I stare at the blinking cursor, fingers on the keys, not sure where to even begin talking about this nightmare. The knot in my stomach and pain in my chest don't lessen with every ring of the phone...and the more information I am told, the tighter the knot becomes.
The past fifteen days have taken a toll on me and my family and the pain of it all is no where even close to being done.
My sister is very ill.
Honestly, ill isn't a strong enough word. She's terminal. All that she was is gone...slowly being eaten away by an aggressive Glioblastoma in her frontal lobe. Discovered a mere two weeks ago, but lurking throughout the neurons of her brain for who knows how long.
Her June seizure at work was unlike any that she ever took so long ago - life flighted to the trauma center serious enough- ...yet the depth of presence of anything growing went on without notice, because they looked at the seizure as simply something common in someone who had seizures as a child...and they only did a CAT scan that looked for fractures. The MRI revealed the truth now.
Five months later it has shown its strength, and size, and the results are devastating.
The team in charge of her care talk about what to do, to extend her life. They finally did a biopsy on her to confirm what they expected, and to grade it. It appears to be either a grade 3 or 4. The results of the frozen specimens will give them more clarity.
They had their TUMOR board meeting to discuss the course of action and have decided to use radiation AND chemo (pills 2-3 times a day) to help shrink this invader of life. Steroids currently are allowing her to communicate some.
But they want to do the treatment as an outpatient. So, what to do with a single person who lives alone who, and because of this condition....cannot remember to eat, take medications, and do regular life functions...because she is constantly tired and sleeping. Which is how she ended up in an ER.
The treatments will cause side effects...one of them being seizures.
Living alone? Not very practical.
Getting to the treatments?
We as a family thought that if she could stay in a skilled nursing facility during the treatments, we could be sure that all of her needs will be met.
WRONG. She is only 54. She does not have MEDICARE. If she did, she would be welcomed with open arms.
As it stands, if you are not old enough for Medicare, unemployed...with not so great insurance, you are not acceptable.
I was told today that because the Radiation is so expensive, the insurance will not cover the nursing home, her other meds, her Chemo pills, nothing. And the nursing home declined taking her. They said, "it's like being upside down in a Car." And no nursing homes in the area will take her for the same reasons.
What...the Hell. They said the expense of her being there will not be covered by any state aide help making her stay there for a time a WRITE OFF...loss...and they will not do it.
As a way to console us, I was told that if she can communicate, and we can get her to DECLINE treatment, DECLINE.... as it gets closer to the END, they would welcome her in via HOSPICE, and they would make her comfortable for her last days.
Yes, they would take her then.
Look up end days with this cancerous brain tumor.
There is NO comfort to come.
It didn't matter that she has a home, car, anything of value. I was told that I could never sell it fast enough to get the money....WHAT?
I thought nursing homes lien homes for payment? As soon as my father in law hit day 101 for his short term rehab (before coming home) This place asked for the deed to his home. He paid out of pocket for those days extra he spent, before going home.
Where did the compassion for human life go? I am not saying that the nursing facility should lose money or not expect a payment. The state sets the level of reimbursements to be made...and it is up to the nursing facilities to authorize admittance and today, I saw where they stood. They looked at her chart, and deemed her unworthy.
They will let her suffer at home, so they could make their money in her last days.
What if her last days don't come quickly.