Discovering Thrush In Mom's Mouth As She Lay Dying

Just reading over The Kaiser Commission on Medicaid and the Uninsured and as usually happens, my thoughts return to areas of neglect and abuse within the Skilled Nursing/Nursing Home facilities industry. 

It's a long report but worth scanning through and picking up valuable information on neglect and abuse in facilities.     

Here's the link:
http://www.canhr.org/newsroom/newdev_archive/2013/ACA%20Nursing%20Home%20Report.pdf

I'm going to be taking sections of this report and putting into later blogs with our own experiences and observations that continue today, incidents and events from a personal point of view. No human being should be subjected to any of these let alone all we witnessed being done to Mom and all we've seen being done to others.

The report seems to "minimalize", while stressing the importance of change, the actual incidents and occurrences of Neglect and Abuse in Senior Long Term Care Facilitates. 

No one talks about many of these areas and quite honestly few who come to visit give it a second thought. 

People who do these "personal cleanliness" functions daily don't think about it, they "just do it".

Having traveled to some of the less sanitary or advanced areas of the world, my daughter, who's walked among people living in garbage dumps in South America and I, who have travelled the Caribbean before high rises and multi chain resorts brought "civilization" to communities of people living without running water and in tiny lean to "houses" the size of a large dumpster, made from cardboard or if they were very fortunate, cast off metal roofing, have seen and understand unsanitary conditions.

I understand there, I DO NOT UNDERSTAND HERE, IN THE UNITED STATES, and more exactly within facilities that receive tax payer dollars for their support and continuity and who are supposed to be "monitored" and "regulated" to ensure the safety of each individual UNDER THEIR CARE AND TOTAL SUPERVISION.

I've mentioned a little about our last days together with Mom, my daughter and I. I've not shared the heartache and the sickening feeling then, and what I get now, when I realize how Mom was neglected during her life and in her death. 

Oh, there was "show" of care and concern at the last; and some real concern by one special LPN who truly did care; most, however, "steered clear" of us, my daughter and I and we got the feeling they were positively anticipating Mom's death because we were always watching and always concerned about her care and her health while living there -- and other residents, also.

They're surprised we're still around. We have others in the "community" we see being mistreated and neglected and we, with their permission, are vigilent and there for them in whatever times of need or just as "friends" doing what we can to make their lives a little easier and less filled with hopelessness.

MOUTH SORES AND THRUSH.  

Mom had sores in her mouth and when we removed her teeth while spending the last days with her, we discovered thrush in her mouth -- very well developed thrush.  

No one had apparently cared enough in some time, especially while she was in her last days, to clean her teeth or even remove them from her mouth, rinse them and check her mouth for sores.

Mom may have died with Lewy Body Dementia, but it was the neglect and the complications of poor medical care that really took her from us.

It was obvious Mom could not do for herself; you didn't need someone to point that out. 

And, other times when she was sick with Urinary Tract Infections and other illnesses, we found the sores and the thrush and so much more.

We were so challenged by life and all it was putting in our path we sometimes didn't think, didn't look. And, sometimes when we visited Mom was "not in a good mood" so trying to check her mouth and other personal hygiene factors didn't always seem like a good idea.

And, too, often there was a major event happening: sores discovered on her legs that were weeping, compression stockings so tight her legs above the tops were swollen to twice their size, nonexistent nurse call button w cord (not attached to wall, not anywhere to be found) or a myriad of other significant challenges we had to address and resolve through numerous channels and ensure they were addressed, were resolved.

Our care for Mom wasn't just in visiting her and bringing her something she might like.

We were always vigilant, always trying to check and double check, feeding, toileting, cleaning up and taking care of.

Yet, with all we did, tears often come because I feel I could have, should have done more for my mother and so sorry I did not have the ways or means to provide more for her because of all the losses we incurred and all the challenges we faced.

BEFORE YOU ASK: We made so many calls to the Elder Abuse Hotline, to the DHSS, to the Ombudsman's Office, they must have thought we had them on speed dial. 

We were responsible for numerous facility "special visits" by the DHSS. 

AND, AS FOR CHANGING FACILITIES:  We had experience through stays in Rehab Centers within Skilled Nursing Centers that showed us you were often moving "from the fying pan to the fire" AND WITH ADVANCED DEMENTIA, people do not adjust well to change, especially a change of living space. Mom at least had a window to look out of, we were close by and could be vigilent and she had space in her room for her reclining/lift chair -- which was more than she had or we could find at any other facility. WE DID LOOK. WE DID TRY. It just wasn't meant to be is all I can believe.

Read the Kaiser Report and you'll find a section on "under reporting" by local DHSS representatives charged with filing reports on "incidents"; it will be a subject for a future blog entry.

I'm writing this the day before the one year "anniversary" of Mom's passing.

Can't think of another term for this day but certainly not one to "celebrate" as that word implies. I'll be publishing this entry several days later. I often write ahead; sometimes my train of thought, my ability to find information or just my writing comes faster and sometimes life happens and I can't find the time or the right thoughts or additional information.

Yesterday we visited one of our friends at the facility. The facility was on its best behavior; people couldn't have been nicer

I'd heard on New Year's Day from another resident the "rumor" about the State's Annual Inspection and a visit "the next day". That, I thought, didn't sound right because of the holiday but knew the facility's "license" was due for renewal and soon the DHSS would come.

Yesterday, though, EVERYONE said hello to our friend, stopped to talk with her and just couldn't be more cordial.  At least three different people "stopped by" while we were in her room to invite her to do something or see if she needed anything. NOT AT ALL USUAL.

YES, DEFINITELY. The days are ticking by and someone has provided "advance warning" to SET THE STAGE and diminish any "negative" reports.

YOU SEE:  It's really quite simple.  If you replace poor treatment with good treatment, even for a short time, minds that are affected can only relate to the latest experience and anything they might "say" could be taken as "possibly a delusion or misinterpretation" because they'll also mention the "good treatment" they're receiving.

As for others, it all depends on if they're even asked about the facility. Not all are, you see. We never received notification THE STATE DHSS was visiting. Correction: One time there was a posting on the entry door when the DHSS spent an entire week "investigating".

But, as always, the facility "corrects" whatever they find and another year of returning to old practices and old ways gradually and sometimes quickly -- returns.

Think I'll write another entry SETTING THE STAGE: THE ANNUAL DHSS VISIT MAKEOVER and hope you'll return to learn more about Senior Living Facilities, Lewy Body Dementia and life during and after being a caregiver for two family members.