Over the past couple days, I’ve discovered that I am once again jumping every time the phone rings.  Then I remind myself I don’t even know who is calling and I should take a breath – except for the fact that I pretty much have to answer the phone anyway.  The level of consistency in Caller ID numbers with regards to the care center and hospice leaves much to be desired.

So, note to whomever has 410-321-58** – oh for the love of all that is good and holy, I told you that you have a wrong number three times, STOP CALLING ME.  This is why your number goes straight to voicemail every time now.  (Yes, I know that 410 is Maryland, but I also regularly receive phone calls from Phoenix with a Minnesota area code, so area codes are fairly meaningless anymore.)

I have figured out that while the hospice nurses do not always call from a “restricted” number, all “restricted” number calls come from them.  (Do not get me started on this.  HIPPA be damned, I am the MPOA, you should damn well show the number you are calling from.  If you are concerned about calling a wrong number and giving away info, then you need remedial phone dialing training.  If you are worried that I will call when you are not on-duty, put your phone on silent.)

So, the phone rang, I jumped, saw the “restricted”, my heart sank, and I answered the phone.  Yup, hospice nurse manager just giving an update – which was that my grandmother still had pneumonia and that she was seriously tired and no one was even remotely inclined in doing anything but letting her sleep…  I was SO good and resisted the urge to respond with, “Well, DUH, she’s near 89 years old with end-stage dementia and pneumonia, she might not be chomping at the bit to make a badminton match, so yes, LET HER SLEEP.”  I’ve already had to go a few rounds of reassurance in the past of, “If she’s sleepy and you choose to let her sleep, that is OK.  It’s best to not go poking badgers with spoons.”  I have personal experience of waking her up when she wasn’t in the mood to get up.  Trust me, while it was satisfying to finally be able to retaliate for all the times she woke me & my brother up at the crack of dawn for no good reason, it still wasn’t pretty.

The amount of snark I have to contain when it comes to my grandmother convinces me yet again that I am SO not cut out for this.  It is (and has been) a serious situation, and yet I fall back on inappropriate humor pretty much every damn time.  Somehow I cannot help but  think that everyone that is dealing with eldercare issues always has a calm, measured, appropriate response for everything – and I never quite seem to have that – or I have to choke back several completely inappropriate responses while trying to come up with the appropriate one.

That all being said, I have to thank her for holding out until the end of the semester, especially since I nearly dropped my classes when she had her bad spell the week before classes started.  Makes me wonder if Sharyn told her Donald was taking classes and not me. ;)

My grandmother has pneumonia.  It does not surprise me that this happened, I have actually been expecting it.

I did not expect that the care center would put her on antibiotics for it.  They say it is pallative, but in an 88 year old woman with end-stage dementia and very clear advance directives, antibiotics are a curative measure.  There is a reason they call pneumonia “the old man’s friend.”

I really would have thought given everything else that managing it rather than trying to cure it would be a no-brainer.  Instead, I had to call the hospice nurse and tell her they need to find another truly pallative treatment for this and to pull the antibiotics.  (Fortunately they do have an absolute boatload of things they can do that will keep her comfortable.)

If my grandmother could have a lucid and rational moment and I told her, “Hey, you’ve got end-stage dementia, and a bout of pneumonia, but don’t worry, they’re gonna clear up the pneumonia so you can just have the dementia that much longer” she would sit up and punch me in the face.  (Advance directives are great, but it’s also good to be able to say I REALLY know what she wants, cause she made it crystal clear over the years.)

It would be one thing if clearing up the pneumonia would give her a normal life again, but it won’t.

Still feel like a bit of a schmuck, though.

I’ll go out there for a couple days afterwards.  I can do Christmas or her birthday, but not both anymore.  (Lord knows I didn’t manage it with any grace or dignity up until now anyway.)  The stress isn’t even remotely worth it, and she’s to a point where she doesn’t know if we’re there, and on the off chance that she does, she has no idea how long we’ve been there, and certainly doesn’t know what day it is and whether or not we’re there on Christmas or if I’m just there myself a couple days later.  (Nevermind the fact that it costs near 3x as much for both of us to go out there for 8 days vs me there by myself for 4 days.)

I have to say, my attitude towards the holidays has improved immensely since making the decision.

My grandmother is what I would describe in a “very crappy but stable” status. Everyone agreed that there was no harm in heading home – no real sense in standing around watching nothing happen.  Now, whether this “stable” is short, medium or long term is anyone’s guess, but the hospice nurses have assured me they are going to try really hard to make sure I REALLY need to jump on a plane before they say to jump on a plane.  It helps that I know she won’t die alone by any means, and I don’t have an overriding psychological need to say goodbye.  The woman that was my grandmother left a while ago.

Her anxiety was through the roof and we all thought it was the two day gap in her meds, but I finally figured it out – we’d been barking up the wrong tree all week.  Everyone had been focusing on anxiety management, because that has always been a very, very large problem for her.  It hit me that it needed to be about pain management. There had been a couple occasions where you could tell she just couldn’t get comfortable, and the Best Nurse Ever** gave her some morphine – which calmed her down immensely.   She also didn’t want to open her eyes, and tended to have a death grip on the armrests on her chair.  I mistook the closed eyes as light sensitivity (she’s had issues with that for quite some time – figured the episode last week made it worse) and the hands just a manifestation of anxiety.  Until it hit me – they’re both natural responses to pain.

Now, if you ask her if she is in pain, she won’t admit it.  She will not admit a pain of unknown origin – because then  you have to see a doctor!  (I know that is still cemented in her head.)  She also has intermittent aphasia, and likely had a TIA last week, so if you say pain, she may translate it to chartreuse – and no, she’s not chartreuse today, you moron.

So, she’s back on vicodin with a side of morphine when needed, and while she’s tired and kinda quiet – she’s calmer, which is very good.  I’m still kicking myself that I didn’t see it immediately.

Me, I’m dealing with some re-entry issues – mainly trying to figure out what on earth I was doing before I went down the rabbit hole for a week.  Oh, yeah, trying to get ready for classes @GMU to start next week.  Which I’m now wondering if it was overly optimistic to think that things were stable enough with her in the first place to attempt such an endeavour.  If nothing else, I’ve got until September 30th to drop them.  I still need to pickup my books & parking pass – that was something that was going to happen at the beginning of this week…  Ah well.

And to top it all off, we’ve got a bit of weather headed our way, so today I was out getting supplies.  Figure if I have water & non-perishable snacks, it should help guarantee that we have power & water service.  3 1/2 days of water, Slim Jims and 3/4 of a tank of gas – should be good to go.  (Nice thing I realized tonight – if the power goes out, we will still have hot water.  Gas hot water heaters FTW.)  It’s just a bit of stuff I don’t really need right now as I’m trying to concentrate on getting my brain back in “home” mode and losing a weekend to weather wasn’t on the agenda.

* Quite literally, written instructions.  We call it the Big Book of Death.
** She really is.  I absolutely adore her.

Got in last night.  Talk to nurse at care center.  Grandma is sleeping.  Ate like a horse at dinner.  Interacting with people.  Decidedly not on the “dead in 24 hours” list.

Mind you, she’s tired as all get out (the aneurysm-rupture-that-wasn’t did take her down a few notches) and her meds are all kinds of farked up because the MD discontinued everything but Xanax Thursday night*, assuming she was on her way off this mortal coil, but she’s definitely not dead, or actively dying.  It’s undoubtedly shaved a few years off her lifespan, but she is decidedly still among the living.

*This is a good object lesson for the next time I get this call.  If she still has a pulse, leave her damn medication regimen intact.

Push for a slightly more comprehensive version of “not doing well” and the symptoms line up perfectly with her aneurysm finally rupturing/leaking, which is something that we certainly saw coming.  Doctor is talking 24 hours.  Hospice nurse called in.  Discover upon having the paperwork faxed to me that of course, the care center doesn’t use the hospice services that are in the building they share. (Of course not, that would make sense.)  Regardless, she will not be going to the hospital – her wishes have been made exceptionally clear over the years.

Booked a flight for tomorrow.  Sharyn is a bona fide wreck – she doesn’t want to admit at all that this could be the aneurysm, and keeps insisting that it’s not that bad.  (While not even remotely arguing with my coming out west less than a week after I left, so it ain’t good.)

So, I’m flashing back to this time last year where I was headed out to PHX on 24 hours notice with two versions of what is going on, with reality likely falling somewhere smack in the middle of things.

So, tomorrow I head out and probably move her to the hospice center just down the hallway and wait.  Now, knowing my grandmother, I’ll probably walk in and she’ll be sitting up in bed asking, “Why the hell is everyone hovering over me?”

The care center where my grandmother resides is certainly good enough, but they do have some left hand/right hand issues on the administrative side, which annoys me to no end, but they have not impacted my grandmother’s care, so I pick my battles.  As long as she gets her meds on time, it’s all good – and trust me, it is in their best interest to get her the meds on time.  You don’t want to be around her if she hasn’t gotten her Xanax.

So, this weekend she sustained a minor injury to her arm, including a small cut that someone mended with a couple little butterfly bandages.  Unfortunately, there was no corresponding paperwork, so all we know is that the band-aid fairy came around.  When Sharyn called me last night about it, she was seriously spooled up about it, and frankly it sounded more like my grandmother had managed to get into a fight with a weed-whacker.  When she gets spooled up, then I get spooled up, because I’m thinking, “Crap, now I have to go all MPOA militant granddaughter on them, and that isn’t going to solve anything either.”  Fortunately, I have a rule:  If it isn’t life threatening, I ignore the situation for 6 to 18 hours so I can cool off before calling and asking, “OK, what’s the story?” knowing it will end up being somewhere in between what I’ve already heard and what they tell me.

So today I call the charge nurse – she still has no info on what happened, but the butterfly bandages are already off and the cut is closed up and it was in fact, a very minor injury.  The Assistant DoN is investigating to see why no incident report was done, and I’ll call her back in a day or two to get the details.  I have my own suspicions that my grandmother likely whacked her arm on the night table, someone came in and patched it up and then got caught up with another resident and flat out forgot the paperwork, or it’s in someone else’s chart.  (I’ll not comment on the fact that there are only 9 people on her wing over the course of a weekend and it shouldn’t take that long to make 9 calls of, “Did you bandage Vynne’s arm?”)

But this is the type of stuff that is just going to be the death of me.  I’m going to be out there next month for a couple days and I am going to have to have a Very Serious conversation with them that will pretty much only consist of this:  Stop pissing off the advocate. Seriously, she gets pissed off, I get an earful and am left feeling like yet again, I am not quite measuring up to the herculean task that is being my grandmother’s granddaughter in her declining years.

Additionally, Phase II of “Cindy gets her life back” (yes, it’s just like Stella & her groove) is kicking off once I get back home, and I am going to be incredibly busy for the foreseeable future, not even remotely as instantly available as I have been, and certainly not at all inclined to have to be the voice of reason over administrative cock-ups.  I cannot put my life back on hold again.  I made that mistake for 3 years, and I will not repeat it.

Got the mailbox opened.  Maybe not with 100% of the paperwork, but at least with 90% + 10% acceptable-in-the-right-eyes paperwork.  (I didn’t work with the same person today as yesterday and I played on that like nobody’s business.)  On that triumph, I got the phone shut off as well, even though I did not have the account number handy, even though I was told that it was like, seriously, totally required.   (I *never* have the account number for the phone when I need it, cause CHRIST, I HAVE THE PHONE NUMBER!)

All this just makes me think it’s not about breaking the rules so much as working with people who don’t necessarily know what the rules are in the first place and who also think there is no reason you would lie to them in the first place.  Not that I just go about lying to everyone I encounter, but I have found that there are a few places where mild deception helps grease the wheels.

I truly hate lying.  I really do.  My grandmother’s decline has taught me that sometimes you need to lie out your ass, and it’s kind of OK as long as it’s for the greater good and not hurting anyone.  I remain truly unconvinced that I am not going to hell for it, but I get the necessity of it.  Still don’t like it that much.  Still don’t like that I am much better at fabricating pretty untruths now than I was this time 3 years ago.

And, here’s the rub:  I have a Durable Power of Attorney!  With pretty much every possible contingency signed off on by my grandmother!  I have the legal authority to Get Shit Done.   Given that she lives in God’s Waiting Room, you’d think the general populous would be more familiar with a DPOA, and yet… they all look like a deer in the headlights when I whip it out and try to explain that Granny ain’t exactly in a traveling way, and I have the legal authority to tend to her various and sundry stuff, such as her mail, or bills, or whathaveyou , and she is not going to show up at their front door wielding fountain pen to sign off on whatever it is I have come to request.  Because if she COULD come forth and harass them, she certainly wouldn’t in a million years need me to do it for her.

I’m still leaning towards wholly unqualified for this particular adventure.

– Unlike last August, this is a pre-planned trip, which is much better than the alternative.

– The weather will be sunny and in the 80s.

– It is a short trip with no holidays involved, which makes packing a matter of just tossing some wearable crap in a bag and that’s it.

– It is a short trip, period.  Less time for us to get on each others nerves.

– The hotel is wonderful and has an absolutely killer breakfast.

– There are several really good places to eat right next to the hotel.  (Kabuki and Yard House are on the must list.)

– If history is any indicator, the Detroit Red Wings will be staying at my hotel.

– No one expects me to sit around at the care center all day and watch my grandmother take naps.  (If she could juggle in her sleep or something, it might be different, but she can’t, so…)  This is a pleasant contrast to being expected to sit at her condo all day and watch her take naps.

– I will get the mail situation locked down once and for all via a UPS store, as USPS hasn’t exactly been up to the task with forwarding since everything went to hell in a handbasket.   (Mail to the care center is a no-go, and I still need her to have a local address, cause I am not going through the potential confusion of having tax documents print out thinking she lives in Virginia.)

The overly rational part of my brain chalks it all up to unfortunate coincidence and the ridiculous changing of the barometric pressure at this time of year.  The not-quite-as-rational part of my brain says, “Going to PHX is bad for you!” The smartest part of my existence which isn’t even attached to me says – “It’s the anxiety leading up to the trip that does you in.”  That smart part would be my brother trying to assure me I’ve not totally lost my mind.  (If you don’t have a brother to help you out in matters such as these, I highly recommend you get one.  I’m pretty sure there is a category on Craigslist for this.)

Seriously, I can’t remember the last time that I wasn’t sick either when my grandmother visited here, or I visited there.  (Same thing has happened to my brother as well.)  Invariably this has lead to my grandmother being more than happy to tell us that we were weak, lazy & pathetic and got sick on purpose just to get attention.  Yes, because I’d so much rather feel like total crap and have people saying, “Would you like a Ginger Ale?” than just happily going about my business without desperately needing to sleep for 24 hours straight.

Damned if I know why my body decides to betray me this way, but I’m very much over it all.  Seriously, I’m staying at a nice hotel with a pool and everything – I’d like to take advantage of it rather than sleep every hour I’m not at the care center…

*No matter how broken my grandmother’s brain may be, I never have and never will fault her for not knowing the date or day of the week without looking at the calendar.