Follow Up: State Investigation: Quality Individualized Care Not Provided

Mom, like so many others, is trapped in the "system" of Elder Care.

When we caregave at home, we searched for ways to provide services she needed for socialization, health care and for her growing special needs.

Despite widely publicized statements from Area Agencies on Aging of the State of Missouri and various "elder" assistance programs, we could never find anyone who (1) had not used up their entire budget for "that item" or "this service"(2) could provide more than 1 to 3 TOTAL "respite care" HOURS , only once a year (3) saw what we did as valuable and worth reimbursing.

Yet this same "system" doles out $5500 a month for "care" in a Long Term Care Facility calling itself Mom's "home" but providing less than 5% of the amount of care and concern we managed on our own, 24/7, with all the burn out and the challenges.

Living in a Skilled Nursing Center, you'd think everything was right there, at hand, high quality and automatically provided by a system set up to care for our elderly -- all in one place. Doesn't happen.

Laws, Rules and Regulations, don't make any difference. Reports are "detailed" in ways that follow required guidelines but in essence and effect, are either not provided, done as minimally as possible or not at all. If it's not an extra charge, it doesn't seem to get done.

Sadly, even the Not For Profit's like Mom's SNC operate as a "business" first and a "service provider" second. Those who require the least amount of attention and services are given "perks" like being included in trips outside the facility. There's usually someone who "helps" these "low maintenance" individuals with added benefits including more personal attention on the part of facility employees.

If you're wheelchair bound, you might get to go,but you need to be on a catheter because it's too difficult, you see, to take someone away from "the group" and find a bathroom.  We've always managed with Mom and took her almost everywhere but that's because we're family, we care and we provided a real "home".

I'd love to take a look at the SNC's cost analysis reports one day. I'd like to know who decides it's OK to have one LPN and two CNA's for forty people -- even if it is the "graveyard shift" from late at night until early in the morning, one resident requiring two people for assistance makes an emergency situation very challenging and heaven help the third person who needs immediate help when there just aren't enough hands available.

That's where, I believe, the problems encountered with recent deaths at the facility, one from failure to recognize a Urinary Tract infection and allowing it to develop into Sepsis and another death after a patient was "dropped" (the resident "let go" and fell was their description; a woman who had very little use of her hands and was already on Hospice) stemmed from -- UNDER STAFFING AND INCOMPETENTLY TRAINED SERVICE STAFF.

Missouri provides Medicaid payments for elder care only when provided in a Skilled Nursing/Long Term Care Facility. Each State has different policies. Levels of care and other resources available on Missouri Department of Health and Senior Services on this webpage.

For residents unable to pay the high average cost (Mom's facility receives $5500 from Medicaid and, I believe, also her Social Security payment because that allowance is below the Private Pay assessed to residents at the facility), there's only the choice of "what's available" at any given time.

Residents are "locked in" to a facility unless an opening appears when wanted/needed for a Medicaid Bed and that opening also has to be in a double/ same sex room (male/male; female/female).  You can be on a waiting list for years and die before a vacancy occurs.

BAIT AND SWITCH.  When we looked at Mom's current SNC, it appeared to be clean, no urine/feces smells or stains prevalent as in others, provided activities and had wonderful "outings" she could go on if she just "signed up".

They said they would provide her with food from a special list if she didn't like what was on the menu that night (of course, she couldn't see the list and as Dementia progresses, she couldn't think ahead or even to ask what they were having). It's Skilled Nursing but operates more like an Assisted Living Facility.

Most people "chose" to dine in the main dining room on the first of four floors, we were told. We thought that meant someone was always available to help residents get to the dining room; actually, it meant those who were capable of taking themselves had "assigned" seats at "preassigned tables" determined not by the resident, but by the "administration". Three meals a day,seven days a week, you eat with whomever they place you with and that's "your place".  Want to sit with someone else. Sorry, it just doesn't work out today/tonight.

We were told Mom could go into a special Alzheimer's Unit; she wasn't officially diagnosed with LBD at the time, she was using a rollerator (a walker with wheels) and she seemed, to everyone, to be cognizant. It was a self contained unit where activities and dining were all in one section; so great for Mom because walking was becoming a challenge due to swelling in her legs from poor circulation.

REALITY CHECK:  This Unit was "special" and we believe first come, first served are those who can "private pay". There was supposedly a Medicaid bed available and we thought Mom was given it but when we arrived to "check in", we were told her room was on the Third Floor because she was "so much more capable" than those in "The Special Unit". 

Months later we'd be told Mom couldn't go into the unit because she was no longer "ambulatory". So we began to understand the "hierarchy" of admission and how this facility used its Alzheimer's Unit as a "perk" and ensured mobility so less care would be needed.

Mom visited this NEW facility, the one where she now lives, and was looking forward to "moving" from the facility where she felt like they totally ignored her and where I saw them "punishing" her by removing her roommate for days at a time and isolating her.

The previous facility would not allow residents to use any bathroom except the one in their room even if they were in the dining area -- a considerable distance from Mom's room; and they didn't give her adequate medical care necessitating several trips to the ER and an outside Dr to correct problems they'd let go on far too long.

New facility;same old problems in many ways, is what we've discovered.

Let's face it, they're a "captive audience" with nowhere else to go. Limited by Medicaid to pay for their room and board, as Dementia develops adjusting to new surroundings, new "schedules" (not supposed to be but always are; residents are supposed to get up when they want, dine when and where they want but that's definitely not the case) causes caregivers second thoughts about "relocating" their loved ones even when the current facility is "less than" what should be.

All States have Long Term Care Facility Resident Rights and Facility Regulations. The challenge is getting those rights and regs enforced. Each State has an Ombudsman program that's supposed to protect individuals in SNC's.

In Missouri, (see info on Missouri's Ombudsman program by clicking here) it's legislated but underfunded; unpaid volunteers, and not many of them, work four hours a week in an assigned facility "getting to know" and "care about" as many as 150 - 300 residents. 

Do the math and figure out how much "attention" is given to how many residents in any one month let alone any year.  Small area offices overworked and underpaid people usually dedicated but almost always given far too many responsibilities and paperwork that knows no end.

It's amazing to me how much our society spends in time and money ensuring infants and children are given individualized care and opportunity, both from their families and from government mandates, and how little is provided to those who have given so much to provide the society and world we're privileged to have because of their hard work, dedication and perseverance.

Let's realize we have a voice and use it to provide for our loved ones and those who have no one to speak on their behalf.

Provide for those who are behind closed doors challenged by the progression of feeling less valuable and more costly.

Volunteer. Eat lunch with a resident or have dinner; make a friend and be a friend. They're someone's Mom, Dad, Brother, Sister, Aunt or Uncle and YOU can make a difference.

Start or Join the facility's Family Council.

Yes, Federal Mandate of 1987 says each facility can have a Family Council and provides guidelines for the community, especially family members, to be heard.

More on what a Family Council is in a later blog entry.