For me, the LPN, the Head Nurse on Mom's floor, called and wasn't looking for a conversation, wasn't looking to provide information. Direct and to the point.
Shock and awe. Unexpected in its announcement.
We'd missed visiting Mom for a few days; horrible winter storm; car was out of commission; temperatures dipped so low our old tires couldn't take it so we had four flats.
AAA told us it would be at least 24 hours and possibly 48 hours before they could come.
Once again we felt the heavy weights of life pressing down faced with not knowing what to do, where to turn.
Family? None around. Friends? Since husband's death those numbers had dwindled.
Just what we didn't need -- replacing four tires when we'd just built up a small emergency fund. Oh, well, this was an emergency; it's just that eliminating that "safety net" pulled yet another small security away and out from under creating more stress and concern.
Daughter and I passed the LPN who had called us on the phone as we walked into the facility. She was walking out, leaving for the day.
We thought she would stop, talk with us and help us through this difficult time.
We thought someone would approach us, meet with us, go over Mom's condition, their observations and above all, a Dr's report generating this call to come, of imminent death.
She paused when we called to her. She said very little, only responding to our approach and restating how Mom's time had come and it was good we were there.
She didn't take time or get anyone to go with us, to explain to us what had happened, what was going on, what to expect or what could be done.
In the hospital, when my husband's death was imminent, we had compassionate, caring conversations with a Doctor who attended him. Why should this be so different, this "medical facility" just a step down from a hospital.
Why do we accept having Long Term Care, residential facilities that are not mandated by law to provide educated and trained personnel round the clock who have training in communicating with residents and those directly in their lives -- and deaths?
Death doesn't come by appointment or any specific scheduled time just as falls, infections, cuts, urinary tract infections do not arrive or happen "on a specific schedule of 8 AM to 5 PM" which Missouri State Law currently requires an RN to be on premises.
I felt as though Mom was here today, gone tomorrow and someone else would replace her -- in her room, her bed, the space she "occupied" for what to me was so short a time compared to all the years we'd spent together.
Isn't Hospice a level of medical care?
How can any Long Term Care Service deny medical care and not be severely fined by the State of Missouri? By the Federal Government? By Medicare? By Medicaid?
We were once again facing end of life with a close family member and our first response was to get to her as soon as possible.
Imagine our surprise when we arrived and Mom was in a public area. Not in her room. Not exhibiting any signs we thought we would see as "End of Life".
Maybe writing a few notes in a book or on a form and "seeming" to be working while obviously taking their time and making this activity last as long as possible to perhaps avoid another chore, one less desirable.
We tried to get a report from the floor nurse(s). No one seemed to know anything.
I asked them for Mom's daily report. They didn't seem to know what I was asking for and said we could talk to the facility RN, the one mandated by the State to be "on premises" during "regular daily business hours -- 8 to 5".
We waited about 20 to 30 minutes. She'd left for the day.
We asked for someone, anyone who could brief us as to what was going on, why they believed Mom was in the process of immediately dying.
No one came.
We asked about what "signs" they had about Mom's passing as we were seeing the same person and the same low level of ability but not what we thought we'd see: visual signs with labored breathing, unconscious, perhaps, or some other visual "clue" life was ending.
We observed nothing different from previous visits.
Mom was in a public area . . . in a Gerry chair with her legs hanging over . . . and a poorly wrapped area on her leg . . . where we'd seen cuts from the unprotected sharp metal edges on the chair we'd drawn to the attention of the staff the last time we visited -- and, of course, had not been taken care of.
One of the LPN's suggested we move Mom into her bed "where she'd be more comfortable".
Once again, we'd drawn attention to what we considered to be neglect on the part of the facility. That seemed to be the trigger to move Mom into "her room"; the room she'd shared with a lady who was unconscious most of the time, we believed because she was a challenge when she was awake.
Of course, HIPPA prevented our knowing the truth and since the woman was never visited by family while we were there (and we'd been visiting every day for several months), there was no one to talk to about any concerns for the woman's safety.
Yes, this could be called a "short time" to go through the process of dying but we weren't sure it hadn't been an additional four days we hadn't been able to come plus the four days we shared with Mom.
Honestly? We weren't sure Mom hadn't simply not been fed or given liquids for several days and there was nothing in any orders or requests she'd made for this type of "denial" or "elimination" -- especially without a Dr's review of Mom's medical condition and advisory to us, her POA's and her designated Medical Power of Attorneys.
Mom wasn't offered any water or food while we were there. There was no mention of her not being able to swallow or of concerns for her choking or the need to place her on IV or a feeding tube.
Did she "refuse" food? There was none to refuse.
I finally had a call placed to the Dr and the "staff" brought in a tray with plates of food -- food like you and I would eat, a regular menu.
No soft or pureed foods. No liquids only.
We saw it as a "slap in the face" to us; as if we were so "incompetent" to believe she could eat at all and providing this "full meal" was their way of saying, "See, we told you, she won't eat."
Death comes in so many ways and when we witness the death of an older person in a long term care facility, are we witnessing a "death" or are we witnessing the affects of neglect and/or abuse?
Our thoughts return to our own experiences and frequent observations before this time of vigil: the person assigned to assist Mom or even to try to feed her busy with conversations with other workers, have four or more people to feed and therefore couldn't keep track of who had what and when .... or.....what?
Heard on NPR today that when someone is dying, they often don't eat. Yes, and in LTC's, individuals with Dementia often refuse many services because of their mental inabilties and incapacities.
Does that mean a facility can simply ignore the person and their family? Ignore the family's need for consultation and qualified medical conversations?
Who determines when someone is dying in a Long Term Care Facility?
More importantly, who's in charge?
The LPN's, the single RN on duty during business hours?
They're the ones who make the decisions concerning when the Dr is called and for what reasons.
Only when we finally made contact, finally demanded the Dr be contacted and spoke directly with her did we learn there was no order to deny food or water and she knew of no reason why this should be withheld.
The biggest surprise was the Dr had not been contacted by the facility about the "imminent death" observed by the LPN who called us or anyone else.
Mom wasn't even being given an application of a wet cloth to her lips, her face, her hands. There was not attempt to provide a bed bathing. There was no compassion. There was no human touch unless we asked to a temperature to be taken or her heartbeat listened to.
We had to ask for care giving -- turning her, propping her up on one side and then another.
Guess they decided there would be no "end of life care" whatsoever. Guess that wasn't their "responsibility"?
It was as though they felt their "job" had ended with what they determined Mom's death was "imminent".
Oh, they brought in a rolling cart for us with some beverages and nutrition bars and other things. I thought how cruel to have this in sight of Mom but not offer any communication, any touch, any small portion of human kindness.
This "neglect" went on until Mom's final day when a male LPN, who had showed great compassion and concern for Mom, returned to duty and was "assigned" to Mom's room.
A reprieve. Someone who would talk with us and who worked with us to make what became Mom's final hours more tolerable for her and for us.
Why didn't we receive a medical doctor's evaluation during these days we spent with Mom trying to cope, trying to sleep, daughter on the floor and I crawling into the non movable lift chair in its continual reclining position -- difficult to get into and really difficult to get out of and miserable to sleep in?
Advice from those who've walked and grieved alongside a loved one:
If you wonder why your loved one gets sick so much, wonder about the food they eat, the real quality and quantity.
Don't take it for granted what you see on "special" visitation days in meals is what's always served. The facility is on display; they'll do their best and present their best.
Take note of "changes". Watch for those provisions like food on the floor in refrigerators and pantrys being reduced or eliminated. Missouri State Law requires offering snacks on a regular basis but it was only during and for a short time after the "inspections" Mom's facility followed those mandates.
Our Voices Are Raised -- Raise Yours
Detailed, inclusive, clear and concise language.
A list we could access and take with us as a checklist to ensure the laws, the rules, the regulations are being adhered to for the safety of our loved ones and ensuring their quality of life is maintained and sustained.
Explicit and detailed. Give us the facts. Give us the right to a life of dignity to the very end.