Wednesday, November 20, 2013

Caught Between Grieving and Living...

Tuesday November 19, 2013

While I realize it's been almost 2 months, or maybe it has been, the time has just absolutely flown by.

This post is to update everyone - all over the WORLD - who have been praying for Mom (and Dad).

The last I wrote, Mom had 4 radiation treatments left, and we were going to begin to wean her off from the steroids. The tumor is aggressive and we were going to treat it aggressively. 

We stuck to that plan, Mom finished her chemo and radiation treatments on schedule.  We were hoping to begin a round of intravenous chemo as well - the chemo she had just finished was pill form.

She was also successfully weaned off of her steroids.

In the middle of September, she began having seizures.  Long ones.  These ultimately led to another admission to the hospital.  Thus began the balancing act of all of her meds.  Dad and her doctors had to balance her meds for her heart, her cancer, her depression, and now seizures.  Her platelets were low, and she had fluid buildup on the brain.

We got the seizures under control, got the meds all figured out, but with her platelet count so low, she was no longer a candidate for more chemo, or any other aggressive treatment.  So, we waited for her platelet count to come back up - we were still going to fight!

In the beginning of October, Mom was diagnosed with Pneumocystis.  Pneumocystis is a form of Pneumonia that greatly affects people with compromised immune systems - especially cancer patients.  So we had two weeks of more steroids and antibiotics.

All the while, Mom's tumor is still growing (we can only assume), at least, it wasn't shrinking and we are unable to treat the tumor because we are being sent on all kinds of rabbit trails (seizures, infection), and in the meantime, Mom is growing weaker and weaker. 

She can no longer walk without assistance - she uses a walker to get around.  She needs assistance with bathing, fixing food, using the restroom, etc.  She is sleeping more and more.  She cannot position herself in bed - it takes Dad or another person to help her get comfortable so she can rest properly.  An ever-increasingly taxing job to care for her at home.

When she was in the hospital for Pneumocystis, one of her physicians recommended Hospice.

The word.

Hospice.

I think hospice has a stigma - we all know what hospice really means.

But for those of us who have never used hospice services, the stigma may be unfair.

We met with a caseworker and decided to admit Mom into hospice care on October 14th.  We were hoping for some help at home with Mom on a regular basis - but we quickly learned that it would still be up to us to care for her - that hospice's focus would be on her comfort and making sure that she is comfortable and happy for as long as she can be.

Over the course of the next 4 weeks, Mom's meds were adjusted to give her clarity and freedom from "fogginess", shakiness and that feeling like she's going to "tip over".  Mom got stronger - much stronger than we had seen her in weeks.  We met some amazing hospice workers - and Mom made some new friends and connections.  The hospice personnel that we met and that worked with Mom were nothing short of angels.

We took turns caring for Mom, day in and day out.  Dad got the hardest shifts - the night time. 

We watched her have amazingly good days.  Days where she laughed, remembered most things from her life, and even some things from just the day before (which was nearly never at that point).  She was almost "speedy" with her walker, and the shakes were gone.

We also watched her have terribly hard days.  Days where she sobbed for hours - seemingly having a full understanding of what was happening to her.  We watched her try to understand what she was facing, what she was going to have to endure.  She would ask the same questions, having forgotten the answers she was given just moments before.

And then repeat the process the very next day.  We never knew until she woke up what kind of day it would be.

Over time, her appetite gravely decreased.  She began to walk slower and slower.  She struggled to position herself on the couch, or in bed.  She was seemingly more and more confused about simple things.  And this seemed to change daily. 

My Dad and I had a conversation on his porch just a couple of weeks ago.  It seemed eerie that she had been doing so well.  So well, in fact, that we were once again, cautiously optimistic about the near future.  All the while, we were very much enjoying the good days that were at hand.

And then this past Saturday, she fell.  After taking a nap, she got up, as she normally did, to use the bathroom before joining my dad in the living room, and she fell.

After hearing the "THUD", my dad and Aunt who was visiting rushed to Mom's room to find her on the floor.  Dad laid on the floor with her trying to assess the situation, to see what, or if she could move, if she could get up, anything.

While waiting for the hospice nurse to come, Dad dead-lifted Mom onto the bed, where they laid until the nurse finally showed.

An ambulance was called and Mom was taken to the hospital.  After tests and scans, it was determined that she has compound fractures in at least 3 of her vertebrae. 

At first we were told that she would be in a back brace for many months.  Well, knowing she was in hospice care, we weren't sure she had "many" months.  And how are we supposed to care for her if she is predominantly immobile?  And what kind of quality of life is that for her?

Well, her doctors had a solution that would all but eliminate her pain - at least for now.  So, yesterday she had surgery on her fractured vertebrae.  I believe she will still need a brace, but not for nearly as long as she would have without the surgery.

The answer to our questions about how we care for her now was glaring - staring us right in the face.  A hard reality that I'm sure will take some time to "sink in" and "forgive", at least for me.

Mom was admitted to an inpatient hospice care facility just yesterday.

Dad talked with her at the hospital and told her that she will most likely never return home, and that this is the place she will find her final rest.

He said she took it well, and understands that we can no longer care for her at home on our own.  He said she understands that it was the right decision to make.

That doesn't make it any easier to handle.

I can only imagine the feelings going through my dad's mind - I won't even go there.

As her daughter, I feel helpless as well. 

I haven't had the opportunity to visit the facility yet, but Dad says it's beautiful.  I've read Facebook comments from her sisters who received texted pictures of Mom from Dad with Mom's big smiling face. 

That last sentence takes me to another place - a place that I'm not ready to go yet.  I'm going to focus now on her face, her smile.  And I will do my best to visit all that I can, to bring her cheer, and as much happiness in what time she has left.

The holidays are quickly approaching.  She loves the holidays.  I want to be with her for the holidays, and I intend to figure out ways to bring the holidays to her. 

These next weeks, months, or however long we have left will be the most trying. 

Please continue to pray for peace - for Mom and for Dad.  Please wrap your arms around them so they know they are safe.

Thank you for your continued support through all of this.  As things progress I will do my best to update.