Monday, July 27, 2015

Three AM Friends.....

In our lives we are given only a few friends that we know with 100% certainty that we can pick up the phone at three in the morning for whatever reason, call, and they will be THERE.  Whether it is a shoulder to cry on, someone to go with you to the hospital with an injured child, or help with hiding the bodies (well, theoretically....) there are, perhaps, at any given time in your life only one to three people you could call on and not feel at all bad about it, knowing that they could, in turn, call you.

Last week I while was out of town for our annual mission trip.  My good friend B (we met twenty-six years ago in an exercise class for pregnant women when I was carrying Citygirl) came into town from Florida to help prep for Citygirl's wedding, not realizing that I was gone.  She stopped by the house, ran some errands for Citygirl and made plans to return this week, using the extra time to catch up with her many other local friends. 

Except, she didn't.

Sometime Friday she pulled her car off the road and called 911 for assistance.  We don't know why.  They responded quickly but by the time they arrived it was too late to help her. 

And like that, she is gone.

The police needed someone to identify her, and came looking for me, which was how Citygirl was notified of her death.  Another of her older friends was located for that sad task, sparing Citygirl that grim necessity.  Citygirl sent me a text instructing me to call her when we came into cell phone service range (Central Appalachia is generally not on the grid).

It was a sad ride home.

B was the kind of person who made friends in the grocery line.  She was kind to everyone. She was over the moon about her surprise pregnancy at the age of 42 (her first and only).  She cared for her parents until they died (just a couple of days apart) and came and cried on my  shoulder when they did. She opened her home to international students, friends, family and strangers.  She's the one who drove me to Philly while I did dialysis with Babygirl in the car (Week Twenty-four: More Gratitude....) when she herself had just driven over 1400 miles in the previous few days.  I helped her clean out her aunt's house after her death.  She offered to come and stay here to help if I needed it as my Mom declined.

She always put her whole heart out where it could be seen.  A true-blue three-AM friend. 

There is a new bottle of Irish Mist in my fridge.  I found it yesterday when I was looking for some vodka to mix with lemonade at the end of the day.  She must have dropped it off while she was here, planning to come back for an evening of drinks and stories on our new deck.  I wish I'd been here to have that drink with her. I wish she were still here to have that drink with me.


Tuesday, July 7, 2015

Twelve Hundred Miles......

It's been a long time since I made the Philly trip twice in one week (this time once for doctors' appointments for Babygirl and once for a family party), and I'd forgotten how tiring eight hundred miles of driving in one week can be. 

As I was recovering from the return trip on Sunday, I got a call from my stepmother.  "Your Dad is back in the hospital with pneumonia and he is not doing well at all....."

It took a couple of minutes to determine how bad she really meant he was, and to understand that what she really needed was help in deciding for sure what to do next. 

I called my brother. 

Bless him - despite the fact that we are both desperately busy right now, he with moving into a new home and we with preparing for the rapidly approaching wedding, he agreed to come along and do the driving.

It was after 7 PM when we left, and I fell asleep for over half an hour somewhere near the end of the drive (he actually didn't notice.  He continued to talk and he says I continued to respond.  I'm am quite glad I was not driving), and we arrived after 11. 

In the morning we discussed the situation with our stepmother:  Despite the fact that he was 'doing well' a week ago, 'doing well' was now limited to periods of being alert but disoriented, and being unable to eat solid food due to choking, being unable to hear or see, and of imagining that he was hanging out in Niagara Falls with my brother or that I was working in his nursing home.  On our last visit, less than three months ago, he had begged to get out and asked to die.  Currently he was desperately ill, not responding to antibiotics with another trial of antibiotics being contemplated.  We discussed her spiritual concerns, and her sense of guilt and helplessness in the face of his overwhelming decline.

We went to visit. 

When we arrived, he was unconscious and struggling to breathe.  His temperature was over 104 degrees F and he was under a cooling blanket because he wasn't responding to Tylenol.  He'd been given morphine to ease his breathing. 

We stayed for three hours.  His temperature came down and his breathing improved a little, but he never awoke or responded.  We talked with hospital staff (my brother remembers everybody from 30 years ago when we lived there, and everybody remembers him.  I am far less memorable!).  We shared memories.  We talked quality of life.  We discussed choices.

We gave him permission to stop fighting and let go.  We gave her the same permission and advice.  At this point even more antibiotics probably represent 'extraordinary measures' to keep him alive and he probably wouldn't approve; and in the end, they won't matter anyway.

And we came home.

I won't be able to be there when he dies, and I feel......horrible. 

I did what I know he'd want: I came home to my family and started doing what needed to be done here.  But...I want my Daddy.  I'm almost 60 years old, and I want my Dad.


PS At 5:30 this morning, he went home.

Tuesday, June 30, 2015

"When Do You Not Have to Worry?".....

A few months ago a church friend asked me, "So when do you not have to worry about rejection anymore?"

I told him the stark truth:  "When this kidney dies and she goes back on dialysis.  Then she goes on the transplant list again, and if we're lucky she gets another kidney and we get to start worrying again."

He was stunned, as are most people.  "Transplant" and "Happily Ever After" are not the same thing.

That being said:  We went to Philly for rechecks at nephrology, neurology and gynecology Monday and Tuesday (a massive accomplishment, getting all three in a two-day spread!). 

Gynecology is easy:  Cramps?  Nope.  Good - carry on, no changes, see you next year.

Neurology was a mixed bag:  Yes, we should increase her medication a little more, but we need to clear it with nephrology because it is causing some kidney side effects (increased acid), so we'll get in touch with them and then get in touch with you.  Make an appointment for three months.  (Well, except that if history is any predictor, they'll forget to ask and forget to call; and I've already checked and there are no appointments available on the one day Babygirl doesn't have school near the three month mark unless I speak to the special scheduler, and gee, she wasn't available.  Sadly, it's CHOP Neurology in a nutshell.)

Nephrology was just tough:  Creatinine is 1.3, up again after coming down briefly.  Calcium is up for no good reason (and believe me, there is NEVER a good reason).  Too much acid (neurology's fault, and fixable, increase the bicarbonate).  Neutrophil count abnormally (but not quite critically) low. There will be a team meeting to discuss what to do next. Increasing the mycophenolate is an option that has been being discussed for a long time, but concerns about her neutrophils have been the opposite side of that coin, so it's anybody's guess what's next. The word 'biopsy' came out, but they JUST did one, so I'm not sure what the point of that would be.  They agreed that increasing her neurology medication is not a problem and will call and tell neurology, so I can call and bug them later.

So since the appointments were spread over two days, and the first day ended at noon, we got in the car and drove east for an hour until we ran out of land.  Babygirl has never seen Atlantic City, and since we go to Bethany Beach (I think they have about the world's smallest boardwalk LOL) she's never really seen a Big Boardwalk town.  We walked about three miles of boardwalk, about three miles of sand, visited Ripley's Believe it or Not Museum (hokey but fun, and better than taking a 15 year old into the casinos!) and had dinner on the beach.  It was a nice break for the two of us, even if the news wasn't the greatest.



That moment when...

You are driving and you look ahead and see the kind of cloud coming down that makes you swivel your head in all possible directions to check for tornadoes, even though there isn't a bit of wind.  When, moments later, without transition, you go from dry road to full-bore downpour. 

That moment when...

You are afraid to look away from the road long enough to find the emergency flasher button so you just palm the dash until you hit it.  When you realize that a moment ago there was a truck in front of you, one behind you, and one next to you but you can't SEE any of them.

That moment when...

You can't recall if you are on that section of this highway to hell that has a shoulder or if there is a concrete barrier next to you, and you can't see either one.

That moment when...

You realize you've been saying, "Oh God, oh Jesus, oh God, oh Jesus..." over and over; and it is without a single doubt the sincerest prayer you have offered up since the last time your child was suffering in a hospital bed.

That. Was. My. Day.


Wednesday, June 24, 2015

Unexpected Gains.....

Last night I spent the usual 10 minutes struggling to get my Mom to agree to let me test her blood sugar after dinner so I could give her her insulin.  When she finally agreed, the result was higher than I expected.

"371!  Holy cow, Mom!  What were you eating all day?!?!?"

"371?  That can't be right! Let me look at that!" (She looks at it, the tiny little hand-held screen.)  "There is something wrong with that machine.  Why, that means I've gained over a hundred pounds today!"

Brief pause.

Babygirl and I started laughing so hard our bellies were still sore this morning.  It took WAY over a minute before I could gasp, "MOM!  It's a glucose machine, not a SCALE!"

It took HER way over a minute to register why we were laughing.

Ah, life at Dementia Central.


Friday, June 19, 2015

Gypsy, Farewell......

I've clearly been AWOL for some time!  You can thank Squeaker.  He decided to gently push my laptop off the edge of the table.  The landing wasn't pretty.  The computer is insured but due to a series of errors and travel I haven't got it back yet. 

I went to Walla Walla for Citygirl's graduation from winemaking school (more on that in another post or three or four), leaving here last Wednesday evening and arriving home late on Monday night.  My mom's friend Em came to stay with her while I was gone, helping Hubby keep an eye on her. 

When I came in to say 'hi' to mom, Em pulled me aside.  "Gypsy doesn't look well.  She's been throwing up, and her belly feels a little full." 

Mom has always two cats.  Gypsy was found at a local shelter after the first big flood here in 2006.  She was estimated to be about a year old and had clearly just had kittens, although the kittens were not found with her.   My sister-in-law spotted her, recognizing her for what she was:  A purebred Ragdoll, something my mom has always wanted but couldn't really afford.  They are lovely cats, long-haired, blue-eyed, and similar in coloring to a Siamese; but sweeter in personality, very affectionate.  A couple of years later when my Mom's (then) second cat died, I found Emma on Freecycle.  Emma is orange and white, also long-haired, a clingy, needy little thing perfect for an old lady's lap.

I took a look at Gypsy.  Her belly WAS distended.  I called the vet and made an appointment for yesterday morning.

When I loaded her into the carrier, I noticed how dry her fur looked - not at all her usual shiny, well-groomed self.  I found myself feeling a little desperate - hoping the cat would at least outlive Mom.

The 'patient' ahead of us unexpectedly didn't make it out of the vet's office.  Both the vet and the pet owner were clearly distraught.  I said to the vet as we walked in, "I hope this isn't another one."  She shot me a look, knowing that I am a doctor and wouldn't make such a comment in jest, and said, "It's really too bad I don't drink, when I have days like this."

It turns out that some breeds of cat (Ragdolls and Siamese among them) can develop a form of autoimmune peritonitis.  Gypsy was severely dehydrated, belly distended, and there were swollen glands and a good-sized mass.  "She needs to go to heaven."

Ugh.  We moved to the surgery, and she gave her some ketamine (Gypsy managed to bite her - the only evil temper I've ever seen her display), and a bit later she came back to administer whatever it is they give that finishes the job.

She's not my cat - I could have just left her there, I suppose, but for the sake of my Mom and the love she has borne for her kitties I just couldn't. We owe our pets tremendously for all they give us, and they ask so little in return!  Babygirl and I came home with the empty carrier, and I still haven't told Mom. 

The problem with having dementia is that bad news is intense, horrible, and it makes you cry, and then you can't remember why you are crying and have to ask and be told again like it's the very first time.  I can't imagine that she'll remember.  I guess what I'm hoping is that she just won't notice she's missing, since Emma is always all over her and Gypsy was more of a come-and-go sort of soul anyway. 

Meanwhile I am grieving for her, not because I miss her cat, but because I miss the woman she once was.


Friday, May 29, 2015

Springing an Old Lady.....

Getting an old lady with decent insurance out of a nursing home is about as simple as infiltrating the KGB unnoticed without speaking Russian. She's too confused to be safe, too weak, too....what?  Seriously folks, she's walking, using the potty, and asking for her kitties.  Let her go.

So today, with the help of an understanding doctor (and an agreement to set up a spy cam so I can check on her from afar) I got her sprung.  Here's how it went:

After a week of several phone calls daily the nursing home agreed that she was ready to discharge to Hospice care.  The agreed-upon time was 11 AM.  Hospice would arrive at home at 1 PM.  Yesterday Babygirl and I spent a few hours trying to reconfigure Mom's bedroom (which is also her dining room - she can't climb the stairs to the bedrooms and has had a hospital bed downstairs since she moved in two years ago).  The current arrangement made her walk circles around her dining room table, dragging her oxygen cord with her.  Once it got wrapped around a couple of times she'd forget what to do about it and just take it off.  When she fell, she didn't have her oxygen on for this reason. While I was putting the finishing touches on this project this morning, the nursing home called and asked if I could come in a little early for some paperwork.  Of course. I knew there would be paperwork!

It turns out that the 'paperwork' they needed done was the required stuff that allows them to ADMIT her to the nursing home in the first place.  Somehow, in the three weeks that she's been there, no one asked me to get that little detail taken care of.  So I spent half an hour admitting her to the nursing home, and then went upstairs to do a half-hour's worth of paperwork to get her OUT.  It put us a little behind schedule.

She then got loaded into a medivan and brought home.  Two skinny guys hoisted her up the back stairs in a wheelchair, transferred her to her walker, and in she went to be with her beloved kitties. 

Hospice arrived, right on schedule, and we hit the rough patch I anticipated.  They outlined the purpose of Hospice:  To make her comfortable, but to not do any diagnostic tests or life-prolonging treatments.  "Hey!  Wait a minute!  You make it sound like you expect me to DIE or something!" says Mom. 

"Everybody dies, Mom.  You have at least four different diseases that can't really be treated.  We aren't taking anything away, but we aren't adding anything new because the new stuff would probably kill you faster than the diseases you have.  Besides, Hospice isn't a contract that says you HAVE to die in a certain period - you can take your time about it!"

Only in my family can you say something like that, get a laugh and not get sent straight to Hell.

The winning argument was this one, though:  "I need help to keep you from going back to the nursing home and this is the only way I can get it."  Done. 

So she is settled, I get someone to come in twice a week and shove her in the shower with more help further down the road when we need it, and it's covered by Medicare because it's Hospice.  It's sad that you have to be officially dying for your insurance to help your family keep you at home.

So, in spy-code, "The Goose has landed."  Moose and Squirrel are a whole different story.