Thursday, February 13, 2014

Insights:# 1 Dr Visits & Poor Hygiene in Long Term Care Facilities

Residents of Long Term Care Facilities are required to have a primary care physician affiliated with the facility. It's been our experience the list is short and often limited to not include a hospital of choice for additional services.


In the months preceding Mom's death, we became even more disappointed in the medical care from the physician "attending" Mom at her Skilled Nursing Center.


Rereading the "official" entry papers and "contract" just before her death we realized the facility Dr only had to see Mom (or any resident) once every two months. 


Elderly men and women who often develop infections and catch strains of Flu and other often life threatening illnesses relegated to every 60 day "visits" doesn't seem to be a very sound medical decision. But that was Mom's facilities' practice, except, of course, when we wanted our "own" Dr and then we were mandated to have Mom seen every thirty days.


In the interim, i's up to the "Nursing decision" of the LPN on the floor and her/his personal "fear" of the "wrath" of the Dr as to whether he/she contacts his/her office for advice or just sets aside any potential medical concerns expressed by the resident or the family.


And we wonder at the high cost of Medicare and Medicaid?  Why don't we realize as a society when we don't take action to ensure the safety and well being of these people, many of whom cannot express themselves and many who give up because no one wants to hear "another complaint" or "another problem" as it takes too much time and additional "person power" to resolve -- we're increasing the cost of Medicare and Medicaid.


I digress. We finally found what we thought was a Dr with whom we could communicate and who took the time to "counsel" when we did have interaction.


To get to that point, we endured being provided with lists that weren't current including Dr's who no longer were willing to come to Mom's facility; were no longer accepting new patients; were no longer adding Medicaid patients.


Doesn't it stand to reason if this list is obsolete many other records at the facility are questionable?  None among us believes this is an "oversight" but rather that it's typical of the failure of SNC's to maintain accurate records.


ON CALL.  My son, who was also a POA, in the last hours of his Grandmother's life, learned how this terminology at a Skilled Nursing Center simply means the Dr "may" be accepting phone calls. NO DR IS SCHEDULED TO BE AVAILABLE TO GO TO THE FACILITY.  In fact, we were advised, as we often were, to take Mom to the Emergency Room if we didn't like the level of care the facility was providing.


ANOTHER DRAIN ON FUNDS PROVIDED BY YOUR TAXES AND MINE. 


Common problems that should be prevented are escalating and causing those family members or in some cases the individuals to seek Emergency Room treatment to take care of Urinary Tract Infections that have gotten out of hand and gone into bladder or other infections and advanced to a point where they become Vanco or other medicines for treatment non receptive could easily be corrected through more demands by those of us "following" into these years to make legislative corrections today.


As a society, we should see how not only the over prescription of medications has caused a development of a new "strain" of resistant "bugs" to develop, but how the neglect to perform common, everyday functions of cleanliness have put our Elderly population in Nursing Facilities back about a hundred years or more into times before antibiotics and knowledge of how clean hands and a clean body prevents contracting some diseases and the spread of many.


Think about it. Long nails used to cleanse areas after urinating and defecating without ensuring the nails have been clipped or cleaned and then using the hands to eat, as is common with advancing Dementia.


Think about it. Giving a shower or two a week but neglecting to wash the hands or face or body of a person who's become incontinent or who cannot wash any part of their body without potentially misusing a piece of toilet paper they've used to wipe themselves with or even food placed in front of them -- thinking they have a washcloth in hand.


Think about it.  Allowing Dentures to remain in someone's mouth without using a toothbrush and never a denture soak. Developing sores and eventually Thrush and other infections in the mouth.


Think about it.  Failure to ensure toenails are clipped and clean causing potential loss of limbs due to set in of infections leading to gangrene.


Think about it.  Clothing fouled by sitting in excrement thrown into the closet without encasing in a plastic bag and closing it.  Resident is able to move around, resident has Dementia, resident pulls out clothing from bag and proceeds to dress themselves or use a pair of pants, complete with urine or fecal material to "wash" or "dry" themselves.


Attendants don't see this. Nursing staff doesn't check to see how personal hygiene is done by Attendants.


Who cares? Do you? Do you want to end your days this way?  And, please don't think if you pay enough you won't; it's happening behind closed doors in some of the most "fashionable" and "costly" facilities.


That old song ..... "Nobody knows what does on behind closed doors."








 

Sunday, February 9, 2014

Another Entry From Before Mom's Passing

This entry was begun on 12/21; just days before Christmas Eve and Mom's first "hint" we were possibly closer to the end than the beginning of her stay at her current facility.


Over the time I've been blogging, I've started several "drafts" and set them aside. Sometimes I read them and think I'm being too harsh, not objective enough, including too many "personal things" those who read this blog may not be interested in my sharing.


Now, with Mom's departure, I'm going back, rereading this and other communication I've had with family and friends and seeing with "new" eyes things I believe need to be shared or at least brought into the light.


Again, this was written well before Mom's behaviours and our observations began to see definitive changes, or "end of days" as we experienced in what was to be a very short time.


What do you do when those around you are focusing on "the end"?



If you're me, you analyze, research and remember you know Mom the best of anyone, even the other two POA's, your son and your daughter. But you value their insights and opinions and seek their counsel because we are family; we are Mom's caring family and have been for decades.



Sharing this responsibility has given them insight into aging they would not have had. It's meant for my one son, who lives cross country and travels internationally, the ability to continue his life knowing we have open and constant communication and we're here to ensure Mom/Grandma is given quality of life and she's cared for at a level of her needs and wants.

For my daughter who values a multi generational lifestyle, it's given her insight into the years down the road when she will be me and I will be my Mom.

So, there's that question about "the end" of life, that is.  How do you know when it's really there? Internet and many resources including www.lbda.org and others give insights. But I've been taught to question, to look deeper, to ask more. It's a blessing and sometimes not.

My analytical side (scientific side) wants to know if the "observations" cited of behaviours as well as physical challenges are due to the disease or to actions taken in the course of the disase.



What would Mom want if she knew what was going on now in her life?
 

I reflect on many conversations she had about her Mom and how she felt about how she thought her mom was being treated; about sisters and brothers in SNC's and their treatment. About her own reflection on wishing she never had to go into a facility and believing the only time a person should be in one was when they didn't know where they were.
 

It seems we've crossed over from the time when Mom "came back" more easily from infections and neglect causing sores, cuts and even the need for stitches.


She's still on antibiotics and they play havoc with her body and her mind. Typical Lewy Body Dementia reaction.


And, that's the real challenge: What's "typical" of the disease stage and what's an accurate evaluation of progression. How "far back" will Mom be when this course of treatment ends? How soon will we see another infection?



Question: When Mom returned to the Skilled Nursing Center, she came back after having spent the last two days in isolation due to a Vacomyacin resistant type of infection.


At the SNC, they immediately returned her to her room complete with roommate who appears to be drugged most of the time (probably on Hospice) and "brought back" to consciousness to eat some meals.
 

Infections and diseases are rampant at the facility. Reminds me of the first hospital where my husband stayed. We finally "got smart" and realized we needed another medical facility and took him to the same hospital where we now take Mom.


They have a program of infectious disease control and practices that protect patients far better and should be more widely practiced by hospitals, Rehab facilities and especially Skilled Nursing Facilities.



STATEMENT:  A resident of a Skilled Nursing Center is there for one reason in the State of Missouri: he/she has medical conditions needing 24/7 attention by a level of medical care determined by the State as allowing a minimum level of LPN supervision. (My personal  opinion, they need RN staff; it shows when they try certain procedures or when more medical attention or observation is needed)
.

So many people see LBD as Alzheimer's and categorize it as being the same. It's definitely not and requires a higher level of accommodation. Interesting how we have "Alzheimer's Programs" and "Alzheimer's Units" but there's no "special treatment" let alone in many facilities there isn't even recognition of the disease as real Dementia.


Many people, professionals and the general public, see both as irreversible and as stages well defined. Not so.


We've walked this path and have been amazed at the cognitive level that can still exist -- even now.
 


Question #1:  What effect do drugs currently chosen to change the behaviours of the elderly have on their physical and mental capacity?
 

If Mom reacts to pain from an infection or from someone's lack of care in moving her, should we "mask" this ability to recognize yet not fully communicate her objection or recognition?
 

Who are we serving by not addressing the real issue, the infection or the procedure?



Question #2:  Is a series of medications to "ease" her transition into this "time in life" which others have said appears to be "the end stage" what she would want and how she would choose to live her "last days"?



While not a "self medicator", Mom valued medicine and the abilities it provided.


She doesn't want to be resuscitated but does that mean she gives us permission to "create" this situation through allowing "nature" to take its course and put her into a situation where infection takes over her body and causes functions to cease or actions to begin that intervene in the daily functioning of her body?



Question #3: Are we becoming a society that has redefined death as "OK" by whatever means once a certain age has been reached?


Haven't we gone that direction by saying someone is or is not a candidate for a medical procedure based on age? That is, of course, unless they have the financial means to procure the method withheld generally simply because if "we, the people" are paying for it, the cost at that age doesn't provide "productive results" and so why give, administer or provide?


It's necessary, you say? We may only have so much of something or so many to provide and must use this form of "control" to assure provision is where it can provide "results"? Perhaps this can be justified by need for an organ or other donation but should we be applying the same "medical reasoning/judgment" for more common procedures and medications let alone everyday treatment within a Skilled Nursing Facility and/or hospital or by a doctor or other medical person?



Question #4: Age is a criteria but what about life's value?


Saw a billboard the other day clearly advocating for the "right to life" of the unborn but it cited three age groups and a "beating heart" at 90, 25 and 13 days (these ages aren't accurate but approximate as cannot specifically remember) as being "life". That's one of the few times lately I've seen anything advocating for the "right to life" of someone in the most advanced years our current American population is experiencing.


You are among those who set the "rules" of life wherever you live.


How does your society, if you live outside the United States, treat the elderly, especially those who need assistance with daily living at advanced care giving levels -- feeding, toileting, dressing, moving from place to place, etc.?


Comments welcomed.


Saturday, February 8, 2014

Another Year, Another Special State Investigation


Written after we held a small gathering, coffee and donuts at the facility to share Mom's life/leaving with residents and some staff we have considered caring and did help us with Mom's caregiving.


They're back. 


Thick briefcases in hand.


Didn't realize it at the time as I caught a brief glimpse of a small gathering of women in the lobby of the facility and passing by on their way to set up yet another "office on site" to being yet another "investigation" of the facility.


Whispers turn into small waves of gossip -- they're here again.  Staff become very visible; people move around and residents get more attention than they've had for many days and nights. It's yet another State Investigation.


And then they come. To pay their respects. People who were absent or not available or who just couldn't seem to "get it together" during many times we'd sought help in securing services at a level respecting the individual and human dignity.


They share our sorrow. Hard to believe from some. They're told we plan to continue to come. To visit others. To be there for them. The smile on some faces doesn't reflect in the eyes; is that concern? It should be. We're not silent and we don't believe in not questioning neglect or potential abuse.


Sad. Really. So many possibilities. We've sat with them even when Mom was dying and tried to explain how concerned we are; how valuable and necessary they are to the community they serve and to the community in general. Did we reach the right ears? Were they anyone who can do anything positive?


We'd thought so many times we'd met with the Administrator we were getting through. Some positive actions were taken. Some changes were made. Now, it's been almost a year and many functions are reverting to the low levels they'd been for so long and others are dropping below what they had become.


Why is it so difficult to run a caring and involved facility where accurate and good communication is the norm?


Why doesn't someone look beyond the dollars and cents and realize they will accomplish more by looking to those who really care and bringing their ideas and actions into everyday life at the facility -- residents, staff, family and friends.


Welcome your sharing comments about facilities that do provide caring, responsible and sharing facilities at the Skilled Nursing level.

Monday, February 3, 2014

End of Days: Who Decides?

Wrote this entry from my Mom's room at the Skilled Nursing Center but due to the imminent struggles we went through with staff and in trying to do what was best for Mom without any real concern by staff until the early morning hours of the last day I forgot I'd written anything during that most trying time.


We were called two nights ago and told by the floor Nurse Manager my Mom's death was imminent.


My daughter, who's a POA along with my son and myself, was called. I wasn't. He wasn't.


Reasons given? Motling, swelling of hands and feet, lethargy, additional confusion.


Reasons we had to find out ourselves. No one came to us. As always, we had to "seek and find" the "right person" who was "still on duty" who even knew what was really going on.


Mom had eaten half of lunch and a full breakfast; she hadn't eaten dinner/supper. Or so we were told. 


The call came in at 6:44 PM.


We hadn't been able to visit Mom as we'd been doing on a daily basis since Saturday; this was Wednesday. Sunday a huge snowstorm, historical in its amount of snow dropped and followed by temperatures well below zero closed almost everything on Monday. Snowplows could not get through, icemelt was not working.


It was the strangest snowfall I can remember; so light it seemed to be like the kind they used to use in Hollywood picture making (we saw it one time on a trip to the Coast) for their winter scenes. The problem was exceptionally high winds blowing drifts and causing anything shoveled to be blown back in your face and onto everything but where you wanted it to go.


Last night was Night Two of our Vigil.


It's not my first time waiting for death. And, it's not my first time watching over someone who's dying.


Today marks the third anniversary of the burial of my husband.  He died on January 5 and we said our final goodbyes on January 10.


The weather was quite different then. It was cold but not days of sub zero temperatures.


You didn't need to wear layers and layers and protect yourself with gloves and hats so your body wouldn't get frostbite.


Admit I lost it last night. Was it the "anniversary" drawing near?


Was it the reminders about the challenges we faced then with so many questionable medical decisions being made by "professionals" that led to his death and seem to be leading to Moms?


I believe it was and continues to be the failures of medical facilities to provide choices through providing accurate information and instead to make decisions for their patients and families.


Until I questioned procedures I'd observed in place.


Until I realized these procedures were in place.


Mom was denied food and water. It wasn't offered, it wasn't provided.


When I noticed no food or water was being brought into her room for her but a tray of "snacks" and drinks was provided for us, something inside of me felt a decision to "let her die" had been made by the facility.


I've seen it before here. I've felt it in the air.


I asked to see the notes regarding the call we received. Asked to see what Dr had determined Mom was "dying".


Just a few weeks before I'd asked the same question about Hospice when a call was received. The same Nurse Manager called and "suggested" it was time we did Hospice.


Mom's health had been declining. We'd seen the possibilities. We'd just been to the ER and a hospital admission. Daughter and I'd talked and we'd begun investigating services. We'd even talked with the Administrator of the facility.


We were told by Mom's facility they did not allow any outside Hospice Services to provide for anyone living in their locations. We had no choice, according to her.


NO CHOICE? NO MEDICAL CHOICES? No ability to determine Mom's medical care was provided by someone she or we as her POA's chose?


NO COUNSELING. Facility has a "new" Social Worker for the floor. Have we met her? NO. Has she "dropped in" to see how we're doing/how Mom's doing? Not while we've been here. Has she called? NO


WE CHOSE NOT TO ENTER INTO THE FACILITY'S HOSPICE PROGRAM SO NOW WE'RE BEING TREATED, IN MY OPINION, AS NOT AS VALUABLE AS THOSE WHO DO AND CERTAINLY NOT A "RETURN ON INVESTMENT".


There have been several deaths recently. It's the time of year; it's the weather; it's many with advanced age and advanced medical conditions. I get it.


What I don't get is how people who don't have family are dying alone. Surely they can see when someone who's been struggling with many challenges is losing more than winning their battles?


ISN'T THAT A VIOLATION OF MISSOURI STATE LAW, not to have the choice of which Hospice a family or individual wants to us? 


After all, Rights of Individuals state residents have a right to choose their own Dr. Residents have a right to state their own wishes regarding End of Life care -- which, by the way, Mom did not want to be starved to death as it appears is being done; true, she didn't want IV feeding but days of not offering even a drop of water or a small amount of liquid was not her idea of a "good death".


So begins another day.  What do I do?  Do I simply sit and wait. Let the world go by and just "agree" with this NURSING JUDGEMENT?  That's what we were told was done by the Nurse Manager, an LPN, by the way, not an RN and certainly not a DR.


Momma, for your sake and that of all of us coming after you, I will raise my voice to challenge current practices that appear to violate Senior's Rights.


You modeled how to care for family. You showed me women have rights even when you lost many of yours because you were a divorcee in a time when women's right to many things was totally dependent on being married.


I will hear your voice in my ear and stirring my soul to go forward.







Sunday, February 2, 2014

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" of 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 it just wasn't natural, in our opinion.