Hospice Denied: End Of Life Making The Best of What We Could Provide

Mom's roommate removed to another room; not Mom. Mom not taken to the "Hospice Room".

Corporate Headquarters made a big announcement and PR was spread through local media about the conversion of one room in Mom's facility for use by residents who were imminently passing.

Mom didn't "qualify", I suppose, because we wouldn't do the facility's "Hospice". 

The PR didn't mention this as a condition of "use". More exposure, I suppose, to withhold the whole truth.

We'd had too many incidents with Mom's facility where neglect and what I would cite as direct physical abuse were encountered to warrant our entrusting her care in the last stages of life to the people who'd abused this privilege for almost two years.

We wanted an outside, independent of the facility,  Hospice service and were NOT ALLOWED to have this choice. 

We went to both the Missouri DHSS and the Ombudsman but no one seemed to think this was worth investigating or handling.

WHO REALLY PROTECTS THE INTERESTS AND LIVES OF OUR SENIORS IN SKILLED NURSING FACILITIES WHEN FAMILIES CANNOT?  NO ONE, SADLY. NO ONE.

Skilled Nursing Centers are BUSINESSES.  Businesses can serve whom they want, how they want, with certain Rules and Regulations. 

Ever read those R & R's? They're written by people who are influenced by groups who Lobby for legislation that's "facility friendly" and ensures wide interpretations and standards that are so low a mouse can crawl through but a lion, a protector, is denied access.

As mentioned in a previous blog entry, the reason we weren't allowed an "outside facility" Hospice Service was concerns the facility had after an outside agency provided worker was accused of fondling and touching inappropriately a woman while showering. He was a licensed clinical social worker and worked for a Hospice organization. The news story says he "admitted touching them in their private areas while showering them". He made this admission because of "religious beliefs". Hmmmmm.  

What about the Aides who "touch" residents when they wipe them? Or the Aides who physically abused my Mom, directly employed by the facility, who used a rough hand towel barely dampened to SCRUB dried fecal material off Mom's back and front "private areas"?

I'm sure someone had to do this when they gave her a shower, too. Don't know the facts but there's been no follow up to the original story in the news.

MY QUESTION:  Why aren't there two attendants supervising the shower during the process anyway?  Especially due to the fact that probably a large number of residents have some form of declining Dementia where they might see this as "fondling" or "inappropriate touching". Not saying it isn't possible or didn't happen but see the facility denying Mom of her right to get Medical Treatment which Hospice is considered, especially when she was in the process of passing, as withholding proper medical treatment and therefore ABUSE.

By the way, have you ever really examined the shower facility in a Skilled Nursing Center?

It's not like what you have at home and the level of cleanliness is often suspect in many facilities where this area is the least attended and cleaning isn't done from one individual to the next but simply once a day or perhaps if there's an "accident" some slight additional cleaning is performed.

WHY NO ADDITIONAL STAFF? SIMPLE ANSWER:  That raises the cost and that would mean additional staff which is not part of the economics of a Long Term Care Facility either For Profit or Not For Profit.

WE BECAME MOM'S END OF LIFE CARE GIVERS AS WE HAD BEEN HER DURING LIFE CAREGIVERS.  Of course, Julia, the person we call the Undue Influencer, left after she saw Mom's mental capabilities were so far gone she was safe from Mom providing any additional incriminating information or evidence. We believe Julia arrived when she thought there might be something to gain -- an old woman living with a family who'd cared for her and paid all her expenses who probably had a "hidden stash" of money or had made some investments she could get her hands on. 

DAUGHTER AND I MADE DO -- AS ALWAYS -- THOSE LAST FEW DAYS WE SPENT CARING FOR MOM AS SHE ENDED HER JOURNEY IN THIS LIFE.

Daughter made a pallet on the floor and I crawled into Mom's reclining chair that had broken. we'd been told the staff would repair it, they never did. 

The chair was in full recline so this was quite a challenge --  especially getting out or trying to turn my body while in the chair. I'm not that young anymore and even my daughter in her mid twenties was finding the getting in, getting out and even getting into a position for any length of time to be very uncomfortable.

STILL WONDERING -- how long was Mom not fed or underfed during the time we couldn't get to the Skilled Nursing Facility that last week.

We received no calls to alert us to any changes in Mom's behaviour or care plan or care giving -- just the call telling us to come immediately as the Head Floor Nurse considered Mom to be imminently dying.

Mom had an inoperable hernia or ruptured disc in her upper back and the thin Hospital bed mattress was most uncomfortable. That's why she slept in her reclining chair as it provided the ability to at least recline and had a softer pad than the thin mattress covering the bed. Like inmates in prison, the beds were minimal and not considerate of very old muscles and bones.

The Social Worker could have gotten her a special mattress; the facility Dr could have prescribed it. Something we didn't realize and of course, no one cared enough to tell us.

But then, I'm not even sure there was a Social Worker during this time. They were "between" SW's for a long time. And the Nurse Manager had been "moved" up a floor and so that was also a "vacancy" on Mom's floor.

MISSOURI STATE REGULATIONS ONLY REQUIRE "A SOCIAL WORKER" FOR AN ENTIRE FACILITY the size of the one Mom was in. We have no idea if they had one; they sometimes had as many as three, then two and then one. With the departure of the one on Mom's floor, cannot say whether they had any for some time.

FORGOTTEN. SET ASIDE. CONSIDERED TO BE TOO COSTLY. I remember constantly pleading for Mom to get pads/liners for the flimsy paper pants they provided. She would soak them constantly along with her clothes which we took care of laundering -- we couldn't ask the facility to do them because Julia was making regular visits and at least this way we had better ability to see what was missing and what was "returned" after being gone for a week or longer.

A DOCTOR IN THE STATE OF MISSOURI MUST DETERMINE THESE PADS ARE NECESSARY FOR MEDICAL REASONS.  They add an additional patient cost factor. Doctors are "approved" by the facility to "practice" within their walls. Mom's "Dr" was associated with the facility and continuously denied her these pads. 

On our limited and often non existent funds due to both of us never seeming to have a job that paid for more than the bare necessities, we managed to get Mom pads and whatever else she needed, including an additional piece of clothing here and there from Goodwill. We gave up other things as we did those last months when we cared for my husband and mother. 

We believed then and we believe now, their lives were priceless.