Tuesday, March 29, 2016

RePost - Where We Were 2 Years Ago....

I decided to peruse some of the older posts, perhaps in reflection of the road we’ve traveled so far.  So, I found this, and I wanted to repost it….Comparing some of the activities and insights from then (Friday, March 28, 2014) until now it’s interesting, and a little sad.  However, the girl is still hanging in there despite her lack of eating, or want of more calories (I checked - her shakes are about 200 calories, so with everything else, she’s probably taking on less than 400 a day), which demonstrates great will and fortitude!  I hope it doesn’t end with her generation...But, if you’d care to, please read on:


When Mom's buddy, Nadya, sent me the literature on LBD, I read it, but it didn't make sense.  It was too vague.  I can't say it isn't still a little vague, but it's becoming clearer as to what it is, how it manifests (at least in Mom), and what more to expect.


Lewy Body Dementia (LBD)

Lewy body dementia (LBD) is one of the most common types of progressive dementia. Lewy body dementia usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported. In Lewy body dementia, cells die in the brain's cortex (outer layer), and in a part of the mid-brain called the substantia nigra. Many of the remaining nerve cells in the substantia nigra contain abnormal structures called Lewy bodies that are the hallmark of the disease.
The symptoms of Lewy body dementia overlap with Alzheimer's disease in many ways, and may include memory impairment, poor judgment, and confusion. However, Lewy body dementia typically also includes visual hallucinations, parkinsonian symptoms such as a shuffling gait (walk) and flexed posture, and day-to-day fluctuations in the severity of symptoms. Patients with Lewy body dementia live an average of 7 years after symptoms begin. There is no cure for Lewy body dementia, and treatments are aimed at controlling the parkinsonian and psychiatric symptoms of the disorder.

Thanks to sites such as:

Among others, I have been able to process and determine more of what to expect.

Here is a portion of an article on using MRI scanning to determine something about dementia -
CT scans and MRIs are helpful tools physicians use to examine structural brain changes. These scans are useful in detecting strokes, tumors, head injury and other structural changes including hydrocephalus, which can cause of dementia. MRIs provide superior images compared with CT scans in detecting structural problems in the brain.
Some of the causes of dementia that can be detected well by an MRI include brain tumors, vascular dementia/multi-infarct dementia (dementia caused by multiple strokes), normal pressure hydrocephalus, or Creutzfeldt-Jakob disease — a type of infectious disease in humans related to bovine spongiform encephalitis or “mad cow disease”).
It can be very difficult to differentiate between types of dementia in the doctor’s office since many disorders can initially present with similar symptoms. Most degenerative causes of dementia such as Alzheimer’s disease and LBD are characterized by atrophy or shrinkage of the brain due to cell death. However, the patterns are similar so that the MRI cannot distinguish between Alzheimer’s and LBD but can provide supporting evidence that the patient’s symptoms are not due to another structural lesion. This is important because some causes of dementia such as hydrocephalus and brain tumors are potentially reversible if caught and treated early.
In the early stages of LBD the atrophy can be very subtle. In the more advanced stages of dementia, the atrophy can be quite severe. Researchers are actively studying whether the pattern and progression of brain atrophy in LBD can lead to better understanding of disease mechanisms and improved diagnosis.
- See more at: http://www.lbda.org/feature/5203/brain-imaging-for-lewy-body-dementia.htm#sthash.bzO9BB3m.dpuf    (lbda.org, 2014).  

What isn't said here is that there cannot be any true determination, really, until an autopsy is performed after death, to inspect the brain and verify the diagnosis.  


Here is an illustration of the brain.  

These are forms of dementia, to help better illustrate what types there are for all of us who are not quite sure.  
Thanks to http://www.medicinenet.com/dementia_pictures_slideshow/article.htm for all this help!  


What Causes Dementia?

All forms of dementia result from the death of nerve cells and/or the loss of communication among these cells. The human brain is a very complex and intricate machine and many factors can interfere with its functioning. Researchers have uncovered many of these factors, but they have not yet been able to fit these puzzle pieces together in order to form a complete picture of how dementias develop.
Many types of dementia, including Alzheimer's disease, Lewy body dementia, Parkinson's dementia, and Pick's disease, are characterized by abnormal structures called inclusions in the brain. Because these inclusions, which contain abnormal proteins, are so common in people with dementia, researchers suspect that they play a role in the development of symptoms. However, that role is unknown, and in some cases the inclusions may simply be a side effect of the disease process that leads to the dementia.
Genes clearly play a role in the development of some kinds of dementia. However, in Alzheimer's disease and many other disorders, the dementia usually cannot be tied to a single abnormal gene. Instead, these forms of dementia appear to result from a complex interaction of genes, lifestyle factors, and other environmental influences.

Here is a comparison between a healthy brain and one with Alzheimer's, or dementia.  

This gets a little more inside - showing what happens to the brain when afflicted.  

Here's what the little bastards look like, that afflict the brain and the neurons in Mom's head.


AT this time, here's an example of who might be at risk....If this is of help, to you, then I'm glad.

The ironic component to Mom having this is her Mother had Alzheimer's.  Our grandmother was diagnosed in September 1983 and died in April 1984.  I know this through Mom's journals, and her introspection on the diagnosis.  Mom was upset that this could have been possible.  

One of Mom's cronies told me that for their generation this was quite embarrassing, and indeed, for Mom, it is.  She will not admit there is anything wrong, although she knows it is.  My brother, Tom, and I both gently remind her from time to time (as he lives and works in Seattle, and isn't able to visit too often, but does try to make it once a month; they provide her with movies, a television - which she refuses to allow to be set up, clothes, and outings).  She understands, but then retreats back into denial within a short time.  

Mom is able to do her crosswords, pretty well.  And her good friends, Connie and Jean, come to play Scrabble with her almost weekly - of course, Mom creates rules that they try to abide by, but there are times...Thank God they have a sense of humor and quite a lot of patience.  Mom  is quite competitive, and loves winning.  I do believe, though, that she has won the vast majority of games.  

This keeps Mom's brain active and alert.  However, she has troubles distinguishing between dreams and reality.  In a letter to my father, which she wrote recently (yes, she writes letters to him, her parents, and she wrote one to her grandparents, as well - luckily I take all her mail and post it so I can catch all this) she told him I had related a family gathering in which he was there but she wasn't invited.  She was not happy and was quite depressed by this.  Well, such a thing never occurred.  

Connie and Jean tell me Mom seems fine and functional about 92% of the time.  But for me, she operates about 50% of the time in reality, and the rest is in somewhere else.  She tells stories about the family, while engaging, which are not based on fact or even remotely true.  These stories continue to grow, little by little, into miniature sagas.  

Just the other day, she began tremoring in her left arm.  It wasn't about angst or worry - it just happened.  This is significant.  I'm hoping syncope and falling are not coming soon, along with rigidity (although she has stated she has fallen for no reason, but doesn't want anyone to know).  

Well, that's all for now. I hope this was helpful and a little enlightening.  

I placed my sources at the head, in case you were wondering where to go for more information.  


Sunday, March 27, 2016

Easter Week - The Week Ending 03/27/2016

A very bright week, despite periods of gloomy clouds and some rain.   So, it seemed to reflect on Ma Mére.   Her skin shone, her eyes had some sparkle, her disposition somewhat merry.


This week, Mom ate very sparsely.  She did ingest her shakes, but very little else.  There was some hope when she did nibble a goodly amount of a snack, and once 30% of her meal, but that was probably all - aside from the shake.


Monday she spent in bed, not really wanting to get up, and they had ordered the Hoyer lift, so as to spare the aides from injury (as it took at least 4 to get her out of bed and into the chair, and just as many to hoist her back - let alone dress her!)


Tuesday, the lift arrived, and she was out with the rest of them, but not very active.


Wednesday, Jean came, alone, as Connie had an appointment and was unable to reconcile the visit with this, unfortunately.  Here is the account of the visit in Jean’s words:


Dear Tony,

I hope you and Janet are visiting Norma today.  I saw her yesterday Wednesday, for an hour-plus. I got to St.A's just after noon.

When I arrived at the great room in South Cottage, I glanced at the few ladies in their dining chairs or roll about recliner chairs. I forget the name for those; did not see Norma.

Than Iofina (Yoh-FINA) said, "There she is!" and saw a big smile of welcome from your mom. I'm sure she was amused at my not noticing her.

Then Norma said, "Where's your room?"  That was a shock;  I answered that it's in another area. 

 The caregivers there know Connie and me now, as does Danny, a new worker there who speaks three languages: English, Spanish and Italian.  He was so gentle as he got ladies settled at the table, and patiently fed them.

Danny showed me how to move the recliner chair to a sitting position,  then back to a leaning position. Simple, if you know how. With Norma sitting up, we moved her to her private spot at the head of the long, 4-table table.   When I sit at her left or right, I can help her eat.

First, on the  menu  was her chocolate protein shake, all gladly drunk thru a straw.

was busy with Norma.

The soup looked and smelled good; Norma did not seem interested but did accept six bites, all with little pieces of beef.  About 5-6 pieces of the white chicken, two bites of the boiled potatoes, 3-4 of the string beans.  Juice and water appear at every meal, I believe.  Little of those passed her lips.  Coffee was another story!   Norma happily drank most of a cup in a few swallows, then a partial refill.  A small piece of cake with frosting was gladly consumed along with the coffee.  I told Iofina that I would guess 10% for the whole meal as I know they write it on her chart.

The protein shake  would make that number higher.

Norma's nails were painted bright red, with sparkles!   I commented on how pretty I that was.  She was scratching off some polish as we talked, but she always did like to keep busy, to multitask as we say.

I asked if she would like to see some of  her cards; okay with her.  I got cards from Phillis and Nadya, beautiful bright flowers with sweet messages.  Norma read them aloud perfectly, which we still expect. A  third card, from me on her birthday,  had a note: "And you are a pretty mean Scrabble player," which brought a little smile.  

During our visit we/mostly I talked about the weather, and how it changes often.  Norma, who used to be ready for a good conversation, mostly just seemed to be content to listen. She did make some comments, partial sentences.  Her speech is clear, often quiet.

I think Norma has chosen to be with us for a while longer.  But I know that I don't know the future. We did have a good,comfortable visit.  I kissed her goodbye and said "I'll see  you in a few days," my usual  goodbye.


Jean is such a saint!  Because of her visits, and those of Connie’s, I believe Mom has been able to spend more time with us.


Now, after Jean’s departure, Morina decided to get the ladies active.  Mom joined in.  They bat this ball like thing - not quite a balloon, but something else - they confuse me when they tell me, so I won’t try to describe it to you.  I asked Morina how Mom did.  “Well,” she began, “your mother doesn’t just hit it, she REALLY hits it - HARD!”  Surprising, but good to hear that Mom still has spunk in her!


After a zesty session with that activity, Mom joined in for some BINGO.  She didn’t really play, but Jason stated that they helped her as much as possible.  Sad to think it was only a few months ago Mom was eagerly waiting for her prizes!


Thursday, Mom remained in bed.  Janet, her cousin, and I came to pay our visit.  Janet was sure Mom wouldn’t remember her, but as we entered the room, Mom greeted us from her bed.

“Do you remember who I am?” queried Janet.   “Of course, I do, you’re Janet,” Mom retorted.


We had a nice cordial visit, but Mom seemed rather tired.  So, we kept it rather short.


Soon, the director of the food program walked in with her rabbit for Mom.  However, both the bunny and Mom seemed spent of all energy, and we decided another time might be better.


I took the opportunity to ask her (the director) about the chocolate shakes.  I had brought Mom vanilla protein and was curious as to how she was getting chocolate.  “Well,” she stated, “We have several patients who are on protein shakes, so we help make them a little more interesting by adding whatever ice cream we have to them - this way they get a little more variety, too.”  Well, I’ll be doggone!  How wonderful!


Friday, Mom was up but not very spunky.


Saturday, she spent most of her time in bed and just didn’t really want to deal with much.


Today, I found her in bed, as did my brother a bit later.  For me, she seemed peaceful, glowing, cheery, but rather tired.  She would drift off calmly, and I would need to prompt her to awaken - actually I was a little frightened that she was crossing that bridge to the other side…


She drank her juice rapidly, and some of her shake, for me.  Rosa came in and began feeding her lunch, but she didn’t eat much.  I am thinking she did finish her shake, but I can’t testify to it.


When my brother came he said she was quite conversive.   They had a nice, but short, chat, and it was quite pleasant.


So, to be honest, I’m not really how long she’ll last at this rate.  She seems to be more tired - possibly from lack of eating, not hydration.  Her abilities seem kind of there, but are they?  I’m quite baffled, but at peace with where she is - as she seems to be.  That’s the blessing of Easter.

Friday, March 25, 2016

Communicating with the Dementia Patient - How To

It can be challenging, at times, attempting to have some sort of intelligible conversation with Mom.  She really does try, though, to keep the conversation going - but it’s exhausting, for her and for her visitor(s).

Many was the time I would ask if someone had visited - the response was generally, “No,” but I had known they’d come.  So, I began asking, “What did you and (visitor’s name here) do or talk about yesterday?”  This still could come with nothing, but it could also get those wheels turning.  The next attempt could be: “Did (visitor) mention (topic you know they discussed)?”  This has also worked.  

According to The Alzheimer’s Association, the more specific you can be, the better for the patient - it helps trigger the memory, which they discovered has not been erased, rather put into another location, and could still be accessed.  

Following are more tips on communicating with the patient, from The Alzheimer’s Association website:

Be patient and supportive.
Let the person know you're listening and trying to understand. Show the person that you care about what he or she is saying and be careful not to interrupt.

Offer comfort and reassurance.
If he or she is having trouble communicating, let the person know that it's okay. Encourage the person to continue to explain his or her thoughts.

Avoid criticizing or correcting.
Don't tell the person what he or she is saying is incorrect. Instead, listen and try to find the meaning in what is being said. Repeat what was said if it helps to clarify the thought.

Avoid arguing.
If the person says something you don't agree with, let it be. Arguing usually only makes things worse — often heightening the level of agitation for the person with dementia.

Offer a guess.
If the person uses the wrong word or cannot find a word, try guessing the right one. If you understand what the person means, you may not need to give the correct word. Be careful not to cause unnecessary frustration.

Encourage unspoken communication.
If you don't understand what is being said, ask the person to point or gesture.

Limit distractions.
Find a place that's quiet.The surroundings should support the person's ability to focus on his or her thoughts.

Focus on feelings, not facts.
Sometimes the emotions being expressed are more important than what is being said. Look for the feelings behind the words. At times, tone of voice and other actions may provide clues.



Going further, the successful caregivers know the following are also true:
  1. Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
  2. Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
  3. State your message clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.
  4. Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
  5. Listen with your ears, eyes and heart. Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
  6. Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
  7. When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
  8. Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
  9. Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
  10. Maintain your sense of humor. Use humor whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.



Luckily, I have learned most of these steps, but there are times when it is difficult - don’t fault yourself, just remember to breathe, and know your presence does mean a great deal - even if no words are spoken.  Holding a hand, sitting close and reading, helping do a puzzle, helping with something (anything), can mean the world psychically.

While it’s not the easiest way to visit, the above steps do give a path to avoid frustration and stress for both patient and visitor.  

For More Reading click the links below:












Tuesday, March 22, 2016

Questions on Dementia - For Ourselves

There are those cultures in which the elderly are revered and honored.  This has grown to be one of those in which the elderly must stay young, and the wisdom which may be imparted from their lips is ignored and chaffed.  It appears to be a culture of arrogance and youth, the haughtiness of knowing the world is an oyster - but was it collected during a red tide?




There are those who make up the majority, though, who know and understand that growing older is natural and something to embrace.  We all can’t keep looking as though we are in our thirties, keep our hair from our twenties, the bodies of our teens, and the agility of that very same youth - unless we have work done, and we work with tremendous vigilance to stay limber and strong.   

But, none of that will keep us from the possibility of encountering dementia in ourselves.  

What people seem to fear the most, in suffering a form of dementia, is that they will be taken care of properly.
  • Will there be adequate care?
  • Will I be forgotten by family and friends?
  • Will I receive the best medical care?
  • What are the options I can predict now?
  • Is it worth it for me to buy insurance for nursing/memory care now?
  • Do I have the resolve to “live” with dementia?

Many determine they must leave this world before confronting the effects of dementia, not wanting to place such a terrible burden on their families.   There is so much fear and anxiety surrounding the condition as it cannot be controlled; albeit, there are new treatments that have come out, but will they work?  What is the efficacy rate?  When must they begin administration?  What are the side effects, and are they worth it?

Watching Mom, her resolve to stay on this planet, and some of the statements she still makes, keeps the heart burning.  When Sharon, the other day, was hugging Mom and Mom told her, “Too much love!” It was Mom again.  That was so typical of something she’d say - you might say that she and the Maggie Smith character on Downton Abbey might truly be aligned (not in every way, mind you, but there are elements).  

Watching and reading and growing in understanding of the syndrome that is dementia, I realize that it doesn’t mean the end of life.  It changes our views and perceptions of what is around us, and how we communicate and drink in that which we find suitable.  

I have provided, below, a list of articles for your perusal.  I have also, above in the menu, listed some blogs, some of which are written by those suffering from LBD, or did suffer.  It’s interesting how the demand for answers becomes more urgent once we have the diagnosis, rather than we collect it as we live and observe.   I’m hoping this blog has helped with much of that.




Web Articles

Sunday, March 20, 2016

Changes And The Week Ending 03/20/2016

This was an odd week.  A bittersweet week. You’ll see as you read.

Monday morning, I received a call that Mom had fallen as she got out of bed.  The alarm had gone off, and the aide rushed to her room, only to find Mom, who has the ability to swing her legs and commence walking all at once, crumpled in a heap on the floor, whimpering in pain. 
It took four aides to liftt her back to bed while she complained that she was in immense pain.

This was alarming, as we couldn’t be sure if she’d fractured her hip or pelvis as she eats so little her bones may be at risk. 

She spent the day in bed, and they began giving her more medication for the pain, which seemed to alleviate it.   She ate little, except for the shake.

Tuesday, Mom was still bed-ridden.  She stated that moving was too excruciating (her word) for her to move or do much else.  This made changing and cleaning her a very delicate and lengthy process.  She still ate only the shake and a few bites of food. 

Wednesday, the hospice aide came and was able to get her into the shower!  After which, they put her in the Geri-chair and brought her out to breakfast.  I’d been hoping she’d only bruised her hip, but when I arrived and attempted to move her a little, she cried out that the pain was too much.  

She didn’t want her lunch, and barely touched her breakfast, but when her shake arrived, it was ingested - bit by bit.  Whether she actually finished it, I have no idea, but she did drink 80% of it while I was present. 

While she and I were chatting, we heard voices.  Could they be?  Yes!  It was Nadya and Sharon, from Port Angeles,  who had just only arrived and were there to spend time with Mom. 
Nadya, Mom, Sharon


Although Mom was on her pain medications, you could see the recognition in her eyes as they entered.  She was quite gladdened to host them. 

After a short visit, I led them on a tour of the facility, and then they went out to lunch, not having eaten since they began their journey earlier that morning.  They came back not long after, and visited.  Nadya fed Mom about 20% of her dinner, and then, eventually, they left with the promise to come back in the morning.
Nadya and Mom

That night, Mom began shifting about in her bed quite often - why?  You’d need to ask her.  But the alarm kept going off, keeping her awake.  So, when the ladies arrived the following morning, replete with cards, flowers, and candies, Mom was unwakeable, she was fast asleep.   How unfortunate, as this would, most likely, be the last time they would see her.  The aides put the flowers (lovely roses) where Mom could see them as she lay in bed, or when she awoke.

Sharon spoke of how vital and vigorous Mom was, and how they began to notice a decline a few years back.  Nadya, too, had noticed, but when the realization of what it all meant came, it was difficult to believe.  

How quickly time changes us!

Thursday, I received word that Mom’s injury was but a bruise, and that she was able to move all parts, again.  What a great relief.  There had been the suggestion of surgery, but that was nixed, as it made no sense, and with someone in her condition it could only make things worse. 

She was out with the others, but ate little, again, but more than usual. 

Friday was very similar to Thursday.  Mom was out, dabbling in her food, and participating in activities with her presence.

Saturday, Mom slept well, and then she ate some breakfast, but not much.  She is beginning to take her pills without question, now (she used to demand to know what each was, what it was for, and whether or not the aide was a doctor/nurse - otherwise, she could refuse!). 

Sunday found Mother nursing her juice after she’d finished her coffee.  She was peacefully asleep at the table as I walked in.  She was not at her usual table, no, she was across from where her arch nemesis usually sits.  I found this odd, but realized there must be a reason - but never heard one.  I brought in three new nightgowns for her, as the one she has seems to be too tight in the chest, even though she’s lost so much weight - go figure!

I had brought the family photo album and we went through it - pictures of Mom, her siblings, parents, and other relatives, then came those of us as a family.  She knew just about everyone in there - even most of the places they were taken!  There was one, though, I wasn’t sure who it was and I asked.  Her response?  “Look in the mirror”.  Well, that snagged that.

She was quite dopey and had no need for any more coffee.  She wasn’t impressed enough to feed herself lunch, so I tried - but she refused after the first bite of chicken, which she told me she liked. 

We worked on a jigsaw, but she moved with far less vigor than I.  At lunch time, her arch nemesis came out, cautiously eyeing Mom, then sitting across from her.  Not a word was spoken, not even through the eyes!  This is not my mother.

There is now talk of bringing in a Hoyer as it takes so much effort to lift her out of bed, and the staff cannot be stricken with back problems.  Their worry is how Mom will accept it.  I suggested they make it into something great, fun, and necessary.  We’ll see how that goes - they’ll call hospice for the order. 
a Hoyer lift.

Mom is now complaining of back problems and isn’t able to accommodate them with the changes, etc.  So, another change is that we will be switching to diapers, rather than the Depends undergarments - apparently Mom doesn’t have an issue with this, so it’s just a matter of locating them.

Her eating habits match those of another resident who just passed, but this lasted for but one week; Mom, I believe can go for a little while longer - she’s a fighter, that one is!

So, we’ll see how the upcoming week blossoms! 

Thursday, March 17, 2016

Regulations, Frailty and an Empty Vessel

Honestly, I am an empty vessel at this writing.  I’m not really sure what to write about. 


At this moment, Mom is pretty much confined to her bed.  She slept all day today due to her bed alarm going off at a great frequency from her shifting about. 


You see, Mom fell on Monday morning around 530 am, and they’re not sure, yet, if there is a fracture around her hip or if it’s simply bruised; we hope time will tell - in a few days. 


More about that in the next post, Sunday, though. 


I suppose what I want to comment on is the dilemma of regulations for care facilities.   As I visited Mom, yesterday, the facility was undergoing a sort of audit, and they seemed to focus on Mom, probably because of her fall the other day. 


I learned there are regulations on whether or not the bed’s wheels are up or down, where the side rail can be, and there need to be orders justifying the placement of such.  Wow.  Had Mom had rails on her bed would she have fallen?  Can’t really answer that - if you knew her the way we do she would have found a way to get over it.  There is great care that surrounds the use of the rail, though, as some residents could become stuck, some could do great harm to themselves, as well, which might be seen as worse than trying to stand and crumpling down, as I suspect happened with Mom. 


I received an email from someone (not naming names) who wanted to know why Mom wasn’t being tied down to her bed or kept belted in her chair.  Well, first, it’s illegal.   Secondly, it would have to be approved by a physician and we would have to prove obvious self-harm.  In other words, Federal Law Prohibits Restraints except for that specific exception! (1)


Use of restraints has been found to be the cause of the following(2) 

•Falls


•Pressure ulcer / decubitus ulcer / bed sore


•Strangulation


•Loss of mobility


•Reduction of bone and muscle mass


•Incontinence


•Constipation


•Increased stress



  So, what can they do when they have someone like Mom, to keep them from such harm?


We tried brainstorming - from mattresses on the floor (which would create an obstacle for anyone - especially those who might be trying to rush in to intervene), try the side rail, put a table out for her to balance (but if she fell and hit her head, what then?), and I, being the layperson, left the conversation for them to figure out if anything could actually be done. 


The issue at hand, though, is that Mom has become much more severely frail, due to lack of activity and caloric intake.  She has lost a great deal of weight and has no interest in doing much physically (the lack of interest and that it takes, now, at least, two attendants to hold her up while walking - without regarding the recent event). 


According to End-Stage Dementia:

Frailty

Frailty is a state of high vulnerability to physiologic stressors that places patients with end-stage dementia at high risk for adverse outcomes.14-16 Frailty involves intertwined impairment and dysregulation of physiologic, musculoskeletal, cognitive and neurologic systems.15,16 Decreased immune function, metabolic abnormalities, anemia, hypothyroidism and depression are associated with frailty.14-16 This condition is characterized by gait instability, excessive fatigue, general weakness and unintentional weight loss (> 10 pounds over the previous year), with subsequent increased risk for falls and incontinence.11,14

Frailty may be identified by routinely screening for clinical, functional and behavioral changes. Medical management focusing on the early identification and treatment of reversible pathologic causes of frailty will decrease associated complications. Exercise programs to maintain muscle strength and dietary supplementation to prevent loss of lean muscle mass can help delay further decline.


Unfortunately, Mom is, by this very definition, frail! 


There really isn’t much else to state, except to wait and hope for her to have but a bruise on her hip; were she to have a fracture, even a wee one, that could spell the beginning of the end.

----------------------------

(1)  "Can a nursing home tie my dad to a wheelchair if he has had." 2010. 18 Mar. 2016 <http://www.nursinghomesabuseblog.com/frequently-asked-questions/can-a-nursing-home-tie-my-dad-to-a-wheelchair-if-he-has-had-episodes-of-wandering-around-the-facility/>




(2)  Ibid.



(3) Harrington, CC. "End-Stage Dementia - ADVANCE for NPs & PAs." 2013. <http://nurse-practitioners-and-physician-assistants.advanceweb.com/Continuing-Education/CE-Articles/End-Stage-Dementia.aspx>


Tuesday, March 15, 2016

Late Stage Dementia and Eating Problems

Watching my mother begin to fade from lack of eating solids, I began to wonder what might be going on.  It’s not necessarily that she ain’t hungry - she drinks coffee and juice well, and she loves her shakes, but solids - not so much.  Someone mentioned using a meal replacement type drink - such as Ensure - but those really don’t have enough calories; the protein shake has just as many vitamins and minerals, as well as other nutrients and more calories, but it still isn’t enough.  


When prompted to eat some solids (other than yogurt, which she eats and then doesn’t) Mom has no interest and she simply won’t.  There are times I feel as though I should shake some sense into her, but it really wouldn’t do much good.


Then, it dawned on me - I’d heard something about this before.  Perhaps it was that as folks begin to decline they begin to dismiss foods on a regular basis.  So, I did some digging.  According to the Alzheimers.org.uk End-of-Life-Care page, this is typical with people suffering from dementia.  In fact, there is an entire page dedicated to some of the problems, with links to tips to help those who are caring for patients who are finding it difficult to chew, eat, swallow, or even find food palatable.


(If you’ve questions, please refer to the links at the bottom of the article)


The following is from the www.alz.org page on Late Stage Caregiving:
One of the most important daily caregiving tasks during late-stage Alzheimer's is monitoring eating. As a person becomes less active, he or she will require less food. But, a person in this stage of the disease also may forget to eat or lose his or her appetite. Adding sugar to food and serving favorite foods may encourage eating; the doctor may even suggest supplements between meals to add calories if weight loss is a problem.
To help the person in late-stage Alzheimer's stay nourished, allow plenty of time for eating and try these tips:
  • Make sure the person is in a comfortable, upright position.
  • To aid digestion, keep the person upright for 30 minutes after eating.
  • Adapt foods if swallowing is a problem.
  • Choose soft foods that can be chewed and swallowed easily. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup. Learn the Heimlich in case of an emergency.
  • Encourage self-feeding.
  • Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person's mouth. Serve finger foods if the person has difficulty using utensils.
  • Assist the person with feeding, if needed.
  • Alternate small bites with fluids. You may need to remind the person to chew or swallow. Make sure all food and fluid is swallowed before continuing on with the next bite.
  • Encourage fluids.
  • Because the sense of thirst diminishes in the late stages of Alzheimer's, the person may not realize that he or she is thirsty. Encourage the person to drink liquids or to eat foods with high liquid content, such as watermelon, peaches, pears or sherbet.
  • Monitor weight.
  • While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See the doctor to have weight loss evaluated.


Unfortunately, with Mater, we aren’t able to gauge her weight but for watching her clothes begin to drape and swallow her as she consumes fewer and fewer calories.  The wonderful aspect is that her attitude is cheery and she is more alert than she has been for some time.  
There is also the possibility that the fat in our bodies is a wonderful storage tank of toxins, and the more fat we lose the better we feel as our system cleanses itself; could this be what Mom’s brain is tasking her to do?  I’m not sure. 



Then, I read the article on Infections, Eating Problems Signal The End in Advanced Dementia, which isn’t very much a merry-making article from where I sit.  These such incidents, as with Mom, signal the oncoming finality of it all - although there is no real timeline (there rarely is).  
I also happened upon this article that was inserted in a Quora Digest article, it comes from the Social Care Institute for Excellence in the UK:
It may seem that the person is being starved or dehydrated to death when, in fact, they are not. In the end stages of dementia (that is, in the last few months or weeks of life), the person’s food and fluid intake tends to decrease slowly over time. The body adjusts to this slowing down process and the reduced intake. It is thought that by this stage the hunger and thirst part of the brain has now stopped functioning for most people.
The person may be immobile and so not need the same amount of calories to sustain their energy levels. Having reduced food and fluid intake and decreased interest in this can be thought of as a ‘natural part’ of end of life and dying.
Giving increased food and fluids artificially to a person who has been having a reduced intake can be harmful.
This is all so interesting.  The article goes further to state:
But Is the Person Suffering?
This is the most common concern for both family and carers, who are often unaware of why the person is having difficulty swallowing or does not want to eat or drink anymore. Explain to the family why this is occurring: that is, most people now think that a person with advanced dementia takes less and less food and fluid towards the end of life and their body adjusts so that they do not feel hungry or thirsty, and, therefore, they are not suffering. Family may think the situation is due to poor care, but a good explanation should help them understand and feel reassured.

Should the person continue with food and fluids by mouth?

Yes. People who can eat and drink – even if it is only spoonfuls of pureed food or sips of fluid – should be encouraged to do so. However, do this only if the person does not cough or choke. The person must be able to take food and fluids safely (see the ‘Chewing and swallowing problems’ feature in the Eating well’ section).
So, while I worry about her wasting away, I also know there are forces at work over which we have no control.  We never really did have much control over that woman, anyhow, but I suppose it has more to do with watching her fade with grace that is truly difficult and bittersweet.
"End-of-life care - Alzheimer's Society." 2014. 16 Mar. 2016 <https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2709>
"Eating and drinking - Alzheimer's Society." 2011. 16 Mar. 2016 <https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=149>
"Late-Stage Caregiving | Caregiver Center | Alzheimer's ..." 2012. 16 Mar. 2016 <https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp>
"Infections, Eating Problems Signal The End in Advanced ..." 2009. 16 Mar. 2016 <http://www.medpagetoday.com/Geriatrics/AlzheimersDisease/16439>
"Why do end-stage dementia patients stop eating? - Quora." 2014. 16 Mar. 2016 <https://www.quora.com/Why-do-end-stage-dementia-patients-stop-eating>