Monday, January 27, 2014

January 10, 2014: In Memoriam: Life's End Here & Now

I've tried several times since Mom's passing to write a few words. I thought about many things as they happened and made notes but couldn't bring myself to put my hands on a keyboard and make an entry.

It's still so new and I know from my passage through this time three years ago there is no definitive way to mourn, no specific time period for its beginning or its end and no real way to predict how I will walk or even run through this bittersweet time.

It's difficult, too, because Mom passed on the third anniversary of the day we buried my husband.

I just knew it would be that day. When she didn't pass on Christmas Eve and when there were varying signs of changes I now see as signaling the end was very soon, I felt it would be that day, that singular day, she would leave us.

There is still much to be written; more to share. I'm gathering the courage to restart my writings and work to make a difference.

I still believe if we'd had more knowledge of Lewy Body Dementia, more recognition of the disease by those with whom we came in contact from November of 2010 until those days when she left this world, her life struggling with LBD, our life together, whether in our home or elsewhere, would have been more memorable for the positives rather than the negatives.

If we can make a difference in someone else's journey on this road with Lewy Body Dementia, with ageing and with Undue Influence and Elder Abuse and Neglect, we will have made a difference and honored Mom's life.

Time will begin to heal our sorrow but only change in the system of how we care for and about our most vulnerable members of society, our aged, remains my focus and my purpose for those who are now and those who will come to be dependent on others for their daily lives.

I will write more again. It's still too difficult. I struggle daily with other challenges that have continued since my husband's death of simply putting food on our table and keeping a roof over our heads along with my daughter's daily contributions to this focus.

RIP, Mama; you were my first best friend and thankfully we rebuilt this friendship to what it had been for decades before Julia came into our lives.

We continue, your only grand-daughter and I, to follow your lead.

Now I've been moved to the front of the line in the mother/daughter relationship.

I will try to place my feet to follow well in your footsteps.

I truly cannot thank you enough for all you've given me, for all in me that came from your examples and your choices in life.

You're home now, Mama.

You travelled the world and you began your greatest journey Friday, January 10, 2014.

Your life will be a lamp unto my feet to spread across the world bringing knowledge about life, love and understanding Lewy Body Dementia and other issues of ageing and family.

Thursday, January 2, 2014

Lewy Body Dementia's Advancing; What Are The Right Choices? Part 2

Lewy Body Dementia is compared to a roller coaster ride.

I'd add it's more like the whole Carnival experience going on constantly and we're the people who walked through the gate into one sideshow, another specialty act and various thrill rides,as though in a Dream that's changing constantly and we have no control.

We don't pick and choose where in the Carnival of Lewy Body Dementia we're at, where we might be in a few minutes or where we might be if we turn around or look away for even a minute.

LBD is not predictable. Or at least it surely hasn't been for us.

On Christmas Eve we thought Mom's passing was imminent.  We were told she hadn't eaten since earlier the day before. The facility had placed her in a Bariatric type chair and she was constantly sleeping. We tried to wake her for dinner but she couldn't be awakened.

We thought she'd been given something but her records didn't show any drugs.

She awoke only when being put to bed and then she screamed and cried and called "Mama, Mama, Mama".

When her brief was changed, we saw rawness and once again had to insist a better cream was used on her buttocks. There was no telling how long she was being allowed to sit in her urine and excrement.

We weighed the pain against the possibilities medications might drop the final curtain and decided to try a very small dose of a narcotic. It was the best decision. That and ensuring attention was paid to the perianal care she was receiving.

Isn't it against the law not to tend to someone's medical needs in an SNC?  Yes. Of Course.

Report it.  We have. Ombudsman makes a call or maybe stops by. Does it stop?  Not really. If we have caring attendants, and there are some, it's better for Mom. If they're not, Mom bears the burden of what daughter and I consider to be neglect.

Why isn't something done about this?  Several months ago the facility went through five days of "extensive" investigation by the State. Called before Christmas Eve and Mom's further decline and was told by the Hotline they were "interested" due to several reports.

Anything happen?  Haven't seen anything. After all, we were in December; holidays were coming; surely this was something that could wait????

And so more challenges go to the bottom of the stack in the annals of Missouri's "investigating" Skilled Nursing Faciliites. Or so it seems.

Death doesn't take a holiday.  Two more passed before Mom started another LBD advancement. A lady in an adjacent room is also following the same pattern as Mom; she's always sleeping her husband says; can't get her to eat, he says

How's Mom a week later?  She had a "recovery", being able to communicate and the day after Christmas really started to eat and seemed to be "coming around". Wonderful story to share in the next entry that will live long after Mom in our hearts.

Well, Mama, you made it into 2014. It's the year that marks 100 years from your birth in 1914. At times you've told me recently you celebrated your 100th birthday earlier in the year of 2013. If that gives you joy, that's fine. You've always said we never know when our time is coming and as always, you've erred on the side of not being overly hopeful and always simply accepting what life hands out and so you said at your 99th birthday how next year would be your 100th --- if you made it that far.

Mom seems to be in three day cycles: one day not good, one day seeming to be coming back, one day seeming to be "with it" and participating including some communication and ability to eat and use a straw (a skillset we thought might be lost as putting one in her mouth and telling her what it is didn't provide any action or results Christmas day but did the day after).

She's still very strong, though. Unbelievably so. I received a personal demonstration a couple of nights ago. More on that in my next entry.

The merry-go-round appears to be slowing, the hills on the roller coaster seem to be moving towards the final exit. The riders are controlled by the ride and can only hang on and go with the flow. 

Wednesday, January 1, 2014

More About The Challenges of Toileting with LBD/Dementia

LOOKING BACK:  As a New Year begins, I'm going through some previously started entries that I moved past possibly because life offered more challenges in other areas.

My New Year's Resolution for 2014: Publish those "saved drafts" and continue to detail life with LBD as our three generations of women travel this ever winding road.

The entry below was started in May of 2013; that's about seven months ago. Over the following months we went through many more incidents and as Mom's LBD advanced at what I see as a more "rapid" pace, the incidents of UTI's became more and more frequent.

Do I feel the frequency of the UTI's were a part of the advancing LBD?

Yes and No. Some possibility of changes in brain ability regarding continence are most probable. However, cleanliness of the areas where these bodily functions occur and ensuring there is no cross contamination when wiping is very important.

Aides do the toileting; seldom does an LPN and to date I've never seen an RN if one is actually on duty, do the toileting.

Toileting procedures we've observed vary according to the person assisting. Another challenge is the Aide or other assistor who sees Mom as far more capable than she actually is and so let her "take care of " her needs.

Question:  Who gives the showers?  The Aides. Who checks the resident to ensure they're "clean" especially in the perianal area?  Wouldn't this be a good time to check the more "capable" residents especially if they show signs of pain such as behavior that is "upsetting" when people approach them to assist with a "daily living" procedure?

Many Aides make sure the resident is on the toilet and then proceed to leave them for time periods of a few minutes to ten or fifteen or more -- waiting for the resident to "put their light on".

This is interesting with LBD especially since abilities to remember and follow procedures vary so widely during the course of even short periods of time. They may see the string to pull or light to press and even attempt to press it but don't have the ability to ensure they've actually made the connection.

Then there's the challenge of who's available to answer the call light.  If an Aide is in another room, she/he cannot see the call light. If they're on break, they can't see the light or hear the calls of someone getting more and more desperate to be "helped" to the bathroom.

No one should have to wait twenty minutes to be taken to the bathroom or removed from the toilet seat.

Of course they're going to try to go themselves. Since early childhood we've been trained it's wrong to wet or dirty our pants and Mom's generation even believed in spanking the child who did this after a certain age.

Memories live long inside our brains; even inside the brains being attacked by Lewy Body Dementia and Alzheimer's. If a Dementia patient "remembers" a punishment for having an "accident" couldn't they respond by trying to get away from the person who was going to "check them" having the memory and "feeling" they'd done wrong and might be punished.

Reasoning is not possible with LBD. It's one of the early losses with the disease and as the disease progresses extends into more and more areas of life and living. This has been our observation and info on many respected sites for LBD awareness cites this inability as an early warning sign/symptom of LBD and other Dementias.

Here's what I wrote last May:

"Day before yesterday the SNC facility LPN assigned to Mom called while I was working. Mom was screaming, pulled the hair of one Aide and was hitting. Mom has had continuing UTI and other infections she's been on again off again various antibiotics to try to eliminate/control this infection.

As usual, there are no notes about when it happened or what actions might have been attempted Mom might react negatively to. Sadly, the facility does not understand how real Mom's hallucinations are and that even though they believe she "knows" them, she might see them as someone else.

Fear about falling; probably even feeling as though she might be falling due to inner ear changes and balance issues so prevalent with Lewy Body Dementia are certainly possible.

Then, too, their way of "servicing" her when she needs to be toileted might be confusing or upsetting.

Without the ability to understand time and being incapable of consistently "knowing" when she needs to go or when she's "finished" (a constant question as the Aides want to "get done" with her and move on to something or someone else), she may react negatively.

Yes, these actions/behaviors may be or seem socially unacceptable. Yes, they can be interrupting. Yes, other people have the right not to feel "threatened".

But a call from the Floor Nurse telling me they didn't know what to do?

Isn't that why Mom's living in a specialized Elder Care Facility/Skilled Nursing instead of Assisted Living or on her own? 

Isn't that why the State of Missouri said she would be "safe" when they visited my husband in the hospital when he was critically ill and disregarded wearing gown and mask and probably brought in an infection that eventually took his life? 

We see the call as another attempt to ensure we're aware Mom is becoming a "problem" and therefore their recommendation for using some form of "medical control" in the way of a drug to "alter her behavior" is necessary.

At Care Plan meetings this has been the Nurse Manager's (the dayshift LPN in charge of the floor) constant suggestion.

We, of course, stand firm on the issue of not drugging Mom.

We've seen others drugged and how they're constantly sleeping and when awakened often become combative until once again they're "put out" because of this "unacceptable behavior".

Mom never believed in the use of drugs and to this day is on only one plus some eye drops by prescription.

Most importantly, read about LBD at and see how Dr's and noted Medical Facilities warn about the use of many antipsychotic (read that as behavior modifying drugs) are dangerous for Lewy Body Dementia patients and can even result in death.

Skilled Nursing Center. Round the clock care. Medical care. Necessary and needed by the residents who cannot manage their healthcare needs on their own or with other assistance in the opinion of ...... Therein lies a real question; the individual, caregivers, POA's, Guardians or even the State?

So who is responsible for clear and accurate reporting on these residents and their needs?  Where are the systems and procedures using computer generated note taking about incidents and care administered? 

Have you checked out your facility's actual computer program used for purposes of recording caregiving?

Not just the one at the Nurse's station but any that might be on the walls near the patient's rooms; they might be two different systems with varying levels of ability to enter information from simply entering a "yes" or "no" to more details.

And, who reads these entries and ensures they're more complete so accurate Care Plans can be made?

What about Mom's rights and the rights of so many in our Skilled Nursing Facilities who are being treated by uninformed, untrained Aides and other Staff?  

Doctors and everyone who manage care for our elderly need continuing education concerning adjusting to behavior modification and adjustment without drugs.

Do you know how much "ongoing" education is done by your facility? How about the "staff" who serve your loved ones? 

If the facility uses a Temp Service they're probably not required to go through any specific training except what may be required by their agency. The more Temps, in our opinion, the lower the quality of service the facility provides.

On this journey with Lewy Body Dementia, I'm repeatedly reminded as I see Mom's behaviours, of similar types of socially unacceptable language, actions and activity parents often experience with children of varying ages.

Numerous books have been published, several people have risen to the ranks of "experts" in Child Psychology and movements have been popular with directives on how to raise children from spare the rod and spoil the child to extensively permissive attitudes of let "Johnny" or "Jamie" freely express their feelings and do whatever they chose as that's how they learn.

Where are the books and manuals on Eldercare that adequately address these changing challenges of growing older? Anyone have recommendations; we'd love to add a list to the site.

In recent years, the trend has been "medicate, medicate, medicate" our children. It's also been medicate, medicate, medicate our elderly.

After all, why should others be "inconvenienced" or their lives "disturbed" by someones mental challenges? 

Once upon a time in the US we hid children with mental challenges, especially visible ones like Downs Syndrome; some were shipped off to institutions and others "kept at home".

Thankfully, some parents joined together and created organizations and even lobbied for Special School Districts and times changed.

When will we change the treatment and facilities for our Elderly whose population of the "very" elderly, those over 85 is increasing more rapidly than any other age population in the United States?

Since just before Mother's Day, Mom has been treated for a UTI. Yes, another one. She's been "cross contaminating" by wiping from back to front and that's part of the challenge. The facility could provide her with flushable wipes or assist her in the process (the same way we parents worked with our smaller children as they were "toilet training") but that takes time and also money.

In our opinion, one of our greatest challenges as a society is recognizing the high cost of not taking the more beneficial actions needed in assisting and working with the Elderly in our Nursing Homes/Skilled Nursing facilities.

The UTI apparently expanded into her lower intestine where it remained and regular administration of antibiotics for UTI did not completely eliminate.

(NOTE: In the past few weeks, in the month of December, 2013, we just went through this again with two hospital visits back to back; the second time the hospital ran further tests and discovered a Vancomcyn resistant bacteria.)

That's another entry as to how your loved ones return to their Skilled Nursing Center and although they may have been isolated in a hospital setting they'll be put immediately back into a room they might share with another "weak" elderly person and into the community at large. Here's to a better 2014 for our Elderly!