Saturday, February 20, 2016

Clearing It Out.....

When my Mom died ten days ago, the nursing home called immediately to notify me and to ask if I wanted to come up and sit with her and say good-bye before they called the funeral home.  I told them I would be right there.

Naturally, five seconds later Squeaker's school called to say he was ill, needed to come home, and they couldn't reach his parents, so could I come?  I had just brought hubby home from having his stitches out not ten minutes earlier and he was in no condition to wrangle a toddler into a car seat, so I told them I had a bit of a family emergency going on but that of course I'd be there and hung up the phone.  And cried. 

Fortunately The Squeak's parents went on break at work and got the messages that they were needed, and called me to let me know they were on their way to get the little man.  So after calling my brothers to let them know, I left for the nursing home.

I've been around a lot of death.  I've seen the results of struggle - I watched my Dad doing it.  But I can say with a certain degree of confidence that Mom let go gently.  I sat in her room with her, I don't know how long.....long enough for the first storm to pass and the peace to settle over me.

As I was leaving, the staff asked if I wanted to take her things with me? 

Well, crap. 

I was doing pretty well, but I couldn't, just couldn't! go back into that room and collect what little was in there.  Not with her still there.

I asked if I could come back later, and they said that of course I could: They have a storage room for just this reason, and I could come back any time.

Today was the day.  I drove over and asked, and then spent the next half hour watching with some bemusement as they struggled to locate my Mom's things.  They do, indeed, have a room, but they recently moved it to a new location.  Her stuff was neither in the new nor the old storage area.  So the very kind gentleman from housekeeping hiked up to her floor with me and the search continued.  It was finally determined that her things had been placed in the social worker's office for safekeeping, and this needed a high-security key to be opened.  By the end of an hour we had it all located and loaded in my car.  (I can't get the money out of her 'bank account' there because the 'bank' is only open about 4 hours a day on weekdays. I'm still working on that.)


It came down to so very little.  A couple of knitted afghans.  The pretty handmade pillowcases that Hospice gave her.  The new TV I bought for her room there.  The picture of Citygirl, Mom and me from the wedding last summer.  Her phone and her handbag.  She didn't even have her own favorite nightgowns and robes because the hip fracture made them impractical. 

When I was a little girl, I was never allowed to touch my Mom's purse.  It was private, her own, almost sacred; and we were never, ever allowed to open it.  But over the past five years I've been in and out of her purse and wallet, paring down the contents for her safety (taking away credit cards and checkbook) and ease (adding appropriate toiletries as needed).  By the time she got to the nursing home her wallet held only her pacemaker and heart valve information cards, some loose change, a picture of her youngest grandchild, some Sweet-n-Low and a pen.  I pulled them all out today to put away, and found, tucked inside, her nametag from her last job. 

Every single item made me weep.  Representations of her survival, her family, her struggles, her joys, and her very identity in a pile that fit easily in the palm of my hand.  When I was a child I thought the secrets of the Universe must be in a mother's purse. 

I may have been right.


Monday, February 15, 2016

Saying Goodbye....

This morning my brothers, some very dear friends and family members and I went to the top of a cold, windy hill and laid my mother to rest next to her brother. 

We've lost both of our parents, seven months apart.  We're officially orphans, I guess. 

But there has never, in my memory, been an event involving my mother that didn't include some laughter, so when we got to the gravesite and turned to look down the hill, we spotted it:  A BIG yellow smiley face graffiti'd onto a big tree a just  few feet below the foot of her grave.


I'm tempted to think she did it herself to lighten things up a little.  That's the kind of sweet kook she was. 

The problem with dementia is that death only makes obvious the separation that has been in place for years already.  The sweet, funny, confused person at my dinner table for the last couple of years was not my Mom, not really.  I've missed my mom BEING my mom for almost six years now:  That's how long I've been HER mom.  But I miss that confused little old lady too, a little, since she was all I had left.

My brother did an absolute amazing job of capturing her life in this video, set to his own music:


Monday, February 8, 2016


Babygirl has tried just about everything  out there that there is to try for migraine.  The few things that haven't been tried are the things she can't tolerate, things that don't mix with her transplant meds, and things that are bad for her kidney.

We are left with Botox.

At one point she had nerve blocks in the back of her head to stop the headaches.  They worked (for 24 hours, and then we were admitted to the hospital for a few days).  The memory of the sedative, the injections and the hospital stay are all balled up together for her, and until recently, she's been reluctant to try anything else that involves shooting needles into her head. 

But at the beginning of December, she took a look at how miserable her life had become again (what IS it with late fall anyway?) and I called Neurology to tell them we were finally willing to give the Botox a try.  I called early on a Friday morning.  (My phone has an alarm set that goes off every day at 8:30 AM to remind me that the phones are open at Neurology.  If I call later, they don't get back to me for a couple of extra days because I 'called so late in the day.' It actually went off during a neurology visit once and I explained what it was for to the doctor.  He was surprised, and told me I didn't need to do that.  Um, no. Anyway....) I was told: 1) It takes a couple of weeks to get insurance to authorize Botox, so they may or may not be able to have it available for her upcoming December 17 appointment. 2) The doctor had the day off but would be back Monday and they would address that with him then. 3) She needed to have failed at least three medications and have headaches at least every other day to qualify, so we went over all of that and she certainly qualified, so there should be no problem.

Ordinarily, knowing this department as I do, I would have made a follow up phone call to nag them about it.  But, life....

Mom fell and broke her hip.  Whether she would survive this was uncertain.  Plans had to be made for what to do next, and I had to go on day-to-day mode.  She stabilized enough for me to risk heading for Philly for our appointments.

"What call?"  Says neuro.   W. T. F. 

I recite back what I had been told, and it was agreed that it was a lot of detail for a call that apparently never happened.  But, hey, water under the bridge, right?  They are going to start Right Away and put in an Expedited Request for the Botox.  And hey, it might not have gotten here for this appointment anyway, These Things Take Time.

I'm thinking to myself that these people couldn't find their gonads with both hands on a warm day.

The next two weeks are crazed. Christmas. New Years'. Mom is fading, but slowly, and we need to find a nursing home and get in a application for Medicaid.  I need to take her house apart as if she's dead even though she not. My brothers come in and are blessedly helpful in sorting through family photos and artifacts.  Curlygirl steps up big time to help unload furniture and cart clothing and other small things to the church for the rummage sale.

Early January I call our insurance.  On the  January 4th (three weeks after our visit?) Neurology had reached out to them to see if they needed authorization to physically do the Botox injections: They do not.  But I couldn't see that they had actually asked for the Botox itself.  Our specialty pharmacy hadn't received an order. 

The next day I put a call in to Neurology and asked if there was some way I could help.  Later that day I got a happy call from their coordinator letting me know that they had FINALLY identified our specialty pharmacy and now they could actually get that order placed!

There are times when momentary speechlessness saves us from committing felonies.

"Why didn't you ask ME what the specialty pharmacy was? We get Babygirl's transplant medications from there. Their number is in my phone!"

Would you like a magnifying glass to find those f****** gonads?

Six days later they had the Botox.  Six. Days. Later.  If they had had the right information, paid attention to the phone call.....they would have had the Botox on December 8th, latest. 

The copayment on the Botox is $300.  If they had gotten it LAST year, it would have been FREE because we had already met our deductible. 

Once they got the Botox, they had to look for the 'next available appointment' for the injections.  We leave tonight, for tomorrow.  Two and a half months.  It makes my chest hurt with rage to even think about it.  These folks work at the finest children's hospital in the USA, dedicated to easing the suffering of kids and my kid has had pain nearly every day with an ER visit for headache thrown in for good measure because of this. 

Maybe they need a microscope.


Thursday, February 4, 2016

Four Years.......

Four years ago today they installed someone else's kidney in my Babygirl.  Dialysis is far behind us. 

The day-to-day struggle remains real.  Last week she had three doses of pills left in her pill box, forgotten due to whatever circumstances were going on at the time:  Her dad's surgery, her headaches, my mom's ongoing decline.... It's hard to pin down.  This week was better.

But today is a banner day, a celebration not only of her ongoing survival, but also of the arrival of our newest family member:

Niklaus Castiel Sanchez, JuJuBee's newest arrival.  I'm still at work, and I'm going to have to go home first and see how Hubby is doing, but then I am going to see Boo and Sunshine's brand new baby brother, and I'm gonna love him and hold him and squeeze him and come up with some ridiculous annoying nickname that will stick with him for the rest of his life.