What Mom's Lewy Body Dementia Taught Me: #2

It has been a while.

During this time I needed to ponder, mull, muse, think, and consider all that has happened.

So, here’s what I can add at this time:

Early Signs of Lewy Body Dementia aren’t really visible unless you are vigilant.

This doesn’t mean you keep someone under constant supervision, but you learn, you observe, you begin keeping a journal and look for the signs.

With Mom, the signs weren’t that obvious.  We thought it was just the regular aging process, but in reading her journals I was hit with some realizations that made me begin to see what I didn’t see:

1. Her handwriting began to deteriorate.  She had a good style of writing - sometimes it was a bit difficult to decipher, but one could usually understand it - crisp and clean.  Artistic, in a polished way.    However, between 2000 and 2003, her writing began to lose its balance - she didn’t stay on the lines, the writing began to appear more fractured and frantic (much the way our grandmother began to write when she was in the early stages of Alzheimer’s).  The progression went in and out until it seemed rather regular - but in comparing the styles, it was obvious something was amiss.

2. Her sense of balance began to drift.  Mom began having accidents - she fell several times after 2002, once scraping her face, other times just plain losing balance.  Her journals indicated her unsteadiness and her fears - but she wasn’t long-winded about them - perhaps because she didn’t really want to acknowledge them any more than just to jot them down.  This also included her falling asleep at the wheel on Hood’s Canal just south of Brinnon, where she hit the guardrail but awoke in time to get back on the road.  A policeman witnessed this (I remember her calling me) and had the EMTs check her out - they recommended her seeing a physician at the ER, but she declined, and finished driving home after some hot coffee.  After that incident, she made regular stops on her trips from Portland to rest.

3. She began to feel more tired and slept more than usual.  By 2004 she was writing that she was oversleeping nearly every day, and she tended to doze off in her chair in front of the television around 9ish.   Reading through her journals, I was weary from all the activities she performed on most days - albeit good that she was busy, but she did an awful lot!  Again, we attributed this to her aging rather than anything else.
4. She was nauseated a LOT!  and couldn’t shake that feeling.  However, Mom had some medical issues with staff infections in her leg (from a 1978 hiking accident at Silver Creek Falls, where she - in her own words - raced ahead of the party, and then slipped and gashed her leg open).  This led to hospitalizations, lots of antibiotics, and she kept believing her leg was the reason for all nausea.   Yet, it seemed as though every time I visited or saw her she was nauseated, to some extent.  Was this related to LBD?

5. She began to write about being confused more frequently - of course, there were contexts ranging from classes, people not speaking clearly, etc., but perhaps these were excuses - normal ones, mind you, but still.  There was the incident in 2008 where she demanded that her Hertz Rental Card was the Entertainment Book Card, and couldn’t see the difference...She was tired, though, I thought, so it slid to the back of my mind.

6. She began to walk less and less - it hurt her feet and, once again, she tired more easily.  She was able to push herself on some hikes, but then in 2003 she began to find herself taking more rests on regular hikes - the more arduous ones I understood.

7. By 2008, Mom was shuffling and not able to walk quite as well or as much.  She hid it, and she went with it, but it was taking a toll on her.  This was the Parkinson’s symptoms.  I recall walking from the ferry in Victoria to Craigdarroch Castle, as Mom didn’t want to wait for the bus (impatient lady).  She was exhausted after only a few blocks.  After we arrived, she stayed downstairs and rested - then, when we left she was at loose ends (although the walk was downhill) by the time we had lunch atop the Sticky Wicket.  By this time, too, she didn’t want to walk very far.  For a regular hiker and pickleball player, this was rather odd.

Now, taking each of these individually, there might not be much to consider - but having them all in a lump it gives pause to realize we had evidence but no way to understand.

Perhaps this might reach someone who could begin taking these into account, so they might be able to stave off progression for a bit until some of the latest studies have committed results.  Who knows.

Lessons of LBD Mom's Journey Has Taught Me #1

When we leave this body we have a hope there is a legacy; something others take with them that allows you to live on in one way or another - something meaningful that lasts.  The journey with Mom was, at times, quite difficult, but it was a journey with mileposts, poignant moments, and lessons that will last.  What are those lessons?  Let’s start from the beginning:

1.Doctors Don’t Understand.

As Mom began to enter the disease, long before her diagnosis, we assumed she was simply growing older and more feeble minded.  Her confusion, exhaustion, lack of connectedness, and vagueries gave us something to mull, rather than to begin an investigation into what was really going on.

There seems to be a lackluster effort by the medical community to acknowledge anything might be amiss with the elderly.  They approach it rather coldly and without much passion.   Yes, there’s a story to go along with this:

It was summer of 2012 when Mom phoned me before I drove up to Port Angeles to visit.  She was concerned, as she had toddled off for one of her walks, and less than a block later she began to experience dizziness to the point of nearly fainting.  She returned home and sat down until it passed.  She didn’t seem to believe it was something she needed to phone her doctor to relay, but she was worried, nonetheless. 

     When I arrived I phoned the doctor’s office and was connected to Nurse Ratchet’s mentor.  I explained what had occurred the day before with Mom and told her we wanted to make an appointment for that day to see the doctor.  Nurse Igor asked, “Is she still having troubles?” I told her she wasn’t now, but there may be an underlying complication that causing it, and we wanted to have it checked out.  “But if she’s not having any issues now, why would she want to see the doctor?”  I explained myself again, using simpler terms - hoping that, perhaps, she wasn’t really understanding.  “I still don’t understand why she would want to see the doctor if she’s no longer experiencing problems?”  I tried again, expressing that I was concerned that if there was something wrong with Mom, I would rather find out earlier rather than later; I wasn’t going to be lax enough to allow her to reprise the event on my watch.  “I guess I’m just not understanding how the doctor would be able to help you.  Why don’t you call back the next time it happens.” 

“Fine,” I said, “I will simply take her to the ER and have them check her out.”

“Why would you take her there?  You’re not making any sense?  I said we would see her when she has another event.”

“Are you really this ignorant? I want to be sure my mother is okay, and there’s not going to be another event.”

“And why would you take her to the ER?  We won’t authorize it.”

“Listen here, you stupid b+++h!  I’m taking her there.  If you had one ounce of intelligence you’d understand where I’m coming from!”  I hung up.

A few minutes later, we were heading out the door to the ER when the phone rang.  It was Mom’s doctor. 

“I understand you had an issue with one of my staff?”

“Perhaps.  I may have lost my cool.”

“What’s the issue?” asked Dr. W.

I explained the phone call.  She didn’t get it.  I just hung up and told Mom I needed some air to calm down. 

We drove to  the ER. 

They gave Mom some tests, including a scan.  The intern smiled at me when I asked if they found anything of note.

“Nope.  Just the typical degeneration of the brain that goes with most forms of senility - she is at that age, you know.”

“So, you did find something?  Could what you say is ‘degeneration’ have caused her dizzy spell?”

“I don’t know.  All I know is she’s fine.”

We left, but Mom felt better, but there was still some underlying tension.

The next day she had completely forgotten all of it.

From what I understand now, this was the beginning of the noticeable symptoms.    However, looking back at it now, it was odd that Mom didn’t argue or fight with me over this - she was as worried as was I.

Oddly, both her former physician and this one were worried about Mom driving.  So, rather than make a call and demand she not be able to drive (as would be the safest and right thing to do) they kept phoning me to figure out how to keep her from sitting behind the wheel.  I admonished them both for complaining to me about what they should be doing.  And, much to their astonishment, when Mom went in to renew her license (at age 82)  she was renewed without comment or complication - the state of Washington simply gave it to her!  I was, to understate my feelings, dumbfounded.

Mom was put on Lorazepam, which she declared to be her “happy pills”.  They seemed to make her feel much better.  She found herself addicted to them - but as she was so secretive about her dosage, etc., there wasn’t any real way for me to  understand just how affected she was. 

When her friend, Phillis, took her to the psychiatrist, her prescription was dropped and she was put on valerian root.  This actually seemed to be beneficial - she was calmer, less anxious, and well-grounded.  She then went to see her new physician who took her off the holistic and back onto Lorazepam, as Mom wanted this for the effect. 

The effects of the valerian root caused Mom to relax, for the most part.  She seemed more in control; there weren’t the many phone calls every day as there had been on the other medication, nor did she have the amount of confusion.  So, when the doctor changed the meds back, I wasn’t very happy, although Mom was elated.

In the winter of 2013, we discovered Mom had gone through a 2 month supply in 3 weeks, only to have the doctor refill the script (her actual doctor was on vacation, so this was her substitute’s doing, but still - don’t they keep and refer to records to stop this sort of shenanigans?).

My concern was that Mom was having complications associated with the medications, which was why I appreciated the psychiatrist’s change of meds. 

To go back a little earlier - to Christmas of 2010, Mom and I had a consult with her then physician (she liked to fire them when they brought up issues like her driving, or expectations that she would visit a psychiatrist).  I was worried that the Lorazepam was causing her delusions (yes, she had them back then - believing we were spending Xmas at MY house, as we sat in her dining room eating breakfast and looking out to her garden).   Mom sobbed the whole time - she was confused and worried. 

The doctor told me that she needed to see a psychiatrist first, and then he’d like to recommend a neurologist for her.  We agreed (I had thought) his office would phone me with the information so I could take Mom.  Nope!  Despite my power of attorney they never once phoned.  Instead, they called Mom. Mom rejected the thought of the psychiatrist because she believed we (all the sons, friends, relatives, etc) would go into a room and talk about her while she remained in the waiting room.  To her this made sense, and no matter what I said it never changed.  So, let’s just say that because the doctor didn’t follow through with what we believed to be his obligation, Mom wasn’t able to see anyone until her friend, Phillis, convinced her and got her in - in 2012.   God Bless You, Phillis!

Now, the next tale is the physician in Portland who told me that Lewy Body Dementia was just another name for Alzheimer’s.  That didn’t go over well.  Let’s just say after my reaming she ran to her office and began researching.  Funny how threatening malpractice can motivate.   We dumped her then and there.

Next came her visit to the ER last summer (2015) for a Temporary Loss of Consciousness (T-LOC).  Apparently, the doctors there hadn’t really delved into Mom’s history of LBD, where she was sent from, and what was going on - they just told me it was just “one of those things”! And that she’d be just fine. 

Well, after that day, Mom wasn’t going to be herself any longer - that was the point of major transition. 

So, you see, the medical community hasn’t really caught on.  Thankfully, we were able to begin working with Dr. Satterfield at Providence, a marvelous gerontologist, who worked with Dr. Borroughs, her neurologist, to help Mom on her path.  She understood the changes, the problems, and we were able to form a partnership that worked. 

Today, one must also have an HIPPA  release form, which is free (click  on the link).  Many clinics have their own, but if you have this one handy it should help. 

You must be able to challenge your doctor when you don’t believe things are correct, or if you believe they are in error, as well.  Remember, You pay THEM!  They work for YOU.  They have years of schooling but still are always learning, just as we are.   They don’t know everything, so if you can enlighten them - do it. 

Also, if they seem rather dense on the subject of dementia (not understanding the varied types), then ask for a referral to a gerontologist and a neurologist.  Don’t worry about their feelings - unless those are more important to you than your or your loved one’s health.  They’ll get over it.

So, I guess this means I’ll have more posts on lessons learned, just to help those of you out there for whatever reason you’re reading.

God Bless and Stay Healthy!

Urinary Tract Infections and Problems Associated with Dementia

So, I guess I’m back.  

Mom had a lovely funeral, and I can’t say I won’t miss her - part of me feels vacant.  Yet, there is something that seems to be surrounding me that makes me wonder if she isn’t still about - in spirit.  I guess I’ll take that - it’s comforting to know she’s watching out for me.  

There are so many changes happening in the dementia field, at this writing, and I’m hoping to keep up, especially on my Google+ page for LBD, so there may be more answers in the near future, but cures?  I’m not so sure.  

However, I was reminded, today, of just how a simple UTI (Urinary Tract Infection) can cause symptoms resembling that of dementia.  Seriously - something as simple as this can begin a frothing of activity that could be easily cured with a visit to the doctor and medication (after providing an urine specimen).  

I recall visiting Mom’s first doctor after she had first arrived in Portland - I would explain that Mom had Lewy Body Dementia (which I discovered soon after they had no clue what it was), and they would ask (every time) if she had been checked for a UTI.  

Why?

Because, according to the literature from agingcare.com, Urinary Tract Infections can manifest the following:

• Confusion, or delirium-like state
• Agitation
• Hallucinations
• Other behavioral changes
• Poor motor skills or dizziness
• Falling

Because the muscles in the urinary tract and its organs begin to weaken, so the urine isn’t as well-expelled as it is in the younger set.  This can lead to bacteria and infections in the kidneys, and bladder, and may also create some very serious conditions.  

The typical signs and symptoms of a UTI include:

• Urine that appears cloudy
• Bloody urine
• Strong or foul-smelling urine odor
• Frequent or urgent need to urinate
• Pain or burning with urination
• Pressure in the lower pelvis
• Low-grade fever
• Night sweats, shaking, or chills

Now, these are not symptoms only for those usually healthy, but also for those who suffer from dementia.  I know - Mom had had a couple of them, but they could never be sure, as she made it rather impossible for them to collect a sample; and, the elderly don’t necessarily present the fever or the night sweats/chills.  

According to the article, Sudden Changes in Behavior?  Urinary Tract Infection Could Be the Cause,   The following are examples of differences in behaviors from dementia patients (those already diagnosed), and I post them so you might have a better idea:

• “For me, falling and hallucinations always mean check for UTI”“Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
• “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
• “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
• “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”

Now, with dementia, the symptoms may manifest with greater force, as this amplifies the stress and the delirium the patient suffers.  This is due to the stress the infection causes to the body (Why do Urinary Tract Infections (UTIs) affect dementia?).  

Now, also according to the literature, patients and the elderly may have a harder time keeping themselves:

• hydrated,
• clean (more women than men suffer, as the urethra on females is close to the anus, and if they don’t wipe front to back it could cause the bacteria to enter),
• and constipation can also create a problem as the pressure on the bladder may not allow for it to empty fully.  

So, if you’ve a loved one who is beginning to act a bit oddly, you might be dealing with some dementia, but first do have them checked for a UTI.  It could save a great deal of aggrevation in the moment.  

Further Reading:

Why do Urinary Tract Infections (UTIs) affect dementia?

Dementia with Lewy bodies - Prognosis and complications

Caring Sheet #12

Nearing the End of the LBD Journey

Mark's Comments on the Phases of Lewy Body Dementia

UTI

Can You Recognize Lewy Body Dementia?

Lower urinary tract function in dementia of Lewy body type.

Symptoms | Lewy Body Dementia Association

LBD/ Capgras Syndrome and UTI's

The Week Ending 05/29/2016

What is there to say that hasn’t been said.  

On Sunday, last, I omitted that Mom seemed to be beginning labored breathing as I left.  I thought it was more my imagination than anything.  I did mention it to Leddy, who told me she’d check.

My brother and I had dinner on Sunday night and we both agreed that Mom really didn’t look as though she were faring very well - but we knew it was up to her and God to decide.

Monday morning began as a typical work day - rising, putting breakfast and coffee together, then walking the dogs.  I recall talking aloud to myself that it seemed a day that I would be receiving a call from St. Anthony’s.  

I walked the dogs, came home and read the paper.  As I was about to rise from the chair, the phone rang - it was Leddy.

“How soon can you be here?” she inquired.

“Why? What’s going on?” I asked.

“She’s in labored breathing.  I had a dream last night that I needed to be with her this morning, and I came in and found her.”

“What does this mean? Is she transitioning?”

“Yes.”

“How long do we have? Today? Tomorrow?”

“I don’t know.  But better you come as soon as you can.”

“I should be there in a couple of hours - three at the most, but it depends on traffic.”

“That should be okay.”

So, I dealt with things here and left less than an hour later.  Traffic was neurotic, as usual, here in Portland.  I was finally getting close when I received a text from Leddy: ‘Call me when you get a chance.’

I called.

“What’s going on?”

“How far are you?  Are you on your way?”
“Yes.  I’m about 5 minutes away.  Why? What happened?  She didn’t go did she?”  

“I’m so sorry,” her voice was breaking.

It didn’t hit me like a ton of bricks.  Rather, it washed over me and permeated my being.  

I phoned my brother who told me that morning he’d make it over that day.  I told him there was no need.

After calling my other brother, I also called Jean to tell her to cancel her visit for the week, as well.

I walked into Mom’s room.  There she lay, still warm.  I pulled up the Geri chair and sat with her.  I kissed her forehead and apologized for being late.  We had a nice little chat, she and I - albeit I did most of the talking - she responded in my head.  

Hospice came and helped.  Mary, the cottage manager, also offered succor.   I wasn’t sure what to do.  What were the next steps?

After a bit, I drove home and began planning and making appointments with the church, the funeral home, and the cemetery.  

By this time, word was out.  The phone began ringing (both landline and mobile) non-stop.  Somehow I managed to finish her obituary with the help of my brother and Jean.  

At last, though, there was a calm.  There began to begin a sense of knowing, a sense of loss - but this was also embedded in a numbness.  

How do I tell people about her?  How do we communicate what she had to offer and what she brought to the table for those lives she encountered?  

Much has been brought to my attention from comments by family and friends.  So, next week will bring you the eulogy, which I entrust will honor her as much as possible.

Thank you for reading and being such faithful listener.  

For her obituary, please visit:   Norma Hunt Obituary

Slumber Time! OR The Week Ending 05/22/2016

A  week of ups and downs - mostly in the middle, though.  As you know, Mom tends to rally when she goes down for a bit, and this week was no exception - except the rallies were mere minutes long.  You’ll understand as I take you through the week:

Monday:  Mom was very sleepy.  She wasn’t drinking much - but she did have half a glass of juice by the time I arrived.  She woke up and studied my face.  After a few minutes (not moments) she decided she knew me.  I gave her some juice and she finished off the glass from the morning and began on a new one.  This seemed to invigorate her.

She had eaten some yogurt earlier but spat out the fruit.  At least she was showing signs of eating!

Leddy came in and Mom looked at her and with her hand waving in dismissal, said, “Go get the table!”  Leddy and I looked at each other and I asked, “What table?”

“She knows.”

“Mom, do you know who that is?” I inquired.

“Somebody new.”

“No, that’s Leddy.”

Mom stared at me.  Finally, she asked, “That’s Leddy?”

“Yes!” responded Leddy.  

“Oh!  Go get the table!” Mom issued her command again, flicking her arm in the direction of the door.  So, Leddy left and then re-entered a few moments later.  

She was cleaning out Mom’s mouth from the phlegm  (which continued hourly all day), so there wouldn’t be any choking.  

Next, Danny, the attendant, came in with some soup.  Mom managed to eat about half of it but was apparently aspirating some as she began to cough.  At last, she told me, “No more.”  I complied.  

Next came her shake.  She drank a little - but Leddy was afraid it was too thick, so she thinned it out.  Mom still had some troubles drinking it.  We decided that we should begin holding on to her shakes so she could have them later, as well, without troubling the kitchen to make more (this was also so we could measure how much she would ingest on a daily basis, rather than at that one time).  

At one point, Mom looked at me and said, “My legs are hurting.”

“Well, try to move them and see if that helps.”

She stared at me as though I had said something uncanny.  Then her legs began to move around until they rested.  I never was able to get a reasonable response as to whether or not she was now comfortable, though.

As Mom ate, she looked at me and said, “You’re a very good son.”  That warmed the cockles of my hard, cold heart.  

She began to drift off to sleep, holding fast to my hand.  

Next, Tasha, the med-aid, came in and helped Mom with the nebulizer.  This seemed to help.

Noel, the hospice nurse, came and saw Mom.  She had nothing to say, really, except that Mom may still surprise us as her lungs were clear and that the eating may be causing some aspiration of foods.  If this continues, then there could be a problem with more food going into her lungs, and becoming infected.  This would cause a slow, painless cessation of life.

Mom continued sleeping for the rest of the day.

Tuesday, Mom was more alert in the morning, and her coughing had subsided.   They continued with the nebulizer, though.  She drank part of a glass of juice, and a little shake, but not much.  She slept nearly all day, but for that smidgen of time.

Leddy and Morina came in to help change Mom that morning.  It seems Mom wasn’t so thrilled with this and didn’t recognize Morina, so she nearly succeeded with an uppercut to Morina’s chin.  That lady got some spunk, yet!

Wednesday, Mom was very sleepy, and they were able to get some juice in her in the morning.  

Later, Connie and Jean came to pay their respects to their longtime buddy.

Dear Tony,

We checked in at 12:20.  Norma was apparently asleep in bed when we greeted her.  She opened her eyes, and we chatted about the weather, her pretty blue shirt, what we have been doing lately.  Norma at times would try to say something, but the words were not there.

Jean asked if she could hold her hand, so she offered the right hand.  She held it for about 10-15 minutes; she did not pull it away.   Later, after her drink, Jean asked for a hand to hold;  she moved her left hand so she could hold it.

One of us (Connie or Jean) made a comment on something, and Mom said, "I'm aware of that," in a quiet voice.  She was following what we said. Another time there was a second short sentence, appropriate to the subject, which we don't remember.

Norma coughed about 6 times in a row.  They asked one of the caregivers about checking for phlegm.  She used the swab for that; it came up clear of anything.  One other time Norma coughed 3-4 times; neither time seemed to distress her at all.

Tasha came in with the protein drink and straw in a paper cup, asked if Jean would like to offer it to Norma.  So she did, and she used the straw willingly.  She offered the drink several times, with a few minutes in between.  After Norma said she did not want any more,Jean set it aside.  She had drunk close to half of the "shake."

We felt that Norma was awake all the time we were with her, 1.75 hours.  Most of the time her eyes were closed, but she was still awake.  Connie had brought a Columbia magazine showing beautiful artwork in a new shrine in WA, D.C.   Norma barely looked at it, then held it for a while. Connie left it with her; if you see it, take it home to enjoy.

Norma was more awake and alert than in the past two (?) visits we've made. She seemed to be comfortable.

She was much better looking than in that last picture in  Sunday's post.

This missive illustrates how attentive Mom was when I was there Monday.  

Thursday, Mom slept nearly all day, responding from time to time.  At one point, Megan, the med-aide in the evenings, went in to check on Mom.  Mom ordered her to leave, took off her diaper (which was clean), and threw it at her.  See?  She rallies!

Friday, Mom drank some shake, and some juice, but kept sleeping most of the day.  Nothing of much interest happened that day, so I won’t bore you with no details.

Saturday, Mom drank most of her shake.  She also drank at least one glass of juice!  She also had some yogurt.  This was a little cause for a little celebration.  The staff there are so good at keeping me apprised of how she’s doing .  They’re angels!

Today, My brother beat me over to St. A’s, and he was able to see Mom alert if only for a short time.  She was able to drink a bit of juice from the cup.  

When I arrived, Mom was asleep and when she woke she wasn’t really awake.  She held my hand but couldn’t sip through the straw.  So, I sat with her, talking to her as though she could hear me (and yes, I know she could).   

I had brought in some flowers - roses, sea holly, lavender, and fennel.  I was hoping the smells might intrigue her to consciousness.   

She held my hand, adjusting her grip from time to time, but looked so comfortable and innocent.  

It’s odd how the brain works.  

So, what’s in store?  Who knows.  But whatever it is, with Mom it’ll be another adventure - in one way or another.