come to give her sponge baths and I'll be honest here,  I really wanted one too.

One of the bigger topics during her recovery was bowel movements.   Anesthesia will shut down your bowels, as I can attest to first hand.  After my ankle reconstruction, which was a 3 or 4 hour under anesthesia  affair, I hadn't urinated for an extended period of time,  so the saint/sadist nurse jammed a tube up my penis to get the show started. No small talk or foreplay.  Mom  wasn't getting enough fiber and shit, she's 90 years old so if she wants to eat chocolate all day, the good (lenient)parent in me said ' go for it'.  But that stuff will not help getting regular.  Twice daily doses of stool softeners weren't doing the trick and a couple of glasses of something called miralax didn't get the plumbing right either, so one of her team of brilliant Filipinas brought prune juice one morning.  Within hours, she had a toilet clogger of her own.  Literally...we had to call for the plunger to get it down.   We all high fived.  I even took a photo of it but will not share it with you cause this site isn't ratemypoo.com, however I will send to you if you send me a private message. 

As her night time disorientation was a concern and she was an obvious fall risk,  someone needed to stay with her all night and as I had nothing better to do, took the duty the first couple of nights.  My sister had access to a fancy full size air mattress that was too big and loud to work in the room so ended up making a little spot on the floor.  After a couple nights of chair sleeping in the hospital, this was a step up.  The problem was that since I was asleep too, we had to hook her up to a personal alarm system that would ring if she tried to get out of bed.  Never seen one of these before, but they have these devices that strap onto the bed railing and then a string running from it is clipped to the patient so if they get up, the magnet attaching the string detaches and a loud siren will start blaring.  The problem in this case was that the stupid cord wasn't as long as the bed was wide and mom is a roller and pulled the rip cord once an hour.  That was not a pleasant night.   She tells the world the next day that I was yelling at her but in my recollection, was calling into question the relationship that the designer of the 'bed alarm' had with his mother.  We hired a nighttime sitter to come from 11p-7a after that cause I was not only losing my mind, but my personal hygiene was starting to suffer.

What was supposed to be a 4 day trip turned into a 2+ week one and have to give credit to Eva Airlines.  I changed my flight date 3 or 4 times and they did so nicely and with no added fees.  What did suck was that we had a long weekend trip to Malaysia paid for that I had to miss.  Am glad Betty and the kids went and by her account, the place was fantastic although she groused about the kids being lumps.  It seems that the combination of being a teenager that has to be unimpressed by anything a parent offers, and that they have seen so much stuff in the last 4 years that their motivation to get the most out of a vacation has flat lined.  Haven't talked to them much about their trip but did hear about the hot Europeans in the hut next door.

 The Boy didn't think our comments about them were funny.
 It has been a while, years probably, since Betty has spent extended quality alone time with the kids without me around, so view this aspect of the situation as a positive.

I spent at least 16 hours a day with her during this whole thing and was witness to her daily improvement. Early on, I was thinking we made a terrible choice in convincing her to do it.  In the dark recesses of my mind, and just for a fleeting moment,  thought that snuffing her out with a pillow would be the most humane thing to do.  I thought about my own mortality and if I am ever in a spot that seemed terminal...where the rest of my life would be painful for not only me, but all of those around me, that I hope someone would casually leave a gun (or preferably a bottle of sleeping pills) and I will take care of my own business.  But every day, she was retaining more and more.  She had therapy, both physical and occupational, twice a day.  As mentioned earlier, she was a clean liver all her life and while she always detested exercise, a constant regimen of cleaning for 90 years made her physically fit.  She did better each day with the physical stuff and was making great strides with the cognitive and occupational stuff as well.   24 hours after surgery, they gave her a test to see how the brain was functioning.  In that test, they showed her a cube and told her to draw it.  She couldn't.  Another question was, 'if it is 10 minutes past 11, what time is it" and then to draw a clock with the numbers and represent the time on her drawing.  Couldn't do that either.  They gave a couple of words and asked what relates them...apples and bananas, train and bicycle, a ruler and a clock.  She got those right but I gave different answers than she did.  Hers were right apparently...for instance, she said apples and bananas were both fruit while in my mind I thought that they could both be peeled.  I later asked the therapist if there was a right answer and he said it was the fruit one.   And at the end, they asked her to recount the 5 words they gave her to remember at the beginning of the test that I listed earlier in this post.  Can you remember them without looking?  She got 3 or 4 and I did the same, but that is not an easy thing to do.  They gave her this same test a few days later and she did much better and was lucid enough to realize that she had to pass this test to get back to her apartment and asked me to help her study.  I would guess they give a version of this test to football players they suspect have a concussion. 

Betty had a trip coming up and was worried about leaving her, but the improvement in her health daily was such that I felt it OK to come home.  I honestly thought that she could go home then if it weren't for the night time bouts of nutty talk.   They moved her computer over to the place and we have skyped each day and she seems even better still.  They are going to not have a night time babysitter for the first time tonight and she just got word from the team that is monitoring her that they feel she can go home next Wednesday (which means that health insurance stops paying for this nursing thing).  Her retirement complex has to sign off on her first and that includes a walk through of her place to make it safer (no loose carpets, a chair in the shower, etc), but all in all, it looks positive.  Glad I didn't use that pillow.

When I got home I said these words that I never ever thought I would utter...'it's good to be back in Taiwan'

Her is a photo of one rack of staples in her head...there is another set towards the back. 



When she was lying in the hospital bed and I showed them to her and asked if she was getting AM and FM.  I thought it was funny but the young nurse that was there with us at the time did not seem amused.  I said to the nurse, if instead of AM/FM, if I asked if she was Bluetooth enabled,  would that be funnier?  She said 'not much'.

Talk soon.

No comments:

Post a Comment