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.


Sunday, May 24, 2015

Sprucing Up.....

For those of you who don't know, we have a wedding coming up this summer!  Citygirl is getting married on August first, and the house will be buzzing with people. 

This means, of course, that we need to make the place look nice. Not that it isn't nice.  But nicer.  Party nice.  You know what I mean.

Expecting an upcoming invasion makes you look around with different eyes.  Clean and tidy somehow no longer look 'fresh.'  So we are upgrading a few things.

Yesterday I priced out new kitchen cabinets.  Redoing cabinets sounds extreme, but our current 'look' is cobbled together and was never meant to be permanent.  We were going to do a full re-do years ago, and then, well, life happened and we just got used to looking at the mismatched cabinets and paid for dialysis and got on with life. 

I came home with the designs and the prices and showed them to Hubby. 

"Wasn't it a lot cheaper to do the other side? That kitchen is twice as big and it cost a lot less!" 

True that, sweetie, but that was because the insurance company paid for most of the cabinets because we had that little fire, remember?  (It was me.  I accidentally set the kitchen on fire.  I put it out, too.)

Thoughtful silence.  Then, "Honey, you need to set the kitchen on fire." 

LOLOL.  I'm not sure they'd buy that a second time.


Wednesday, May 20, 2015

The Bite of Reality....

Clinical objectivity can really only take you so far in your personal life.

I had a meeting with the nursing home staff yesterday afternoon.  Mom is supposed to be there for a quick rehab stint - recover her physical strength and scoot back home to her beloved kitties so she can continue to sit and watch the jewelry channel (not sure what the attraction is, but it's what she watches). 

The nursing home staff do not feel this is going to happen.  Physical and occupational therapy feel that although she is not TERRIBLY weak, she isn't really very strong either.  She has no ambition or drive to become stronger. She doesn't really make any spontaneous attempts to get moving on her own.  She doesn't want to get up and get dressed, and personal hygiene is poor. 

(Um, well, none of this is a particular surprise to me.  Even when my mom was working, if she had a day off, she stayed in her nightgown all day.  Remind me not to get in this habit - it apparently makes nursing home staff think badly of you.  And I've known for two years that getting my mom into the shower is torture, and don't talk to me about her nails.)

Furthermore, they are concerned about her level of confusion.  Her overall in-and-out orientation is a risk.  Although she's never been a wanderer, and she's never ever turned her stove on (the benefits of being ambition-less, I guess), what if that changes?  And she remains, in their opinion, a fall risk.  A fall is what got her in there, and another could happen.

So they suggested three things:  1) Keep her permanently placed there.  Her insurance will cover six months and then we apply for Medicaid.  2) Take her home and send her to Granny Day Care at $70/day (not covered by her insurance, that's $350/week, $1400/month+ when her entire Social Security check is less than $1300) and keep her in sight at all times when we are home with her, including at night.  3) Hire full-time aides to watch her ($13 - $25/hour, also not covered by insurance, making Granny Daycare a bargain by any standard).

And the bottom line on all of this:  Mom is dying.  She doesn't really understand that she is dying, but she is, and she wants to come home to her kitties.

The reality of that brutal, dark truth hit me right between the eyes in the middle of that meeting.   

I have to say that my response earned the respect of my younger brother when I told him about it:  "Stop bringing her meals into her room.  Food is her biggest motivator.  Make her walk to the dining room to get her meals and you will see her get stronger pretty fast.  Work with PT to get her to be able to go up and down four steps - that's what I'll need to get her into the house. Meanwhile I'll call her doctor and see whether she qualifies for hospice services or not, and I'll see what we can set up in terms of family, friends and monitors to keep her safe at home."

She's no more confused now than she was three weeks ago.  If she falls, she falls.  She needs to be home.