Deprived Of Our Choice of Hospice for Mom

What do you picture physically, mentally and emotionally when you hear the word "Dementia" and "Final Stages" about people involved in personally experiencing the effects of Lewy Body Dementia?

Most websites reference losses or greatly diminished capacity of sight, hearing, touch, smell, total incontinence and many other challenges to various organs and bodily functions and processes. Some depict the person as more of a "vegetable" just laying there and not functioning or aware.

Mom didn't progress this way and her life didn't end this way.

In fact, we were amazed by the physical activity of her arms and hands and legs and feet up to the very time she took her last breath. She wasn't silent and she appeared many times similar to anyone struggling to battle an infection or other common medical challenge while on the way to recovery.


We suffered along with Mom. It wasn't necessary.


Yes, we were with her during her journey from life into passing. Leaving her side was not an option. Just as it wasn't when my husband passed.


We were glad to have more choices than we had at the hospital after the actual event but saddened by the level of communication and challenges experienced because staff was poorly trained in transitioning as she and we were doing.


Since the facility insisted we could not have a Hospice Service other than their own for Mom, we were without support we could have used and could have benefited from receiving.


We couldn't use their service; there wasn't a sufficient level of trust with their staff and oversight by the facility.


The Nurse Manager who called to tell us to come to the facility as quickly as we could because they'd observed "signs" Mom was going to pass very soon, didn't even stop on her way out the door as she passed us entering the facility. She was, in her words, "leaving for the weekend" -- although it was Wednesday. She only said in passing, "If I can do anything for you when I get back just let me know."


Really? My Mom is eminently passing and the person who's claimed for so long to "care" about "each and every one" of the people on "her floor" can't even spend a few minutes with us to let us know what caused her to call us and summon us immediately to Mom's bedside?


Two Social Workers at the facility and neither comes to her room or seeks us out during the two and a half straight days and nights we were with Mom as she was passing?


Told Mom had eaten breakfast and lunch but not dinner the evening they called us telling us to come quickly we didn't question no food being brought to the room for breakfast, lunch or dinner the next day.


Unfortunately, we'd both been unable to get to the facility for four days previous -- work, extreme weather conditions and a car that had severe mechanical problems (the only one we had to use) prevented our being there to at least feed her dinner and ensure she had one good, full meal each day.


In retrospect, watching how the staff didn't notice or even seem to care if everyone was fed, how much they were fed at dinner when we went the last two weeks to feed Mom and judging from her inability to eat and then her incapacity to eat, we believe Mom's death was due to this as well as other factors.


Yes, she was quite advanced in age but she was also advanced in her inability to fight back, to speak up and to care for herself. Dependent on them, she showed what that dependence does to someone in a weakened condition.


We'd witnessed it before; reread about the State of Missouri paying a visit to the facility in early 2013 after two deaths that occurred we didn't think were "natural" at that time.


Over the past year I've detailed only a small amount of the challenges we've faced and the lack of apparent concern on the part of individuals and the facility to communicate, accurately diagnose and administer medical directives and just simply provide general care and consideration.


WARNING:  Read your contractual agreement very carefully. We did. They had no right to impose this restriction on our choices of medical care, which Hospice is classified as being and is covered by Medicare and also, I believe, Medicaid. 


Mom's death was imminent.