End of Days: Who Decides?

Wrote this entry from my Mom's room at the Skilled Nursing Center but due to the imminent struggles we went through with staff and in trying to do what was best for Mom without any real concern by staff until the early morning hours of the last day I forgot I'd written anything during that most trying time.


We were called two nights ago and told by the floor Nurse Manager my Mom's death was imminent.


My daughter, who's a POA along with my son and myself, was called. I wasn't. He wasn't.


Reasons given? Motling, swelling of hands and feet, lethargy, additional confusion.


Reasons we had to find out ourselves. No one came to us. As always, we had to "seek and find" the "right person" who was "still on duty" who even knew what was really going on.


Mom had eaten half of lunch and a full breakfast; she hadn't eaten dinner/supper. Or so we were told. 


The call came in at 6:44 PM.


We hadn't been able to visit Mom as we'd been doing on a daily basis since Saturday; this was Wednesday. Sunday a huge snowstorm, historical in its amount of snow dropped and followed by temperatures well below zero closed almost everything on Monday. Snowplows could not get through, icemelt was not working.


It was the strangest snowfall I can remember; so light it seemed to be like the kind they used to use in Hollywood picture making (we saw it one time on a trip to the Coast) for their winter scenes. The problem was exceptionally high winds blowing drifts and causing anything shoveled to be blown back in your face and onto everything but where you wanted it to go.


Last night was Night Two of our Vigil.


It's not my first time waiting for death. And, it's not my first time watching over someone who's dying.


Today marks the third anniversary of the burial of my husband.  He died on January 5 and we said our final goodbyes on January 10.


The weather was quite different then. It was cold but not days of sub zero temperatures.


You didn't need to wear layers and layers and protect yourself with gloves and hats so your body wouldn't get frostbite.


Admit I lost it last night. Was it the "anniversary" drawing near?


Was it the reminders about the challenges we faced then with so many questionable medical decisions being made by "professionals" that led to his death and seem to be leading to Moms?


I believe it was and continues to be the failures of medical facilities to provide choices through providing accurate information and instead to make decisions for their patients and families.


Until I questioned procedures I'd observed in place.


Until I realized these procedures were in place.


Mom was denied food and water. It wasn't offered, it wasn't provided.


When I noticed no food or water was being brought into her room for her but a tray of "snacks" and drinks was provided for us, something inside of me felt a decision to "let her die" had been made by the facility.


I've seen it before here. I've felt it in the air.


I asked to see the notes regarding the call we received. Asked to see what Dr had determined Mom was "dying".


Just a few weeks before I'd asked the same question about Hospice when a call was received. The same Nurse Manager called and "suggested" it was time we did Hospice.


Mom's health had been declining. We'd seen the possibilities. We'd just been to the ER and a hospital admission. Daughter and I'd talked and we'd begun investigating services. We'd even talked with the Administrator of the facility.


We were told by Mom's facility they did not allow any outside Hospice Services to provide for anyone living in their locations. We had no choice, according to her.


NO CHOICE? NO MEDICAL CHOICES? No ability to determine Mom's medical care was provided by someone she or we as her POA's chose?


NO COUNSELING. Facility has a "new" Social Worker for the floor. Have we met her? NO. Has she "dropped in" to see how we're doing/how Mom's doing? Not while we've been here. Has she called? NO


WE CHOSE NOT TO ENTER INTO THE FACILITY'S HOSPICE PROGRAM SO NOW WE'RE BEING TREATED, IN MY OPINION, AS NOT AS VALUABLE AS THOSE WHO DO AND CERTAINLY NOT A "RETURN ON INVESTMENT".


There have been several deaths recently. It's the time of year; it's the weather; it's many with advanced age and advanced medical conditions. I get it.


What I don't get is how people who don't have family are dying alone. Surely they can see when someone who's been struggling with many challenges is losing more than winning their battles?


ISN'T THAT A VIOLATION OF MISSOURI STATE LAW, not to have the choice of which Hospice a family or individual wants to us? 


After all, Rights of Individuals state residents have a right to choose their own Dr. Residents have a right to state their own wishes regarding End of Life care -- which, by the way, Mom did not want to be starved to death as it appears is being done; true, she didn't want IV feeding but days of not offering even a drop of water or a small amount of liquid was not her idea of a "good death".


So begins another day.  What do I do?  Do I simply sit and wait. Let the world go by and just "agree" with this NURSING JUDGEMENT?  That's what we were told was done by the Nurse Manager, an LPN, by the way, not an RN and certainly not a DR.


Momma, for your sake and that of all of us coming after you, I will raise my voice to challenge current practices that appear to violate Senior's Rights.


You modeled how to care for family. You showed me women have rights even when you lost many of yours because you were a divorcee in a time when women's right to many things was totally dependent on being married.


I will hear your voice in my ear and stirring my soul to go forward.