To Sleep; Perchance to Dream

And so it begins.  

This morning, my brother and his wife drove down from Seattle and joined me in the Last Rites for Mom.  Later, we would meet with Noel, the hospice nurse.

The Last Rite is a ritual of the Catholic Church, of which we are members.  Many, apparently, confuse it with the Anointing of the Sick, or Extreme Unction.  The Last Rites are given to those who are beginning or already transitioning from this body and dying.  So, it was appropriate that Father Pat Donahue came in and performed it.

When my brother and his wife arrived they did a double-take at Mom.  They couldn’t believe it was the same woman who was in the photo in Sunday’s post.  Honestly, she did look quite different.  She was asleep, but her face was hollowing, her eyes swollen, and her mouth gave the appearance she hadn’t put in her dentures (but she does have all her own teeth, so that’s what makes it a little alarming).  

Mom came to for a few seconds but then dropped (not drifted) back into slumbers.  

Morina came in and told us that she had spent 2 hours the previous evening spoon-feeding pureed food to Mom, just to help her eat and get some nutrition into her system.  I swear, these caregivers and workers are angels - they go far and beyond their call, and they’re always smiling and looking for more ways to improve the quality of life for the residents.  

After we’d finished with the ritual, we (Tom, Peg, and I) went out to the dining area and Noel appeared.  We discussed what was going on.  

Noel explained to us that what Mom is going through is a typical method for the body to begin shutting down.  That she won’t/can’t eat, and cannot take fluids is something that actually helps the person avoid pain and suffering.  Were Mom to be re-hydrated, she would become more aware of the changes and things her body is going through and it would create suffering.  As it stands, she is in a state of delirium which keeps her from noting any of this.   Feeding her anything is fine, but unnecessary, as it will not help.   It seems as though Mom has already aspirated some food and fluids, which doesn’t help the situation.

We were also told that this transition could take a few hours, days, or even a week.  After that, though, it wouldn’t be long before the finality of her life is realized.  So, my phone is near my bed and charged in case.  

We also learned that during this period, Mom may have temperature increases and drops.  She will develop temporary fevers and then these will break and she will grow cooler.  This may be a cycle.  Her breathing, too, will be cyclical - long breaths with short ones, apneatic breaks, and then deep breaths again.  There were several patterns described.  

Mom is no longer on any medications except the methadone, which can be absorbed through the cheeks, so giving her some drops is simple.   There is no need for anything else, but the staff is ready if there is.

Jean came and spent some time with her lifelong friend (85 years!).  It was touching to see how she tended to Mom and was there to protect her.  

Now, it really has hit that each time we see her may be our last.   Luckily, there are many who have given fodder of memories in preparation for that event which seals the finality.   When that occurs, I still don’t know, but it may be sooner than we all wish. 

Stepping Gingerly On To Another Path

As you may recall from Sunday’s post, Mom didn’t seem very with it, nor was she eating or drinking.   She also began to refuse her medications - but Leddy discovered that when crushed and put in with the yogurt, Mom would take them - at least from her (Mom is fickle).  

Monday, Mom refused all meals, and they were able to get some medications into her, but she began “pocketing” food and drink, as well as her meds.  Now, “Pocketing” happens when the patient is unable to swallow as that function in the brain has begun ceasing to operate properly.  

I offered Mom some water, this morning, and she took a wee sip.  Then I tried another sip, soon after, and she took an even smaller sip.  It took a few moments for the water to find its way, and then I offered her more.  She stopped me and said, in a very weak voice, “No.  Maybe later.” And then she went back to sleep.

And so, it would seem the last steps have begun.  

Last Rites will be performed tomorrow, we hope.  There will also be a meeting with the hospice nurse, Noel.  From there we will be, hopefully, a bit better informed and prepared for the hours/days ahead.  

Hello Lewy, What's Going On? OR The Week Ending 02/14/2016

Happy Valentine’s Day!  

This was, “For Sure” an interesting week with Mom.  

Going back to last Sunday, just so you know, that after I had posted, Mom took a fall.  She was in the geri-chair and decided she wanted to get up.  Well, she did and then went down.  She was fine and not at all shaken.  So, they put her in a wheelchair.  

Rather than push on the wheels of the chair for movement, Mom used her feet to putter about.  They kept an eye on her and watched as she carefully parallel parked her chair by her room, then tried to stand up - plop! She fell again.  This time she had a bit of a bump on her arm, but still had no complaints.  So, we contacted hospice about putting alarms on her chairs.  They were there the next day.  Whew!  

Starting with Monday, Mom wasn’t really all that keen to get up, but she did in time to eat a little, then greet Connie and Jean:

Dear Tony,

We signed in just after 11:30 am at St. Anthony's to see Norma.  Her door was propped open by a wheelchair, with two caregivers in the bathroom helping Norma get cleaned up and dressed.

Jean offered to bring the big recliner-type rolling chair that was in the great room.  Bridget said Norma had fallen twice yesterday, trying to stand.  So the regular wheelchair is for her use now; it's safer.

Lettie was on duty; has been about a year since we had seen her. Lianna was the third caregiver we saw.

Norma was rolled out to the community room, looking good with her white sweater and blue jeans.  We sat at a table. Jean brought Norma the glass of red juice from her room; she had no breakfast, so, might at least drink that, we thought. She did drink that in the next few minutes.

We asked Norma if she'd had a haircut; her hair looked shorter.  Her nails had red polish, some worn off. Jean told her she will bring pink polish next visit.  Sun was shining, and we spoke briefly of the warmer weather.

Connie had brought a Wall Street Journal.  We spoke of what an interesting paper that is, and whether they had book reviews. Connie said,  “Yes, Friday or Saturday. And the delicious-looking recipes--those are fun to read.”

Jean asked Norma if she liked to read book reviews. "It depends on where they are and where I am at the moment."  Swear to God!

We asked Norma to read the first paragraph of one story, telling her, "I can't read the print from this distance."  So she read two or three sentences clearly. That was great!  Could not tell if she was taking in the meanings, but she certainly read well.  She appears to read stories in any newspaper; it's nice to hear her read aloud. Caregivers say she reads her papers.

We then morphed (is that the word?) into a discussion on onions and how we use them in our cooking.

Jean mentioned that her sister Kathleen does not like onions; but she, Jean, really likes them.  Connie told of cooking onion pieces with cheese soup; Jean told of the time my mom made creamed onions--not well received at her house.  Jean asked Norma if she likes onions. "Like him or like them?" she asked.

Norma's vision is good. When we asked if she could see the words on the bulletin board--pictures of hearts with "I love you to pieces" written on each one--she repeated the words easily.

Lunch was served, with soup first.  Bits of chicken with pieces of veggies. Without asking, Jean just started to feed her, giving mostly the meat. Four bites and no more.

Main course--an attractive plate of julienne cut string beans was next to a mound of small, thin noodles topped with a generous serving of ground meat in sauce and lots of shredded parmesan cheese.  Surely she would eat that, we figured.  Nope!  No deal there. The one bite we offered was met with the firmly closed mouth you have seen many times.

Okay--no lunch, and Lettie took the plate away, telling Norma she could have it later if she wished.

But then dessert was offered--new interest.  Did she want the raisin cookie offered or that gorgeous piece of chocolate cream pie? Three guesses.  She polished off that pie in short order--by herself.  Motivation is key.

A large colorful clothing protector had been put on Norma, to keep her sweater clean.  After she had eaten, Jean started to take it off but she wanted to keep it on. She indicated that by holding it so Jean left it alone.

During our two-hour visit Norma at times would lower her head, close her eyes and rest them; did she have little catnaps or just rest her eyes?  We could not tell.  If Connie or Jean spoke to her, she came back to us.  She always seems glad to have our company.

Norma was more engaged than in recent visits. Bridget brought three pills--one was the refused am pill.  Norma did not want to take them, but she took one at a time, with water to wash them down.

By 1:30 Norma looked ready for a nap. We said goodbye to her, and she said goodbye to us. No more of the old "I'll go with you."

The missive from the two guests illustrates how Mom has been this week.  Except----  She began rising before breakfast in a cheery and happy mood.  She might eat a part of her breakfast, then dabble on lunch, and either refuse or eat a smidgen of her dinner.  Sometimes, though, it seems as though she won’t eat the breakfast, will dabble with lunch, and eat even less dinner.  But, her spirits were up.

Yesterday, Saturday, Mom didn’t arise until around 11 am.  She ate very little lunch, then refused dinner.  She did not even want to think about breakfast!  The caregivers are discovering the art of dispensing her medications to her, as well.  They have learned (these are newer caregivers, so give them a little leeway, here) that you give Mom her pills, explain what each is for, and she’ll take them.  Simple!  Some try to give them all to her at once, and that doesn’t end very pleasantly.  

This morning, Mom didn’t want to get out of bed again.  I had told Leddy that my brother and his wife were coming to visit around 1030, so she might want to get up and greet them.  She did!  

However, this morning when I arrived, she had received a bouquet of Valentine Roses and was nodding off at the breakfast table.  My brother had left not long before.  Mom was alert when she wasn’t dozing.

“Hey there!” I said as I arrived.

She smiled.  “Oh, you’re finally here!  It’s good to see you!”

“You look very nice today.”

“Thank you!”

“Look at those beautiful flowers.  Who sent those for you?”

“You did,” she smiled.

“Did Lawrence come?”

“Yes.  He was here and spent the day with me.”

This was all through nodding off.  

Her breakfast plate looked relatively untouched, as did her yogurt, juice, and coffee.  I attempted to give her a piece of bacon, which was refused. “I want to do that myself,” she stated, while picking at her sweater.  She never did pick it up from the plate, although she did hoist her coffee cup to her lips and took a sip.  That was it.  Nothing more.  

Not much more conversation was to be had.  She wanted to nap right there.  She had used up her energy.  

We know it’s not the medication that’s doing this to her, now.  We do know that this disease is so cryptic and enigmatic no one knows what lies ahead.  

Perhaps she will be a little more alert tomorrow, as we’ve seen her go down like this before, but have an upswing in the ensuing days.  Or, she will just continue on this path of deterioration.  Only time will tell.  

Some Fond Memories

As Mom continues to decline, I am reminded through flashbacks of certain things about her.  Her defiance against certain rules (many times those of nature), her private moments of joy and play, and just some silliness that wasn’t at first…

I recall as a young lad going grocery shopping with the Mater.  She would do the week’s shopping and have a long list of items - sending me hither and thither among the aisles to fetch particular items. I was happy to do this, rather than having to ride my bike to Hillsdale or Raleigh Hills to gather items that she’d forgotten.  Many were the times I would hie myself back to where she was when I’d find her dancing behind the cart while perusing the shelves.  It didn’t matter what age I was, this was embarrassing!  Especially in the brand spanking new Fred Meyer’s in Raleigh Hills!  Once she’d realize my shame, she’d really get into it, and sometimes would try singing along!  Oh, the agony!

There were other times, as well, when I’d come home from school (in high school), and I’d enter the house quietly.  For me, there was no greater joy than to tip-toe in and startle her.  To hear her gasp and scream was a treat.  However, one day I walked in and there she was dusting the piano.  She dragged the rag over the ebony and ivory, then began dusting the keys one-by-one, pressing down on them.  She was trying to play a song!  She was humming along with the song she was attempting, as well….This brought me into such a state of shock I had forgotten my covert mission, and I walked into the living room and said, “That was very nice.”  Well, not only did I compliment her, but I made her shriek and freak out with a funky dance.  She tried not to laugh, but she did - as she chased me through the house telling me I’d get mine.  

Mom loved the beach.  If there were more going on there, she probably would have moved there years ago, after Dad died.  But the house is in a quiet and sleepy town that’s overridden with tourists and isn’t what she considered stimulating enough.  Her joy there was to be there walking along the beach and thinking.  If she’d had enough of that, then she’d be quietly enjoying a book, or entertaining friends and family visiting.  I believe she loved the solitude - just as long as she knew someone was coming eventually.  

Mom wasn’t a good follower of the rules of the beach, though.  There were times when the tide would be out far enough for us to hike around Chapman Point.  We’d go around and then spend some time on Crescent Beach, rather than driving up to Ecola and hiking down the short trail from the point to the beach (this trail no longer exists as it was finally washed out a few decades ago).  Unfortunately, Mom, the adult, would not pay very good attention to the tides.  I still recall having to swim, with the dog, through the rocks and out to the other side, closer to our beach.  The supposed trauma didn’t really last long, as we still had to hike back to the house, and there was so much more to see.  Mom called it a normal beach ritual.  I called it a warning to read the tide charts and watch the time around Mom...although she would argue that we were wrong and she knew best...so, it happened a couple more times, with Mom fighting us with the information - after all, how do you argue with the Queen?

Now, for some fun.  

Mom used to play FreeCell on her computer.  She’d play it for hours.  I mean HOURS!  Many were the times I’d phone her on Saturday morning and she’d be extremely tired.  

“Are you still in bed?” I’d ask incredulously.

“I did something very bad last night,” she would say.

“How late did you play FreeCell?”

“What makes you think I played FreeCell?”
“I know you.”

“Well….”

“How late?  2 am?”

“No.”

“Later?”

“Maybe…”

“3?”

“No.”

“4?”

“4:30.”

“You played FreeCell until 4:30 am?  You are an addict!”

“I know.  You need to come up here and take it off my computer.”

So, my brothers and I realized this was an issue.  I removed it from her computer.  This led to her dabbling in other games, but when she came to visit any of us, she would find the computer and begin playing leaving the rest of us in the wind. <sigh>

At one point, I had to re-program her computer.  So, I did and discovered I’d accidentally also re-loaded her FreeCell.  Ooops!   Mom ran into the room like a shark after a steak.  My brothers were quite unhappy, but I figure, ‘if it makes her happy…’  But then we really saw the effects of the addiction...so I removed it once and for all.  

 Then, there was the dishwasher incident.  

Now, not long after Mom tried to burn my house down she began to experience bad karma.  I suppose it had something to do with her not accepting responsibility for what she’d done; she told me she didn’t turn the stove on (she accidentally hit the knob and turned it on, catching the cooler on fire, then more happened- but that’s another story), but I should thank her for the new kitchen.  

So, one day Mom decided she was out of dishwasher soap.  So, what could she use?  Of course!  Let’s use the dishwashing soap!  

Mom had had her floors replaced a couple of years earlier.  She phoned me to tell me she had soapy water all over the floor, and more was coming out of the dishwasher.  What should she do?  Honestly, I couldn’t stop laughing.  She was beside herself. The insurance covered the cost to replace her flooring.  

Insurance also had to replace her carport after Mom gave her friend a driving lesson.  Her friend missed the breaks and went into the center posts and brought it down.  “Well, it really wasn’t her fault,” Mom stated.  “She couldn’t find the brake.”  So was the thinking of Queen Mater.  

We don’t see any of this anymore, but we can look back fondly and remember.  

How many of you remember stories of your loved ones?  Are they in writing for posterity?

Hallucinations and Their Differences and Causes in LBD

While reviewing the medications for Mom we began a discussion to remove Quetiapine from her regimen.  She has been taking the minimal dosage for nearly 3 years, and she hasn’t had any hallucinations that we’ve seen.  The doctor and neurologist are in the process of making determinations.  

I made a comment to one of the staff about this, and I was told about two other LBD patients who reside in the care facility, neither of whom I’ve had contact.  One, a male, sees kittens and tries to trap them.  The other, a female, sees children; apparently, while she is at the dining table she has been known to order these kids out from under the table and to go away.  Mom had hallucinations of people entering her home and taking things - something far more traumatic.    So, this led me to wonder whether there is a connection between a person’s own psyche/personality and what they hallucinate?

While personality may be germane to the types of hallucinatory events, the causes have more to do with the psychosis produced in the brain through increased dopamine levels (PsychCentral).

IN fact, should the patient begin to develop psychoses in the early stages of, say, Parkinson’s, then the diagnosis will become Lewy Body Dementia.  This is because the cerebral cortex and the substantia nigra are affected, while with Parkinson’s, it’s the brain stem and the olfactory bulb that holds the beginnings of the disease (Parkinson’s Disease Foundation).

 with Thanks to Bimaristan Al-Masuri

There wasn’t any research, though, that I could locate that would ascribe anything about personality and the connection to types of hallucinations - for instance, why would one person have traumatic ones, another sweet kittens, and another naughty children?  Is there a connection to their past life or psyche?  

After reading several clinical studies and scouring articles involving psychoses, hallucinations, PDD, LBD, and other assorted ailments, I began to learn something:  Usually, lesions (or, in our case Lewy Bodies) have taken hold of a part of the brain which then leads to the type of hallucination experienced - be it auditory, olfactory, tactile, or visual.  Now, I realize this has little to do with the connection of personality, but….

With LBD and other dementia patients, there are other factors taken into account for the causes of the problem(s):  Urinary Tract Infections, Anxiety, and Dehydration, for instance.  There are also other brain injuries and diseases which could lead to more prevalent hallucinations that are far more severe, but we won’t be including these today.  

Of course, this is where I’ll leave you.  There’s nothing worse than working a full day, coming in to read something and finding yourself having to re-read in order to catch all the information - that’s why I’m only going so far with this.  

But don’t you wonder sometimes?  And doesn’t this question make sense?  Perhaps I’ll do a little more digging...

Some Interesting References:

7 Strange Types of Hallucinations

Visual Hallucinations

What You Need To Know About Psychosis in Parkinson's Disease

Delusions v Hallucinations v Illusions

The Coaster Goes Down and Then A Little Ways Up - OR The Week Ending 02/07/2016

While Mom is not what she once was, she is still a force that is unwilling to quit!

The smell of Spring and new life is in the air, here in Portland, Oregon.  Birds began singing early, the sun is shining and temperatures are in the upper 50’s.  It’s Super Bowl Sunday and flowers are popping out to see who the new champs could be.  

Mom smiling for the camera

This has been a wonky week for Mom.  We had reduced her dosage of Depakote to only 2 doses per day.  However, she began trying to do things on her own, which was not very possible, given her weak abilities.  She is no longer able to complete even simple ADL’s (Acts of Daily Living) without much help.  She is now swallowing her Biotene rather than spitting it out, she refuses help from the toilet - but cannot rouse herself up to exit the room.  She can no longer dress herself, either, but refused even the simplest of assistance.  

On Tuesday, we changed her meds to 3 separate doses of the Depakote: one in the morning, one in the early afternoon, and one in the evening.  This appears to be working well.   She is more responsive, and as the week progressed she began rising earlier, eating better, and participating in more activities, although this isn’t saying much.

Wednesday, her 86th birthday, she was regaled with the presence of Connie and Jean:

Dear Tony,

It was 11:15 when Connie signed us in to see Norma.  We had brought things to celebrate her 86th birthday.

Norma was lying in bed, either asleep or just with eyes closed.  It's hard to know when she hears us (her hearing is good) when her eyes are closed.  We greeted her with a Happy Birthday hug, as well as we could hug her abed self.

Morina told us Mom had had just a little breakfast, so we hoped she would eat more lunch, especially with us there to keep her awake.  We each gave her our cards, which were received with interest and read silently. Jean set them on her dresser, where she could see them.

We held off on giving the gifts we had brought; Connie's was lots of chocolates with colorful wraps; Jean’s was ice cream with chocolate sauce.  After lunch would be better, we agreed. (Jean was ready to have some chocolates, but it was not her birthday.  Old habits die hard.)

Elsa told us they were expecting Jennifer, the shower lady, so had not urged Norma to rise and shine (Jean’s words) earlier in the day.  Besides, Norma looked quite content in her cozy bed.  Connie told Norma, "Now you are as old as I am."  Jean chuckled at that, realizing it was true. But there's old, and there's old.

We commented on the weather, a bit of rain on our way to St. Anthony's but not cold.

Connie spoke of the election news. Cruz had beat Trump in the Iowa caucuses, but she thought Rubio would come out ahead of both of them. Norma said, "I was thinking that, too." The Wall Street Journal had news of national caucuses and primaries, plus many articles  about World War II, in its latest issue.  Connie left the WSJ for Norma to peruse later.

Morina came in with a full plate of lunch, the main meal of the day. She stood next to Norma's bed, using the electric control to elevate the head section for Norma's comfort when eating.  She spoke cheerfully as she fed Norma what looked like meat at first, then other things.  We sat in the two comfortable chairs there, watching and saying little to Norma. We wanted her to concentrate on her meal, especially after so little for breakfast.

A beautiful little star-shaped cake with red frosting was for dessert.  The Dietary Dept. makes one for each resident's birthday, besides writing a Happy Birthday message with hand-drawn pictures. We were happy to see such a personal gift from them.  Norma took one little bite of the cake, then Jean set it on her bedside table.  We knew ice cream would be welcome.

Connie presented her candy gift, then set it on the dresser. Jean brought out the ice cream, kept cold with a freezer pack. Norma said, "That's very nice," as we began to feed her.  No problem there!  It was a good-sized serving, as Norma, like Jean, loves ice cream.  She tired of eating after a while; we all continued our visiting. After a while, the ice cream had melted. A straw was pulled out of a glass of juice, and our friend polished off the chocolate liquid nicely.

Stacy, a Providence chaplain, came to visit.  She had met us, she said.  She visited a few minutes with the three of us, said she's been with Providence for 16 years, loves her work. We told her about our Scrabble games in the gazebo when the weather was fine.  Jean added that Norma was a worthy opponent in that game.

Soon after that, Jennifer came in to help Morina with a Norma-shower.  She greeted Norma, and Norma acknowledged that in her own low-key way. We gathered our things, said goodbye with a promise to see Norma "in a few days." We signed out at 1:15.  It really did not seem like two hours.

The next two days, Mom was up and ready for breakfast early - in fact, she was up before the rest of the residents!  Of course, she nodded off but then was alert (which means in and out of it) for the rest of the day.

Today, Sunday, Mom had been up early, again.  She was in the mobile recliner at the table awaiting lunch.  We had a pleasant little chat, which lasted for about 2 minutes before she cascaded into drowsiness, again.  I had asked about her birthday, and she remarked that Jean would be a good woman for me to date - after all, we’re both the same age (well, 30 years really isn’t much of an issue, I suppose).  

I brought her some coffee and asked her to smile for the camera.  She told me I wasn’t very funny.  Her voice is quite weak.  Next, she asked me about “that place”.  She began the sentence several times before giving up.  When I tried prompting her, she told me to “grow up”.  Such a sweet darling, that mother o’ mine.  

Later in the day, I received a call that she had fallen.  She had tried to get out of the recliner but her legs don’t seem to work any longer.  She admitted to falling, and there were no injuries that Ledi could find, and Mom had no complaints.  

They put her in a wheelchair, and she used her feet to get around; at least she can use those.  It’s obvious her body is beginning to dwindle in its capabilities, as is her mental status.  

So, the weather announcing a new Spring brings new life.  What that means to Mom is anyone’s guess, but the roller coaster doesn’t seem ready for another upswing from where we are now.  So, it’s a question as to what lies around the next bend.

Hmmmmm

Another musing.

Yesterday was Mom’s 86th birthday.  She had a small party of Jean and Connie - friends you could only wish for, and thank God you have them by your side.  There was a cake, a small one specially made by the staff as well as a card.  Connie and Jean brought treats and cards, as well.  

Whether Mom held any delight in what was given materially is beside the point.  That the staff and her friends continued to be there for her was more than anyone could want.  Mom was in her in/out of consciousness and was, perhaps, truly unaware of what treasures she was experiencing.

After speaking with Jean, it occurred to me that there is so much we take for granted.  I find myself gazing at the stars every night and morning and just allow myself to be awestruck by the beauty in the simplicity; for it is really the simple things in life that count.

Have any of us really given thought to what it must be like to no longer experience the sights and wonders of the world around us?  To no longer be able to communicate or share an observation or two?  

What if what we heard no longer meant anything any longer, or that the singing of the birds and the merriment next door were to hold nothing of import?  

What has been lost after so much time?  The feel of certain fabrics against the skin, the ability to take a bath or shower alone and just luxuriate in the warmth of the waters?  To feel independent and read, enjoy a nice song, or the silence that allows for thought and contemplation?

This woman who once made cardboard key copies of those of the house as a child, and then helped her siblings break out from time to time hasn’t the ability to walk much; this mischievous imp who took her siblings down the side of the house via tied sheets to escape the boredom of a measles quarantine, so they could play in the yard?  That very same girl who would leap from rooftop to rooftop, climb trees, hike, swim, camp, and face many challenges with determination, is now comfortable, lost in her own thoughts and adventures.  

Does she really understand?  Does she know?  Her dreams and delusions seem to help her understand another world.  Most of this other world is full of joy and contentment.  It’s simple.

What more could she ask?

Caregiving and LBD - Why It's So Tough

Lewy Body Dementia is the second most common form of dementia, right behind Alzheimer’s.  Taking into account that Dementia is more a syndrome than an actual condition, one must note that caregiving for any dementia sufferer is quite difficult.  While one patient may have what is presumed a definitive diagnosis, there is still room for the dementias to mix, combine, or what have you.  

If you recall in my post dating April 3, 2014, I went through the differences between the various forms of dementia.  Remember, Dementia is an umbrella term used for a variety of symptoms.  when enough of the symptoms reflect a particular form of dementia on the spectrum, then the diagnosis is created.  However, nothing is certain until an autopsy is performed.  

Recently, I wrote a post about some facilities rejecting LBD patients for various reasons, some being the added amount of caregiving in relation to those with AD; the Lewy Body patients require so much more than those with Alzheimer’s.  

As stated in the article Lewy Body Dementia: The Under-Recognized But Common …  (DANA.org and Cerebrum.  10/2013), LBD is generally underdiagnosed or not properly diagnosed for quite some time; in fact, it may take longer for a clinician or doctor to recognize and understand the symptoms and put them together.  And while all this is going on, the family is struggling to understand the Parkinsonisms, the hallucinations, the body’s failing motor skills, and the other symptoms that factor into the condition.  

I can tell you, with great certainty, that understanding what is going on with the patient in the initial stages (which are actually further into the dementia’s development than we actually thought) is quite cryptic.  While Mom’s confusion may have seemed obvious, there have been instances where this was also a gambit to have family members come to visit, or to have a reason to chat.  On the other hand, no one wishes to believe their parent/partner could possibly have a mental condition that would affect them that badly.  

While we weren’t sure what was going on with Mom, her friends and doctors seemed to have the same worries.  Yet, I was 250 miles from her and working, and they were much closer - especially the doctors, who had more information and a greater proximity to her than did I, for that matter.  

Putting Mom into a facility was something her medical evaluation team had ordered.  There were no thoughts that any one facility might deny her access.  We had no clue that working with someone in her condition would warrant so much from the staff, either; we figured Mom would be high needs, just because she was - well, Mom.  However, with other LBD sufferers, it is a pattern.

According to The Gerontologist, caregiver burden amongst those caring for LBD patients is very high - due to the nature of the condition.  There is so much more than with the AD patient.  There are the sleep disorders, which do not allow the caregiver much chance to have a good night’s sleep - unless someone else is able to come in and care for the patient while they find a safe unencumbered spot that is safe and secure.  The caregiver must also deal with the hallucinations.  (Stress and Burden Among Caregivers of LBD Patients)

One man I know has a wife who sees cats in the house.  So, they both go about the house trying to catch the cats.   He finds humor in this, but it’s also becoming a great sadness for him.  Mom is on Quetiapine, which inhibits hallucinations - which for her are those of people entering her house and taking her things, or holding her hostage.   These are just some examples.  Others might see people, animals, or objects, and they are so very real to them the caregivers need to see them as well (through imagination, I suppose).

Mobility issues are also at hand.  The LBD patient can lose their balance at any given time and fall, which could precipitate other issues like broken bones and the like.  Mom, however, seems to believe she needs no help, no walker, no aide (unless it’s one of the ones she likes).  But she’s too weak to do it herself.  That’s why there is an alarm on her bed, and there is always someone close by to help her.  

With ADLs, or Activities of Daily Living, LBD patients believe they can function, but they need more help.  They require help dressing, bathing, changing, and even toileting.  However, they can also become combative.  

All in all, LBD patients are a challenge unto themselves.  The caregiving burden is greater than that for someone dealing with an AD patient, as AD has fewer complications surrounding the diagnosis.  With LBD, there are so many different symptoms and conditions on the spectrum with which the caregiver must handle, that the burnout can be even greater.  

And, let us not forget the roller coaster that doesn't allow much room for prediction.  One never knows what is next.

For More Information:

Caregiver Burden White Paper

Behavioral Problems, Activities of Daily Living and Isolation …

Lewy Body Dementia

Parkinson's Disease and Caregiving

Lewy Body Dementia: Information for Patients, Families

Lewy body dementia: caregiver burden and unmet needs

Lewy Body Dementia: The Under-Recognized But Common …

Caregiver Corner: 5 Caregiving Tips for Lewy Body Dementia

Lewy body dementia: the impact on patients and caregivers

Lewy Body Dementia